Scotch On The Rocks

Time slows for no man...

2010-03-15T19:25:00.000-07:00

It is hard for me to believe that a year has passed since my Dad departed this earth. I feel like I have been a parentless child forever...It just seems like so long ago when everything was "normal." At the same time, certain sounds, smells, songs and other random details of life take me right back. If I close my eyes, I can see everything that happened like it is happening right now...Almost like I can reach out and touch him.

I have found a new normal. Doing my best to try and take care of the estate stuff...Sometimes being successful, sometimes not so much. I just wonder if I will ever get it all together.

There are so many things that have come to light that make me so thankful. I am truly blessed with the friends and family that surround me. I am so lucky to have people to listen to me, and stand by me, and be there when I need a helping hand. Life doesn't get much better than that. All this has taught me that a lot of the material things in life, although nice and comforting, don't really amount to much. You make your own destiny, your own life. Much of how you go through life depends on how much you live it. Not too many people are capable of living in the moment all the time. But is important to try and be present as much as possible. Too often lately, I have seen news stories, known people, or have been told of friends or co-workers who were here one day, and gone the next.

The social medium has given rise to the ability to reconnect with old friends. It has also brought to light the passing, entirely too soon, of high school and childhood friends and acquaintances. I have been so awed and overwhelmed with the positive comments and support from distant friends. It is such a treasure to have people from across the years and across the miles back in my life...Even if it is just through words on a page...

So many changes, so many heartaches, so many blessings...It all comes full circle.

Garage Sale exhaustion...

2009-10-21T13:45:00.000-07:00

I cannot believe it is Wednesday, and I am still exhausted from the weekend! Granted, it was a very busy, very emotional weekend, but still...

The garage sale was a success! Planning was crazy, but having a weekday off gave me a chance to go and visit my friend Maddie, which I don't get the pleasure of seeing as much anymore. Maddie and Dennis are great friends of my folks, and would be by to visit almost every weekend when they were at Magnolia. I am so grateful for the wonderful people in our lives...Those small visits made such an impact on the lives that my parents had been forced into leading. Little rays of sunshine in an otherwise dim world...

The garage sale was really very good though! It was constantly busy, and I got rid of about 70% of the stuff I put out to sell! I am so lucky to have had the most wonderful help! I had about 10 friends there almost the whole time! It was a good thing, because I spent most of the morning in the house having an emotional break down. So, overwhelming...Admitting that this all actually happened, and indeed, they are gone. I know that sounds silly, because I have been living it, but somehow, putting all their stuff out on the lawn for people to bargain with you over your memories was really overwhelming. But I survived, made some space for myself, and a nice little chunk of change to go towards bills and such...And maybe a massage or something.

And Sunday, I attended a memorial service for my good friend's stepmother. She battled a debilitating disease for many years, and Kristin's Dad was always so devoted to her and her care. I am worried about him...I can't imagine spending all my waking hours caring for someone, and then have them be gone...I am still having a hard time, but at least I always had work as a distraction and a time-occupier...All of his kids live out of town, and he only lives down the block from me, so hopefully he will call me to go to dinner, or walk around the lake or something from time to time.

I did get to spend time with their family. They always make me feel like one of the gang. I always call them my "big-family" family. Their family is not huge, but with the 3 kids who are all married with 2 kids each, it is always loud and noisy and fun! All the little kids love each other so much and you can see how happy they are to spend time with their cousins. I just love being in the middle of all of it. So, despite the sad occasion, I was happy to get a chance to see my friends.

So, as promised a few weeks back...Some songs that make me smile...

The Climb by Miley Cyrus

This song is about how all your experiences in life are not about the destination, they are about the journey. And hard times are always there, but they are a challenge and are a part of life...An attitude very much like my Dad's...It keeps me strong and inspired...A few lyrics...

The struggles I'm facing
The chances I'm taking
Sometimes might knock me down
But no, I'm not breaking
I may not know it
But these are the moments that
I'm gonna remember most, yeah
Just gotta keep going

And I, I got to be strong
Just keep pushing on
'Cause there's always gonna be another mountain
I'm always gonna wanna make it move
Always gonna be a uphill battle
Sometimes I'm gonna have to lose
Ain't about how fast I get there
Ain't about what's waiting on the other side
It's the climb, yeah!

Anything by Lady GaGa

Now, I tried so hard to dislike Lady GaGa...I don't know, she is pretty ridiculous and I just thought she was silly...But then, a song would come on the radio and how can you not just laugh at some of her lyrics??? Here are a handful of the funny lines...

Pokerface
I'm not lying
I'm just stunnin' with my love-glue-gunning

Just Dance
What's going on on the floor?
I love this record baby but I can?t see straight anymore
Keep it cool, what's the name of this club?
I can't remember but it's alright, a-alright

Waking up in Vegas by Katy Perry

Now, I wasn't a big fan of the "I Kissed a Girl" song, but this song is too cute! It is one of the MANY possible outcomes of a crazy trip to Vegas! It reminds me of my folks and their trips all over SoCal and Nevada doing the casino tour...:)

You gotta help me out
It's all a blur last night
We need a taxi 'cause you're hung-over and I'm broke
I lost my fake ID but you lost the motel key
Spare me your freakin' dirty looks
Now don't blame me
You want to cash out and get the hell out of town

[Chorus:]Don't be a baby
Remember what you told me
Shut up and put your money where your mouth is
That's what you get for waking up in Vegas
Get up and shake the glitter off your clothes, now
That's what you get for waking up in Vegas

Anyway, there is a handful, and hopefully a higher note!

Much love!

Looking for that forward momentum...

2009-10-11T21:13:00.000-07:00

Newman is helping to get ready for the garage sale!!

Wow...This going through my parents belongings thing kinda, well, sucks eggs...I have been slowly making rounds around the house, figuring out what to keep, what to sell, what to donate...Simply overwhelming.

It is hard trying to separate emotions from the "stuff..." There are things I will keep because of the sentimental value...I came across my Mom's wedding veil, something I have never seen in person...It is not something that may ever come back out of the closet, but it is going to stay there anyway. There are other things that are much harder...Oh look, it is a beautiful golden bird statuette, that my Mom loved to display on her mantel...It is just not anywhere near my style, but it is hard to just put something my Mom loved out for sale, but it just has to be done.

So, I am as ready as I am going to be. Saturday will be the first of a few garage sales that will help to bring in some money, and help dig me out of the 2 houses full of stuff.

I, once again, realize I am so lucky to have wonderful supportive people in my life. A handful of my friends came over and helped me go through the house and grab anything I may have missed, organize it all and price it...And, they have agreed to come help me on Saturday at the garage sale. I couldn't do this without them...Their undying support is like a warm blanket wrapped around my shoulders on a cold night.

Much love.

Ch-ch-ch-changes...(Turn and face the strain)

2009-10-07T22:22:00.000-07:00

David Bowie certainly knew what he was singing about...Change is inevitable, there is no doubt about that.

I used to have a theory about my life and my happiness...I had 5 branches of my life...me, my house/possessions, family and friends, work and my dogs. As long as at least 2 or 3 of these areas were stable, I was in a good place. Well, all that pretty much went out the window in the last half of 2008. Both my parents were going through significant illnesses, my darling little dog I had for more than 10 years passed away, the plumbing under my kitchen had roots growing in it, causing sewage to flood my downstairs, and my company was sold to a Belgian beer company...Then it pretty much went downhill from there.

Things are still difficult everyday. Still trying to sort through all the legal and financial stuff, dealing with 2 houses, missing my folks every day, still being shocked to realize (several times each day) that they are gone forever, and today, it was announced that my company was sold by that Belgian brewer to Blackstone, a private equity firm.

Blackstone, a British company, either operates or is part owner of other entertainment entities, including the London Eye (a large Ferris wheel in London), Madame Tussuad's Wax Museums, Universal Studios Orlando, and closer to home, the Legoland theme park in Carlsbad, CA.

Many of their other entities are housed under a subsidiary called Merlin Entertainment. From what we are being told, they will be keeping Busch Entertainment Corporation as a separate entity. I think information will be forthcoming, but here is the latest: http://www.msnbc.msn.com/id/33210164/ns/business-world_business

Not sure what all this means, but I can only hope for the best. Needless to say, my life has been out of balance for so long, I am not sure what balance feels like...But, I still keep doing my best to make it through each day.

Change is not bad...It is just, change. The only thing that is constant...But that doesn't mean it isn't overwhelming at times.

Much love.

Well hello October!

2009-10-01T20:43:00.001-07:00

Wow...It just keeps going...Time rolls on, in and over, without even considering how it effects everyone and everything...It pushes me further from my parents, and closer to whatever lies ahead in my life, just as it does to everyone else.

October is Breast Cancer Awareness month. Cancer of any kind is a formidable foe. It is a tremendous enemy, and can effect almost anyone, anytime, in almost anyway. Breast cancer is a cause that has truly been blessed with a wonderful marketing juggernaut in the Susan G. Komen foundation, and the classic pink ribbon campaign.

Although breast cancer primarily strikes women, men can fall prey to this disease as well. It is very common...More than 1 in 4 cancers diagnosed in women in the U.S. is breast cancer. Breast cancer incidence in women in the U.S. is 1 in 8, and the primary risk factors are gender (being a woman) and age (growing older). There are many types of breast cancer, and depending on when they are caught, they are treatable, and often survivable. It is hereditary, and the risk doubles if a woman has a first-degree relative (mother, sister, daughter) who has been diagnosed with breast cancer.

It is quite amazing...The amount of money raised specifically for breast cancer research and support. There are many people out there who feel that the Susan G. Komen is perhaps "hogging" the spotlight when it comes to their efforts. They do spend a lot of money on advertising and public relations, but they also have set an amazing example as to how to go about fighting an enemy like this. The foundation has invested more than $1 billion since it's inception in 1982.

I know two women first hand battling this disease at this very moment. One of them has had her mastectomy, and is starting chemo, and the other is in the middle of her chemo and if all goes well, will have a mastectomy early next year. Please keep Elaine and Kathryn in your thoughts and prayers, and send them strength and positive thoughts.

Sadly, the key to fighting this particular disease is not really prevention...It is early detection. There have been many advances in the breast cancer story over the years. For example, routine mammography has been strongly encouraged and covered by insurance since the mid-1980's. There have also been significant advances in treatment, like the drug Herceptin, which was developed at the Jonsson Cancer Center at UCLA with support by the biotech firm Genentech, and received FDA approval in 1998. There is a Lifetime Original Movie based on this story starring (my boyfriend;) Harry Connick, Jr. It is called "Living Proof" and is a wonderful story about what Dr. Dennis Slamon went through getting this drug through funding, testing and clinical trials. Lifetime is showing this movie again next week in case anyone is interested...Friday, October 8, 8:00 p.m. on Lifetime. They are also showing another Original Lifetime Movie called "Why I Wore Lipstick to My Mastectomy" immediately following "Living Proof" at 10:00 p.m. on October 8th.

The way I look at it, any advance in cancer research, treatment, and hopefully cures, will benefit us all in one way or another. They are starting Herceptin trials on certain types of stomach cancers now.

If you have the time to volunteer, time to pray, or money to help, or purchase something pink that contributes a percentage of your purchase to a breast cancer charity, or even time to educate yourself more on this disease that is likely to directly effect a woman very close to you at some point in your life, it certainly couldn't hurt. Every bit of knowledge and every penny that goes to research is one step closer to putting an end to this disease, and eventually to cancer as a whole.

Do your part...No matter how small.

Much love.

My Grandpa would be so proud...

2009-09-30T14:43:00.000-07:00

Well, I went sportfishing for my first time ever! I can remember growing up, my Grandpa always had a TON of rods and reels suspended from the garage rafters. Now, I know he did mainly fresh water fishing, but I assume they also went out on the ocean as well.

My Krietz-Carlson family invited me to go along with them on a full-day trip. We went about 100 miles south and fished off the coast of Mexico. I was petrified of getting seasick, as I am prone to motion sickness and car sickness from time to time. So, I did my research, and invested in some ginger capsules, and ate the right things and avoided the right things, and took some dramamine just to be extra careful. I did pretty good!

I caught 3 yellowfin tuna...Smaller ones, but I was really just excited with the whole boat experience itself. I had never been on a boat where you couldn't see land at all, in any direction. It was a little unnerving...I did not know which way we were headed at most times and although I was watching the wake of the boat go in little "S" patterns, it felt like the boat was going straight...Very weird! I loved the whole process of everything...Getting the bait on board, the little bunks (I slept on the top bunk...Initially fearful of rolling off and plunging 7 feet to the floor made sleeping a little restless), the mad scramble when daylight hit and they spotted some fish. It was hard not to get trampled by everyone trying to be the first ones to the bait tank. And all that before you had a line in the water!

Once you dropped your little bait fish into the clear blue-green depths and watching him/her swim out of site, waiting, watching your line for movement, waiting for your line to zoom out signaling you had something big on the other end...All the while, being cautious of all the other fisherpeople and their lines...Don't get them crossed, and go over or under them as you follow your line around the boat. Excited yells of "fish on" when you got something on your line, and "color" when you saw the first glimmer of it in the depths after reeling and reeling and pulling and pulling, and finally "gaff" when you need one of the deckhands to come and hook the fish to bring it aboard. It was really an amazing, exciting experience! I am looking forward to next season for an opportunity to go out again.

It was an experience my Dad would have loved. I sure hope Dad and my Grandpa were smiling down on me...Perhaps they encouraged the 3 fish in my direction...:)

Much love!

My 200th post...

2009-09-27T09:04:00.000-07:00

Wow...How is it that I am writing my 200th blog post...It is so hard to believe that all that has happened can fit in to 200 blog posts. But here we are.

We did the 8th Annual San Diego Brain Tumor Society Walk yesterday. What an inspirational event. So many people, so many memories...People in the field working on the research, caregivers, survivors, friends, loved ones...And most importantly, hope.

Jay, Lynda, Rachelle and I were there representing Team Scotch on the Rocks. The walk is in such a nice place. Right next to the San Diego River, at Hospitality Point on Mission Bay. And weather wise, it was warm and humid, and the fog stayed in most of the day, which kept the sun from beating down on us.

This year, there were 570 walkers and we raised over $90,000 to go toward research.

So wonderful and inspirational. So many thanks to the donations I received. Thanks to Jay, Lynda, Margie, Rebekah and Jake, and Kristin.

And I thank everyone for the good thoughts and prayers you sent my way, and I am humbled by the hope that surrounded us yesterday...The hope for a cure to this horrible curse.

Much love.

Walking for the future...

2009-09-24T15:09:00.000-07:00

This Saturday is the Annual San Diego Brain Tumor walk again. I have gotten some wonderful and generous donations thus far, but if you have not had the chance, and would like to donate, here is the link to my team page: http://www.braintumorcommunity.org/site/TR/Events/BTW-SD?team_id=29340&pg=team&fr_id=1420 And by all means, if you would like to walk on Team Scotch on the Rocks, you are very welcome to join us!

Special thanks to Margie, Rebekah and Jake, my sweet girl Kristin, and especially to Linda, who has signed up to walk with me on Saturday.

As with any cause, the answer is research...And research takes money. I have often been thankful that someone like Ted Kennedy had a brain tumor. I know that sounds awful, because of course, I would not wish it upon anyone in the world. But, the fact that someone as powerful, influential, famous, (or infamous) as Ted Kennedy suffered from the same affliction as my Father, at roughly the same time, has brought this disease into the spotlight. It allowed me to garner greater knowledge about this affliction because of the notoriety of Senator Kennedy. It has helped to further the research, and given a platform to discuss new and promising treatments for all types of cancer. Michael J. Fox has done the same for Parkinson's...And others have taken causes that touched them through someone else...Danny Thomas and St. Jude's Hospital, Jerry Lewis and Muscular Dystrophy, and countless other humanitarians.
Although my Dad succumbed to this horrible disease, as so many do, there is still hope out there for the future. New drugs, vaccines, clinical trials, research...It all leads to longer survival times, and hopefully, sooner than later, a cure. Brain Cancer and brain tumors are equal opportunity offenders...It can happen at any age, any race, any financial status...Any race, color, creed...The prince and the pauper, and everyone in between. They do not know the cause, there is nothing you can do to prevent it. It could happen to anyone of us, and most likely, will touch you or someone you love or know again in your lifetime. We need to stop brain tumors in their tracks.

Last year, when I did this walk, it was so inspiring. Listening to those who have survived, the stories of those who have not...But the hope that resonated with each and every person there, and the camaraderie and one-ness of that group of people was intoxicating. I remember my Dad being so excited and proud of "Team Scotch on the Rocks." He was so proud and excited that we were walking in his honor...That will be with me once again as I walk on Saturday. My Dad will be right there next to me, taking every step, every breath, crying every tear, and relishing every smile and moment.

Much love.

Raw...

2009-09-16T11:23:00.000-07:00

I think one of the biggest ways grief has hit me, (at least it is most noticeable to me), is that I am very sensitive. Yes, sensitive in the way I should be, but also heightened in my senses...The days seem brighter, the colors of our world more vivid somehow. I am much more observant of the little things, moments, feelings, smells...It is like living in the moment, but so much deeper somehow.

A couple of examples...I was in Home Depot several weeks ago, and someone dropped a whole load of PVC pipes...The sound made me jump about 2 feet in the air and flinch like I had been slapped. Yes, I get startled like anyone else, but the reaction was so extreme, it shocked even me. And a few weeks ago, some of my co-workers thought I had finally fallen off the deep end when I kept talking about how clear the day was, and how the sky seemed so much bluer and the trees so much greener than normal...They said they still looked the same to them.

Really, like most things, it is a blessing and a curse. I think I want to make so much of my life to honor my parents, I may be trying too hard. But on the same token, I feel so lucky, so appreciative...Blissful over these little moments.

One of the things that has happened most recently is my observation of music and lyrics, and how there are a handful of songs that have come out in the past year where I feel they are singing from my soul. Most of them make me cry in the car almost every time I hear them, some make me smile...Here are a couple examples...

Viva La Vida by Coldplay

Basically a song about a king who has been dethroned and is lamenting about his mistakes...Now, I have never been king, and I am pretty settled on my past and how I live my life, but some of the lyrics, particularly at the beginning of the song interpret how I have been feeling over the course of the year...I feel like before this all began, I was on top of the world, and everything was good and right...Of course at the time, I didn't think that, but hindsight is 20-20...Here are the lyrics that speak my feelings...

I used to rule the world
seas would rise when I gave the word
Now in the morning I sleep alone
sweep the streets I used to own

And

One minute I held the key
next the walls were closed on me
And I discovered that my castles stand
on pillars of salt and pillars of sand

You Found Me by The Fray

Another song that cuts me to the core...I feel like it is sort of a modern interpretation of the poem "Footprints." Feeling that during the most trying times in life, God is not really giving us the answers we want. I feel like it about questioning faith and finding it again (or being found). I am sure it is about a love story, as he mentions "her" in the lyrics, but in the context, to me it is my Mom...Because she knew me best of all. I could put the lyrics from beginning to end, because they all fit, but the ones that hit closest to home are the following:

Lost and insecure, you found me, you found me
lying on the floor, surrounded, surrounded
Why'd you have to wait, where were you, where were you
Just a little late, you found me, you found me

But in the end, everyone ends up alone
Losing her, the only one who's ever known
Who I am, who I'm not and who I wanna be
No way to know how long she'll be next to me

Her Diamonds by Rob Thomas

I have heard that he wrote this song about his wife and her battle with lupus. This song speaks to me about the frustration and helplessness in dealing with someone else's pain and suffering. Watching both my parents go what they went through was excruciating, especially Mom. Now I feel that many of those around me experience much of the same. Emotional healing is a painful process for both the person going through it, as well as those who are there in support. It is hard sometimes to put into words what would make things better, when you are not sure yourself, you just know it is not good...Once again, this entire song speaks to me, but here are a few choice lyrics:

Oh what the hell she says
I just can't win for losing
and she lays back down
Man there's so many times I don't know what I'm doing
like I don't know now

By the light of the moon
she rubs her eyes
isn't it funny how night can make you blind
I can just imagine
And I don't know what I'm supposed to do
but if she feels bad, then I do too
so I let her be

And she says oooh
I can't take no more
her tears like diamonds on the floor
and her diamonds bring me down
'cuz I can't help her now
she's down in it
she tried her best and now she can't win it's
hard to see them on the ground
her diamonds falling down

I am sure that my post is a little "Debbie Downer," but it really isn't. There are other songs that hit me and have me laughing...Maybe I will write about those next post.:)

Until then, much love!

What is time?

2009-09-15T10:12:00.000-07:00

6 months...Just a blink in time...But yet an eternity. Today is 6 months since the passing of my wonderful, strong, kind, brilliant Father. Not a day goes by that I don't mourn his loss or weep that my life is somehow less without him. Yes, I attend my self-pity party on a regular basis, and although this Earth is less without him as well, I was lucky enough to be his daughter. He was my hero, my teacher, my mentor...He taught me patience, tolerance, how to love, learn and right my wrongs. To stand up for myself, to value each and every day, to appreciate the gifts and challenges that everyday brings. Because we only get one chance at this life.

One chance...This is it...One time, one body, one mind. No one glides through perfectly...There are bumps and bruises and devastating tragedies. But, on the flip side, there are joys...So many joys. Amazing people, amazing moments, amazing things to see, hear, taste, touch, feel, sense, ponder, create, appreciate, improve, invent. And I think we can learn from it all.

Many people were afflicted with Poliomyelitis...A death sentence in some cases, paralysis in 1% of the cases, and 90% of the cases, there were no symptoms at all. A promising young athlete, following in his father's footsteps, plays football one evening, unable to walk the next day...This story could have ended badly. So many people would give up, lose the will to fight, finally get so tired and frustrated and fall prey to self-pity and allow others to do things for them. Not my Dad.

Edward "Scotchie" Reed not only never complained, or used it as any excuse, he also never took it for granted. He used it to motivate him, to allow him to appreciate the things he learned, the things he accomplished, the mountains he climbed, the successes he achieved...Not only in spite of Polio, but, perhaps, because of it.

Yes, 6 months later, and I do my best to embody those qualities my Father so effortlessly exhibited, every single day of his life. I try to be strong, not for him or Mom, but for myself.

Some people have told me that I am a lot like my Dad...A higher compliment I can barely fathom. Time waits for no one. Each day that passes is another day away from being able to hug my Dad, ask his opinion, see him smile, hear his laugh. I still talk to him...Share sunsets, happy moments, funny moments, ask him to give me strength in weak moments...But, as with any loss of someone close, that ability to look that person in the eyes, tough their hand, feel their embrace, hear the sound of their voice the pain is real and constant. The ache of want can be overwhelming at times. But, in the spirit of my wonderful Dad, recognizing the pain, but not letting it take over...Allowing it to create the balance of life, is the key.

As Joni Mitchell sang, "you don't know what you got 'til it's gone," it truly makes life richer and fuller when you make an effort to really look at what we are presented with in this world. Amazing friends, beautiful vistas, tough love, silly dogs, and so many, many other personal things to each and every one of us...Make an effort to be present in your life in this world, because you just never know what it holds next.

I love you Pop. And much love to you all.

A day I had anticipated...

2009-08-26T20:30:00.000-07:00

Rest in peace, Edward Kennedy.

Senator Kennedy was always a benchmark for me in my Dad's battle. He was diagnosed about a month before my Dad, and he lasted about 5 months longer. Sadly, Senator Kennedy made it to the average survival time frame of this horrible disease...About 15 months.

It goes to show you how deadly and aggressive and unrelenting this disease is. It goes unnoticed by so many until it is usually too late. Often, headaches that most people ignore and treat with Tylenol or Advil (which Dad never had), and most of the time, seizures caused because the brain has swollen or been damaged by the tumor. Dad had a few "focal" seizures which appear that to be someone staring off. Senator Kennedy was alerted by a seizure to his tumor.

Senator Kennedy received basically the same treatment as my Father...Surgery, radiation, and chemotherapy in the form of Temodar. There is some indication that he also may have been prescribed Avastin, which in clinical trials has been shown to slightly extend the survival range.

I guess it also shows that little is still known about this disease. They do not know what causes it, they do not know how to prevent it, they do not know how to slow it very much, let alone beat it. It is an equal opportunity offender, it knows no race, creed, or age...Even Senator Kennedy, who spent his career looking out for the "little guy," and most recently, the health care bill, who had access to the best doctors, treatments, hospitals, etc...Could not beat this monster.

The only answer from here on out is research. I have resurrected Team Scotch On The Rocks for the San Diego Brain Tumor Walk on Saturday, September 26, in Mission Bay Park. It is a 5K fun walk that was very inspirational and fun last year. I would love to have as many of you as possible join me on Team Scotch On The Rocks for the walk next month. It is a very easy walk, and there is something so special about so many people coming together for a common cause that has touched them all. If you would like to join the team, or would like to support us by donating, you can get to the Team Scotch On The Rocks donation page by clicking on the following link: http://www.braintumorcommunity.org/site/TR/Events/BTW-SD?team_id=29340&pg=team&fr_id=1420

My thoughts go out to the Kennedy family, for like us all, they lost a friend, father, uncle, brother, husband, warrior...

Much love.

My new feature...

2009-08-11T10:41:00.000-07:00

Where is this summer going? I cannot believe it is August. There is still so much to do, and time is just running away from me! I am struggling so much with all there is too do. I am trying to figure out a way to delegate, but the things I want to delegate are things I need to do myself. Ugh! It is a matter of time....And that is the problem with time...It stops for no one. This brings me back to the knowledge that I need to treasure each day, and appreciate all of the gifts that are all around us. The weather has been warm and humid (for SoCal), but the sunsets have been incredible. The color of the sky goes through the most amazing array of colors...Blues, indigos, purples, with reds and pinks and oranges...Incredible!!! I struggle a little with treasuring each day because I feel that I have so much to do...But I guess I can just do all that I can, and be at peace with that...Easier said than done.:)

So, in addition to my blogging about my life and experiences, I have decided that I need to incorporate one of my true loves in life...Each week, I will be sharing a "Shoe of the Week." Most of the time, it will be a beauty from my own personal collection, but if I see something wonderful, or timeless or amazing at a store, in an ad or perhaps on a friend's foot, I may include it as well. To start out, I want to introduce you to a pair of mine. Simple, classic, but sassy...And who can go wrong with black and white. They are Joey O's...Black patent leather peep-toe pumps with a white strap and buckle across the toe...4 inch stiletto heel, Size 6.5. Yum!

Much Love!

What a wonderful world...

2009-08-04T22:39:00.000-07:00

One of the songs I had on the playlist for both my parent's memorial services was "What a Wonderful World" by Louis Armstong. I remembered that both my parents liked that song and it truly represents the amazing world and people that surround us ever day.

I just feel that the events of the past year or so have obviously had a profound effect on me. It has made me almost hyper-sensitive to most things and emotions. I think the best way to explain it, is I am scattered, but able to focus on little things all at the same time. Grief works in mysterious ways...

One of the things that has been abundantly apparent to me lately is the beauty of this wonderful city. The weather has been a little different the past few days...A little more humid than most would like (for CA), but it has really had a profound effect on the skies...The most amazing cloud formations have hung over the city like buttercream frosting....And the contrast against the amazing blue sky has been stunning. In addition to this, we are coming up on a full moon and the combination of all these things adds up to some of the most amazing, breathtaking views, and demonstrates the blessings that surround us all...

Much love!

C'mon...It's bulk food, not brain surgery!!!

2009-08-02T20:44:00.000-07:00

Well, today proved to be a challenge...Waking up with a crazy bad headache that I could not get rid of was the very worst part, for sure.

I was able to summon the strength to make a Costco run mid-afternoon...My first mistake. I needed food for the week, there was just no two ways about it. Sunday afternoon at Costco is an absolute zoo. So, here I am, not exactly on my "A" game, and I am struggling to find my membership card walking in the door, and I hear this commotion behind me. A man walks in, and directly behind him, a woman rushes in after him, followed by another man. The door employees start saying "can you believe it??? All over a parking space??? There were tempers flaring!!! Now, here I am, feeling poorly, and just shocked at the pettiness of some people...Well, that was was an isolated occurrence...Right? Not so much...

I was trying to navigate the tricky frozen food section, which is made more difficult for the tremendous crowds due to the sample carts at the end. I squeezed through behind the sample cart, and got stuck by this man that pushed his way in to a space where he could not go any further, but managed to block my path. Not in any hurry, and too headachy to say anything, I just wait...About 4 seconds, and this man in front of me starts raising his voice at the man in front of him..."let's get this moving along..." And a moment later, loudly, to his wife..."If this guy would just keep moving forward..." Now the man in front of him takes a moment from allowing the older couple in front of him to squeeze past him slowly, and turns around and says "Just one moment sir, these people are coming through." Mr. Cranky man belts out "well tell him to hurry it up!" The patient man turns around and says "are you serious?" and Mr. Cranky belts out "yah, I'm serious...Move it along!!!" The patient man turns around and says "geez, maybe you need to get back on your meds" and laughs a little...Mr. Cranky blows up and says "maybe you need to get the hell out of my way..."

Ok, really...I know it is warm outside, and in this economic downturn (yah right, not at Costco), and everyone is anxious to get home with their 72 rolls of toilet paper and 47 pound bag rice, but c'mon...Let's all have a little patience people! Why can't we all get along...

Much love.

Just me now...

2009-07-28T13:17:00.001-07:00

Well, I have been encouraged to keep up the blog, even though the primary reason for Scotch On The Rocks was to communicate updates about my parents.

So, I guess that pretty much leaves just me to blog about. Not that I am not blessed with enough wonderful, funny, happy, tragic events in my life to occupy this blog, but I am just not used to writing about myself.

So, I will commit to taking on the challenge...:) Names and identities may or may not be changed to protect the innocent...Rest assured, I do have many experiences with my family, friends, co-workers and other fairly random people that I should be able to share.:)

On a last note for today, I am so thankful for the wonderful people in my life. You guys know who you are...Near and far, related and not, there are so many of you who have held me up when I needed support, and have made every effort to help me out, even when I wasn't ready to accept it, and the kind words, love, hugs, emails and cards have been amazing. I know I can count on you to stand by me in the coming months and years, when the moments of sadness, panic, laughter and tears continue to haunt me, and cheer me along in life. Thank you so much for being there for me, and I am comforted in knowing that I will have the opportunity to try and demonstrate my loyalty to all of you throughout the years by helping you to celebrate and mourn and just enjoy what life sends our ways.

And very lastly...The photo of Dorth and the donkey...

Much love.

What a lovely day...

2009-07-25T19:24:00.001-07:00

Today we held the memorial service for my Mom...It was simply beautiful! The weather was perfect, the perfect amount of people showed up, the food was great, the stories and laughs and tears were all perfect...Dorothy would have been pleased.:)

I miss Mom, but know that she is in a better place, and she is with some pretty amazing people...My Dad, her parents who both died before she turned 25, her brothers, just to name a few.

Her service was themed in yellow, one of her favorite colors. Lots of pictures from her whole life...She modeled a bit when she was young, so, there was a lot to choose from. One of my favorites is her in a slinky (for the time) black bathing suit, standing next to...a...(wait for it)...burro, or donkey of some sort...

I am so full of joy, and sorrow, and humility and pride...I just know that despite all that there is left to do, things are as they should be.

Much love.

Long time no post...

2009-07-16T16:01:00.000-07:00

I know, I know...I haven't been very attentive to the blog. I guess I am not sure what to blog about now. Perhaps that will come in time, but for now, I am just not sure what to share on her without my parents.

What I can share is that I have decided on services for my Mother. Here is the information:

10:00 am.
Saturday, July 25, 2009
Trinity Baptist Church
1150 Merritt Drive
El Cajon, CA 92020

I think it will be a lovely service, and I look forward to seeing you all.

Much love.

Dorothy Ann Gides Reed June 7, 1936 - June 26, 2009

2009-06-27T13:35:00.000-07:00

My passionate, funny, determined, wonderful mother passed away peacefully yesterday at 1:00 p.m.

Like I said, I did not think she would make it, and although she was still with us when I arrived in the morning, it was obvious it was not for long. They had not been able to get a blood pressure reading for the past several hours, and they had the oxygen up as high as it would go.

I held her hand, rubbed her forehead and talked with her about the ball she would be going to and that she needed to go be with Dad now. Her breathing progressively slowed over the next hour or so, and she passed peacefully, much like my Dad. And now, they are together once again, as they should be.

This is much harder than losing my Dad...And easier too. I think the things that make it easier are part of what makes it harder. When Dad passed, I did not have time to dwell, because there were things to be done. I had to take care of Mom, and make all the plans, and take care of all of the details.

This time, I don't have anyone to take care of but myself (not really my strong suit in life), and I now know most of the things that need to be done, because I learned just a few short months ago. I have contacts at the credit card companies, Social Security, the cremation place, the cemetery...There is no abstract business to focus on.

Also, my immediate family, as I have always known it, is no more. Being an only child, my private family memories and rituals were amongst the three of us. And now there is only me. I know that I have the most amazing friends and family to surround me and support me, and I am so grateful for that. But there is something so final and so lonely about losing that piece of me.

Today is very surreal. But, taking a moment for myself, to relax, be peaceful, reminisce, and think about all the good times and the gifts my parents have bestowed upon me will help me to move forward from this moment.

I will post information on the service as soon as I have the details.

Much love and God bless Dorothy...May she rest in peace.

No rest for the weary...

2009-06-26T01:18:00.000-07:00

Well, it has been a very long week. My Mom has taken a turn for the worse, and I am just not sure if she is going to pull through this time. She has surprised me before on several occasions, but this time, I think, her little body may not make it.

I spent the day with her on Saturday, and she was tired that day, and she decided to stay in bed all day. She was talkative, and social and we laughed together. I even brought her a Jumbo Jack, french fries and onion rings, of which she ate most. As I was leaving, I told her I loved her, and I would see her Monday, and she told me she loved me to and to drive careful as she always does...Those may be the last words my Mom ever says to me...Who could ask for better words.

On Sunday, I went out to the cemetary for the first time since Dad was buried. I wanted to spend some time with him on Father's day, and it was harder than I had anticipated. But ultimately, other than getting ripped off by the gift shop by having to PAY for the dumb plastic vase with the spike on the bottom for flowers, it was a lovely day, and I spent about an hour sitting between Dad and my Grandparents. I then spent the rest of the day with my Aunt, Uncle and cousins bar-b-qing. It was as good a Father's day as I could have imagined.

Monday was supposed to bring the long awaited trip to the doctor for Mom. We were finally on the way to finding out what was causing all of her intestinal issues. Her appointment was for 12:30, but the nursing home called me at 11:00 to tell me that they had cancelled Mom's appointment because she was too drowsy to go. When I inquired as to why she was drowsy, the nurse on duty told me that they gave her a Ativan (a sedative) the night before and it had not worn off. Needless to say, I was livid.

About 3 hours later, the nursing home called me to let me know that they had called 911 for my Mom and sent her out to the hospital. When I asked why, they told me that she was unresponsive. So, I asked to clarify "unresponsive..." Is that different than the "drowsy" she was earlier??? The charge nurse replied, "yes," and that her blood pressure and heart rate were elevated, and she would not respond to pain stimulus.

I got to the ER, and indeed, Mom was unresponsive. They had her on a BiPap, which is an oxygen mask that helps to push the oxygen into your lungs to help you breathe. They had done a chest x-ray and some initial blood tests. Her blood pressure was very high, and at one point had gotten up to 225 over 135, which is very unlike her. When the blood tests came back, her white count was 33,ooo. This is VERY high. Normal white blood count is between 8,000-10,ooo, with 10,500 being considered elevated. Elevated white blood cells signal infection. Except in my Mom...There have been several occasions in my Mom's life when she has had elevated white blood cells, most recently, when she was hospitalized last September with the problem with her eye. They never found an explanation for the damage to her C3 nerve which caused the eye issue, and never determined why she had such a high white blood cell count.

So, that was Monday.

They did a CT scan to check for stroke and chest x-ray to check for pneumonia. Urinalysis to check for a UTI. All negative. The admitted her, and she started having repetitive movement of her right arm and leg. She remains unresponsive to touch, pain, light...I felt like the repetitive movement she was experiencing were a type of seizure, and although the doctor and nurse didn't think so, they planned an EEG to look at her brain activity, along with an MRI of her head to check again for possible stroke, and a spinal tap to check for meningitis. They were unable to do any of these tests because she was unable to remain still enough to conduct them. The past few days, her vital signs have been very stable, and it is very hard for me to imagine she has and infection that is causing her white cell count to be so high, yet, she has no fever. And when it does go up a little, the highest it has gotten is 100 degrees.

In typical Dorothy style, the doctors are baffled. We decide to pretend that all of the tests they wanted to conduct came out positive, and the doctor ordered both viral and bacterial antibiotics, anti-seizure medication, Ativan to keep her calm (her brain and body), and we decided on a morphine drip to make sure she was not in pain. We think the morphine caused her to itch, because it appeared the repetitive movements changed up a little, and she was trying to itch. So, the doctor changed it to Dilaudid, and that seems to have worked better.

So, over the past 4 days, with Ampicillin, Vancomcyn, Flucomidazole and Rocerin, all heavy IV anti-biotics, her white cell count has gone from 33,ooo to 68,ooo. 40,000 is considered life critical. Nothing is helping.

All of this, and there is also still no concrete explanation for the loss of consciousness. They did a second CT scan this morning, now that she is still, but haven't gotten the results yet. A large stroke could cause this lack of consciousness. They also sent her to get the EEG, however the ONLY EEG tech went home sick...So, they are going to try again tomorrow. I guess seizure activity can cause loss of consciousness as well...What caused the seizures will be another puzzle if that indeed is the issue.

She is still unresponsive, and no one call tell me what is wrong with her, if she will get better, if she will awake from this state...I have watched her the past 4 days, and while we have her more comfortable with the Dilaudid and Ativan, I feel she is definitely not getting better, and I feel she is declining. If this is what any possible life holds for her, to be relegated to a bed, unaware, or unable to be aware of the world around her, then she needs to be with my Dad.

When I left last night, I was fairly sure she would not make it through the night. As I left tonight, I feel the same about tonight. At Midnight, I held her hand and sang "Happy Birthday to me" and thanked Mom for being with me as the clock turned onto my 37th birthday.

I am not sure what lies in store for us. When I spoke to Mom's sister yesterday, I think she put it best..."If you cannot pray for a miracle, then pray for mercy." As my hopes for a miracle get less and less as time goes by with little change and no true answers, then I pay for peace and relief for my Mom...Freedom from the body that has bound her for the past few months...And the opportunity to once again be reunited with my Dad and everyone else that has gone before her.

I am sorry for the down nature of this post. Let me leave you with my vision...I can't remember if I posted that I visualized Dad's entrance through the pearly gates into a huge Bar B Q, full of everyone he ever knew, and everyone he ever wanted to know. With Mom, she will have a ball...A grand ball of which she will be the belle, or queen. She will have a beautiful, long flowing dress, and her hair and make-up will be perfect, and she and my Father will waltz together for the very first time. She will get a chance to Polka with her brothers Bill and Butch, and she will see her parents, whom she lost when she was very young. I can only hope my grand vision is but a mere speck of the glories that await her.

Please keep Dorothy in your thoughts and prayers, and if she is able to pull out of this, that the possibility of her recovery is only if she is lucid enough to enjoy it.

Much love and gratitude to you all. I will keep you posted on any updates and changes.

Made it through the weekend...

2009-06-14T19:58:00.000-07:00

So, with many moments of reflection and nostalgia, smiles and tears and tremendous gratitude, Mom and I made it through this weekend. With the support of each other and many wonderful friends, we not only made it through, we had a very nice weekend.

I bought some plants for my parent's backyard, and one of the plants I picked is a dahlia. It is pretty yellow and called a "Dinner Plate" dahlia. Some of the blooms are huge! I cut one and took it to Mom today, because she loves yellow! Now, with the shaved head, her head is pretty small, but this flower is bigger than her head!!! She loved it!

We ended up having a really nice afternoon today, and we went to Applebee's for their 2 for $20 deal. Mom was craving steak, so we stuck close and made a go of it. She had onion rings as an appetizer, we shared a salad, she ate about 2/3 of her baked potato and about 1/2 of her 7 oz. sirloin. She really has been eating well. I tried to take a picture of her enjoying her dinner and she could not be bothered to look up and smile long enough for a photo...So, this is what I got...

She really enjoyed her dinner, and when we got back to Magnolia, she wanted some sherbert. I am glad she is eating so much, because she is still having the intestinal issues. It has been over 2 months that she has been having this problem, and they have tried everything to discover the cause. They have pulled her off all dairy, and that has helped, a little. But she is still having this issue, and with all of the medication she is on, she should be stopped up. So, finally, they are going to send her out to a gastrointerologist to see if they figure out what is going on.

Oh, and I just realized that I have been shown a new version of hell (said tongue in cheek). I have been filing the necessary paperwork for everything, and have been told that I have a medical power of attorney for Mom, but not a financial one...So, I thought I would just get the mobile notary to come to the nursing home and get it taken care of...No problem, right? Wrong...Mom's driver's license expired on her birthday...And she does not have a California ID card. So, I am going to have to take Mom to the DMV to get her a California ID card...Oh boy, will that be a challenge. I have tried to get an appointment, and the closest one I can get is in mid-July, and I can't wait that long...So, I am going to have to try and get there as close to opening on a weekday, and hope we can get in and out as soon as humanly possible. I may call in reinforcements that day, so if there is anyone around who doesn't mind an early weekday morning, spending time with Dorth, and riding in the back seat, I will buy you lunch!!!:)

Anyway, I hope all goes well this week, and I will be anxious to see what they will want to do about her situation. I will keep you all posted.

Much love!

Celebration, reminiscing and remembering...

2009-06-07T23:03:00.000-07:00

Happy birthday Dorothy!!! Today was Dorothy's 73rd birthday! All in all, it was a good day for Mom. We had originally planned to spend this afternoon at Barona, but we had a bit of a mishap yesterday, and we thought it best to stay close to home.

Yesterday, Mom and I tried to do a little shopping and grab a bite to eat. We got to Macy's, only to have to get back in the car and go back to Magnolia so they could get a blood sample. Once they got the blood, Mom wanted to go to Coco's. We got there and she ended up taking a very hard fall in the restroom. So hard, I was sure she broke her collar bone or dislocated her shoulder. She was screaming at me and every time I tried to touch her, she screamed. So, we called the paramedics and got her to the hospital. After an x-ray and a CT scan, no broken bones, no brain injury...Just a skin tear on her elbow with a bruise, a small bump and bruise on her head, and very, very sore. Thank goodness.

It is so hard, because Mom does not know what she can and can't do. She is just not capable of determining what she is now able to do, and not to do. She was very hungry yesterday when we left the hospital, so she was feeling good enough to stop for dinner, and she had a glass of wine with dinner. She mentioned this to her nurse today, and added that she had been given 2 Vicodin at the hospital, and her nurse said that it was not a good idea to mix the wine and the pain killers. Her response was "it's ok, Aimee was driving." When we burst out laughing, she was very confused as to why we found that so humorous. I had to explain that she couldn't drive anymore...Her eyes got wide and she said "oh, that's right..."

She got quite a few visitors the past few days, lots of wonderful cards, and some great gifts! She got the super cute pink hat she has on in the picture from our friend Paula, and a really cute coral color jacket from my Aunt and Uncle, and I got her some chocolate, yellow roses (her favorite), and I picked some gardenias from her bush at her house, and found a cute little glass swan vase for them. I spent most of the day down there with her, making her coffee, letting her smoke, and after her dinner (cabbage rolls! Another favorite!), some chocolate cake that I brought. She thanked me for making it a nice day for her.

It was actually a rough day for us both. One year ago today, I knew something was wrong with Dad. He had been having problems on and off for the two weeks prior, but Mom didn't want to worry me, so she didn't mention anything. Until her birthday, when she called me in the afternoon to tell me she had some concerns because Dad had forgotten her birthday. So, one year ago today, my Dad was sitting at his computer, checking his email, making my Mom a birthday card. And we talked that evening at length about all the signs that were weird, and decided to call the doctor first thing Monday morning, which he did. It forces me to reflect on all that has happened in such a short time. Mom was thinking about it too...Her first birthday without Dad. She wondered what he would have gotten for her, and where they would have gone to dinner.

This month will be tough for us both...First, we hit Mom's birthday, and the day I learned something was really wrong. Then we have the trip to the ER and the diagnosis on June 11th, then the surgery on the 13th, then my first Father's day without him on the 21st, and my birthday on the 26th.

It does allow me to take inventory of the blessings that surround us all, especially with the current economic climate. I am truly grateful to have a good job, great family, amazing friends and many, many tiny daily blessings, that make life not only worth living, but overwhelmingly beautiful.

So, although this weekend did not go exactly as planned, it wound up being pretty good.:)

Much love.

"Gentlemen...Start your engines!!!"

2009-05-25T21:55:00.001-07:00

One of my fondest memories of my Dad was that when I was young, every Memorial Day weekend, while I got a break from school, and got a chance to sleep in, Dad would get up at the crack of dawn, open my bedroom door, and say "Gentlemen, Start your engines!!!" After enduring my suddenly awakened groans, he would go out and watch the Indianapolis 500. Dad liked racing, but he loved Indy.

One of his favorite stories to tell was when he took a road trip with a buddy from work to attend this race at the Indianapolis Motor Speedway, also known as "The Brickyard" in Indianapolis, Indiana. I unfortunately don't know what year they went, but he always remembered it as one of the highlights of his life. Not only because of the race, but because he told me that they had gotten caught in a tornado in Kansas (maybe?), and it actually picked the car up, and set it back down. For years, I sort of took this story with a grain of salt...I thought, it was probably an exaggeration. Then, at Dad's retirement party in 2002, a man stood up to say a few words, and retold this same story, just the same way Dad always had.:) Got a lesson on doubting Dad, didn't I.:)

So, every Memorial Day weekend, I always have, and always will think of Dad with a smile. BTW, Helio Castroneves (for you non-racing fans, Helio won Dancing With The Stars last fall) won Indy for the third time this weekend.

So, an update on Mom...Not much has changed. I did spend several hours with her on Saturday, and today, I took her out to Macy's for a little while today. She was fit to be tied...When I got there today, she told me that she was really upset, because she thought I played a very dirty trick on her. I asked what kind of trick she meant, and she said that she called me earlier, and when I answered, she said "Aimee?" And I said "No, this is Mallory, you must have the wrong number." She said that she just knew it was me, and it was a very dirty trick. I told her that it wasn't really me, and she said it sure sounded like it.

She was pretty upset in general. And she pretty much had herself so upset, that she basically ruined our whole outing. She was so mad and so frustrated with everything, she cried most of the way to Macy's, and when I got a little stern with her and told her that she needed to stop living in her misery long enough to enjoy the good things in life. So, she demanded I turn around and take her back if I was going to talk to her like that. So, I asked if she wanted to go to Macy's, and she said "you know I do, but if you are going to talk to me like that, you might as well take me back..." Poor Mom...So stubborn that she would rather be right than be happy.

Well, I told her that we would still go to Macy's because we were already out. She managed to shoot down every suggestion I showed her, and sort of enjoyed the change of scenery...As much as she could.

Anyway, as hard as it is for Mom to live each day, I certainly treasure the few happy, content moments that happen from time to time, with all of my heart, and try to make as many of them happen as is within my power.

Much love!

Boy, am I ever in trouble...

2009-05-21T20:54:00.000-07:00

I got my usual 8 voicemails from Mom today, and the first 4 were the typical "please come down now" and "bring me my cigarettes." Then about the 5th call, she said something like "It is a ghost town here...A big bus came and took lots of people to Viejas..." Then the next call was "For my birthday, I want to go to Barona for dinner and gambling...I should be getting some free cash, so look for it in the mail...Thank you, bye."

Well, her birthday is coming up on June 7th...So, here is where my trouble starts...First of all, it is about 2 weeks until her birthday...I predict that (in addition to cigarettes) this will be her new vehicle to prove I am letting her down...Because we are not going tomorrow...Or right now. And once I finally take her on her birthday, she will be a handful because she will want to do everything just like she used to. I will do my best to accomplish this with her, but I hope she can accept it for what it is. The next problem will reside with her wanting to go ALL the time. All said and done, I will do my very best to give her as much as I possibly can.:)

I can tell she is getting frustrated with my limited ability to cater to her every whim. She has begun to call my Aunt from time to time when she can't get a hold of me. She basically tells my Aunt to call me. I guess that is not working to her standards, because she has asked me for a couple other numbers for some of our close friends. I know she will just be calling to either have them call me, or to bring her cigarettes or come take her somewhere. I am not sure what I am going to do. It is just so hard to try and keep her...what's the word...calm...satisfied...peaceful...happy?

It is hard for me to watch her burn so bright all the time. She is always on...Always looking for something, and then so far ahead of herself, she can't even enjoy it when she gets what what she wants...She is always on to the next thing she doesn't/can't have/wants. Just have to do what I can to bring as much as I can to her life. She is very frustrated with the staff at Magnolia. They struggle a little with her because she requires so much attention. I am grateful that she is so alert and cognitive, but truly lament the loss of her ability to reason through things, and her capacity to see beyond herself. I don't say that to be cruel, because I lament it because it gets in the way of her living any sort of pleasant life.

Everyday is a struggle for Mom, and although it wasn't much different before she started smoking again, the smoking has definitely amplified it. But we just move on, day by day, moment by moment, doing our best.

Much love to you all.

Keep moving on...

2009-05-20T22:07:00.000-07:00

Well, no news is good news I guess. Mom is holding her own. Staying about the same. I spent several hours with Mom on Saturday. She had been calling me all week, begging me to have someone shave her head. It seems that the staff at the nursing home was busy, and was unable to cut her hair. So, I shaved her bald once again, and it gave her a moment of happiness...Just a brief moment, but a moment nonetheless...

The insurance has officially run out for Mom. She has burned through her 100 days of PT, and is now relegated to RNA...I have no idea what that stands for, but it equates to 15 minutes of arm stretches 3 times a week...I remember from Dad. I am not sure how much more Mom would have been able to progress. I am just not sure that she still possesses the capacity to accurately judge what she is, or is not capable of. So, even if she was able to get strong enough to walk short distances with a walker or a cane, I am just not sure if she would be able to focus long enough to pay attention to what she was doing.

She is so funny...She called me today to tell me that her "brown pants clash with the plum shirt", and could I "please bring a tan shirt from her closet so she can match...Oh, and bring cigarettes." Always the penultimate perfectionist. One of our family friends stopped by on Saturday and brought Mom a belated Mother's Day gift...A silver-look costume bracelet, which she just loves. Now she tells me that she wants earrings to go along with it. I have these cute small silver hoops that would be perfect for her...They are easy to put on, fasten securely, and the post snaps into the other side of the hoop, so no sharp, pointy post to stab her. So, I put them on her, and took her over to the mirror to look, and she said "no, these are not the right size and don't match the bracelet..." Everything always has to be perfect...:)

Much love to all!

The only thing that is constant is change...

2009-05-13T23:02:00.000-07:00

Hello...A few days since my last post. I wish I could use my standard excuse of "not much happened," but Dorothy had some other ideas.

First of all, we had a very nice weekend. I took her down the street for breakfast on Saturday, where we shared a french toast breakfast. She enjoyed it, but was tired, so we went back to Magnolia. I took her out to smoke, we went in and painted her nails, and then we went out and smoked again. I left after several hours. I was back on Sunday for a Mother's Day visit. The volunteers from the local high school were selling hot dogs and cupcakes to raise money for the "Senior Prom" they are holding for the residents this week. Mom had been smelling the BBQ all morning, so she wanted a hot dog. So, I got us each a hot dog, and a cupcake to split. She polished off her hot dog, but was still hungry, so she and I split another hot dog. We ate, she smoked, she smoked some more...All in all, it was a very nice day.

Monday brought roughly 8 phone calls to my voicemail begging for cigarettes. A little higher than average...:)

Tuesday brought about 6 voicemails and a call to my Aunt because she couldn't get a hold of me begging me to come down and bring cigs. The last voicemail was that she was on her way to the hospital because she fell and hit her head hard...Well, the fact that she was the one that called to let me know was a little reassuring, but, I quickly called down to see where they were taking her. The nurse said she was probably ok, but because she is on the blood thinner Coumadin, there is a higher chance of a brain bleed if you hit your head. The best part of the message was her complaining that she had not had a cigarette all day and was wondering if maybe I could meet her in the parking lot of the hospital so she could smoke before going into the ER.

So I met her down at the Sharp Memorial ER. She was lucid, and had a bump on the back of her head with a small cut in the middle of it. A Cat scan followed, which showed no internal bleeding. Protocol for a head injury on Coumadin mandates a follow up Cat scan 12 hours after the incident, so the doctor admitted her to the hospital over night.

Don't ever tell her I put this on the blog, because she would be humiliated, but it is too funny not to tell. Well, Mom has been having some intestinal issues that we think may have been caused by the anti-biotic she has been on, and she thought that while she had the doctor there, she would mention it to him. He is an ER trauma doctor, so since that is not necessarily his expertise, he sort of changed the subject, and there was a short lull in the conversation as he washed his hands. And then he said "there is just one more thing...If it needs a staple..." Mom's eyes got wide, like saucers, and she looked at me, then back at him, and in a little, curious, scared voice asked "my butt?" The Doctor and I burst out laughing, and Mom started laughing too...The Doctor said "well, that might be a way to stop your problem, but I was talking about your head."

She didn't need a staple after all, in her head or otherwise, and she was discharged back to Magnolia this afternoon. All in all, she is fine. I am still trying to figure out exactly what happened that she hit her head. She claims that her wheelchair wheel got stuck in the door frame, and her paralyzed leg with the boot/brace (which she claims weighs at least 4 lbs) slipped off the footrest and the whole chair went over. Well, Mom has never been very good at science, and she can't even spell physics, but somehow, I can't convince her that it is literally impossible for a 90 lb woman to pull over a 45 lb wheelchair from a seated position with a "at least 4 lb" boot. I asked her if she tried to stand up without help, and you would have thought I would have asked her if she wore white after Labor Day...She was appalled that I would even have considered that possibility and of course she would never do that...Mmmmmm-hmmmmm.

Well, the nurses told me that when she got back to Magnolia, she came through the door hollering for pain meds, a change of clothes, food, and a smoke. I got there this evening, and she was all snug in bed. The moment she saw me, she wanted out of bed, into her chair and out for a smoke pronto. So, out for a smoke we go...Bitching the whole time about how cold it was outside. So, we came back in so she could have her dinner, which she LOVED until, while I was talking to the nurse in her room, she fell asleep in her wheelchair. So was so sweet, and as I rolled her up next to the bed to move her into bed, she stirred...And demanded to go out for another smoke. (I curse you Benson and Hedges!). So, I wheel her out and she takes one drag and dozes off holding her cig...

She fell asleep on the way back into her room, and then again within about 20 seconds after I swung her legs up in bed. The trip to the hospital took a lot out of her...:)

Anyway, she is back at Magnolia, hoping they will shave her head tomorrow...Apparently a half-inch is WAY too long. It was just starting to look nice...It was just long enough to just about cover her scalp, in the right light. I tried to convince her that it might hurt a little trying to run the clippers over the bump she just sustained yesterday, and to wait at least a few more days...We will see.

I hope you all had a nice Mother's day and weekend, and that the one coming up is amazing as well!

Much love!

Not much new...

2009-05-07T20:43:00.000-07:00

I haven't really been blogging, because there is not too much new with Mom. And really, no news is good news as far as I am concerned.

We have escalated the smoking, however...She calls and leaves me messages all the time (sometimes 10 a day!), crying, wanting me to come right now to bring her cigarettes. I am so sad that I called it...She is just no longer capable of dealing with much, and the nicotine is now causing it to go to the extreme.

As much as it breaks my heart into about eleventy million pieces every time I hear one of her voicemails...Her pleads for a cigarette and a cigarette NOW, I just have to be strong and not give into her every whim. Since the cigarette smoking decision was made for me by someone who thought they were helping my Mom, I just have to live with it the best I can. Now, don't get me wrong, I know that Mom has lost everything, and really, what harm is a smoke now and then going to hurt...? Well, once she knew I had them, she kept calling me, and when she couldn't get a hold of me, she called my Aunt, who also felt bad for her and ran her down a pack of cigs. Now, Mom cannot smoke by herself. She does not posses the reaction time and the dexterity to be able to prevent herself from getting burned or hurt. So, my Aunt gave the pack to the nurses to hold. Even though my Aunt sat with her and let her smoke 2 cigarettes, the moment my Aunt left, my Mom began yelling and causing a ruckus, because she knew the cigarettes were on the premises, and she wanted to go out and smoke NOW. I got there about 90 minutes after my Aunt left, and the nurse was at the end of her rope. So, we are going to try and work out a smoking schedule for Mom, where some of the staff can take her out for a smoke a few times a day. Of course, this is causing issue for the staff, as there are other residents who like to smoke too, but wait for their visitors. What works for one, needs to work for all, so the staff has to decide if this is even feasible.

But, with all that going on, Mom is hanging in there. I will warn all you wonderful visitors, the second she sees you, she will be wanting to go out for a smoke. If this is something you can accommodate, then great, the cigarettes should be with her nurse. But if not, just tell Mom you can't take her outside to smoke.

Mom and I are going to try and go out to an early Mother's day breakfast on Saturday...Wish me luck!:)

Happy Mother's day to you all and have a wonderful weekend!:)

Much love!

Back to the blog...

2009-04-29T21:41:00.000-07:00

Ugh...Things have been so busy lately. Work is busy, and so much to do and not enough hours in the day. I know, I am sure I am preaching to the choir...

Mom has been up and down since the service. Sometimes she gets so agitated, they give her a sedative, which, before the memorial service, would just barely calm her down. Now they seem to hit her like I have always thought they should. The sad thing is, they make her calmer, and a little slower, but she says all the same things to me as she does when she is lucid...Just slower and quieter. She is still really struggling with everything. She really wants to smoke, so I finally gave in and bought her a pack of cigs to smoke only when I am there...Half the time, she goes out, takes two puffs and says she needs to go back inside because it is too cold. I still think that the smoking agitates her further when she starts getting the nicotine withdrawals, but now that I have let her smoke, there is no stopping her. I am hoping that she doesn't get kicked out of Magnolia at some point for being so belligerent. Ugh! I curse that person who got her that pack of cigarettes!!! No one at the nursing home will admit to it, and Mom won't reveal the culprit.

Anyway, she continues to have a hard time dealing with life itself. Thanks to everyone for coming to visit her. I know it is hard to see sometimes, but she does enjoy your company. Often, in the few moments of peace and calm she and I sometimes have during our visits, she will talk about how nice it was to see each of you.

I hope all is well with each of you, and I hope you have wonderful plans for this beautiful weekend!:)

Much love.

A truly wonderous day...

2009-04-21T22:00:00.000-07:00

What an amazing day! It was beautiful, albeit a little warmer than I had expected, but the service was just a wonderful thing!

It went exactly as planned, and I was so touched by things that I didn't know would impact me the way they did.

As I looked out into the seats as I spoke my tribute to my Father, I saw faces, both familiar and not, sometimes smiling, sometimes crying, but most of all, united in a celebration of a man who proved that life is worth living, no matter what.

I will admit it, the bagpiper hit me harder than I ever thought possible. But it was so wonderfully beautiful. She later came up to me and gave me her condolences, and told me what an honor it was to play. What a blessing, and what a wonderful sentiment.

Mom struggled when I got her there in the morning, but as people started to arrive, and she calmed down enough to look around at the memory tables, she ended up being able to say hello to everyone. All in all, she was happy and proud of the service I put together.

I can't thank everyone enough for attending, and I hope each and every person there had as good a time as possible for a memorial service, because Dad loved a party, and this would have been no exception!

One more thank you to everyone, for your love, support, donations, cards, hugs, sentiments, emails, phone calls and more. To be surrounded by such wonderful people is a blessing beyond dreams.

Much love!

2009-04-16T22:26:00.000-07:00

Spent time with Mom last night. She is having a really hard time, because in addition to everything else, her meds are all messed up. They have put her on new ones, taken her off some, all with going in and out of the hospital. So her body is really struggling to make sense of new meds and side effects as well as withdrawal from others. It doesn't help her state of mind.

I have been getting everything in line for Tuesday. I think it is going to be a lovely day. Looking forward to seeing you all.

Much love!

And back to Grossmont...

2009-04-13T21:02:00.000-07:00

Well, in the midst of our small Easter celebration, Mom started having chest pains...So, after taking her vitals and giving her some pain meds, they decided to send her back out to the hospital. So, we spent Easter in the E.R., and she spent last night and tonight in a really great hospital room. They did not find anything conclusive, but they want to keep her for observation anyway. She is actually handling it kind of well. She is still very itchy, and the Benedril does not work very long. So, she is pretty uncomfortable, but trying her best. She should head back to Magnolia tomorrow, unless something comes up.

I also want to post some more information about Dad's service next week. In order to have everyone show up at the correct location please take the following directions...From the 5 Freeway, exit Sea World Drive and head West. At the third traffic signal, S. Shores Park, turn right and follow the road down to the East Employee Parking entrance, and let them know you are there for the memorial service. Please watch for children when parking, as there will be several Education groups arriving at the same time.

The walk into the venue is about a 5-6 minute walk. If there is anyone who may have problems or need assistance covering that distance, please contact me at 619-303-2027.

I hope every one had a lovely holiday.

Much love!

Back to Magnolia...

2009-04-09T21:12:00.000-07:00

Well, Mom is back at Magnolia. She was released from the afternoon today, and got back in time for dinner.

My poor Mom. She is just having such a hard time with life. She is just at the end of her rope. She is really struggling with everything. I am having such a hard time figuring out how to bring her any inkling of peace or joy. Nothing I can say or do brings her any relief. Even when she gets something she really wants, she somehow skips right over any pleasure, and goes onto whatever is the next thing she is fixated on. I am hoping that getting back to Magnolia, and some structure may bring her a little comfort. But she needs to make amends within herself, and make a decision to not be miserable. I am just not sure how to facilitate that in her...It is just hard to sit by and watch her suffer.

I am fighting this dreadful cold that is going around. If you haven't gotten it yet, take your vitamins and wash your hands...It is no fun.

Much love.

Another rough day for Dorth...

2009-04-07T23:52:00.000-07:00

My poor Mom. She is just so unhappy and frustrated. Although, she may get released tomorrow. As almost anyone could have predicted, the extra high dose of Coumadin finally kicked in, and today, her blood was critically thin. So, first too thick, now too thin...Maybe tomorrow it will be "just right..." If so, then she should be able to go back to Magnolia.

Today was just a little rough. I think she gets lonely when I have to work all day...Well, she doesn't have anyone to order around except the nursing staff, and they don't have time to constantly entertain her, or move her from the chair to the bed and back again all the time. They really do have some wonderful, patient, friendly nurses at Grossmont. Thank goodness.

Much love.

Dorothy is a hard nut to crack...

2009-04-07T00:09:00.000-07:00

Leave it to my Mom...She is really upset because the Dr. told her she had to be in the hospital another 3 or 4 days. They are testing her Coumadin levels, and although they are giving her a dose normally given to a 250 lb man, it is not thinning her blood. the doctor is not quite sure what to do with her, so he is just going to keep watching her closely. Mom is miserable there. Although she had her feeding tube removed today, and she had our family friends Paula and Stephanie visit today, she is just so frustrated she has to stay there, not much breaks through that. But she did tell me that she was good today...She behaved. I hope she is right.;)

Much love!

2009-04-05T08:40:00.000-07:00

Dad's obituary ran in today's paper. To look at it online you can go to http://www.legacy.com/Link.asp?I=LS000125760435X.

Mom is having a really rough time in the hospital. The doctor said she would be there until Tuesday or Wednesday. They are waiting until the Coumadin levels in her blood are where they want them. The Heparin, or Lovenox they are giving her will thin her blood, but will not dissolve the clot. The Coumadin will break up the clot, but they can't risk doing it too quickly and loosening the clot. She just has to be patient...Which is not really in her vocabulary any more. She is really having a hard time with being confined to her room/bed, and she is driving the nurses quite crazy...So, pray for Mom and pray for the nursing staff...;)

Much love!

Another twist on this roller coaster ride of life...

2009-04-03T23:16:00.000-07:00

Well, today brought another opportunity to be grateful and realize just how fragile life is...Mom was doing her last covered day of PT and suffered painful breathing and tightness in her chest. So, to be on the safe side, the nursing home called 911 to have her examined at the hospital. And it is a good thing they did. Mom suffered a pulmonary embolism, which for us lay people is a blood clot in her lung. The blood clot is usually what they refer to as a deep vein thrombosis (DVT) and for many possible reasons, may form somewhere in the body and break loose and travel into the lung. Pulmonary embolism causes sudden death in 26% of the cases, and is the third most common cause of death in the U.S. These DVT's can also cause strokes and heart attacks.

The treatment, since we caught it, is to try and dissolve the clot with blood thinners such as Heparin in the near term, and Coumadin for the long term. So, we get rid of this clot (and any others that may be lurking) and keep the blood thin enough to prevent any future clots. For those with PE that recover but continue to go untreated, about a third will die from another PE. However, these blood thinners can prove to be an issue because if you cut yourself, it is very hard to stop the bleeding, because your blood won't clot. It is a fine balance.

By the time I got to the hospital, Mom was acting like an irritated bee...They not only started an IV in her arm, they needed an IV with a large gauge for the CT scan contrast, so they put a IV in her neck...So, she was glad to see me, and I seemed to calm her a bit. But she was demanding to make it back to Magnolia tonight, because she was convinced that my Dad's memorial service was tomorrow. She has been convinced that his service was "tomorrow" for the past week or so. I am sure she will get it in her head that the service is not "tomorrow" 2 days before...Because, then, it will be tomorrow.:)

She is in pretty good spirits, but she does not want to be in the hospital. The ER doctor said she will probably be in a day or two, but her hospitalist said she may be in 4 or 5 days. We just want to be sure she is as stable as possible before that happens.

On a good note, I got another chance to check out the gift shop! I bought Mom a super cute hat, and a necklace for myself. So, once again, the hospital gift shop has supplemented my wardrobe. Small blessings...;)

Also, my Dad's obituary should be in the Sunday paper this week. I will post the link to the UT website once I get it on Sunday. But keep your eye out for it.

Much love.

The nicotine dilemma...

2009-04-01T23:22:00.000-07:00

Mom and I had some great visits lately. Saturday and Sunday were nice, and yesterday was really nice too. She is still very sad, but stubborn. I guess she keeps using the sympathy card with the other residents and staff and keeps bumming cigarettes. So, she had one yesterday, and when I was over getting the mail today, there were 6 messages on the answering machine...All came in between 6:10 p.m. and 6:16 p.m. and they were all ordering me to bring her cigarettes RIGHT NOW, and threatening not to eat again until she gets them...Great, she is blackmailing me by holding a loved one hostage...It just happens to be her...Lovely.

So, as expected, they have officially discontinued Mom's PT...So, in amongst all the other stuff, now I tackle Sharp Healthcare once again ...Wish me luck.

Much love!

Pretty good weekend...

2009-03-29T21:36:00.000-07:00

Well, Saturday was quite enjoyable. I picked Mom up in the morning, and we left only after she pitched a fit about not having any make up on...So, we made her up and we were off to brunch. We went to Coco's, and she got to have her super well done toast with extra butter and strawberry jam. She was happy with that. Then she said she wanted to go to the mall. So we went over to Parkway Plaza, and made a quick trip into Macy's, where we dropped a small fortune (very small) on some new shirts for Mom.

Mom was really happy and in a great mood when I left. Apparently, a visiting RN was there at Magnolia, and in response to Mom's problem with being itchy all over all the time, she decided to try a new medication. This medication is for neuropathy, and it turns out that the issues Mom was having may have been caused by nerve damage from the stroke. It seems to be working, and Mom seems to be sleeping more at night...At least Friday night anyway.

Mom wanted me to bring her make up from home, and was not about to be too patient about it. So, although I try and take Sundays for myself to get stuff done, I dropped by to give my Mom her makeup. She was having a bad day. Really missing Dad. And she finally asked my why she shaved her head...At least she still likes it.

A little news about the memorial service for Dad. It will be at 9:30 a.m. on Tuesday, April 21, 2009. It is going to be held at SeaWorld, and I will be creating a web page with instructions on where to go. It should be done in a day or two. So, please mark your calendar and save the date. It should prove to be a very nice event.

Much love.

The crazy adventures of Dot and Aimer...

2009-03-26T20:40:00.000-07:00

So, let me preface by saying, no tiny 92 lb women were hurt in the process...

So, I arrived to pick up Mom for her ear appointment today. She was sound asleep in bed...So much so, that I had to rub her head and call her name several times. She seemed a little upset that I woke her, but I know she was looking forward to going because she had one of the girls there put make up on her. So, I get her into her wheelchair, and wheel her out to her car. I lock the wheels on the chair, open the car door, and go to lift her like I do when I move her from her bed to her wheelchair...This is where something goes wrong. What I think happened is that she didn't help me like she usually does. So, she turns into a limp noodle...A 92 lb limp noodle...That is screaming at me...She is saying that I am hurting her arm, her jaw, her foot...She is yelling and crying in my ear while I am trying to move her...Not. Helping. So, I set her down on the door frame of the car for a second, get my footing, try to tune out the screaming, and grab the back of her pants and hike her up into the seat. Whew. She calms down a little, and as I swing her legs into the car, she proceeds to tell me that I did it wrong and I did a horrible job, and I really screwed everything up. So, I ask her if she is hurt, and she says that she is not hurting now, but I really did a bad job...So, I take a deep breath, close her car door, and go around to put my purse in the car so I could heave the wheelchair into the trunk, and as I open the door, I hear my Mom say "oh, my eyebrows are way too dark..."

The other transfers were more successful. Mom did have some emotional rollercoaster moments in the doctor's waiting room. She told me that she is going home, and when she does, it is just going to be her and my Dad and Newman (my dog) and I can just go far away forever. So, I rubbed her head, and told her that Dad is always with her in her heart, wherever she is...And this was apparently the wrong thing to say at this juncture, because she began sobbing in the waiting room. I rubbed her head, and told her that I understand (I can't say "I know" because she emphatically tells me that I do not know...), and then tried to change the subject...Which was successful, and within a minute or two, she was giggling...All in all, the appointment went well, and she can hear once again.

I got her back to the nursing home in one piece, and she went in and immediately asked for her meds, and asked if I would get her coffee. So, I went to get her a cup of coffee, and as I walk back into the room, she is telling the CNA that I dropped her...Oy vey...

Much love.

And then there are good days...

2009-03-25T20:56:00.001-07:00

I had a really nice visit with Mom today. I got there after she finished dinner, where she was sleeping at her table. I am coming to realize that she cat naps all day long. And she wonders why she is so tired all the time...It is because she doesn't sleep at night.

But, we called Mom's sister tonight and she got to chat with her for a few minutes. She really can't pay attention to the phone for much longer than that. I had to use my cell phone as her phone does not do long distance. The cell phone on speaker is puzzling to Mom. We did get a good laugh, because well, Mom shaved her head again, and I was telling my Aunt. My Aunt brought up the fact that my cousin Lvonne shaved her head first years ago. My Mom laughed and said that she knew, and that everyone always said she and Lvonne were a lot alike...Then she said, "yah, we are like 2 kinds of feather of a bird..." Oh, my Mom just cracks me up.

Our visit was so bad on Sunday, I stayed away on Monday, and when I went yesterday, she was sound asleep...And I wasn't about to wake her up, so I left. When I got there today, she said that she was surprised to see me, and that she didn't think I would be back for a while. When I mentioned that Sunday was a little stressful, she looked right at me and said "well, I wanted my cigarettes...They calm me." So, she knows exactly what she is doing, but she just can't help it...Or doesn't care. I told her that she got so angry from the nicotine withdrawal, and that she has such a hard time controlling her emotions without nicotine...And I told her about the elderly man that just died because he dropped his cigarette on his Depends and he went up in flames...I know scare tactics aren't nice, but I have to try and persuade her...

Well, tomorrow, I am taking Mom out of Magnolia for the first time since she got there in late January. We are going to the ear doctor. But, when Mom was telling the CNA tonight that she was going to the doctor tomorrow, she followed it up with "my ear doctor is really close to Macy's..." Oh geez...For someone who is supposed to have memory problems (even before the stroke), she sure holds onto some things pretty tightly. Bless her heart. Since it is her first visit out, I am not sure how tired she is going to be, but we will play it by ear. Wish us luck...;)

Much love!

One day at a time....

2009-03-23T22:20:00.000-07:00

This weekend was a little tougher...My days were not as filled with busy stuff, and there was time to let myself grieve. I miss my Dad a lot, but still thankful he is at peace.

Mom is struggling a lot. She is really having a hard time dealing with everything. And, since there is no rest for the wicked, I have been presented with my next battle. the Sharp case worker has apparently decided that my Mom is not progressing enough, and wants to put a stop to Mom's physical therapy. UGH! I guess the "tribunal" meets tomorrow to review her case...I have told the social worker at the nursing home that I feel she still has potential, and to take this away from her now would be a big mistake. I will just have to hope for the best outcome possible tomorrow, and if I don't get it, then I am ready for another battle.

And to top it all off, someone at the nursing home bought Dorothy a pack of cigarettes...Nice. Mom won't tell me who...I would like to thank this person for their help and generosity...For someone to commit to supply Dorth with cigarettes and take her out to smoke...Because I will not do either of those things...And boy is Mom not happy about that. She is really mad that I took the cigarettes away from her...Oh well...I feel like the mean old parent trying to keep their teen off drugs and alcohol...Do not envy you parents out there...

Looking at the week of April 20th for Dad's memorial...I will have the exact day firmed up sometime this week and I will officially let you know.

Thank you for all your wonderful emails and cards. They are so appreciated. Your thoughtfulness is once again overwhelming.

Much love!

A note about the memorial and how we are doing...

2009-03-19T00:27:00.000-07:00

Due to some unforeseen circumstances, it looks like we will be pushing the memorial service for my Dad to mid to late April. I will keep everyone posted via the blog, and as we get closer to a confirmed date, I will let you know.

In the interim, if there is anything you would like to do to honor my Father, you could always donate money, your time or your blood in his name. As you know, my Father was a very generous man. He was always willing to commit to helping others in any way possible. There are many worthy causes out there, but if you do not have a favorite charity, some of Dad's favorite were the American Cancer Society, Sports-A-Thon, Special Olympics, the Rescue Task Force and the American Heart Association. I understand that the economy is in a really bad place right now, so if it is not in your power to donate money at this time, there is always opportunity to donate your time, or the San Diego Blood Bank is always in need of blood. He took such pleasure in being able to donate whole blood, plasma, platelets and packed cells religiously, knowing it would go to help people in need. I am sure there has been a void since Dad was last able to donate back in April of last year. He was donating using the apheresis machine every three weeks since his retirement in 2002.

Well, I am sure I am in store for a wall of emotions at some point, but due to being very busy this week with necessary stuff that no one ever wants to do, I have been holding it together pretty well. I go back to work tomorrow, so I was trying to get as much done as possible. I have been going to therapy since Mom got sick, and my therapist says that since I have been grieving for the past nine months, that I am probably doing pretty good. Only time will tell. I truly miss my Dad.

Mom continues to struggle. The grieving process is a struggle for Mom. She just misses him so much. And that impacts her mood so much. When she is down, she really goes to the extremes. She is back to feeling out of control, and doing anything she can to try and regain any control possible. I wish she would focus all of that energy on her physical therapy, but the latest is that she wants her feeding tube removed. I am just so hesitant to go down that road at this time. She weighed 92 lbs today when they weighed her, which is still a little low in my book, but I think that the only reason she weighs that is because of the nutrition she receives through her feeding tube. She just doesn't eat enough to maintain any sort of weight, and once again, her willingness to eat is based on her mood. I will just have to wait and see how we can get things to play out with her. Hopefully, time, patience and understanding will prevail.

Much love to all!

Edward G. Reed, Jr. 1934 - 2009

2009-03-16T23:16:00.000-07:00

I am so sorry to report that my wonderful, amazing father passed away on Sunday afternoon, March 15, 2009. I am equally sorry if you were very close to him and are finding out about his passing here on the blog...This is a fault in the wonderful thing called technology. We made every effort to call as many of you as possible, and I am so sorry if we missed you.

I am sure it is quite a shock after reading Thursday's blog. Dad took a turn for the worse on Friday morning. He began having seizures and required extreme sedation to calm them. And yesterday, at approximately 1:00 p.m., Dad peacefully left this Earth, free from the pain and suffering. He has finally been freed of the bonds of illness and imperfection.

My Aunt and I were with him...He waited for me. I got there, and within about 5 minutes, he took his last, peaceful breath.

I think my Aunt and I both were struggling with his passing beforehand. I knew I didn't want him to be alone, but I was so afraid of the moment and what it would bring. I should have known better...As always, my Dad knew what he was doing and took care of us as he always has.

My Mom is taking it hard, as you can imagine. On top of the awful, unfathomable situation of losing your lifelong soul mate, she is struggling with the complications of the stroke. She completely understands what has happened, she is crushed and heartbroken, and having difficulty determining how she will go on without him. She is having trouble controlling her emotions...I sort of liken it to a television rapidly switching channels. She is able to stay on the same topic, but one moment she is upset that he is gone, the next she really wants some coffee, the next she is worried about how she is going to go on without him, the next she is mad at him for leaving without her, and the next she is looking forward to planning the memorial together. While all of these are understandable, and acceptable emotions, she will experience these emotions consecutively and separately within the span of a minute or two. Bless her heart.

I am doing fairly well. As I tell my Mom when she wonders how she will go on without him, although it was my Dad's time to leave this Earth, it is not ours, and we need to go on living as we have things yet to accomplish here. And I will take every opportunity I have to make my Dad proud of me...It is not that much different than how I have always lived my life, but now I get to do it on my own.

There is a tremendous sense of relief...A weight lifted off my chest. I will miss my Dad every day of my life, which I don't think is unusual, but the end of the suffering and pain is truly a blessing.

Thank you for your thoughts and prayers for Dad throughout this horrible illness. Your visits kept him going, and your love and support of Mom and I meant more to him than you will ever know.

We will be working on the memorial service details over the next few days, which I will post here in the blog and in the obituary when things are firmed up.

Much love to all and many blessings to everyone. Heaven has a new angel looking out for us all.

2009-03-11T22:05:00.000-07:00

Not much new to report. Everyone is doing about the same. Dad was very alert tonight, and talking a lot. I love to hear my Dad talk...Often, it is complete nonsense, but he does it in perfect grammar. Perfectly spoken, proper sentences that mean absolutely nothing. Well, it may mean something to him, but not to anyone else. And many times, if you question him, he gets kinda mad. Or if he knows he is speaking nonsense, he will close his eyes as if to pretend he is sleeping. It is pretty cute. His edema in his legs appears to be getting worse. I talked to the hospice LVN tonight, and she was going to question what else we can do. We will see what comes of that. I am a little bummed...One of my favorite nurses there at Magnolia is on vacation for the next month. She is really on top of things and knows her patients inside and out. I will miss her while she is gone.

Mom is pretty good. She was really sleepy tonight. She said that she had not slept at all the past 2 nights. If that was the case, maybe she is just really tired. She was happy because someone came by today and put some makeup on her. She looked really cute, even with her bald head. I think she was a little upset that these ladies were also doing hair...LOL. I am sure I will go to hell for giggling at Mom's decision to shave her head, but you have to admit, it is a little funny.

She tells me she is getting better at walking with the platform walker. She really is getting stronger physically. The platform walker is very much like a regular walker, but it has extra apparatus on top. They allow you to rest your arms straight out on flat, perpendicular platforms, and then hold hand grips. This allows Mom to learn how to balance, and to get move her legs and build her muscles. Eventually, the goal is to get her to a cane that has a tri-pod on the bottom...Well, it has 4 feet, not 3...(quad-pod???), but it provides more stability.

It is pretty funny, now that I am going less to visit, whenever I get there, invariably, one of the staff there says something like "have you seen your Mom? Boy is she mad at you..." And luckily, by the time I get in to see Mom, she has either forgotten, or is too busy ordering me around to be mad...Not that it has stopped her before. I will take whatever I can get.

I am going to attempt to take Mom to breakfast on Saturday. It will be her first trip off property since she got there in January. I am a little nervous that if it goes well, she will want to do it all the time and will get obsessed with it, but I still have to try. We are just going to go to Coco's, and she how she does out in public. I am concerned that she will get tired quickly, or she will get so preoccupied with something (pain, her looks, not able to eat like she used to, self-conscience), and she will get so upset we will have to leave. That is why we are going early, in hopes that she will be well-rested, and we are going to someplace close, and familiar to her. I hope it is something we can enjoy together once or twice a month, and that it doesn't cause more problems than opportunities, but these are going to be the first steps to seeing how well she will get along in the future.

I will probably not seeing the folks until I take Mom out on Saturday. So, I don't know if I will have any updates until then.

Until then...Much love!

I guess I could buy her happiness...:)

2009-03-09T21:27:00.000-07:00

Well, I got to Magnolia tonight in time to feed Dad his dinner. He didn't eat as much as he usually does, but he did ok. He didn't even want ice cream tonight. I got a call from the hospice nurse, and they are going to put him on Tylenol every 8 hours regularly so that it might help his pain. He is not in a great deal of pain, but when they dress his wounds, he gets sore. And I would rather have the Tylenol if it will work on the pain than something stronger, because those just knock him out.

Mom was ok tonight. I bought her some new clothes, and she was pretty excited about that. She said that she has taken to going into the dining room and falling asleep. I told her that she needs to get more sleep at night, then maybe she won't fall asleep in her wheelchair.:)

She enjoyed her visitors this weekend...I forgot to mention that she shaved her head again. It is kind of funny...I like to hear her explanations to people as to why she shaved it...When I wasn't there, one of the CNAs asked her why she shaved it again, and she told her "to spite Aimee." She sometimes says that she has always wanted to do it, and tonight, she told the nurse that she thought, that even though they got all the cancer, she thought that she might have to have chemo and radiation, so she shaved her head just in case...And the best thing, is that she believes each one every time...:)

Just a little sad note...Logan, my friend's sweet greyhound passed away today. Please send thoughts of peace to Chris and Allison, and Roxy, their other greyhound. Farewell sweet Logan.

Much love.

I hate it when i am right...

2009-03-08T21:42:00.000-07:00

Well, Mom's psych consult happened on Friday evening. It went as well as expected, I guess. The doctor made some adjustments to her medications. I got a chance to speak to him and he was really good to talk too. He didn't tell me what I wanted to hear, but he told me what I had suspected. He says her behavior is a direct result of the damage caused by the stroke. He said that the change in medication may help to even her out a little, but that this is how she will be from now on.

He said that this kind of stroke robs their victims of their ability to censor their thoughts. They think them and are not able to filter their actions. He says he has a lot of male patients that fondle female nurses not because they are perverted, but that they get a thought, and act on it without taking into consideration the ramifications. He said she is actually pretty good...Has concept of where she is and what happened, and her short term memory is fairly good. But he says she is much like a child, and will not listen to something she does not want to hear, no matter how rational it is.

I asked him his advice on how to avoid the triggers that set her off. He said that we need to keep encouraging her, and praise her as much as possible. Let her show what she is proud of, and get excited for her. He said that I need to not be afraid to lie to her and not tell her things that will upset her...Well, things that she does not need to be told, anyway. He also used a metaphor to help me understand...He said that it is a little like playing a board game with a 4 year old...If you stick by the rules, the 4-year old will get mad and leave. But if you let them have some extra turns, and skip some spaces, and roll the dice until they get a higher roll, they have a lot of fun and enjoy themselves.

He also told me that his strongest advice was that I need to not visit as much. He said when family visits every day, it inhibits the person from being able to fully integrate with the nursing home. They become used to delaying what they want until family gets there, and do not learn to get used to how the nursing home works. He said that it would be good if I go 3-4 times a week on average, and to not stay too long. This will help Mom to get more comfortable, and it will have her looking forward to my visit, and give her more to talk about. It does make sense, and I know that often times, my presence just winds her up.

I did ask his opinion on her prognosis, as far as the likelihood of her living at home again. He said that depends on how she progresses physically. He said that she should not ever be left alone, so coming home will need to include supervision at all times. I know it is not going to happen in the next few weeks, so I will just have to take things as they come. She needs to keep up with her PT as long as possible, so she can get stronger and gain as much mobility as possible. I am also hoping that she will stay there with Dad as long as possible, because time is precious with him, and at home, she is not able to roll in and see him anytime she wants. That is one of those concepts she is not really grasping at this time...Just have to take things as they come...

Dad is doing pretty well. Quite alert at times. It is so nice that he does not have to leave Magnolia, where he is used to the people and sounds, etc., but still has the benefit of hospice. So far, hospice has been a great addition and they are taking such good care of him.

Well, we just keep pushing ahead, hoping for the best, fighting our hardest, and being thankful for each and every day. My visits will be a little less frequent, so if you can stop by when you have some free time, they would love it!:)

Thank you for all you do. When you keep us in your prayers and good thoughts, please take a short moment to include my friends Chris and Allison as well. Their sweet Logan, one of their two retired racing Greyhounds is going through some significant health issues at this time. Keep hoping for them and sending your positive energy that he will be strong enough to pull through his ordeal.

Much love!

A little better today...

2009-03-05T22:39:00.000-08:00

Mom's still mad, but calmer today. She did just a little PT, and she was sitting with Dad when I got there. I am still very concerned about her. She was still mad at all she was mad at yesterday (mainly me), but she was less agitated about it.

When I left tonight, I told her I loved her like I do every night, regardless of her mood, and tonight she said, "I love you too, you know I do...I just get mad sometimes...And frustrated." I told her that I know, and she should try and get some sleep. She really hasn't slept in 2 days. She was understandably tired tonight. It is so hard for me to figure out...She knows what she is doing, but it is like she can't control it, or just doesn't care to control it. We will get to the bottom of it, but it is just a matter of time.

She started having trouble hearing. She claims it has been coming on, but today, she can't really hear anything. I am going to see if I can get her an appointment with her ear doctor to see what the problem is.

Dad was ok tonight. I think hospice came in today and put him back on oxygen. We are not sure why...If there is any actual reason, or if they just thought since the tank was there, they would use it...We should find out tomorrow. He ate about half of his dinner, and I got him to eat most of his pineapple sherbet, and some of his chocolate Ensure. He was not as lucid as he has been, but he was awake.

At one point, Mom and I were sitting in Dad's room, and the nurse came in to give Dad his night time pills, and Mom was complaining about the dining room and the nursing staff, and my Dad said "Dorth...Knock it off!" She said "what" and I told her that Dad told her to knock it off and that he had her number!:) She laughed a little, and was happy to hear Dad talk. It made my night.

Much love!

Tough night for Dorth...

2009-03-04T22:03:00.000-08:00

Mom is really struggling emotionally. I am not sure if she is just finally getting the grasp of all that has happened, or there is damage from the stroke, or her medication is causing it, but she is really having a hard time coping. She is barely sleeping and very mad all the time. She feels very alone and frustrated, but she won't let anyone help her. She refused to do physical therapy today, and was so worked up, she said she didn't see Dad all day.

I know she is upset and frustrated, but if she keeps up this pace, she is going to make herself sick. I am worried about her. She is livid with me, and told me not to come and visit, but when she heard I was in feeding Dad (I was going to see her before I left), she said she wanted to talk to me...Then she started yelling for me...So, I went in her room, and she just wanted to give me a piece of her mind. I know this is not her...I am just concerned that she gets herself so worked up. She is feeling very helpless and out of control, and that has got to be a horrible feeling. They gave her something to calm her down, and hopefully she will get some sleep tonight.

Dad, on the other hand, was doing pretty well. Calm, awake, and happy to see me. He ate some of his dinner, and I gave him an Ensure. He was hurting from the edema in his legs, and his hands from the skin tears. But, he was still smiling and happy.

Here is to hoping that tomorrow brings help and peace to Mom.

Much love!

Another pretty good day...

2009-03-03T22:08:00.000-08:00

So, since Friday, when Dad was put on hospice, he has been visited by 3 RNs, an LVN, a social worker and a chaplain...And most have called me to give me an update of his present condition. A couple of them have even stopped in to see Mom...

Mom has been struggling a lot. She has been going through highs and lows, but more so lately. The good thing is that she does go and see Dad a couple times a day, and for the most part, enjoys her PT and is continuing to get stronger all the time. Although, when she experiences a low, she doesn't have patience for anyone, and doesn't want to eat or do PT. This is really tough on her.

Dad has been remarkably lucid the past few days. He has been awake and conversational when I have been there. They say he has been eating well, and although, the conversation does not always make sense, it is sure good to see him smile and hear him say "thank you" when I tell him that I love him. I will take as many of these little stolen moments I can.

Much love!

Exhausted all around...

2009-03-02T21:32:00.000-08:00

The weekend went pretty well. Everything was about the same. Mom is not quite as patient, but is hanging in there. She has started denying particular CNA's if she doesn't like them. I keep telling her that she really can't do that, and she insists that yes she can and she will whenever she wants to...Nice.

Hospice came and evaluated Dad on Friday and then today, another nurse, and social worker came to visit. He was remarkably lucid tonight. He was awake and talking a lot. They took out his feeding tube today, and wouldn't you know, he didn't like his dinner, and didn't want to eat.

Much love!

Tired today...

2009-02-25T22:15:00.000-08:00

Was at Magnolia only briefly today. My friend Stephanie and I had a late lunch and went to visit my folks. Dad was sleepy, but responded a little when I spoke to him. Mom was very tired. but, they had given her a muscle relaxer and her pain meds about 45 minutes before we got there and they were kicking in big time. She still wanted to go to the dining room for dinner, as she fought to keep her eyes open. She finally agreed she needed to rest. She said that she did sleep through the night last night though. YAY for Ambien!:)

Mom and Dad had some visitors today. Family friends Diane and Marion. We really haven't spoken to Marion since before Dad got sick, so it was nice she was able to stop by for a visit. She brought my Mom some lovely yellow tulips...Mom's favorite color. And Diane lives outside of Palm Springs, so it was good she was able to see my folks while in town. I guess Dad slept through the visit, as he does most visits, but Mom got to chat with them. Mom loves her visitors!:)

Much love!

All in all...A really good day!

2009-02-24T21:34:00.000-08:00

I spent most of the day down at Magnolia again today. I met with the hospice nurse today, and we will be officially starting hospice for Dad on Friday, once the swallow evaluation is complete. They will be looking to provide things that are going to work to keep him comfortable, including a new mattress that will be better for his skin, oxygen (if he needs it), more frequent bed baths and company.

Today was a very good day...I got to give Dad chocolate ice cream...And he gobbled it down with no problem, and loved every second of it! He polished off two of those single servings in about 7 minutes. And at dinner, he ate all of his mashed potatoes, all of his butterscotch pudding, half of his roast beef, all of his milk, another chocolate ice cream, and half of his vitamin water. And he enjoyed every single little bite. I was almost afraid that he was going to overflow seeing

as how he hasn't eaten in a few weeks. It was so good to have him eat and truly enjoy something, a gift from heaven. He wasn't very conversational, but I did get a couple smiles and lots of eye contact. I am sure he is still tired from yesterday.

Mom was not as good today as she was the past few days as far as her patience and tolerance goes, but better than she was before. She says she is trying to be a better patient, and this means that although she gets frustrated, she is not screaming all the time, and not banging on her bed. She still expects me to push her around when I am there but she isn't as quick to snap, and is usually calm enough to listen to me when I tell her to calm down if she gets anxious. Today, she was a little more impatient, but I think she was more tired today. She said she took 30 steps on the bars, with assistance, and I am still convinced she is not sleeping well at night. The nurse and I discussed it, and we are going to try the lowest dosage of Ambien tonight to see if it will help her to get more solid sleep.

Today was like a mini holiday. Mom, Dad and I all got really wonderful, impactful cards from family back East, Mom got a gorgeous Harry and David gift basket from her sister and family, and Mom got a kicky sun hat. One of my friends at work loves her haircut, but is thinking ahead for summer...Her head will be prone to sunburn...So, she bought Dorth a wonderful sun hat. Dorothy looks so cute in it! See for yourself!:)

Ain't she something??? Thanks Mariana!:) She loves it! Anyway, it was all such a good day all around!:)

Much love to all!

Things are looking up!

2009-02-23T22:24:00.000-08:00

I spent most of the day down at Magnolia today. One of the nurses called me to tell me that they were going to be doing Dad's barium swallow test out in the parking lot today. I guess they have a van where they can distribute the barium and take the x-ray. Good news is that he passed! He is now released to try thickened liquids and pureed food initially, and then if all goes well, we may be able to move on to other food. But, chocolate ice cream is a thickened liquid, and so is pudding!!! YAY!

Unfortunately, since Dad has such thin skin, the simple act of getting him into his wheelchair caused very large skin tears on his legs. I went down early so that I could spend some time with him while he was in his wheelchair. Since the damage had been done, we left him in his chair for a few hours. When I got there, he was on pain meds, so not really as lucid as he could have been, but he was responsive when spoken to. I wheeled him outside, and we sat in the sun for about 25 minutes, and he was so happy to be in the warmth. We talked a little, and then I read my book while we sat. It was really nice. We finally had him put back into bed, and they cleaned his new skin tears and gave him some pain meds. They will keep the tube feeding at night for 3 days and then reevaluate to see if he is able to take in enough food to survive. Now that he is able to eat ice cream, one of the very few pleasures Dad can still enjoy, we are meeting with hospice tomorrow to evaluate him, and move him on to hospice care. I am looking forward to the additional attention he will receive, and the additional care to help keep him comfortable.

Mom was a little feisty today, but really, she has been a great deal better over the past few days. Much more patient and aware of her actions. Not nearly as likely to fly off the handle if she doesn't get exactly what she wants when she wants it. She knows it too. She keeps telling me that she tells the staff that she is going to be a good patient, and not yell anymore. And I think she is actually doing pretty good following through with that. Now, she is not a perfect angel, mind you, but she really is acting better. I still don't think she is sleeping through the night. I am working with the nursing staff to observe and document her behavior over the course of a couple of nights to get a baseline. And if she is not sleeping enough, I am going to push for some sleeping pills. She falls asleep when they give her the muscle relaxer and Ativan, but, I don't think she sleeps all night long, and has a hard time going back to sleep if she wakes up in the night. Her PT went well today, and she is able to take a few steps along the rails with assistance. I watched a little today, and the therapist does have to advance her left foot, but she seems to be able to place weight on it as she moves her right foot.

She is very anxious to go home, but she also is starting to come around to the benefits of Magnolia I keep trying to convince her of. I want to be honest with Mom, without taking away her incentive and enthusiasm. I want to be realistic with her. I tell her that it is good for her to be at Magnolia, where she is getting entertainment, good care, physical therapy, food taken care of, clean sheets, dozens of people she can meet and converse with, and most importantly, the chance to see Dad any time she want, while he is still here. It may not be the quality time she would want, but, like I keep telling her, she needs to take what she can get. It is a good thing I am in sales and marketing, because using my work skills on Dorth seem to be working...Slowly, but working nonetheless.:)

I have been off work for awhile, since after Mom got sick. It has really allowed me to not only try and deal with all that has been required with these situations with Mom and Dad, but to take time to look out for myself. It has still been very difficult emotionally and just plain logistically. I love my job, and I miss my wonderful friends and co-workers, so I am looking forward to getting back. However, I am nervous about handling it all. At least I know that both Mom and Dad are in a good place and being tended to, and that is a weight lifted off my shoulders. But there are still houses and cars and bills to look after, insurance companies to fight with, and whatever else lays in our path. So, I will be going back soon, so wish me luck, and if the blog begins to be a little less frequent, please know I am doing the best I can.

Thank you to all who have been so supportive of me and my family. I know I say it a lot, and I hope that doesn't detract from the sentiment, because I am truly thankful for the cards, phone calls, emails, text messages, meals, food, prayers, wishes, thoughts, visits, love and more. They have kept me going, through it all. They have been a source of happy tears, and laughs, full belly, smiles and an escape I/we have needed. Thank you and bless you all. Just that you care enough read the blog means a great deal to us.

Much love to all!

A very nice weekend.

2009-02-22T23:06:00.000-08:00

Mom had a pretty good weekend, and so did Dad. His pain was minimal. He did wake up and talk a little to me. I just love to see him smile!:)

Aside from the ongoing tour of the nursing home that has become routine when Dorth sees me, we have had some really nice conversations over the weekend. I found out that it is mostly because other visitors have beaten me to the punch. From what I understand, our wonderful friend Patty got the brunt of Dorth's demands before I got there. Bless you Patty for being so good to my Mom...Now and always! Your kindness and patience is truly a gift.

Our friends the Sullivans also came by today. Mom really enjoyed talking to them. She loves her visitors!

By the end of the day, Mom was exhausted. I am hoping that she will get a good night's sleep tonight. One of the nurses told me she worked the night shift last night and that Mom was up all night, calling for pain meds...I could be wrong, but I don't really think she is in that much pain, but she just gets bored, and therefore she concentrates on any pain, and makes it worse by focusing on it. She was dozing off at 7:00 when I left.

Here's to a good night's sleep!

Much love!

"And I will call him Ollie..."

2009-02-20T21:46:00.000-08:00

Well, tonight was quite a nice night with Dorth. I found out it was because my Aunt got their first...So, she got the brunt of the list of demands. By the time I got there, she was pretty settled and we had a great evening. I did push her around the nursing home about 11 times, but we talked a lot, and actually had conversation. We stopped a few times because she wanted to rest her butt a little, which means she wanted to get off of it for a minute...So, I helped her to stand up near one of the hand rails a few times. I have to admit, I am pleasantly surprised at how strong she has gotten, and how well she is doing physically. She still does not have much use of the left arm and leg, but she is getting to the point where she can at least use her right leg to support herself, while the left might help a little with balance. She said today in PT, she was so tired, she almost fell asleep during her workout, so they cut today's PT session short. I think she over did it yesterday.

She had me help her stand about 5 times, and she needs help getting up, and she does need support when she is up, but I was surprised at how balanced she was. And then, when she was ready to get into bed, she still had a cup of decaf, so I decided to have hear sit on the edge of the bed. When she first had her stroke, her PT in the hospital was simply to sit up in bed. She did not do this very well. And even when she first got to Magnolia, she was unable to keep herself sitting upright with out any assistance. So, I figured, I would sit her up and have to stand behind her and hold her to keep her steady. Much to my surprise, she sat on the edge of the bed with her feet flat on the ground, and I wheeled the tray table with the coffee over to her. She rested her right elbow on it in between holding the straw to drink her coffee. She was able to sit there for about 15 minutes. She was pretty much exhausted when I got her in bed, and she was ready for a good night's sleep.

One of the things she has been obsessing about lately is dogs. She tells me that she saw a dog on TV and his name was Dexter, and if she ever got a dog, that is what she would name it. She has told me this story every day for the past week or so. She originally said she wanted a white dog, but apparently she saw a Boston Terrier on a commercial, and now she is fixated on a Boston...But she thinks that dog looks more like and "Oliver," so she said "I would call him Ollie." I told her that I happened to see a Boston at the pet store in Parkway Plaza today, and that he was $800...She doesn't think that she will be spending $800 on a dog. Well, then she started trying to rationalize it by saying that it will be a friend for Newman...My question was why Newman wasn't good enough to be her dog...She said that she wants a "clean dog..." Um...What the heck is that supposed to mean??? I mean, yah, Newman smells...Like Newman...Not sure what sort of scent Mom thinks a Boston has...Maybe she thinks it will smell like baked beans or cream pie...And let's be honest...Who would be taking care of this lovely canine addition? Yah, that would be me. So, I am not really encouraging anything more than the idea of a dog...;)

So, I bought a book the other day on strokes. I just finished reading the chapter on right brain strokes. It says that some of the symptoms can include: numbness or weakness on the left side of the body (check), difficulty in performing daily tasks (check), perception difficulties (check), left neglect (check, but much improved), visual memory impairment (hmmm, not really), excessive talking (check), short attention span (ummm, yah...Big check!), poor judgement (check), time disorientation (check), loss of left visual field (not really...Yay!), impaired abstract thinking (check), extreme emotional highs and lows (check), impulsiveness (oh heck yes, check), and lethargy (um no, but a little of this might be welcome from time to time...). So, I guess what I a getting at is that the presentation that Dorth has is most likely stroke damage, not medication. I still have a lot to read in my book, but there might be some medications to help treat some of my Mom's symptoms, and some may improve with time and rehab. One day at a time...:)

Dad was sleepy tonight, but he did wake up enough to tell me he wasn't in pain, which is always a good thing. When Mom and I were in there, he stretched his hand, and wiggled his fingers, at the same time, Mom put her hand on his leg, and he set his hand down on hers. She is convinced (and elated) that he reached for her..I am not sure if that was the case, but I am sure not about to take that idea away from her. It made her night.

I hope everyone has a wonderful weekend! Hooray for beautiful San Diego weather!!!:)

Much love!

Maybe a little better today???

2009-02-19T23:20:00.000-08:00

Well, Dorothy seemed to be little better today. Now, don't get me wrong, she was still pretty demanding, and agitated, and bossy..But, maybe just slightly, less so.

She was riding a huge high after PT today, where she used the rails to take 10, count them 10 steps and she is getting better at manipulating her right foot. She is getting stronger every day! She still ordered me around, but I wasn't there very long, so, it really wasn't too bad. She wanted to go into the activities room/dining room for some coffee, this was after lots of drama getting her out of bed. But once she was in her wheelchair, she was ready for action.

I made her some decaf, and she was in her wheelchair near the table. She likes to go backward more than forward in her wheelchair because it is easier to push with her foot than to pull herself. So, she kept pushing herself back away from the table into the room, and then she would tell me that she wanted coffee, and I needed to go and push her back to the table. She started getting mad at me when I told her I wouldn't continue doing this, but she couldn't stay mad because I just kept laughing at her and she realized she was being silly...So, she wasn't as mad, but it didn't make her want me to push her back to the table any less either.

Dad was ok, but still sore from swelling. I am still trying to get him more protein in his diet to try and help alleviate the edema. And, I went in and pushed the administrator at the nursing home to change out the house doctor, because we still had that same guy...I hope it will sink in this time that I am really serious.

I will be following up again tomorrow...;)

Much love!

A long couple of days...;)

2009-02-18T22:40:00.000-08:00

Sorry no posts the last two nights, but I have been pretty busy with stuff...I did my parents taxes for the first time. Geez, my taxes are so simple...Theirs proved to be a little more complicated that I had thought, but I got them compiled and to the CPA. And then last night, I spent from 5:30 pm-12:30 am in the Sharp Grossmont Emergency Room with Dad. They decided to send him because his edema (swelling) has not gone away. He still has a touch of pneumonia (you can't tell by talking to him or hearing him breathe), but no sign of infection. They did a blood panel and urinalysis, and all of that looked pretty good.

The doctor came in and told me that the edema is being caused by him not having enough protein in his system. When there is not enough protein, the walls of the veins, vessels and capillaries tend to get a little weak, and they start to leak fluid. This fluid leaks out into what they call the "third space" or "interstitial space," which means it is outside the cells. It is pretty hard to get rid of once it gets in there. My Mom was having the same problem when she was in the hospital, so I asked if we could give him albumen through his IV to help strengthen the walls of his capillaries and other vessels. The doctor told me that albumen only lasts about a day, and then I asked if he got more protein in his diet, if this would turn around. He asked what he had been eating, and I told him "um, nothing, he has been NPO (nothing per oral) since he was admitted into the hospital a week and a half ago, with the exception of the nutrition he is getting through the feeding tube." I asked if he new if the fluid was high in protein, and he didn't. Either way, he told me that they couldn't do anything else for him, so they sent him back to Magnolia.

He was doing ok today, but the edema is painful, so we are helping him with pain meds. And I have asked if they can research if his nutrition is high in protein, and if not, can we find something that is. I will be following up on that tomorrow!

Mom was quite upset when Dad went to the hospital, but she was back to herself today. I am afraid that she is not really changing much with the change in medication. She is still quite agitated all the time. No one ever moves fast enough for her. She wants to do everything right now and boy, does she get mad when she can't. I am guessing that this is just how she will be now...A new personality, I guess. She has brief moments when she says things like "I know I wasn't very nice to you, and I don't know why..." So, I think she understands what she is doing, but just has very little control over, well, anything. So, it has got to be frustrating to be in the situation where she is in a place where she needs help, but to also have little control over your emotions must be a double whammy. It doesn't make it any easier on me or the Magnolia staff, but I just keep hoping that at some point, there might be a sort of acceptance or calming with Dorth...Sort of an awareness or humility. Right now, she cries wolf over everything...Not because she is faking it, but because, to her, everything is a wolf, and a wolf is a wolf, no matter how big, or small or ferocious or tame. Now, please don't think I want her to stop fighting, or trying, or striving to get better or stronger, but it would be easier on all of us, most of all her, if there was some sort of rationalization behind her actions...An awareness of how her actions effect those around her. Everyone keeps telling her that she will get more with honey than she will with vinegar, but the vinegar must be closer...:)

Well, we will have to just keep doing all we can to see if there is any thing we can change to help her along, and just be as patient as we can as she makes her journey...:)

Love to all!

More of the same...

2009-02-15T22:33:00.000-08:00

Well, Mom should be coming down of the new pain meds. They stopped them on Friday, and it takes a couple of days to get out of your system. They now have her on her old standby Vicodin, which she was taking before the surgery. I have high hopes that some of the mood swings and impatience is due to the meds...We will have to see in a few days.

The weekend went pretty well. Dad is still having swelling in his legs, and they took him back off food this weekend. He has another swallow test tomorrow, and hopefully he can go back onto thickened liquids at least, then maybe onto solid foods. His congestion is almost all gone (hmmmm, just a few days after he got Prednisone...I'm still pretty bitter about it all...). He was having some pain today, so he was dozing for most of my visit.

Mom seems to be getting stronger. They can get her standing with support, and she is taking a few steps with a special walker. She is taking a step and dragging her left foot, but it is a start. I am so very proud of her and happy she is making an effort. It is a tough road for Dorth...This does not sit well with her. But, she does like to receive the kudos when she does good. She has been quite a challenge for me and for the staff. Patience does not seem to be in her vocabulary. I can't imagine what she is going through, but I am hoping that some of this is due to medication and she will be a little more tolerant and accepting that not everyone can do things as she deems perfect. This was always a bit of a riff between us when I was growing up. She is neat as a pin, and I, frankly, am not. I would fold something, and she would unfold it and refold it because it was not "just right." I guess I never saw it as much of a problem and always kind of overlooked it, but now that she can't fix things on her own, maybe this is more of and issue than I could have imagined. Either way, off the meds, I am hoping for her to be a little more calm, less paranoid and hopefully happier...Although, she is still happy with her "Britney-esque" head shaving incident...So, I guess that is something.:)

Hope everyone's Valentine's Day was a good one! I got to celebrate my best friend's birthday at a lovely party...Great friends, great food (2 cakes!), some "Rock Band," and lots of laughs. A really nice night with friends...It was a really good break for me!:)

Love to all!

"Aimee...We never get to talk anymore..."

2009-02-12T19:55:00.000-08:00

Well, Dad was talkative today. He didn't make a whole lot of sense, but it was good to have him awake and talking. He is able to have some things by mouth, as long as they are thickened to the consistency of honey. Hopefully, he will continue to improve and he will be back to ice cream and chocolate soon. He did sound a great deal less congested today.

When I first got there, Mom was sleeping, so I went in to see Dad. I got to talking to one of the nurses, and I could hear my Mom hollering for a nurse...So, one of the CNAs went to see what was going on. She came back and said that my Mom wanted decaf, so I told her I would go get it for her. So, in I walk with her decaf. Mom immediately tells me that she needs a new nightgown and robe and a new top sheet, and she needs some lipstick and rouge on and she needs me to help her do this and that...(which is what she does to the staff all the time), and so I spend the next 45 minutes doing all that she asked, with her judging and commenting on how well I am doing everything, which is never up to her standards.

I finally get through with her list of stuff to do, and I need to go because I have an evening class I need to go to (I am trying yoga for the first time...Goodness knows I need some ways to relax). So, she asks me to do another 3 or 4 thngs and I tell her that I can't, but I will let the CNA know on the way out. And she says to me "Aimee, I was so looking forward to your visit, but we never get to talk anymore..." I wonder why...;)

Much love!

Should we call you Kojak? Yul? GI Jane?

2009-02-11T20:38:00.000-08:00

Well, quite an interesting day to say the least. I went down to the hospital after talking to the doctor. Dad was awake and chatty. The doctor sent him back to Magnolia this evening. I asked if they could keep him one more night, but he said there was nothing that can be done for him that they cannot do at the nursing home. So, he arrived just after 6:00 p.m., and he was really hurting. It is such a labor to move him at all, and having been moved almost daily for the past few days really takes a toll on him. The nurses at Magnolia gave him some pain meds and he drifted off to sleep. He needs a good night's sleep. Once we get the infections cleared up, and the congestion handled, hopefully he will be able to enjoy some ice cream and chocolate again soon. And once we can get him fixed up to where he was, we are going to bring in hospice. I am not sure exactly how much time Dad has left, but it is time to start considering his comfort and what little joys in life he has left. He still loves visitors, so if you come to see him, wake him up!

Well, the other interesting thing that happened today, is that I got to Magnolia around 2:00, and when I rounded the corner into my Mom's room, and she was sleeping...Oh, and bald. Yes, bald. More bald than my Father...I am glad she was sleeping because the look of horror on my face must have been tremendous. So, I slowly back out of the room, and turn to the day nurse and with my eyes wide as dinner plates, calmly ask who shaved my Mom's head. She took a step back and said "I told them you wouldn't like it, but Joe approved it..." So, I went to talk to Joe, the administrator, who wasn't in his office. So, I went back to Mom's room, and this time she was awake. I asked her who shaved her, and she told me that one of the ladies in the activities room did it...I asked her why, and she said "because I asked her too, and I like it!" About this time, the afternoon shift was coming on, and one of the CNAs stopped in to say hello...And froze in her tracks, mouth agape, eyes wide...Then she swung and looked at me...I said "Don't look at me, they did this when I wasn't here." I got this same reaction from everyone seeing her for the first time...All looking at me in horror, wondering what happened...

I did finally get in to see Joe, and I asked him if he were trying to give me a heart attack now, and he looked at me, confused. I asked him if he had seen my Mom, and he said "this morning when she came in with Gladys and asked if Gladys could cut her hair..." So, I explained that she was bald as a newborn baby, and made him come and look. He was quite surprised, but she claims to love it and that it made her day. Walking back to Joe's office, he tried to explain to me that he is trying to foster an atmosphere with the staff to help the residents by granting small wishes when possible...He said that although what happened to my Mom wasn't quite what he had in mind, she seems happy...I said, "Yah, today...But what happens when she comes to me tomorrow or next week and asks why I let that happen to her???" One of the ladies saw me wheeling Mom into her room from down the hall, and later when I was calling the hospital to check on my Dad, she said "I saw you wheeling someone before, I thought it was your Dad..." I told her no, indeed it was my bald Mom. I told Mom I am going to tape a bow to her head like they do newborn girls...

She claims to like it, that she has always wanted to do it...Yet when she looks at herself in the mirror, she says things like "I look like a refugee." I told her that they got all the cancer, she doesn't have to go through the hair loss of cancer treatments...One of the things Dorothy likes the most is the shock on everyone's face. She is loving being the center of the action, and is really relishing in it. I am afraid the novelty is going to wear off quickly, and the regret will set in. I swear she is crazy...But, in reality, she was slightly better as far as her mood goes...Good thing I guess. The nursing home has not been instructed by any doctor that Mom is not responsible for herself, so they granted her wish...Oy vey.

Anyway, Dad is back, Mom is bald...Interesting day all around I'd say...Much love!

2009-02-10T23:05:00.000-08:00

Well, today was a good day. I got out a bit with my friend Stephanie. We went to see Dad, had lunch and took a look at computers, and then went to visit Mom.

I did talk to the doctor today twice. This morning, the doctor informed me that they would like to put Dad on Coumadin, which is a blood thinner. It will help to dissolve the clots he has in his legs and prevent new ones from forming. However, it is a really crazy drug. It thins your blood so much that you have to be careful of anything that might cause you to bleed, because it is very hard to stop it once it starts. I shared my concerns with his arms, and although they are better, he still has the significant bruising and splitting of his thin skin. The doctor said that it is either the Coumadin, or he has significant risk of the clots doing damage to his circulation, causing stroke or heart attack, or pulmonary embolism, all of which are pretty bad things. So, he will be starting that treatment today.

Then later in the afternoon, when I talked to the doctor, he said that my Dad failed his swallow test, and he was aspirating whatever he was eating into his lungs. I have been telling them that it is because of the congestion, and if we can just get that cleared up, this would not be a problem. I am not a doctor, but I am with him every day, feeding him, watching him...But, they all look at me with that "I will humor what you have to say" expression...Goodness, this healthcare stuff really sucks sometimes. Anyway, so that my Dad is getting nutrition until this congestion gets resolved, I agreed to an NG feeding tube, the kind that goes in your nose and down your throat. Not the most comfortable, but I think the right thing to do until he can get a little better. The doctor said that they may release him tomorrow, but when I was there early this afternoon, his legs were still very swollen. I am going to go early tomorrow (after I try and get a hold of the doctor on the phone) and see if we can wait until some of the swelling and water retention goes down before he gets discharged.

But, on a separate note, Dad has been more alert and awake and communicative in the hospital than he has been in months! Steph and I, and some of the nurses talked to him, having good, cognizant (for the most part) conversations for about an hour, and then he was awake when my Aunt got there later in the afternoon, and they talked for a while too. I am not sure why he is so awake and talkative..Is there some medication they are giving him (or not giving him) that is causing this? Not sure. But I think it is primarily because he has a change of scenery. New sounds, new smells, new people...And if you know my Dad, he loves to charm people...And I think he figures he has charmed all the ones at Magnolia. He is a lot like this when he goes for doctors appointments...Not sure if that is it, but I will enjoy it all I can!

I only saw Mom briefly tonight. She was very tired, and refused to eat her dinner. She did have her shower today, and she told me she had PT, so that probably took a lot out of her. She did want me to shave her head though...I keep asking her what is wrong with her hair, and she said that she wants it cut a little shorter...Now, keep in mind, the hairdresser gave her a short little 'do a week ago, that is pretty cute on her...Kinda spiky on top...If I cut it shorter, she will look like she has a flat top...I told her we would discuss it tomorrow. I think she is just going through some depression (who wouldn't). I let her sleep tonight, and will go and see her tomorrow, maybe she will forget about the haircut.:)

I found out today that one of my neighbors from when I lived up in Orange County is facing a battle with breast cancer. My thoughts go out to her and her family, her two young sons and her wonderful husband. She is a very tough, strong, determined, smart, sensitive woman, and has gotten me through some tough times in my life. I know that she will take this on like one of her mountain bike races...Strong steady start, peddling hard when necessary, coasting when possible, and despite the hard work and pain, pushing onward, with the grace and persistence she puts into everything she does, taking nothing for granted, and not letting up until she has passed the finish line. Bless you Elaine.

Much love!

Very eventful day...

2009-02-09T21:55:00.001-08:00

Well, today was quite something...It is the best way I can think to put it. It all began with a phone call at 10:00 a.m. from Alvarado Hospital...Long story short, the night nurses were ordered to try and get a urine sample from Dad to see if he has a urinary tract infection, and when they couldn't, they had him admitted to the hospital for the congestion and possible infection. Turns out that this allergy congestion we were begging for the "House Doctor" to treat turned into a bit of pneumonia, and he also was incredibly swollen and retaining water. So, they are treating him at the hospital...I guess Sharp Grossmont was full, and so they took him to Alvarado, where he was seen in the ER and then admitted. But of course Sharp does not want to pay their competitor, so they had him transferred to Sharp Memorial, because Grossmont does not have any room...Sheesh. Needless to say, Dad is getting treatment, and if all goes well, the doctor treating him says he will probably be in there for a day or two. Oh, and by the way...The "House Doctor" is on vacation this week anyway...

Now, I love the staff at Magnolia...The ones that I know anyway...However, the night nurse, who I have never met, I have my doubts about. Upon looking at my Dad's chart, even though there is a large post it and several other notes indicating that I am the main point of contact now, this genius goes in at 4:00 a.m., shakes my Mom awake and tells her that they just transported her husband to the hospital. Freaking brilliant! Maybe he hangs out with the "House Doctor" on their off days...Sheesh.

Just a couple other interesting facts about today...When my Aunt and I got back from lunch, there was a tech doing an ultrasound of my Dad's legs to try and find the cause of some of the swelling (he has a few blood clots that are contributing to the problem, but he is being treated for that too). The tech asked who we were and then proceeded to tell us that he worked with my Dad at Rohr years ago. And Dad remembered him! So, special thanks to Jim Whitemore for cheering up my Dad!

Oh, and he is in one of the new rooms at Sharp Memorial...It is nicer than what it looks like on the TV commercials!!! Flat screen, large, bright room, looks like a 5 star hotel room! The bathroom even has it's own shower! And the shades are remote control! I will have to admit I was quite surprised at how nice it all is. However, I really could have waited a long time before seeing it...:)

Now, as far as Mom goes, she is still experiencing bad mood swings and episodes. We are trying to come up with any answers, and changing what we can. They have changed her pain meds, but it will take a few days for the old meds to get out of her system. So, hopefully the next few days brings her some calm and rationality. We keep having to encourage her to eat...She gets so hung up on worrying about getting fat...I told her that she is only halfway to fat...She needs to be closer!!! She is worried about Dad, but not as worried as I thought she might be. Ah well, who knows, I am not sure what to expect anymore...:)

Anyway, hope all is well with everyone!

Much love!

Very.Long.Weekend.

2009-02-08T19:30:00.001-08:00

Well, Mom has been at odds all weekend. She is mad and frustrated and, well, basically crazy. She has basically turned into Mr. Hyde. I am just not sure what is causing this anxiety, and there are several possibilities. It could be the pain meds too...Just know way of telling. It is just so hard, because she seemed to be doing better for a couple days, but now she seems to be getting worse. For a couple days, we all thought that maybe she could spend a month or two, learn how to best deal with her limitations, get stronger, and that maybe she would go home, with help. But, if this keeps up, I am not sure that is going to be a option for her. I am not making any rush to judgement, and certainly hope it is only temporary, but she has really done a 180 when it comes to being my Mom. She is driving the staff crazy...She will call them in 15-20 times during the night...That lack of good sleep can't be helping. Just taking one day at a time...Although, my friend Steph and her Mom, Joyce stopped by on Friday for a visit and brought my Mom the most beautiful roses from her yard. They smell sooooooo good and are such a lovely assortment of colors. Thank you ladies, on behalf of Mom and me...Because I get to see them every day!

Dad is not doing very well either. I am up to here *hand indicating forehead area* with the so called "House Doctor." My Dad is suffering so much with this chest congestion caused by allergies, and this dumb doctor won't prescribe the short, limited dose of Prednisone that he already did once. I noticed Friday night while I hung out in his room reading that he was suffering from sleep apnea. He has never, ever had that problem in the past. So, our lovely little nurse Ivana called the on call doctor to see if she could get that doctor to prescribe the steroid. When that doctor turned her down, she explained the difficulty breathing and the apnea, and that doctor told her to have him admitted to the hospital. UGH! I had the nurse inform the Administrator, and he came down and told me that he would call this "House Doctor" himself and insist that he come by on Monday. So, Ivana called back and had the on call doctor prescribe some decongestants to hold him over on the weekend, but unfortunately, they prescribed Nasal and Sinus decongestants, so he really didn't get much relief at all.

So, I do have an appointment in the morning, but I am going down to Magnolia after that, and boy if I run into this "House Doctor," he will be getting some strong words from me.

Anyway, I am hoping for some positive changes this week. And maybe some indication of what is really the cause of Dorth's anxiety/insanity...

Much love to all!

Today was a bit of a disaster, really...

2009-02-05T20:13:00.000-08:00

Well, true to form, overdoing it yesterday made today a huge challenge for Mom. I had appointments for the bulk of the day, so when I was walking across the parking lot, I could see several people in my Mom's room. So, I went in the front door, and rounded the corner into her room and said "what is this? A party up in here?" Well, apparently they had just got Mom settled back in bed after falling out onto the floor. It looks like she didn't hurt herself, thank goodness. They told me that she said it was because she was reaching for the phone, and tumbled out...Which got me a scolding from the nursing staff for her not having a cell phone. I wasn't home, but there was a message on my home voice mail from Mom at 9:51 am...It was Mom..."I need you to get down her right NOW! Thank you...*click*." Then later, she told me she fell because she thinks she might have been looking for her hairbrush...I think she thought she could try to get up by herself, but she won't readily admit to that...She says "you may be right, but I just can't remember..."

She really gave the nursing staff a run for their money today. And me too for that manner. She basically disowned me and told me that she needed to call her nieces Lvonne and Lynece (from PA) to come out and take care of her. I told her that they are busy women and have other responsibilities, but they send their love and prayers...She did not like that answer. When I headed home tonight, I asked the nurse to give her an Ativan to calm her down a little.

We went through a lot of the same stuff when my Dad got sick, but I always thought it was because of the tumor...Maybe there was more damage to Mom's brain than I had previously thought...Maybe it is just that being overtired, frustrated, embarrassed, and feelings of being trapped combined create this same effect...I am just not sure. She was just combative and wanted to start an argument with anyone over anything. She eventually threw me out and told me not to come back tomorrow...Boy, is she going to be disappointed when I roll in..:) Actually, she is scheduled to get her hair cut tomorrow, so hopefully she will be rested and in a better mood. I am also convinced that when she is feeling good and overdoes it, it really sets her up for failure the next day. It is hard, because, as she keeps reminding me, SHE is the Mom...SHE is the adult...It has got to be hard to relinquish control of anything to your kid, but, if she continues to be stubborn and bullheaded like that, then she is not going to get better. At one point, she told me to call my Uncle to come down so he could help her...I told her that if my Uncle came down, he would tell her to buck up and adjust her attitude...She didn't like that, but she knows I am right.

So, now she has earned herself one of the loud personal alarms that will alert the staff if she tries to get out of bed again.

Dad was about the same. They have started breathing treatments with a nebulizer to help with his congestion. It seemed a little better, but not much. I fed him dinner tonight, but he has developed this new habit of taking a bite, chewing it forever, and then forgetting to swallow. So, I spent like 20 minutes virtually yelling at him and bribing him with ice cream to try and get him to swallow his mouth full of food. In the end, he drank all his milk, all of his OJ, ate all of his ice cream, and I went and got him an Ensure, which he completely sucked down without taking his mouth off of the straw. And after all that, when I was about to leave, he was more awake than I had seen him in a while. So, I stayed a few more minutes, and he smiled at me, and promptly dozed off.:)

I just want to send a shout out from my heart and on behalf of my parents. Thank you for all the cards and emails and phone calls. Your love and support makes such and impact on us, and personally, it is often what helps me get through the day.

Much love to you all!

A better day...:)

2009-02-04T22:41:00.000-08:00

Well, as predicted, Mom was better today. First, no hot flashes!!! However, she needs to learn how to pace herself. She is so desperate to get better, that she is trying to run before she walks. She did have PT today, and on top of that, she got in her wheelchair 4 times...Including, at 7:00 pm. She asked if there was still time to get her in her chair, and I immediately said "no," and the nurse that was standing there said "yes." Well, who do you think she listened to? So, in the middle of cleaning up dinner and prepping patients for bed, the CNAs got Mom into her wheelchair, and I wheeled her around. A visit with Dad, a couple laps around the building...And she was exhausted...Well, she was exhausted before she got in the chair, but was really struggling at 7:45 when she wanted to get in bed. Well, there was no one available to help her right then. So, I tried to talk her through not overdoing it so that she won't be exhausted tomorrow when it comes to PT time. I think that is what happened yesterday. She had tired herself out so much on Monday, that she needed a day of rest.

Oh, and guess what else happened today...I walk in at about 3:30, and what is sitting on her nightstand? A freakin' telephone! So I asked her who gave her the phone, and she said "Arleen the social worker did and you can't stop me from having it! You can't trap me like that!" Boy, was she mad. She said "why don't you want me to have a phone?" So, I said "I don't want you calling people at all hours of the night." And she said "Don't worry, I won't call you, I will call whoever I want. If I want to talk to my sister, or Paula, I will do it when I want to!" So, I said, "Mom, they don't want to talk to you at 1:00 am because you are bored either..."

I am not sure she remembers phone numbers at this point, so she is probably calling random people...We went through this with my Dad, and he would make the staff call my Mom and me at 2:00 and 3:00 am...Those late night calls are scary. Maybe as she gets more comfortable and more aware of time and what not, it might work out...However, until then, if she calls you in the wee hours of the night because she is bored, I apologize in advance.

She was very tired tonight, and I hope she will get a good nights sleep. They said she slept very well last night. She is still getting used to it all.

She and I wrote some thank you notes tonight, and I was sort of surprised to see that after a few attempts at signing her name, her handwriting was almost as beautiful as it was before surgery. That is one thing I will always admire about my Mom. She has the most beautiful penmanship. Not surprising considering what a perfectionist she is, but I still love how she writes. I bought her a wirebound notebook tonight so she can practice writing, and write herself notes...And any of you who knows my Mom well, she LOVES her notes! And that will help her with her short term memory as well.

Dad was sleepy, as always. He did not want his dinner at all. I got him to have 3 bites of pineapple (yay vitamin C), and all of his milk...That was it. But they usually give him 2 ice creams in the evening. He just loves the sweets. He sounded horrendous tonight with the congestion. The nurse was going to call and see who was on call to see if we could get a 5 day regimen of the prednisone...It has helped in the past. Dad did wake up a little when Mom came in to see him. He didn't really open his eyes, but he was talking to us, well responding to us a little. It is hard to see him like this, but I am glad he is not in pain. It is most likely caused by the delayed side effects of the radiation and the chemo can cause extreme fatigue. And it compounds as you take it, and he is going on his 8th month of chemo. We are weaning him off the steroid he was on (Decadron), and that may help, but we won't know for sure for a few weeks.

Anyway, if we can just get Dorth to pace herself a little, then I think we are on to something. After being there just under a week, she really is improving by leaps and bounds in many ways. She keeps asking me about what is going to happen, and she cracks me up when she says things like "I don't want tennis balls on my walker!!!" And "I think if I get a little motorized scooter, it will be pale yellow...I love yellow." She just has to learn that she does not need to do it all in one day. I am thrilled by her enthusiasm, but if she pushes so hard one day, that she has to rest the entire next day, she may not get better as quickly. Maybe I will have to tell her that famous "Turtle and the Hare" story..."Slow and steady wins the race!" I also think she will do better as her energy level increases. Oh, and they finally weighed her today...And she weighed in at 86 lbs. This is after hi-calorie tube feeding for over a week, combined with actual eating for just under a week, so I can only imagine how much she was weighing when she was in the hospital prior to having the feeding tube. To be fair, she weighed in a 90 lbs when she checked in before surgery, when she was healthy. I told her we need for her to strive for triple digits!

I got her an appointment to have her hair cut on Friday. That will make her feel better I think.

Much love!

There's going to be a few bumps along the way...

2009-02-03T22:22:00.000-08:00

Well, for Mom, today was not as good of a day. She was tired all day, and refused both PT and her shower. She was feeling a little blue by the time I got there in the evening. By the time I left, she was doing much better and was looking forward to a good night's sleep.

I asked the nurse if the "House Doctor" had come by, and she said yes, but he did not write any orders for Mom's prescriptions. UGH! So, she called his answering service and said she needed to talk to him immediately. He called back, and she was able to get him to order the meds we had been requesting. Not a fan of that man...

So, after my pep talk today, a good night's sleep, and the correct meds, tomorrow promises to be a good day for Dorothy. She does keep asking me to bring her a phone, but I am just not sure I want to do that. The CNA's keep telling me that she will be up at 1:00 am asking them to call me, and they don't, thank goodness. I can only imagine what she will do with a phone. I am just going to keep putting it off until I can think of a really good excuse for her not to have one. Wish me luck with that one.

Mom really enjoyed a visit from our friend's the Helmantoler's today. And she was so pleasantly surprised when one of the CNA's that we like so much gave her a get well card thanking Mom for letting them care for her. It is the little surprises in life that make it so special.

Dad was ok tonight. Still congested from his allergies, but he ate quite a bit of his dinner...Well, quite a bit for him anyway. All he would say to me was "Hmmmmm-hmmmmm..." If he wanted to say no, then he wouldn't say anything at all...I did get a "Stop!" at one point when he didn't want any more potatoes, but that was the extent of our conversation.

Much love!

Another day of progress...

2009-02-02T22:31:00.001-08:00

Still trying to get Mom's meds right, but we are not getting much cooperation from the so-called "House Doctor." We have had some battles with him in the past with some of Dad's medication, and now he is causing problems with getting Mom on the right path. Now, I am not professing to know more than him, or to have a medical degree, but it sure would be nice if he would actually come and meet Mom before denying her hormone replacement therapy she has been taking for 30 years...Poor woman is having hot flashes every hour! From what I understand, he is supposed to evaluate her within 72 hours of her admittance...Which he hasn't, and the longer he takes, the longer Mom goes without the meds she has taken for years...Sheesh!

Other than that, she had a really good day. PT came in and got her into a wheelchair, and she and I went and sat outside for awhile, took a couple laps around the nursing home, visited Dad...She really enjoyed getting out of bed for a few hours. It did make her tired though!

She gets her first shower tomorrow, which can't come soon enough for her. She is so looking forward to it. She will also do more PT tomorrow. She was so excited to get into the wheelchair, she didn't really pay attention to HOW to get into the wheelchair. She was also in a lot of pain at the time. However, tomorrow is another day, and I am sure she will eventually realize she needs to be present for PT...Hopefully they can control the pain a little better. They tried to teach her how to maneuver her chair with her left hand and foot..Which resulted in a small circle. Her little slipper was not grippy enough for her to be able to use her good foot to keep the wheelchair going in a straight line. She has a long way to go, but she is certainly motivated.

She is doing well eating, although she spilled her apple juice today, which frustrated her, but she will have moments like that in this road to recovery.

My Aunt and Uncle came to visit and brought Buddy, their (almost) 4 month old Chocolate Lab. He has gotten a lot bigger in the last month! Mom got to see how much he had grown, and tried to show him to Dad, but he didn't really pay too much attention.

Dad has gotten another allergy attack. About 3 or 4 times a year, he gets this crazy allergy issue, where his chest gets all congested. He takes Zyrtec every night as a rule, but sometimes he just gets this awful chest congestion. Before the brain tumor, his doctor would prescribe a short 5 day regimen of Prednisone, and it usually cleared it right up...Well, guess what...The "House Doctor" at Magnolia doesn't really believe in this. We had to fight and fight and fight him some more last summer when Dad had it...And when he finally consented to the medication, Dad got better...Hmmmmm. I wonder if it will be easier this time...We will just have to see.

Anyway, it was just a lovely day, and I got to spend most of it with Mom because I was hoping to meet this "House Doctor," when he was supposed to visit today. Well, he never showed, so I am glad I was there to celebrate in her first day of PT, and to sit and talk with her (and fan her during her hot flashes), for a good part of this beautiful day of sunshine.

Tomorrow is chock full of errands and appointments for me to attend to, so Mom will get her first dose of "doing it on her own" for a good part of the day. I told her I would be there in the evening so I could make sure she would be presentable for her "fanfare." That is what she has started calling all of her visitors. She just charms the pants off of just about anyone who enters the room. The entire staff loves her and she just pours on the kindness and quipy sayings to make everyone laugh. She is just so thankful for the help and happy to be alive. She gets downright mad when one of the other residents is not kind to the staff. She is very protective that way.

And she couldn't be in a better room. The other two ladies are out all day, so when she is in her bed during the day, she is in there alone, and can doze off if she wants. Although, she is beginning to display one of the same habits as my Dad...I think her hearing has improved about 10 times! That woman hears everything! Conversations up and down the hall, car doors in the parking lot...She is all up in any business she can be. She has even memorized how the staff walks so she can identify them as they come into her room. It is crazy! Although she tells me it is because there is nothing else to do. Hopefully, she will begin to enjoy her TV more now that I have gotten her cable turned on.

Anyway, another good day. Looking forward to many more to come!

Much love!

As good as to be expected...I guess...

2009-02-01T21:21:00.000-08:00

Well, you are all probably dying to know how the reintroduction went...Good and bad. I took Dad to the doctor, and while we were waiting for the van to come pick him up, I told him that Mom had been sick and had been in the hospital. His eyes registered momentarily....Then blank. And I proceeded to tell him that she would be getting better and stronger at Magnolia. His response was "Aw, shoot." He meant that he was upset that she was bad enough to have to come to Magnolia to recover, not that he didn't want her there. So, I told him I would meet him back at Magnolia and we would go and see her while he was in his wheelchair. When we got back, I wheeled him into her room. She wanted me to roll him right up next to her bed, and so I did. She kept trying to get his attention and to get him to hold her hand, and he just didn't have it in him. Mom burst into tears. I think she was hoping that him seeing her sick in bed would trigger some sort of protective empathy from him. I am afraid he just doesn't have that ability anymore. She eventually got over the shock of it, and she is anxious to see him as much as she can.

She is doing pretty well. They have not quite gotten her meds right, but she is supposed to see the house doctor tomorrow, and hopefully he will get everything worked out. She is at least doing pretty well on pain meds at this point.

And she is eating!!! When lunch came on Friday, I was upset there was no soup. She was having so much trouble in the hospital eating anything with a consistency dryer than applesauce. Low and behold, she grabs her spoon in her right hand, and begins shoveling the cooked carrots (in little cubes), rice and diced breaded fish into her mouth. She ate about 60% of her meal...Guess I don't need to worry that much about her...:) They will continue to feed her through the feeding tube until it is deemed not necessary.

She is also pretty mentally aware. There are a few things that she is a little mixed up about. She is not sleeping very well, but I think once she gets used to the sounds and people, she will be ok. She is very comfortable there, and the staff just loves her. She also loves her "visitors." So far, it has been my Aunt, our friends the Prestons, our friend Patty, and me...But she feels like the queen of England, because no matter what area the CNAs and RNs are working that day, they all stop to say hello to her at least once during their shift. She is just so happy to see everyone!

They have not really started on any PT as of yet, but I am thinking (hoping) that now that she is more settled than Friday or Saturday, that they will do something with her tomorrow. She is raring to go! She wants to walk again so badly, and is fiercely determined to do so. So, if tomorrow brings PT, her meds fixed, an appointment made for the beautician and her cable turned on...It will be a successful day.

As far as Dad goes, he has 2 months of chemo left. The doctor doesn't think he will extend it past then. He said that there is not a lot of added value extending the treatment past the 6 months post radiation. If there is no significant change in that 6 months (which Dad has had some reduction, but not much more than he had after radiation), then the side effects can sometimes outweigh the treatment. Also, his sleepiness and slow mental decline is most likely a delayed side effect from the radiation and the chemo. It is just a horrible disease that is so hard to get rid of. We will do our best to keep fighting as hard as we can.

I feel like I have been forced to wake up each morning taking one day at a time...Never knowing what the next day will bring...It is a tough, scary, frustrating, illuminating way to live. I guess we all live everyday this way, if we only pay attention. It is sort of the "smell the roses" scenario in reverse. But, then again, it makes me relish every laugh, every smile, every little success...So, maybe I am smelling the roses...And what a magnificent, sweet, exhilarating aroma they have!

Much love!

Home Sweet (nursing) Home!

2009-01-29T21:38:00.000-08:00

Well, as of about 4:00 pm today, Dorothy is the newest resident of Magnolia. She couldn't have been happier. She was so happy to see all her old friends and so relieved to be out of the hospital.

We haven't told Dad as I wanted her to get settled and checked and organized, and she was exhausted just from the transport. I am thinking that I may bring Dad into her room after his Dr. appointment tomorrow as he will already be in a wheelchair. I think if I explain that Mom has been sick, but she is getting better and she is there to get stronger, and then he sees her, maybe it might be ok. There is just no way to tell. I will probably change my mind 4 times before tomorrow actually comes.:) I think it can't wait too long because she is in the next room and it is only a matter of time before someone says something to him about her.

Mom was telling everyone how happy she was to be there and how comfortable she felt. She told the nurse that she was so scared in the hospital and that she is so relieved to be at Magnolia. They are having a little trouble getting her medications ordered, but my Aunt got them to at least give her some pain medication in the interim.

I just called down there to see how she was, and they said she had been dozing off and on, and that they will give her more pain meds as needed until they receive the official approved medication order.

I am feeling so much better that she is at Magnolia as well. This is the start of another battle for Dorth, and a big one at that. But she has cultivated so many friendships with the staff there over the past 6 months that there isn't a one there that is not ready to encourage her and do what it takes to keep her spirits up and keep her motivated.

I hope she gets a peaceful, quiet, uninterrupted night of sleep. You know in the hospital they wake you to move you, poke you, squeeze you, take your vitals...Who could get a good nights sleep with all that? Mom's roommates supposedly sleep through the night, and they are two ladies that get up in their wheelchairs and roll around most of the day. It is a good place for Mom. She is in the room just before Dad's as you walk toward his room, and she is in the bed farthest from the door, near the sliding glass door. The room is a little bigger than Dad's and it is nice that they are close, but not right in the same room. It will hopefully give them both some incentive to want to get up and out of bed to see the other one. Dorth is ready to run, and that should be a good motivation. I am not sure when they will start the PT, but I bet it is soon.

So, I usually don't blog on Friday and Saturday nights because I know a lot of people don't read over the weekend, but I try to have a fresh entry for everyone on Monday morning. I anticipate it will be a good, tiring, eventful, emotional weekend, so I will give you all the lowdown on Sunday night!

Have a great, safe, happy, fun, sunny, enjoyable weekend!

Much love to all!

Good good good good day!

2009-01-28T21:02:00.000-08:00

So the results of the fluid they pulled out of Mom's chest cavity was only that...Just fluid! No infection, no pus, no pneumonia! YAY! In fact, the doctor is planning on writing orders for her to be released tomorrow! We have secured a bed at Magnolia, and if everything goes as planned, she should be seeing Dad and getting comfy in her new, quieter surroundings by tomorrow afternoon!

She was just great today. Starting with the fact that she didn't call me in the morning, which, of course, made me worry about her. I got to the hospital at about 10:3o, and she said she was happy to see me, and when I said that I was happy to see her too, and I was also happy she didn't call me, she said "oh I wanted to."

She actually got quite a few visitors today, and she was able to stay awake long enough to greet everyone. She also surprised me by grabbing a spoon and feeding herself some soup at dinner. She was so proud of herself. She ate pretty good, and although she got tired, she pushed further than she could before. I think that the nourishment is starting to help. She is also off of oxygen, and breathing room air without a problem.

She is so excited to see Dad. She told me that she would need some lipstick, and her minty green nightgown and robe to wear down there.

I am anxious to see what she weighs...She was 90 lbs when she went in (three weeks ago tomorrow), and there has not been much in the way of food intake since then...Should we start a pool?:)

Anyway, it was so good to see her looking good, and having good color and some enthusiasm on getting out and starting her tough road to recovery. It will be bumpy, but as long as we all keep her in good spirits and keep her positive and motivated, she has all the support she needs to be successful.

Thank you for all your good wishes and prayers, for we could not be here without them. And Dorothy will need your strength to push on, and aren't we lucky to have each and every one of you out there to be there for Mom and for all of us.

Hopefully tomorrow's post will be reporting a successful trip to Mom's new digs and reunion with Dad!

Much love!

On the upswing...

2009-01-27T21:29:00.000-08:00

Well, the phone rang at 7:24 this morning...So, as I slowly got my butt going this morning, the next phone call at 8:43 warranted a "I am getting in the car now Mom..." And I walk into her room at approximately 8:55, and she commences with her "Oh I am so glad you are here...I know I am a pain in the a$$..." So, I ask her what is so important that I be there so early, and she says (wait for it...) "wait until you see my male nurse...He is gorgeous..." So, incredulously, I ask her "you called me at 7:30 to come down here to see your nurse???" And she nods her little head and says "yah...He's gorgeous!" What else could I do but laugh...

She was in pretty good spirits today, and seems to be getting stronger. They didn't start the tube nourishment until later in the morning, but she still seemed to be doing pretty good. They had seen on her chest x-ray (they do one every day) that she had some fluid gathering around her left lung. She had the same thing a couple weeks ago in ICU on the right side (probably didn't gather on the left at that time because she still had the chest tube in), and they did what they call a thorocentisis where they use and ultrasound to guide a small needle into the chest cavity, and drain fluid from around the lung. So, she had another one today on the left, and they pulled out a half-liter of fluid. It has got to be easier to breathe for her now! The fluid puts pressure on the lung and makes it hard to inflate all the way. They will send the fluid out for tests.

I didn't make it down to see Dad, but my Aunt said that he was up and talking the entire time she was there last night. So, maybe it is just catching him when he is ready to be awake.:) I will see him tomorrow for sure.

Mom got lovely flowers from our cousins Colleen and Gene, and I had an amazing dinner of soup from my Mom's neighbors and a salad from my Aunt and Uncle's lettuce garden. Sometimes the simple things in life mean so much. Thanks to you all, and thanks for checking in on me with phone calls and cards and time spent. You guys out there are my support network and I couldn't do it without your love, prayers, support, and good wishes.

Mom's spirit is up and I hope it continues. If the tube feeding all night does what it is supposed to, then tomorrow promises to be a great day.

Much love!

Another very long day...

2009-01-26T22:12:00.000-08:00

So, I was awoken by the ring of my cell phone at 7:36 a.m....I scramble from a dead sleep to grab it and I say "Hello?" absolutely scared to death...And I hear "Amy? Where are you? Come down here..." I try to convince my Mom that it is early and I am sleeping, but she will have none of that. So, I tell her I am on my way. Approximately 30 minutes later as I am getting in the car, I get another call...I answer..."Hello?" And I hear..."Hi Aimee, it is Dr. Bodkin, and I am here in your Mom's room and she wanted me to call you and see where you were..." So, yes, my little Mom has charmed her oncologist to do her bidding...Is anyone surprised?

I get there, prepared to give her a firm talking to about calling me so early, and as I round the doorway into her room, her whole face lights up and she says "Hi honey! I am so glad you are here, I am sorry I called you but I just feel so much safer when you are here..." Damn, what was I going to say to her??? How can you get around that...Wait, dammit! She charmed me too! And I thought I was immune to her...Nope, probably never will be either...And that is just fine with me.:)

Even with the good (albeit early) start, today proved to be another long and traumatic day. They placed her PEG (feeding tube in the abdomen) today. Unfortunately, they had to put in an NG feeding tube (the kind that goes in your nose and down your throat) to prepare for the PEG placement...That was pretty much sheer hell for Mom...And who could blame her? After that, they did the daily chest x-rays, and took her to place the PEG. Under mild sedation and local anesthetic, they placed the tube. She was pretty groggy when she came back up to her room, and pretty much missed a visit with one of the nurses from Magnolia (Dad's nursing home) who stopped by to see her with a card from the staff and flowers for her. I walked out with Ivana (the nurse) and ran an errand, then took some Costco pizza down to see Dad. He didn't wake long enough to even get a taste. Oh well, we will ask the Dr. on Friday if anything else can be causing his sleepiness.

I went back to see Mom, and she was really groggy...Not sure if they went a little heavy on the pain meds because of the procedure, but I was even afraid to give her any food for fear she wouldn't be awake long enough to swallow it. Mom's neighbor Cathy came by to see her, but Mom said a few things and was off to sleep again. The doctor should put in the order for nutrition and she should begin receiving nourishment through the PEG tomorrow. If all goes well, and she can remain pretty stable, there is a chance she may get released sometime in the next week. We just have to wait and see, and hope. I am hoping that there will be room for her at Magnolia when she is released. There is an open bed in the room next to Dad's right now, but all the cards will have to fall into place. We will just have to hope they do. Magnolia is aware, and the marketing director has stopped in to see her a few times, so I know he will do all he can.

I got home tonight and had a yummy Cobb salad courtesy of my friends the Russo's. They were kind enough to leave me a care package of groceries on my doorstep as a wonderful surprise last night when I got home. Just a handful of bags filled with snacks, quick cook meals and fruit...A Godsend...Thank you so much guys...It was nice to have something else for dinner for a change!:) I have soup coming from my parent's neighbor tomorrow. It is truly remarkable how blessed my family is to have such amazing, thoughtful, caring, giving friends and family. You have all touched us in one way or another, and I cannot express how grateful we are to have each and every one of you in our lives. Even caring enough to take the time to read the blog is a kindness in itself. Thank you for that too.

Oh and Lvonne, thank you again in advance for my massage...I will be going next week if all goes well with Mom.

I am off now to enjoy a pudding cup (thanks Joanna and Craig), and I hope to have a positive entry tomorrow!

Much love!

About the same...

2009-01-25T21:14:00.000-08:00

I keep thinking Mom will get worse or get better...Of course I am hoping for getting better. But, she continues to stay about the same. Something gets better, and something gets worse. At this point, I think her biggest challenge is to get enough nutrition for her body to run. She is so weak that she is exhausted after a few bites of soup or a few sips of Ensure...Especially if you make her use a straw. So, we talked it over, and she is going to have a feeding tube put in her stomach tomorrow. This will allow her to continue to try to eat with her mouth, but it will allow her to get enough fuel to make her body stronger. They can also give her pills this way so she doesn't have to eat the applesauce with ground up pills in it...Yeck.

She continues to be very tired (also probably from lack of food), and is still having a hard time with pain. She is asking more questions about the future, and what she has in store, and she is much happier when I am there. She calls me each morning about 9:30 (with the help of a nurse) and asks if I am coming and when I will be there. And when I get there, she says "I am so happy you are here, I feel so much safer." And then she usually dozes off if she is comfortable...This is beginning to be a pattern with both parents.:) She still continues to do the open-eye sleeping thing from time to time...And let me tell you, it is creepy! She told me that she scared the heck out of one of the nurses when she came to check on her and she was staring up at the ceiling...Sound asleep. I almost think she forgets to close her eyes. But she counters that with "it feels so good to be able to open both eyes and see!" That has been a good thing...Her left eye is probably 99% back and she is no longer seeing double...If it is not one thing, I guess it is another.

I did get to spend some time with Dad yesterday. I tried to get him to wake up and talk to me, but not so much. We go to the doctor next week, but I don't know why he is so sleepy all the time. I do know that the chemo and radiation can have long term effects and fatigue and lethargy are common. We are weaning him off a steroid that he has been on since before the surgery, which may help. The skin on his arms has been very bad, but seems to be clearing up. This skin is so thin that he gets bruises, almost like big blood blisters, and then the skin splits and he has all of these open ulcers. But, the nursing staff has been diligent about keeping them clean and treated, and they are so much better. This could be a side effect of the steroid, which he should be done with soon. You can't just quit a steroid. Your body has to slowly get used to manufacturing that naturally. So, he should be done in a week or two, and that should help with the skin issues.

Today, he woke and talked to me for about 5 minutes, and then dozed off...And then, so did I. LOL...What a scene we must have been! Him in bed, and me in the chair...Snooozin'. Ah well, when I did go to leave, I went to tell him goodbye, and he got a little chatty. But that was short-lived, and I am sure he was asleep by the time I was out of the building.

Here is to hoping for a week of good progress and successes.

Much love!

A tough day for Mom...

2009-01-22T21:30:00.000-08:00

Poor Mom, not that she doesn't have enough to deal with, but this morning brought her so many frustrating little inconveniences, it put ME in tears.

First of all, her PICC line got blocked somehow, so they were unable to give her the IV pain medication, and then, instead of doing her chest x-ray from the room, they wanted another view so she went down to x-ray for it. And the poor x-ray tech tried to pull her up and accidentally pulled out her catheter...Um yah...That had to hurt...Real bad. When they got her back up to the room, they put in a peripheral IV line until they could get the PICC unclogged, which took 3 tries...Poor thing was just getting beat left and right. It was so hard to see this...It makes me feel so helpless.

She still is not eating enough. The doctor who was originally treating her in the ICU came back today, and he did not seem to be as concerned with putting the feeding tube back in. He said that he would rather try and stimulate her appetite and try to get her eating more. It is tough though, it is a vicious circle...The simple act of chewing and drinking makes her tired, so she doesn't really eat much, which makes her body weak, which makes chewing and drinking make her tired. And she is not only not getting enough nutrition to help her to get strong, she is also having problems with her electrolytes, and they are having to give her potassium and magnesium supplements to keep her in balance.

She does seem to be sleeping better and seems more, I don't know, calm...Or present...Which is good. She was really cute tonight. She was asking who all I had spoken to, and if I hadn't spoken to someone she thought I should have, she chastised me a bit. She asked how my dog Newman was, and then a few minutes later, asked me how "Tiffy" was. Now, Tiffy was my dog growing up, who has been gone about 16 years. So, I told her that we didn't have Tiffy anymore and she said "well then, who do I have?" So, I told her that she didn't have a dog, but she enjoyed when Newman came over for visits. She said, "oh yah."

I stayed a little later than normal, so I didn't make it down to see Dad today. I hate missing a day, but I know that the CNAs take good care of him, and he most likely will have slept the evening away anyhow. I will go tomorrow for sure.

As I was telling Mom goodnight, I told her to have sweet dreams...And she said "yah, me and my imaginary Tiffy." Then she sort of cocked her head to the side and said "do you think it is because of the stoke?" So, I told her that her brain is trying to make some of those connections that were lost, and that some of that may happen in the process. She is actually pretty with it for all that has happened.

Just got to get her strong and healthy...Got to try each and every day!

Much love.

So many emotions for one day...

2009-01-21T23:47:00.000-08:00

Well, there will be good days, and their will be not as good days. Today for Mom was good, but not as good as yesterday. They did a chest x-ray this morning, which they do every morning, and it did not look as good as yesterday's. She appears to be getting a fluid buildup around her lungs. This can have implications with breathing, but can also cause congestive heart failure. They are giving her diuretics to try and help her body to clear that stuff out. I will be anxious to see how tomorrow's x-ray turns out.

Also, after a lot of futzing, I think today's nurse may have gotten close to balancing out her pain meds so she is not in excruciating pain half the time. I sure hope so. I am not sure if it was the pain or something else, but she is just not eating enough food to make her body function. The doctor wants to put the feeding tube back in, so they can at least give her the nutrition her body needs to help her get strong. She is unsure about that, so I told her that she needs to sleep on it, and we would talk about it in the morning. She was just so tiny to begin with, she doesn't have the mass to go too many days without proper nutrition.

I saw Dad for a few minutes today. He woke up just for a little while and I was able to share some good and miraculous news I got today with him. My wonderful, strong, funny, down-to-Earth friend found out last month that she would be battling lymphoma for the third time. The last time, the chemo did so much damage to her heart that she had 2 open heart surgeries in 4 months, and it still doesn't work quite right because of that. So, the news that she would have to go through treatment again in her 39th year of life was almost too much to bear. She called today, and then sent out and email announcing that, through some strange lymph system condition that can be caused by Hodgkin's Disease, the biopsies came back negative, and she is cancer free!!!!!!!!!! They had gone so far as to put in her port for the chemo, and the doctors planned on using a chemo formula from the 50's to avoid any further damage to her heart. My Dad was so happy, and he started crying and could not believe how amazing and great the news was, and...Then he dozed off. I waited a few minutes and came home.

Then, on Facebook, I was contacted by one of my good friends throughout Jr. High and High school. A wonderful surprise after 19 years. I knew she had married a guy from our school, and as I read into her profile, I realized that he passed away over Thanksgiving.

What a heart-wrenching, joyous, maddening day. So many hi's and low's in just one day is hard for me to deal wit

So many blessings today...

2009-01-20T23:32:00.000-08:00

Although today for me started a little rough, when my Mom called me at 7:00 a.m. to yell at me because she was really mad...It proved to be a truly miraculous day. I spent a couple hours at the hospital with her this morning, and she was nothing but mad and frustrated with me (well, that is what she said...What she meant was that she was mad and frustrated at the situation). She had pulled out her feeding tube during the night, and then got even madder when I told her that she was in pain because she had removed one of the methods for her to receive medication. I got used to this anger and irrationality with my Dad, and I still think that beyond the understandable frustration with being so confused, that a lot has to do with the nicotine. The hospital doctor still refuses to give her a patch.

But, tonight, when I arrived to find her eating dinner with the help of our good friend Patty, with her chest tube removed, her cheeks looking rosy, and a smile on her face when she said "Aimee! I am drinking decaf coffee," my heart just sang. She proceeded to tell me that PT had come by and they had her sit in a chair for about an hour to eat her lunch, and that Dr. Moore (the radiation doctor) came by to tell her that her chylothorax had healed on it's own and she would not need surgery to repair it! She was the best I have seen her look in a very long time.

She was in better spirits this evening partly because my Aunt and Uncle came down and gave her a pep talk which seemed to make a big difference. I am hoping that some of that attitude continues on. She needs to keep up that spirit for the journey ahead.

I did stop to see Dad, but he slept...Again.

I go to sleep tonight with a sigh of relief, some silent prayers, grateful for the gifts we have been given, and a hope for peace and strength and patience in the days to come...And also hoping Mom doesn't call me at the crack of dawn to yell at me again...Who gave that woman a phone???:)

Much love and gratitude.

So long ICU!

2009-01-19T21:29:00.000-08:00

So, this evening, they moved my Mom upstairs, out of the ICU! YAY! They have stopped the TPN (intravenous nourishment), and started giving her a formula through her feeding tube. If she tolerates that well, then on to some real food, I hope!

One drawback, she has a phone in this room. So far, since I left at 7:00 she has had the nurses call me 3 times. And, she doesn't even want me...She wants to talk to my Uncle, actually, she wants him to come down. I still think it is our old friend nicotine rearing it's ugly head. I didn't get a chance to talk to the doc today, so tomorrow, I will see if we can get that thing reinstated. So, we will just have to see how it all works out.

Dad might have caught a bug that has been running through the nursing home. He seemed to be feeling better today, and he doesn't have a fever or anything, so hopefully it was a fluke.

I am looking forward to tomorrow morning, in hopes that we can see what the next steps are with Mom. But, I am also so grateful that it was not just my imagination that she was getting better...She really was!

Still not out of the woods, but the trees are beginning to thin out a little...I will take it!

Much love!

And the weekend pushed on...

2009-01-18T22:43:00.000-08:00

The weekend brought more of the same with Mom. Which is a good thing in my book. Her body is getting stronger and healing, and her emotional state and frustration seems to decline a bit. She did complain of pain today, but she has to be sore from just laying in bed...Not to mention the IV's, chest tube, incisions and such. They do a pretty good job keeping up with her pain level, but they have to almost be schooled with my Mom...No one my Mom's size should require as much pain meds as she does...But, with her constant back pain, she would take Vicodin pretty regularly. That makes a difference for sure.

I am looking forward to talking to the ICU doctor tomorrow as they were discussing maybe trying some solid food to see the state of her lymph duct. She has been saying she is hungry...My favorite is when she ordered me to call Pat and Oscar's so she could have a chicken! I also want to see if he will let them put another nicotine patch on her...The weekend doctor discontinued it at some point this weekend, and I knew it first thing when I walked in this morning...I can tell when she is very mad and frustrated AT ME, and only me, it is a sure sign of nicotine withdrawal. So I hope they can give her something...The nurse today told me they started her on Lexapro, and anti-depressant, so hopefully that will also help.

Dad was good today too. I went and we watched some of the Steeler game together, and then he dozed off. So, I headed back to Mom, and she was sleeping soundly.

The start of another week...Hard to believe that it has already been 10 days...10 eventful, emotional, frightening, frustrating, purposeful, enlightening days.

Much love.

Stable today...

2009-01-15T21:58:00.000-08:00

Mom was not much better, but not much worse today...I will take all I can get. She did get several hours of eyes closed, mouth open, snoring sleep today though...Finally. That has got to help her body. They also are futzing (I know...Nice medical term...) with her antibiotics. They took a chest x-ray and her lungs looked a little more "wet" (the Dr.'s word, not mine), which could indicate pneumonia. So they are trying to fight that off by keeping her on oxygen, encouraging her to cough and antibiotics.

They also gave her a pint of blood (packed red cells) today to help her body to get stronger. They also removed her CV line they put in during the surgery (the one in her neck where they can draw blood and deliver meds) and put in a PIC line (a more permanent intravenous line that can stay in for several weeks).

Her vitals were more stable today, and they continued to test all of her fluids on a pretty regular basis.

She is growing more frustrated and depressed, so I just keep telling her how strong she is and to keep fighting...Sometimes she's with me and sometimes she isn't. I just keep on pushing her to be positive and to keep being strong.

Also talked to a radiologist today about the issue she is having with the fluid in the chest tube. She has what is called a chylothorax, where one of the lymph ducts has a tear in it...In this case, the thoracic duct. As I said, the treatment now is to feed her intravenously to give the duct a chance to heal. The radiologist said it is about a 50/50 chance it will heal on it's own. The ICU doctor said he would wait 7 days and try some different nutrition to see if there was any progress. The radiologist told us of some other options to repair this if it does not heal on it's own...None of them have a great success rate because the little tube or duct we are talking about is so tiny...Less than 1 millimeter in some cases. So, the doctor told us of a couple options that we may have to look at if she gets better from everything else, and the lymph duct continues to be a problem...But that is at least a week away. So, for now, I am just hoping that a little luck...Ok, a lot of luck swings our way and she continues to improve, AND the lymph duct heals on it's own.

I saw Dad for awhile, but he was pretty sleepy. So, I sat with him, and read my book for about an hour, kissed him goodnight and went back to see Mom. She said she was tired, so I left in hopes she would get more sleep...And I could get some shut eye myself.

So, onward we push...Day by day, moment by moment...Hoping, praying and being thankful (me), and healing (Mom).

Much love.

2009-01-14T21:03:00.000-08:00

Today brought some pseudo sleep for Mom. At least I think it did. I spent a few hours with her this morning, and although her eyes were open, I do believe she was getting some much needed rest.

Her vitals were lower today, but, I think they were borderline on "too" low. Her heart rate was down around 78, and her blood pressure was like 72/41. They were doing their best to keep her stable. She did perk up a little in the afternoon, and she was repeating her paranoid stories from yesterday to my Aunt. She was not insisting on the ice chips like she was yesterday, and she had shifted a bit thinking she was at home. Just taking one day at a time...

I have systematically run into most of the doctors who treated her when she went in for her eye in December, and Dr. Zu, my Dad's oncologist, and then this afternoon, the doctor that performed the carotid surgery on Mom in October. When I told him what had happened, he went in and looked at her records, and came in to tell me that her carotids looked good. He was afraid something had happened with what he had worked on. He is a good doctor, pretty cocky though. He was actually quite sympathetic, and said he would come back and see her when she was awake...Boy was she bummed she slept through seeing the "handsome" doctor!

I did see Dad for about 20 minutes...I was there over an hour, but he fell asleep.:)

Today was a bit more of a struggle for me. As time passes, the level of emotion waxes and wanes...I am sure it is all normal...But I do know what they mean when they say you have the "weight of the world on your shoulders," because I do. When I get up in the morning, my arms feel so heavy that they almost feel that they will pull from their sockets, and that my shoulders are being pulled so hard by gravity. But hey, if I make it out of bed in the morning, I have conquered the first of the day's battles! Thank goodness for the tremendous love and support that surrounds me...I have heard the saying "it takes a village," but I always thought it referred to raising a child, not me...:) Either way, I am a lucky girl to have what I have, and who I have.

Much love and hope.

Categorically better today...

2009-01-13T22:40:00.000-08:00

Well, Mom seemed stronger today, and her vital signs looked better..But she was a little paranoid and hallucinating...Hmmm. I remember going through this with Dad, and I know it will pass, but it is still pretty exhausting trying to convince her that the ICU staff is not out to get her...Ah well...

The results of the MRI came back inconclusive for the tear in her lymph duct. The doctor said it is very small and very hard to see on any kind of test. However, they have put her on TPN or Total Parenteral Nutrition, which translates to feeding her intravenously. This ensures her body gets the proper amount of nutrition, and will hopefully give this tear (wherever it is) a chance to heal on it's own. She is allowed ice chips and sips of water now...I guess her swallowing is ok enough to handle it in small doses, but she has been begging for water and ice, and now that she has it, she can't get enough. She demands more ice even though she already has a piece in her mouth. The doctor said that because they have her so hydrated with saline, the salt ratio may be a little elevated in her body, making her think she is thirsty.

All in all, despite her agitation and confusion today, and a little bit of negative talk, she really did seem to me to be a little bit better.

I did see Dad for a little while. He was kind of talkative today, and in quite a good mood. He did bring Mom up once, but I sort of steered him away from the subject, and told him that she was resting...Not really a lie...It is so funny that with all that has happened, and after being an adult for all these years, I still have a hard time lying to my Dad.

Well, hoping tomorrow continues to show improvement.

Much love.

So tired...

2009-01-12T22:03:00.000-08:00

Well, Mom was definitely not as spunky today. She seemed to be having less pain, which is good, but she still doesn't seem like she is sleeping, so I think she is just exhausted. She did eat about 75% of her breakfast though, so that was encouraging.

Also, she had some lymphatic leakage into her chest tube, so they did an MRI to see where that was coming from. We are still waiting for the results.

I saw Dad for about an hour today. He was doing really well and actually quite sweet and chatty...Well, chatty may be stretching it a bit, but he was awake and seemed to be in good spirits.

I went and saw my Mom for a few minutes tonight. She said she was tired and told me it was time for me to go home. I am a little worried because her heart rate was irregular, and the night nurse was doing some tests and keeping the doctor informed. They were beginning an EKG when I was leaving. Her blood pressure was pretty good, but she also had a little bit of a fever.

So, just keep up with those prayers and good thoughts, if you will.

Much love.

Damn nicotine...

2009-01-11T21:36:00.000-08:00

Well...I am so glad that my friend mentioned to me last night that she must be going through nicotine withdrawels...How the heck could I forget that??? Well, they gave her a patch today, and in addition to futzing with her pain meds and a few other things, today was a better day.

Mom was still frustrated and upset, but she was also being very sweet and making a few jokes. At one point she told me she was standing by the side of the bed, and I told her "No, Mom, you weren't doing that..." Well, the nurse came in and corrected me and said that the PT had her stand up. So, score one for Dorothy! Now, I am not sure how assisted she was, but it still seems like good news to me.

We are not out of the woods yet, but hoping it will get a little better each day...Each moment.

I saw Dad today...But he was particularly tired, because he shooed my uncle out in the morning because he was going to nap, and he was sound asleep the whole time I was there, and was not interested in opening his eyes. I left the Charger game on (how depressing), and went to see Mom.

More hopes for tomorrow...Much love!

Ongoing devastation...

2009-01-10T21:35:00.000-08:00

Well, it goes from bad to worse...To unfathomable.

It turns out Mom also had a small heart attack yesterday afternoon. They are keeping her blood pressure elevated to help perfuse blood into her brain, and that puts stress on the heart and may have caused a heart attack. There is no visible damage to the heart muscle at this time, but she had an abnormal rhythm, and the cardiac enzyme in her blood was elevated.

They cannot treat the heart issue, as it would usually require blood thinners, which would cause further bleeding in the brain,and perhaps the lung.

She also has a high white count which usually indicated infection, so they are giving her tons of antibiotics.

So, they are doing all they can to prevent any further issues, while still trying to maintain the old ones...And those things are contradictory...

She was very combative today...But who could blame her? I am hoping that the feistyness is a good sign and mean she will continue to fight to get better.

Please no visitors for now. I am so thankful for all your support. If you are asking yourself how I am getting through this??? The answer is I am not...But time keeps going anyway. With the love and support of family and friends, I am somehow still standing up...So far.

Much love and hope.

It keeps getting worse.....

2009-01-09T15:59:00.000-08:00

Well, I was awoken early this morning by a phone call from the ICU. Mom had a large stroke in the middle of the night. It is on the right side of her brain, and she has no use of her left arm or leg. As of now, she is still speaking, and has her memory and knows what is going on.

They think she had a blood clot break loose and cause the stroke. She is not a candidate for TPA, the clot-busting miracle drug because she just had the surgery, and you don't want to break loose the clots that have formed from that.

The next 48 hours are critical. They are trying to control the swelling in her brain.

I am just trying to fathom it all. I have been surrounded by family and friends all day, just waiting. This makes it difficult for her to recover from the surgery, and puts her at a higher risk for pneumonia and other complications.

Please keep Mom in your prayers...I know you guys have been great so far, but we need more...Thank you.

Much love.

Surgery was a success...It has been a little dodgy after that...

2009-01-08T22:27:00.001-08:00

Well, the surgery itself was a great success! The Dr. used a camera scope and was able to do the surgery with a small incision (3-4 inches), and did not have to break any ribs. The tumor margins were clean and there is no evidence of any involvement of the lymph nodes. Super super news!

The surgery started a little later than they thought, but it was only about an hour (just like the Dr. had said), and it was over and the Dr. came out to talk to us around 2:00 or so...So when they hadn't come to let me know she was in her room by 4:30, I was a little concerned. Typically, recovery is about 2 hours. I asked and they told me she would be in recovery another hour or so. So, I grabbed a sandwich from the cafeteria, and patiently waited until about 5:45. They called over to ICU and told me they needed about 10 more minutes to get her settled. So, I went over to the Surgical ICU waiting room, and about 10 minutes later, a nurse named George came over to talk to me. He told me he had been taking care of her all afternoon, and they were really struggling to control her pain.

He said that they gave her what was supposed to be a long-lasting epidural, but were afraid to give her too much medication for her size, so they didn't give her enough. Once that wore off, they could not curb her pain. For being so tiny, Mom has a huge tolerance for pain medication. She has had incredible back pain most of her life, and it isn't unusual for her to take Vicodin for her back. Well, this really puzzles the nursing staff, as they are giving her Dilaudid and Morphine, and it only lasts a short while. By the time I got into see her (she is in the same ICU room as my Dad was when he came out of surgery), all she could tell me was that she needed help and was hurting and she could not get comfortable. She would start to doze off and then wake back up asking for help. The nurse said that this surgery is very painful, and she wasn't surprised Mom was hurting.

Well, after 3 doses of Morphine and 2 Vicodin in just over an hour, the nurse suggested I leave so she could rest...I just now called back to talk to her nurse, and he told me that they had over medicated her and her respiration dropped too low, so they had to counteract the pain meds, and voila' she was in pain again. I hope tonight and tomorrow bring her some relief. It was a really big day.

I left the hospital and went to see my Dad for a few minutes, ran to Bed, Bath and Beyond and got him a new microwave heat pad (since the nursing home decided to wash his other one...Even though it said "DO NOT WASH" in big black letters on it), and came home. I made a few calls, fed and walked the pooch, and I am just about to fall into bed and pass out...:)

So, Mom will probably be in ICU for the next day or two, unless they cannot figure out how to control her pain, then maybe longer. We will just have to wait and hope for a better tomorrow.

Thank you for all your good thoughts and prayers! Thank you for your calls and texts and to Paula, Johanna and Judy for keeping me company, and Jay Carlson for once again being our O.R. Angel and giving us periodic updates. I still continue to be pleasantly amazed at how fortunate we are to be surrounded by such wonderful, caring, thoughtful friends and family. Thank you all!

Much love and hope!

The Big Day!

2009-01-08T00:06:00.001-08:00

Tomorrow is the big day...Surgery starts at 12:10...I hope the surgeon has a good breakfast or brunch...:)

Today was a rough day for Mom. Of course she is scared, and worried about Dad while she will be recovering, and wanting to have everything in order, and the surgery itself. She was just frazzled today. I did get her to calm down a few times though. After Dad's appointment with the radiation oncologist, she and I walked over to the dentist's office...Always a smiling face and a hug to be found there. That did her good. Then we went to lunch and she relaxed a little there. She managed to wind herself up between lunch and when I got her to go down and see Dad at 5:30, but she calmed down over dinner and then we went over to see my Aunt and Uncle's new Chocolate Lab puppy...It is amazing how a puppy can just make everything seem just a little bit better...:) And Buddy is no exception. He is 12 weeks old today and cute as can be...Big, but cute! And has the best temperament. Anyway, we probably stayed a little too late visiting Buddy, well chatting, as Buddy fell asleep and was having little puppy running dreams on the floor, but I was trying to keep Mom from having too much time to think about tomorrow.

Dad went to see the radiation oncologist today, and he seems to think everything is going pretty well. He agrees with the chemo oncologist that we should wean him off of the steroid, and he thinks that may be contributing to Dad's skin issues. One can only hope...

Anyway, I am gonna hit the hay and hope for the best tomorrow...Thanks to all for your good thoughts and great prayers (thanks Lori), and I will post an update tomorrow.

Goodnight.

Taking the bull by the horns...

2009-01-06T12:13:00.000-08:00

Well, Mom and I went to the thoracic surgeon yesterday. She was fully convinced she was going to talk him into postphoning the procedure...She finally caved when he told her that if she waits, she could be dead in a year or two...That worked pretty well.

So, Mom is scheduled to have surgery on Thursday. She will be in ICU for a few days after surgery, and 4-5 days in the hospital in total. The Dr. said he will try to work in as small an area as possible, but he may have to remove a couple ribs...Yikes! She is just so tiny, and he needs to get in between her ribs to remove the lower lobe...Ugh...Sounds painful to me! But the surgery should last about an hour or so.

Mom is scared, as to be expected, but I think she knows she needs to get it taken care of. She goes for her pre-op blood work today.

She is worried about Dad, and how he will handle not seeing her for awhile. I told her we would do our best to keep him thinking she is just feeling under the weather...He doesn't have a good grasp on the concept of time anyway. I think he will be just fine.

He has been having some issues with the skin on his hands, arms and neck/shoulders. It starts as red bruising, almost like blood blisters, and then the skin splits, and he has an open skin ulcer. They cause him a lot of pain. It is difficult because he still is very cold, but now it hurts him to have the blankets on his hands. I have been working with the nurses and his doctors to try and find out why this has just recently started. He really has not had much change in his medication or anything, and it is not like he is really getting out of bed much to have people tugging on his skin or anything, so it is just a puzzle. We are researching side effects of his meds to see if we can find a connection.

We are going for a follow up visit with the radiation oncologist tomorrow...Maybe he will have some insight...:)

Anyway, 2009 is on it's way! And let's go Chargers in Pittsburgh...(S0rry Lvonne;...Oh, and Steph).

Much love!

Welcome 2009!

2008-12-31T13:15:00.001-08:00

Early Happy New Year's to everyone!

I hope your Christmas was wonderful! Ours was nice...Different, but nice. Mom and I had a nice day, cooking prime rib, exchanging gifts, watching Newman play with his new toys, and we even shared a nice game of bowling on my new Nintendo Wii. After dinner, we went down to see Dad. It was a very quiet Christmas, full of the important things...Love, being together and hope.

Mom and I went to see the thoracic surgeon on Monday, and they have scheduled her to have the lower lobe of her right lung removed early next week. We will know Monday which day they will do the surgery. It is a big surgery, but it has the best outcome of all the procedures. Mom will be in the hospital 5-6 days and will be recovering at home for 4-6 weeks. I am not looking forward to Mom having to endure the pain (or me having to endure Mom having the pain), but I am looking forward to putting the lung cancer thing behind us. I think she is too.

The Dr. is optimistic that this will take care of it. No chemo or radiation to follow. All good news.

Once again, we aren't telling Dad. I am not sure how long the "Mom's not feeling good" excuse is going to last this time, but Dad really doesn't have a great sense of time, so hopefully we will be able to keep him at bay until Mom feels up to going down for a visit. It will probably be a week or two before I can take her down, but hopefully it will motivate her to want to get better quickly.

Tonight should be quiet and hopeful. I am spending it with friends, and Mom is planning on spending the evening with Dad and then going home.

I am ready for 2008 to be gone...It has continued to be just heartbreaking over the holidays...After a good life of 19 years, my good friend Rachelle's dog Penny passed away, and I know she and Tucker are somewhere running through the fields together and falling asleep in the sunshine, and my friend Chris's house nearly burned down on Christmas day. Her portion of the duplex did not burn, but there is smoke damage, no power and she is homeless and living with my friend Chelle (who broke her left foot and right ankle a month ago)...Sheesh, I am beginning to think it is me that is bringing the black cloud...If you know me, and things have been going ok for you, just do me a favor and drive extra careful, watch where you are walking, don't skip any doctors appointments, and don't forget to unplug the iron...Just to be safe...;)

To all of you that have been there for us this year, I thank you with all my heart. We couldn't have made it this far without your help, love, support and time. Your visits with Dad, your kind words, calls, cards, rides, hugs, good thoughts, little gifts, flowers, and friendship have meant more than you will ever know to my family.

I hope that for all of us, 2009 is full of love, laughter, peace, hope, prosperity and many, many good times to come. In the immortal words of Charles Dickens via Tiny Tim..."God Bless us...Every one."

Much love and thanks!

Merry Christmas to all!

2008-12-24T19:17:00.000-08:00

Well, sorry for the long time since last post. These few weeks have been a real rollercoaster of emotions for me. First of all, thank you all who came by for Dad's birthday party. I think he was excited to see everyone, although a little overwhelmed...I was actually surprised as to how he was able to recognize most everyone! The man can't remember what he had for dinner the day before, but he knew people's faces. Those of you who couldn't make it, we know you were there with us in spirit...But you missed out on some good cupcakes!:)

The very next day, we got a phone call from Mom's oncologist who was trying to set up another spinal tap for Mom...He gave us the news that he didn't need to do another spinal tap (yay!) because he had spoken to the infectious disease Dr. that treated Mom in the hospital and he said that Mom had the eye problems because she had tested positive for West Nile Virus back in September...Wait...What? So, we had about 4 days of waiting to see the September test results that were being faxed over from the infectious disease guy because it was never noted in her chart (a result was never entered), never told to her primary, and because this is such a new disease, the CDC lists the gender, county and age of all WNV victims, and she wasn't on that list. So, eventually, we received the news yesterday that her test had actually come back negative. I had gotten sort of used to being able to blame her eye problems on something, but now we are right back to not knowing the cause.

In addition to several really annoying little frustrations in life, Mom and I both have the icky cold going around. I am cursed with too much to do and too little time, just like everyone else, and it is sort of weird trying to figure out how exactly to celebrate this wonderful time of year.

Tonight, my Aunt and Cousin moved our traditional Christmas Eve celebration down to Magnolia. We had our traditional "Hamburger Soup," some champagne, and exchanged gifts. It was a different location, but the spirit was there, and Dad got to be present. He has a hard time sitting in a wheelchair for very long, but he was able to enjoy some fudge and spend some time with all of us. It was a very nice evening.

Tomorrow, Mom and Newman and I will be cooking a small prime rib, opening most of our gifts to each other, and then going down to see Dad. We plan on keeping a few gifts so we can all open together, and hopefully he will enjoy a few bites of prime rib.

I hope all is well with you all and this holiday is magical and filled with love, happiness, prosperity and hope. I especially want to say thank you to you all for your love and support this year and during this time of year.

Blessings to all!

Looking pretty good...

2008-12-11T23:33:00.000-08:00

You know, Dad has been doing pretty well the past few nights. My Aunt called after she was there last week to say that he was talkative and ate pretty well. Each day since, he has been the same or better. He seems to be hungry, lucid, awake and most important, happy.

Still remains cold though. I got him and early birthday gift to help remedy this. I did a little research and found a microwavable heating pad that is supposed to be for your back. It is about 12 inches by 15 inches, and has a half-circle cut out so it can go over your shoulders. It is covered with microfiber and stuffed with some sort of beads or beans...You put it in the microwave for 2 minutes, and voila'! The answer to some of my Dad's problems! But instead of putting it on his back, I just laid it on his chest, over his arms and hands. I truly haven't seen him that happy in a long time. My heart just sang.

I am hoping that it will help him stay warm while he is in the wheelchair for his party on Sunday. One of the problems with him being in his wheelchair, is it is hard to keep a blanket around him. I truly cannot imagine anything worse than being too cold or too hot and not being able to do anything about it.

Anyway, hope to see you all at the party/open house for Dad's birthday on Sunday.

Much love to all!

Hopeful...

2008-12-04T11:56:00.000-08:00

Well, according to the PET scan, it appears Mom's lung cancer is isolated and has not spread. Great news! They are doing another MRI of her head and eye to rule out any probability of cancer there. It is rare but possible for cancer cells to break off into the bloodstream and attach somewhere else in the body, and occasionally, this sort of condition with her eye can be evidence of that. It was one of the things they tested for while she was in the hospital, but all of the tests turned out negative. However, if this was the case, but just too small to identify at the time, it would have have a few months to mature, and would show up on a scan now. This is just to double check why her eye is healing not as quickly as hoped. We go back to the oncologist on the 15th of December to find out the results to that and hopefully recommendations on treatment of the lung cancer.

Her lung function test proved that her lungs are in pretty good shape as far as functioning well (surprising considering her years of smoking), but it looks like she may have some issues with oxygen diffusion. She may have some vascular issues, which could be related to the buildup of plaque in her carotid artery. This plaque buildup in her arteries could be all throughout the veins and arteries in her body, and it could hinder the oxygen absorption into her bloodstream. This seems to be minimal in comparison to the cancer, but I just wish she would quit smoking as that would be better for her health all around.

We got Dad's thyroid test back and it is normal. This upset me quite a bit. I just had such high hopes that the issues he was facing could be fixed with a pill. The doctor thinks that the area in his brain that regulates temperature has been effected by the cancer (or treatment), and he is probably so tired as a result of the late onset side effects of the treatments. UGH! So frustrated! I am continuing to research and push them to keep investigating. It is not fair for Dad to have to lead his life asleep in bed under 8 blankets. I am so thankful that he has done as well as he has knowing the type and extent of the disease, and that he is not really in any pain, but what sort of quality of life does he have? Very frustrating...Just got to keep fighting.

On a happier note, Mom and my Aunt and I are planning on hosting a sort of birthday open house for Dad on Sunday, December 14th at his care facility. We are thinking just cake and coffee, and would love for people to stop by for a visit and to wish him a happy 74th birthday in the afternoon, from about 2:00 to 4:00 or so. Please, if you are available, I am sure Dad will be happy for a visit. No gifts please, just smiling faces and well wishes. Stop by for some red velvet cupcakes! Please let me know if you need directions.

Much love!

Thanksgiving blessings...

2008-11-26T21:49:00.000-08:00

Today was quite a long day for both Mom and I. It started at Dr. Levi's office up at 9:00 am. Dr. Levi was glad to see Mom's eye is getting better, but is concerned that it is coming back slower than she had hoped. Once she learned of my Mom's cancer, she wants to keep a close eye on her, and work with the oncologist to keep apprised of Mom's situation. There is a chance that Mom just heals more slowly than average, but in case there is something else going on, she wants to keep her options open.

Mom also had her PET scan today. We won't get the results until Monday when we go see the oncologist. But at least it is over. The PET scan, or Positron Emission Tomography, uses an injected radioactive isotope to identify any cancer cells in the body. So, for the next 24 hours or so, Mom is radioactive...Mom asked the technician what that meant, and asked if she would blow up if she lit a cigarette...I answered a loud and resounding "YES!" The lab tech laughed and told her she indeed, would not. Oh well, A for effort on my part.

We also got the results to Dad's MRI today. The tumors are still there, but are much smaller, and much of the swelling is gone. Dr. Uhl said that this is very good, and on the right track. When I asked about the small tumor on the left, he said it is really very small and he is not really concerned much about it. He said that the radiation is still continuing to do it's job, and the chemo will help to continue to fight the cancer. All in all, he said this is good news. Still waiting for the results to the thyroid test...Guess it will be Monday until I can call again...Or better yet, I plan on finding the Dr. on Monday when Mom and I go see her Dr. at the Cancer Center. One of the main reasons I had Mom choose a different oncologist than Dad is because Dr. Zu's office does not communicate very well, and on more than one occasion does not return any calls to me or to the nursing home. That drives me crazy. I don't think the things I am asking for are unreasonable...But even if they are, some sort of acknowledgement would be appreciated.

So, Mom and I have been invited to my friend Stephanie's family Thanksgiving celebration. It will be nice to celebrate being thankful for our blessings, which include our friends and family especially this year, with those who have been by our sides throughout this year and always. We are going to follow that up with a visit with my Aunt and Uncle and the family, and then down to see Dad. All in all, it is proving to be a downright enjoyable day.

If I haven't adequately expressed my gratitude to all of the phone calls, emails, visits, well wishes, thoughts, prayers, cards, flowers, plants, hugs, smiles, meals, offers of rides, housecleaning, food, and my personal favorite..."Anything," I cannot think of a better day to close my eyes and feel the wave of love and friendship we have been blessed with these last 6 months. I have said in the past, one of the things I pride myself on in life is being a good friend, and surrounding myself with good friends...Good, strong, loyal, caring, thoughtful friends, a trait I learned from my Dad. I am also lucky to have been blessed with family with all of these qualities as well. I have always known how special those close to me are, but I still marvel everyday at the seemingly unending support of all of those special people in our lives. From lifelong friends, family, my co-workers, my Dad's co-workers, our dentists and their amazing staff..I could go on and on...And on. In all that has happened this year, and is still yet to come, I am so thankful for your love and support, and presence in our world. Thank you so much for all you do, for me, for my Mom, and my Dad.

The Reed's are eternally grateful for each and every one of you.

Have a wonderful Thanksgiving holiday, and may your Black Friday hold amazing deals, if you choose to partake...:)

Much love to all!

Little joys...

2008-11-24T23:06:00.000-08:00

So, at work, when someone on my team at work has a birthday, we have a lunch, complete with some sort of dessert. I like to bake, so I sometimes make something, usually cupcakes. So, when August said he would be interested in red velvet cupcakes. I have never had red velvet cupcakes or even cake. It is a rich, sweet cake, stemming from the deep south. It used to be made with beets, but now is made with red food coloring.

Well, I found a recipe online and began the endeavor to make them from scratch. Other than red stains on my hands from the food coloring, in just about 3 hours time, I was able to mix, bake and frost 36 of these red beauties.

They went over well at the birthday lunch, and although they didn't turn out to be my favorite kind of cake, the dense consistency, sweet cream cheese frosting and bright red color were a hit with the group.

The reason I tell you this is because I took the remaining dozen down to Magnolia to give them to the nurses and CNA's that take good care of my Dad. I try to take something to say thank you every week or two. I did hold pull one aside for my Dad.

Well, Dad ate almost half of his cupcake (which is a lot for him these days), and I haven't seen him so pleased with anything in over a month. He kept saying it was "so good it was unbelievable." Then he would say "It is so good, I am not even sure it is real.." And before I left he told me he was proud of me...Now, of course I love it when my Dad says he's proud of me, even if is over a little red cake, but it was more about the way he said it...Not as much about whether or not he is actually proud of me, but to see him be that pleased with anything just made my heart sing. It was truly a good night.

Tomorrow is the MRI that will tell us what is truly going on inside my Dad's skull. Is the radiation and chemo working? Is the tumor the same? Bigger? Smaller? Gone altogether? What are the next steps? More treatments? What is in store. I am hoping for some sort of results on Wednesday. I am also anxious to see the results of the thyroid test. Because regardless of what is going on upstairs, if his thyroid is not working right, and can be helped with simple medication, then it will improve his quality of life significantly.

Wednesday is a big day for Mom. We go see the neuro-opthomologist in the morning and then her PET scan in the afternoon. We then go see the oncologist on Monday, and we will know more about the next steps for her.

Oh, and I also got word today that the HOA has decided to repair my breached sewer line. Of course this includes the jackhammering of my kitchen tile and a foot of concrete, only after I have completely packed up my entire kitchen, and stored it elsewhere...I have to wait for the plumber to call me and schedule all of this, but at least it is in the works.

Keeping the faith, thinking good thoughts, and practicing patience...:)

Love to all!

Digging deep...

2008-11-21T21:31:00.000-08:00

Well, yesterday was the Doppler test for Dad, and the Thanksgiving celebration at Magnolia.

The Doppler ultrasound test went ok, it caused Dad some pain when they used the wand on a few parts of his legs. I am not sure what the official results are, but Mom said that they found his circulation was a little slow in the leg most effected by Polio...Big shocker there.

The dinner was pretty nice. They set up tables throughout Magnolia, and there were quite a few guests who came to spend a nice evening dinner with the residents. The food wasn't too bad, and they had live piano playing in two of the rooms. It was a little hectic, but quite enjoyable. Dad had a bit of a hard time because he originally wanted to sit outside, and then he got too cold, and by that time, all the tables were full. So, Mom, Dad and I sat in his room and squeezed in around his little bed table and ate together. Well, Mom and I ate, and Dad didn't. But it was nice to be together and be grateful for all our blessings.

Today was a bit of an ordeal. I met Dad down at the Cancer Center, and when the transportation person arrived with Dad, he had a silver dollar-sized bruise on his shoulder near his neck, and the skin was torn. I know as Dad gets older, his skin is thinner, but this was awful. It didn't seem to bother him much, but it just looks ghastly. From what I can tell, the guy that transported him either tethered him in wrong or too tight. I had the nurses make sure they cleaned it out and put a bandage on it. It just breaks my heart bedause I feel like if I had more time I could have prevented it....Not sure how, but I must have been able to do something to protect him.

And then at the appointment with Dr. Zu, Dad's temperature was 96.1 degrees! I asked the doctor again (I had asked him last appointment) why he is so cold, and he said "well, I can check his thyroid." When I got back to my computer, I looked up what hypothyroidism can cause...And my heart sank. It can cause low body temperature, lack of appetite, extreme drowsiness and fatigue, and even neurological problems like pins and needles and nerve pain...All of which Dad has been experiencing for the past few months. I am so frustrated...I have been asking the nurses and the doctors for weeks why he is experiencing these symptoms, and all I got was "I don't know." Including Dr. Zu. I am hopeful that it is his thyroid, because that can be treated with a pill and should solve or improve a majority of his problems. I am just heartbroken that he has had to endure being so cold, and not enjoy eating, and so drowsy that he missed out on visits with Jay, Paula, Lynn, Jay, Stacy, Jan, Jerry, Mary, Dennis and more.

It just makes me realize that no one, not even the doctors, are focused on my Dad. They do the protocol, what they are supposed to do...Dad is just a number. I don't know why I thought things were different, but it just reminds me that I have to stay on top of them all and push and fight, and make sure they don't write my Dad off. I am so sick of hearing "oh, that is just how the disease progresses." That may be the case, but that is not an excuse not to do everything possible to make whatever time he has left, a month, 6 months, 6 years or 60 years, worth living. This whole thyroid thing makes me feel like I have let him down somehow because I didn't push more. I know I shouldn't feel that way, but I have to take that in and remember so that I do my best not to let anything like that happen again.

We go for his MRI on Tuesday, and that will tell us a lot. And you can bet, no matter what it says, I will continue to fight for my Dad.

Have a great weekend...Love to all.

Busy couple of days for Dad...

2008-11-19T21:08:00.000-08:00

I am hoping that a couple trips out of Magnolia will help to give Dad a boost. Tomorrow, he is going to Grossmont Hospital for a Doppler Ultrasound on his legs. They have been swollen, and he is always cold, so the house Dr. is worried about his circulation. He has always had some trouble with his circulation in his legs because of the polio, but it seems to have gotten worse. I think it is simply because he rarely gets out of bed...He doesn't move around too much, and I think that has a lot to do with it. Tomorrow evening is Thanksgiving at Magnolia. They have a turkey dinner for the residents and 2 members of their family, so Mom and I are going to be there for turkey with Dad. Then on Friday, Dad goes to see Dr. Zu for a checkup.

Mom went for her lung function test yesterday. They put you in an airtight booth, put a clip on your nose and put this apparatus in your mouth. It measures your lung capacity and how much air you can fill your lungs with, how much you exhale, etc. I guess we will get the results from Dr. Bodkin when we go to see him on the first of December. She still has to do the PET scan sometime in the next week or so.

Also, next week, Dad goes in for his MRI, and Mom goes back to see the neuro-opthomologist as well.

Just keeping it all together...:) Hope you are all doing the same.

Love to all.

Promising day...

2008-11-17T22:38:00.000-08:00

Well, we met with the oncologist for Mom today. We don't know much more than we did yesterday, but the news is promising. The tumor is 2.2 centimeters, about as big around as a nickel. Mom will do a PET scan sometime in the next 2 weeks, and if you remember from my Dad, the PET scan is kind of like an MRI, but they inject a different kind of contrast that clings to cancer cells and shows up by glowing. Dr. Bodkin wants to be sure that this tumor is isolated and has not spread. I guess there are some spots on her liver that are suspect, but Dr. Bodkin thinks that they are just cysts, and the PET scan will (hopefully) show that these are indeed, just cysts. The Dr. that did the biopsy, didn't think that the lymph nodes in the chest were involved, but once again, we are hoping that the PET scan will confirm this.

Once we determine the extent of the cancer, there are a multitude of different treatments. If all goes well, and it is isolated, (which is best case scenario and what we are hoping for), then there is a possibility of surgery to remove it, a couple less invasive treatments using a hot probe or a cold probe to destroy the tumor, and a radiation treatment that targets the tumor specifically.

In addition to the PET scan, the Dr. wants to do a lung function test to see if Mom is even a candidate for surgical removal if that is an option.

These tests are to be completed in the next 10-14 days and we go back on December 1st to discuss next steps.

Mom is pleased with the news, and I (being a little paranoid as of late) am remaining cautiously optimistic for now.

Dad continues to be very very tired. He is awake, and knows we are there, but doesn't really open his eyes. He listens to everything and if I ask him a question, he will answer. But most of the time, he just lays there with his eyes closed. We see the oncologist on Friday, and then he gets the long awaited MRI next week. Hopefully, good or bad, it will help explain some of his symptoms.

It has been a long day...It included buying my Mom a new artificial Christmas tree, which when I got it home and put it up, the lights didn't work...And my "Check Engine" light came on...But all in all, as frustrating as the little things are, I am still holding hope that today's news about Mom is as good as it seems.

Love to all!

It should get easier....

2008-11-13T21:52:00.000-08:00

So, I have had enough practice lately, but receiving and repeating it just doesn't get easier.

So, we got confirmation on something this week that we were hoping would go a different way. My Mom has lung cancer.

We don't really know much at this point, but we go to the oncologist next week, who can tell us more. What we do know, is that it is one of the non-small types of lung cancer, and the mass they are looking at is about the size of a shooter marble. Other than that, we have to wait to talk to the oncologist.

Needless to say, we are overwhelmed, scared, anxious...Everything you would imagine.

We are not telling Dad, as he does not need anything to worry him. Dad seems to be doing ok. Very sleepy, as usual, but seems to be in good spirits.

I will keep everyone posted on everything as we learn more...

Love to all.

Just a peek...

2008-11-10T22:19:00.000-08:00

Well, there is a little bright spot on the horizon...Well, brighter for some...One in particular. Mom's left eyelid is starting to open a little. I noticed it today, but she said she really started to notice it yesterday. The eyeball is slowly coming back as well, but it is still primarily shifted to the left, so when her eyelid does open ever so slightly, she is still seeing double. So, she may need to go back to the eyepatch if it bothers her too much. Although it is driving her crazy, I think I have her understanding that this is really good news.

I did see Dad for a few minutes tonight. Again, very sleepy. But, the CNA said he was up in his wheelchair this afternoon, and he is still on his chemo doses. So he probably needs the sleep so his body can recover.

Well, we seem to be on an upswing this week...I am just hoping it continues!:)

Much love!

Keepin' on keepin' on...

2008-11-09T21:41:00.000-08:00

So, Dad was good this past week and this weekend. He is very tired...Sleepy is a better description. I think it is probably the chemotherapy. His appetite is also dwindling. He just doesn't want to eat...I am hoping it is the chemo as well.

Dad goes for his MRI on November 25th. This will tell us how the treatments are working. I am looking foreward to seeing how things are looking.

Other than that, things are going ok...And back to work tomorrow!

Hope all is well with everyone...:)

Much love!

Hope you exercised your right to vote today!

2008-11-04T22:49:00.000-08:00

I hope everyone got their votes in for what they believe in...But I have to say...I AM SO GLAD IT IS OVER! The people have spoken...So now let's get rid of the signs and ads and all of those folks who think others are eager to listen to their unrequested opinion...I love this country, I love the freedom of speech, but somehow, what politics turns some people into is just exhausting. There...You got my unrequested opinion!:)

Mom and I went down to see Dad this evening. I had baked some cupcakes for a couple birthdays at work , so I made some extra to take to the staff at Magnolia. They really appreciated it.

Dad was actually pretty good tonight. He was still confused, but he seemed so much clearer, and alert. The past few nights, he has seemed so tired...Even keeping his eyes closed while eating. But tonight, he just seemed so much more with it. Laughing, cracking jokes, and just...Well, present. It was a nice change. As you can imagine, all of this takes a toll on us, and just a glimmer of a good day for Dad makes it easier.

Much love!