You know how when someone gets a new car, and you look at it and think, "I am not sure if I have ever seen one of these before..." But then from that moment on, every other car on the road is that very same car? I kind of feel that way with cancer. Yes, I know it is out there, I have stood by my friend Johanna in her battle (well, one of them), my Auntie GeeGee, my Uncle Bill, I have seen glimpses of the devastation. However, it just seems like now, it is all around. My friend Kristin lost her Mom in 1999 to a glioblastoma. It all happened so quickly, and it was just shocking. Kristin was one of the first people I called when I found out. She has been nothing but supportive and reassuring as we go down our road with this nasty tumor. She emailed me tonight to tell me that she is going to come down from Vegas on September 13th to walk with us. She is creating a team in honor of her Mom...Bama's Blessing...The name she was given by her first grandchild, Wyatt, when he tried to say Grandma, it came out like "Bama." With our teams walking together, we will be a force to be reckoned with.:)

She also told me that her college roomate's uncle was diagnosed with a brain tumor in March. But even more unimaginable than that, this poor girl, she lost her father to lung cancer in March, and just lost her Mom two weeks ago to pancreatic cancer. And she is in her early 30's. So, keep her in your thoughts tonight.

So, more thanks for donations! Thank you to the Guerin's and special shout out thanks to Scott...What an unexpected and pleasant surprise! I can't believe how thoughtful and generous everyone is...But acting on that generosity is just amazing.

Tonight was a good night. Dad was in good spirits today already, and then we decided to surprise Dad with Phil's Bar B Q for dinner. We had some ribs, chicken, pork, macaroni salad and baked beans. Dad kept closing his eyes, "mmmmmmmmm"-ing and saying "this is sooooooo good!" He really enjoyed it. It was the first time that we ate as a family in a few weeks. We usually sit with Dad when he eats, but we don't eat until we get home...Which is probably why my Mom is so thin I am afraid she might blow away. I think we are going to eat together once a week...Now if I can just load Dorothy's food up with lard, she may actually fit into her size 2 pants again...I keep telling her she needs to eat more, and so does everyone else...I guess she does her best, but it just does not seem to be good enough. She is just so tiny. She was telling me that she likes to "go out for a pancake...(That is right...A PANCAKE) or an egg and piece of toast for breakfast..." I told her she should have and egg, a piece of toast...And an ice cream sundae...

I cracked my folks up tonight...At work today, I was looking at my parents accounts to see what checks have cleared, and I usually do that from my Dad's computer. Logging on to the bank from your home computer requires a login and a password...But when you login from a satellite computer, it asks you another random question that you have set up...So, up comes the question..."What is your paternal grandfather's first name..." Now, keep in mind, I am supposed to be logging in as my Dad...And his paternal grandfather died not too long after my parents brought me home...Ummmmmm....So I type in "Edward," but somehow that is not right, because my Dad is a junior, not a third...And suddenly it hits me, I think I know...So I type in "Edwin," and hit "submit..." And it works! So, I tell them this story, but I finish it up with "how the heck I pulled Edwin out of my butt, I will never know..." Well, this got both my folks laughing up a storm!

I did talk to my "friend" Debbie the case manager this morning. I called and told her that I heard she came to see my Dad yesterday, and I am so sorry she missed him, and to thank her so much for pushing for the PT...She was a little taken aback I think...That is fine with me.

We did find out today that starting Monday, they are moving Dad's radiation time to 10:00 a.m. So they will probably pick him up right after breakfast, around 9:00, and he should be back each day by Noon to eat his lunch. It may make his days a little longer, but it will probably be better for visits.

Much love to all!

Another good day...

I am almost afraid to speak (blog) out loud about it, because I don't want to get too boastful that things are going well...However, today was another upbeat day.

First of all, I and my family are so blessed to have family and friends who are supportive and there for us always, but now especially in our time of need. Each and every visit is so welcome and important to Dad's well being, and each and every good thought, email, hug makes us all stronger and helps us to face another day.

But, I am so grateful for the donations to Team Scotch on the Rocks. In addition to the Mosley's generosity, I need to give a shout out to the Altomare's, the Bucci's, the Briggs' and the Ferguson's...THANK YOU ALL! Thank you for donating to this cause now so close to all our hearts. My Dad cries with joy and pride every time I give him an update...And that is worth every penny to me.

I went to see Dad this afternoon, and I know Margie came by (glad you made it Margie...Sorry you got lost). When I got there, Mom and Dad were on the patio having a smoke. As we got to talking, my Dad started telling me about "Joe" the administrator coming to talk to them today. My Mom told me the whole story, which started with my new "friend" Debbie from Sharp Health Care stopping by today. Unfortunately, Dad had just left for radiation, so she just missed him, but she did have a meeting with Joe (the administrator) regarding getting my Dad started on Physical Therapy. Hallelujah. So, Joe told my folks that he is working on getting things set up, and then my Dad was saying that there would be some sort of evaluation...I am hoping this is good news, because I want to let the evaluator to know what my Dad's limitations are and what he can do, and what he is capable of doing if he can rebuild strength. I will be putting a call into Debbie first thing in the morning to thank her profusely for her quick action and see if I can impart more "Ed Reed wonderfulness" to her, while finding out what, who and when this evaluation takes place. I would like to happen to be visiting at that time...

Also, we finally got the bill for Dad's hospital stay and surgery. Now, as much as I was on my high horse yesterday about Secure Horizons, I am happy to say that our co pay is just shy of $900....Not too bad when the bill totaled...Are you ready???? Wait for it.....$146,047.95. It is not itemized, but just the amount is staggering. Not really surprising, meds, SICU for 5 days, operating room, several MRI's and CT scans...But my goodness. Thank you Secure Horizons...Oh thank you so much.

Tomorrow is another day to keep fighting the fight, and try and face anything coming our way, but I am sure taking a moment tonight to be thankful for today and the blessings it brought...Which I do every night, but today leaves me with a smile on my face.

Love to all!

I am feeling accomplished...Victorious, really

Today ended up being a pretty good day. After hours on the phone, back and forth with Secure Horizons, Magnolia Care Center and Sharp Healthcare, I got his transportation to radiation covered! It is just amazing how you have to work with these companies. I know these people have a job to do, and we are not their only patient, but my goodness, if you don't watch every move, they will do what they please.

It turns out that the case worker with Sharp is the one behind the denial. I do believe this is also the case worker who deemed my Dad "at his maximum potential, therefore no longer at rehab status." Well, when I finally got her on the phone, she was rude and her tone left a lot to be desired. I am still mad at the "long term care" designation, but the real issue now is the transportation. So, I started off with that. I explained who I was, and why I was calling, and that we needed ambulance transportation because my Dad couldn't walk. She came right back at me and said that she was familiar with my Dad because she had been dealing with him back at Arbor Hills. Then she says (and this is the kicker) "he can walk." Oh yah, it was on now...This just set me off. We went back and forth, and she said that because he was in custodial care, the transportation was not covered. Well, I lit into her saying that my Dad cannot walk and he needs an ambulance, and that whoever made the designation to send him to custodial care has severely impeded him, because he is not receiving any physical therapy, which is in turn making him weaker, which means he will continue to need ambulance transportation...I said that this has created a big vicious circle that started when someone made the decision that he had reached his "maximum potential." She came back and said that it is not covered, and I told her that Secure Horizons told me it was. She said she would have to research it with Secure Horizons, because they probably were wrong, and that she would call me back.

Well, I wish I could put a recording on this blog, because I would let you listen to the voicemail she left me...Here is the gist (her voice professional, but suddenly much sweeter and pleasant)..."Hello Aimee, this is Debbie, I reviewed the transportation with the medical director and it has been approved, so I will talk to Magnolia to see how many sessions he has left and make sure they are scheduled. If you have anymore questions for me, please call me. Sorry for the error. Goodbye." I ran around my office and played the message for like 4 different people! Not only did I win, I got an apology too!

I immediately called her back, and thanked her profusely for being "soooooo helpful" and we are so appreciative that she took the time to straighten this out for us...I mean she should have, since I am pretty sure she jacked it up in the first place. But, because she did screw up, and tried to eat crow while it was still warm, I thought this was the perfect time to strike up a friendship..Well, a cordial relationship anyway...The more she knows about my Dad and the more she knows about the situation at large, hopefully we can get her to be on (or more on) our side. Then a funny thing happened...She said "And you know, I am concerned that you said he is not getting physical therapy, so I called and talked to Magnolia, and they said he wasn't getting it, and he should be getting something, so I am going to call and make sure that some sort of program gets set up as soon as possible..." I almost fell out of my chair...So, I thanked her profusely once again (it is kind of like training a dog...Positive reinforcement), and told her that if she ever had any questions or needed any information to please call me...And she said "the same goes for you..." I had to pinch myself...Now, I am not naive...I will believe it when I see it, but hopefully, Dad should get some form of activity soon.

The other pretty good thing that happened today, was when we went to radiation. I came down today for the first time to see a treatment. Wow...It was really something else. So, the "mask" I was referring to looks like a paper mache' bust of my Dad's face, neck and shoulders...Well, the front of my Dad anyway. But it is made out of mesh...Kind of like white fishnet stockings. It has plastic pegs along the bottom edge, that lock into grommets on the table. The table is in a huge room, with a huge, sort of round machine, that is kind of like a doughnut. The table that he lays on then slides into the doughnut, where they line up the radiation according to where the tumor was (and is).

While Dad was getting his treatment, Mom and I talked to Dr. Uhl, the radiation oncologist. Dr. Uhl was saying that if he had not been experiencing side effects by now, he probably wouldn't have any. What a blessing! He was also telling us that this type of tumor is very hard to get rid of, and even after treatment will tend to come back in an average of 10 months. Well, my Mom doesn't really understand what average is (other than "mediocre"), so he said that 50% of the people will have it come back in up to 10 months, and the other 50% will have it come back in 10 months or later. And he said that when it does, we can determine what treatment will work at that time. We just have to be dogged in follow up scans and if we notice any subtle symptoms, because it is best to catch it as early as possible.

So, although the prognosis for this type of tumor is not good (I have known that since the beginning), Dr. Uhl seems to be determined to keep fighting it. All in all, I think it was a good report.

I only saw Dad for a brief moment after his treatment. When he realized I was there he said "be careful...I may be emitting!" I said "what do you think? Are you expecting to glow?" He just laughed.

Oh, my last bit of information tonight is sort of a caveat to everyone. My Dad always paid for the Secure Horizons/AARP medical coverage because he thought it was better coverage. It covered medications and co-pays, and was pretty good to them, until all of this happened. I spoke to a close family friend yesterday, who works in the medical field, and he told me that in the industry, they call it "Insecure Horizons." When we were talking to Dr. Uhl today, he said the exact same thing, and he said that in the state of California, Medicare with the supplemental Part B is the best way to go. I am not telling everyone to run out and change anything, but be sure you know what you have, and what is covered and use our situation as one of the measures to evaluate what you have to make sure you have what is best for you. I get a different story every time I call Secure Horizons, but one of the operators told me that Medicare would cover custodial care...Which Secure Horizons does not.

I have plans to call Magnolia tomorrow to follow up on the activity for Dad, and if it has not been requested, I just may call my new "friend" Debbie...;)

Much love to all!

"...because my mind went out for a taco..."

Trying to work with the insurance companies. Still trying to figure out what is covered and what is not. At the end of the day today, I think I am of the understanding that the stay in the nursing home has no coverage through Secure Horizons. When we got denied for the "rehab" status, that ended any coverage, as there is apparently no "long term care" coverage with Secure Horizons.

The other confusing thing is the transportation to and from radiation. I have to do some more calling around tomorrow to try and determine whether or not this is covered..I think it should be, and so does (one of the operators at ) Secure Horizons, the radiation oncologist...However, someone at the nursing home told my Mom it is not covered...Everything gets so confusing, and boy do the insurance companies give you the run around...Sheesh...It is exhausting.

Dad was frustrated tonight because he didn't get any sort of PT today. We are hoping something starts tomorrow or Wednesday. However, Dad got really emotional after I got off the phone with Secure Horizons (I was told by one operator that I needed him to be there and then when I called with him there, I was told that in fact, I did not). He looked at me and started crying and said "I could not be more proud of how you have handled all of this. You are learning so much, and I am so sorry I can't help you more, but I can't (he motions toward his head)...because my mind went out for a taco..." I started laughing and said "is that where it went? Tell it to come back!!!"

Then, I ran to Home Depot (thanks for the tip, Jack!) and picked up 6 pair of earplugs with a cord attaching them (well, each pair) together. Now, hopefully, they will be harder to lose...Actually, it just means when he loses one, he loses both! But, I thought he would be more excited about them, but I don't think he really got the concept...Hopefully, he will see the benefit.

The other new thing my Dad loves, is the "Sleep" feature on his TV. He really didn't watch TV in Arbor, but I think the TV was too high and too small for him to really see anything worthwhile...And of course, DirectTV did not get channel 4 for the Padres. This place has Cox, and the TV is 19" and he can see it pretty well. But, he gets a little concerned with remembering to turn it off. So, now, when I leave at night, I turn on the "Sleep" function for a few hours, and he doesn't have to worry about the TV, and he can just doze off and the TV turns off all by itself. The little things in life are so important....It is good to remember that once in a while.

Much love!

"Ok...Now where is my roll?"

I got to Dad later today because I had to try and spend some time organizing my house...I have just been letting things stack up with everything that is going on...I still have a long way to go, but I did make a dent. I also had to say goodbye to my friend Erika...She is heading back to Florida tomorrow. I am so happy things are going well for her there, and it was great to see her.

So, I got down to Magnolia, said "hi" to Clyde, and went down to Dad's room (which is 37), and Mom and Dad were watching baseball. My Aunt and Uncle had been down there most of the day, and he was tired, but in a good mood. I can tell when my Mom has been there either a little too long, or just been a little too pushy...My Dad tends to get a little frustrated with her, which can be pretty funny. My Mom stepped out to smoke, and my Dad looked at me and said "She really is a character isn't she?" So, I say "she sure is." He paused for a moment, and said "yep, she is a wonderful person, but she really is a nut case..." I laughed out loud...I could tell she had been a little smothering today...:) She is just so precise about how everything needs to be done...I have always said it must be hard to be perfect...And Dorth may be the only one who knows for sure.:)

Well, dinner comes, and it is this broccoli/cheddar cheese/turkey thing (which looked pretty good), mashed potatoes, mixed veggies, a biscuit, watermelon, a slice of pineapple, and lime jello. Well, Dad has been gaining some weight, which is common with some of his medication (which usually is a good thing with chemo and radiation), and he is concerned. He says that he doesn't want to over eat, and in the next breath is asking for candy or chips. Mom started to feed him his dinner, and he said he absolutely did not want the mashed potatoes or the biscuit, and he doesn't like mushy veggies...So, Mom convinced him that he liked the broccoli casserole, and the fruit, and he loved the jello. Well, since he was so adamant about not wanting the potatoes or biscuit, I decided to sample them. I had about half of the potatoes, and I ate half of the biscuit, in case he changed his mind. Mom finished feeding him the lime jello, and he sighed and proclaimed "he was stuffed!" So, I ate the other half of the biscuit (it was really good). I had just put the last bite in my mouth, and he says "now, didn't I have a roll somewhere over here?" I almost choked on it. Oh well, sorry Dad...Leave it to me to steal food from a man in a nursing home.

Team Scotch on the Rocks is off to a good start thanks to some generous donations from my friends the Mosleys. (You guys did not have to be so generous, but I thank you from the bottom of my heart that you were...I love you!). Once again, if anyone is interested in signing up to walk, it is $25 to register, and they hope each person strives to raise $250 in donations (I am practically there!), and it is a 5K (3.1 miles) and it is at Hospitality Point in Mission Bay on September 13th, and it is over by Noon. Here is the link again about the walk http://www.braintumor.org/AngelAdventure/san_diego/

And, my donations page is http://www.firstgiving.com/scotchontherocks where you can donate online...Every little bit counts!

Dad is pretty well settled, and would love to see some folks when you have time. If you need directions, just let me know. Also, just keep in mind that he goes to radiation every weekday afternoon from about 2:15 to 4:00.

Hope everyone has a great week and love to all!

"Why'd you turn down the sound?"

I went to see Dad this morning. He and I chatted for about an hour and he was in pretty good spirits. He was wanting to talk about things that stimulate his mind, so we talked about retirement accounts and what the latest buzz is about my company being sold to Inbev. When we started talking about some of the money figures "2 billion dollars...50 billion dollars..." He would just look at me and ask "do you know how much money that is???" It was a fun conversation. Dad likes to talk about things that he feels stimulate his mind.

He was in a good mood, but was a little restless when it came to what he was supposed to do today. Being new to Magnolia, we are still trying to get everything lined up as far as his workouts, and bath schedule and all that jazz, and we need to wait until Monday to do some of the follow up things. Everyone is so nice there so far, and I hope it continues. Knowing they are kind and taking good care of him really takes a weight off of our minds.

So, I guess tonight's funny happened this evening with my Mom. Ever since the jackhammering at Arbor Hills, my Dad has been passionate about earplugs...The are like his "blankie..." Except "blankies" are pretty large...Earplugs? Not so much...So, he pretty much loses them as soon as he gets them. I am going to look for the kind that are attached by a small cord that I have seen before, and maybe those won't be so hard to misplace...Anyway, the pair he had last night disappeared, and he started to pitch a fit about needing some. Here they are to block out the noise of the halls and the other guests. So, he started complaining to my Mom about all the "chatter," and "background noise," and "can she believe how loud it is..." Mom looked at him and said "Uh Scotch, you are the only one in the room...The only one chattering is you." He said "Me? I am making all that noise?" She said "yes," and he just rolled his eyes. Then, demanded ear plugs once again. Well, luckily, my Mom had some in her purse left from Arbor Hills, and she took them out. He said "put them in....Now!" My Mom said, "you won't be able to hear me or the Padre game on TV..." He said "I don't care! Put them in NOW!" So, as you can imagine how hard it is to put earplugs in someone else's ears, my Mom wasn't sure if she got them in right. About a minute later, my Dad said "Why'd you turn down the sound on the TV?" And Mom said "I didn't, you have the earplugs in..." And he would say "well, take 'em out!" So, she would, and then he would want them back in...I guess this went on back and forth for about 10 minutes, and finally, Mom called him on it and they just started laughing...Oh the conversations we have now...:) How something so simple can be so trying...You just have to laugh.

Hope everyone's weekend is great!

Love to all!

Aimee

Could the grass be greener?

Sorry for the hiccup the yesterday, and the short post on Wednesday. This week has been exhausting for me, both physically and emotionally. Really high highs,and really low lows for me personally...So, Dad is doing fine, I just hit the emotional wall...So, sorry for the gap.

I finally was able to go down and see Dad in his new place tonight. Like I said, it is called Magnolia Special Care Center, and it is down in El Cajon. It has been around for 40 years, and is larger than Arbor Hills. It is a little dated as far as decor, but they are in the process of renovating the entire facility. My Mom pointed out a renovated room, and they have nice light colored accents, dark hardwood floors, and little flat panel TVs. She also showed me the renovated shower room, which is really nice.

My favorite part is that there is a dog that lives there. His name is Clyde, and he looks to be some sort of beagle or hound dog mix. I have attached a pic of Dorth and Clyde.

Anyway, my Dad is currently in a 3 bed room, but as the remodeling continues, he will eventually be in a 2 bed room, but the rooms are much larger than Arbor Hills.

I really liked the nurses and CNA's at Arbor Hills, but the management always gave us a hard time, up to (and especially) in the end. But they always took good care of my Dad, kept him clean and were pretty patient with him, and they were kind to my Mom and I. This was one of the reasons I tried to fight to keep him there...That and it was quite convenient.

Needless to say, I was unhappy to have to move him, and was glad that my Aunt was able to do the research, and my Mom and Aunt were able to check it out. When they were down there, the management were very kind and compassionate with my Mom and really made her feel at home, special and comforted. They spent a great deal of time with her, listening to her, answering all of her questions, and talking about Dad. The only thing I am more happy about is the nursing staff. I had just got done helping my Dad with his dinner, and one of the administrators needed me to sign some papers acknowledging the side effects of some of my Dad's meds, and I told her I didn't know the staff yet, but I knew my Dad would want to get in bed soon. She turned to him and asked him if he was ready for bed. He (of course) said "on your schedule." And she said, "no, it will be on your schedule Mr. Reed." Wow. And this is only the second night.

Dad is doing well, and seems to be taking to his new surroundings well. My Mom asked how he slept last night, and they told her that he slept the whole night through. I think the radiation and chemo are starting to make him tired, but really only at night.

So, I am hopeful that this all continues and Dad is content. I do think a few days for him to get settled will do him good. If you are interested in a visit, and need directions, just send me an email.

Also, my parents and I were talking tonight about the Brain Cancer Walk in September, and my Dad is donating $100 for my Mom to walk too...I think she is going to have to walk along with us! She'll love it! And we hope to have a big team, so please consider joining us on September 13th.

So the funny for the night, was when my Dad was finished with dinner, and my Mom and I were talking to him. I said that I had told the nurse that he wanted to get in bed, and so my Mom turned to my Dad and said "so, you want to be laid out Scotch?" His eyes got round as saucers, and said "as opposed to laid up?" So, I said "I would think you would rather just get laid..." Both my parents paused and looked at me incredulously and then we all just started laughing.

Have a great weekend!

Love to all!

Moving on...

So, I guess we are being officially thrown out of Arbor Hills. Dad will be moved tomorrow to Magnolia Care Center in El Cajon. My Mom and Aunt went to take a look at it today, and he will be transported there after radiation tomorrow.

I will forward the address and bed # once he gets settled.

I didn't get to see Dad today, and Mom said he was kind of cranky tonight. But I guess radiation went ok today. He got moved to room 1B today.

So, tomorrow will be busy, making sure we get all his stuff, and getting him settled in this new place. I hope it is not like his first night at Arbor Hills...But, he has come a long way since then, but who knows how a new and strange place, with strange people will effect him. Hopefully, not much.

Much love.

"You know...Driftwood..."

So, I got to go by and see Dad for about an hour tonight. My best friend is visiting home from Florida, so she stopped by to see Dad with me. He seemed to be doing well tonight...Kinda jolly. He was so happy to see her, and ask her all about her life in Florida.

In talking about Florida, and hurricanes, he somehow got on this tangent, and he started telling the story of when he went to Washington D.C. to receive an award on behalf of Rohr Industries...We laughed...We cried...We got confused...Good times...

Well, he did go to Washington D.C. to receive this award, and my Mom accompanied him. The awards presentation was in the White House, and he told us that the award was presented by the HUD, and was given to him by Jack Kemp, former quarterback of the San Diego Chargers. Now, while they were there, they got attend an event in the White House. He said the event was tightly packed into a room, and that there must have been 800 people stuffed into this room. he said he was not afraid of falling, because they were so tightly packed, he just would have leaned onto the people around him. He said the room was full of the creme de la creme of D.C. society, including South Carolina Senator Strom Thurmand. He said that even though Strom (at this point, Dad kept getting ahead of himself and kept calling him "Throm, and then he would correct himself because he knew it didn't sound right), was advanced in age, he was pounding the drinks and eating the steak and lobster and crab as quickly as he could get it to his mouth. Then my Dad goes on to say that he walked up to "Throm, I mean Strom" and said "I hear your state has lots of driftwood." And he looked around at us, thrilled with his story, gleeful that he made this funny joke to a Senator. My friend and I looked at each other like we must have missed something...At this point, my Dad looks at us incredulously, and says "Driftwood...I asked him about driftwood." Still confused, looked at my Dad, still smiling with pride, and I said "because South Carolina got flooded and left driftwood...?" And he said "YES! The state got hit by a storm and it left driftwood all over the state and it became so popular, people came from everywhere to get driftwood..." And then he was quiet...So, I said "you told that whole story to get to the part about the driftwood?" And he said "yes...I guess that was a long way to get there..." And we all laughed.

Well, Dorth was also there...And she was her normal fussy, nervous, self...Going on and on about how Dad's dinner was running late, and how she didn't eat lunch today (which was my fault, I guess)...And when I moved so she could sit in one of the chairs, I sat at the foot of my Dad's bed. This put my back to my Mom, who apparently noticed that I had lint/dog hair on the back of my shirt...She says "Oh I know...I have Scotch tape in my purse!" She carries said tape because she writes herself a lot of notes, so she won't forget...And then she has to find a place to put them, where she won't forget she wrote herself a note...Well, when she is not at home, she either tapes them to her purse, or steering wheel...Hence the tape.

Well, she decides that the correct course of action would be to use the Scotch tape (standard, 3/4" wide, clear) to remove the lint from my shirt. She proceeds to pull a piece about 3 inches long, hold it between her hands, and start pressing and lifting it off my shirt. My friend and my Dad are in hysterics...She then decides that one piece didn't quite cut it (no kidding), so she walks over to the trash can and throws away the first piece, and gets another, and starts in again. About this time, my friend says "you have to put this in your blog tonight..." Well, Mom starts to get a little worried about what she means (because she doesn't know how to "do the computer," and she has only read a few posts), and she goes to throw away the second piece of tape, which (wait for it), is stuck to her fingers. She may have well been a cat trying to shake tape off it's paws. She shakes a couple times, and I have her come back over to me, so I can unstick it, and I hand it back to her, sticky side folded in on itself, and somehow, when she gets to the trashcan, it is stuck again...You can't buy this kind of entertainment...

Anyway, when we left, Dad was in good spirits, and his dinner had just been served. Mashed potatoes, broccoli and turkey with gravy...Yum!

Love to all!

Yep...It is the taste buds...

So, today is the first day in a few weeks that I didn't get to see my Dad. Work and then dinner with friends up in Solana Beach (at Fidel's...it was amazing! How have I never heard of it before?). By the time we were done, it was too late to see him. But, I knew that ahead of time, and told him...Whether he remembers or not is a whole other thing.

I did talk to my Mom tonight, who, like I asked her last night, brought Dad some coffee from home. After he got through telling me how wretched Starbucks decaf was yesterday, he said that he couldn't wait to go home to have a cup of coffee from there, because that is what he missed. So, I told Mom to bring some to him. All he could do was tell her it was "awful." My poor Mom takes everything so personally, she was just heartbroken that he didn't like the coffee...That is until he got a little upset with her at the end of the night, when she said she was going to stick around until he finished his piece of candy (she is worried he might choke, which I am not sure is a good idea or completely ridiculous...), and boy he got mad and told her to "go home." She said, she would be going soon, and he said "get out of my room." She was a little less effected by the nasty coffee comment...I think it was because she is realizing that these spells are not really him...At least I hope that is the reason. Either way, it is still hard when my Dad gets like that...Although it has been much better for the past 3 or 4 weeks, since the brain swelling from the surgery went down.

I still think it is a side effect from the medication. And with all of the new medication and treatments, who knows what all is going on inside his head and body.

One of my good friends from work bought me a book that I am very anxious to read...It is all about brain tumors from diagnosis to treatment to survival. I have thumbed through it a little, and it kind of looks like a "Brain Tumors for Dummies" kind of book. It talks all about the types of tumors, medications (and their side effects), treatment options and almost everything you may ever want to know. Seems like a nice light read, right?

He went back to radiation today, and for all intents and purposes, did well.

I hope to see him for a few minutes tomorrow between work and dinner with friends. Dinner will be in La Mesa, so close by works better for me. Hope he doesn't throw me out...;)

Much love.

"This coffee is wretched..."

Today begins the start of a crazy week ahead. I have work, dinner out almost every night, I take Tucker to the vet on Wednesday for a consultation, and I have to go and see my Dad at some point too. Today, I was helping out my friend by volunteering to help at the event she was working. So, knowing I would be out too late to see Dad this evening, I went to see him this morning. I decided to take him a cup of decaf from Starbucks, because he always says how weak the coffee is at Arbor Hills.

So, I let him have a sip...He made the most awful face...Screwed it up with his eyes closed until he swallowed and then opened his eyes and said "you know this isn't very good." So I said, "you're welcome Dad" and laughed. He smiled and said "I guess someone must think it is good..." Then, as he took another big sip "yah, it just tastes wretched." So, I said "well, stop drinking it then." He looked at me with another mouthful and swallowed and started laughing. Then I told him that maybe the medication might be effecting his sense of taste...He thought that might be a possibility.

Then he went on to tell me that he has been so confused. He starts obsessing about the Dr.'s, and the transports to radiation, and when are things scheduled to happen, and what if something gets messed up. I am not sure why he is getting so confused. I mean, I understand, after all, he has been through a great deal, but I have to admit, it seems that since the radiation and chemo have started, he seems to be a little more confused. I am hoping that he is just getting used to being transported over to the hospital for radiation every day (this next week may help, he will be going all 5 days, instead of 2 days on and then 2 days off). But, I guess it could be any number of things, including medication side effects. We will just have to wait and see how things go.

So, in addition to everything I have going, this week will hold lots of calls to insurance companies, and the ongoing search for a long term care bed, hopefully somewhere close. As much as this latest bout with Arbor Hills has been frustrating, and the jackhammering, and poor Terry being so loud, it is really a pretty good place. The staff is pleasant, if not wonderful, and they do take good care of my Dad. I think we are probably not like most people who are in there. There are only a few residents who have family or visitors come every single day. I kind of feel like some of them are even surprised to see us day after day. But I also think they have a respect for us and how much we try and do for my Dad. Although, a few of them have warned my Mom that she needs to start doing less for my Dad (after all, that is what we pay them for) and more for herself, or she just might end up in there as well.

When we do go somewhere else, I hope their staff is as nice and the quality of care is just as good...Who knows, maybe it will be even better...We can only hope.:)

Team Scotch on the Rocks is growing! My Mom is even thinking of walking...But she doesn't want to make a decision just yet...;)

Have a wonderful week!

Much love.

So, I got the call that our appeal to have Dad continue to stay in the rehab status was denied. I am not really surprised I guess. So, now we are hoping a long term bed opens up someplace close. If something doesn't open up early this week, there is an opportunity a little farther away, in Spring Valley, so we may look into that as another option.

I saw Dad this morning for about an hour. It was right after breakfast, and he was in pretty good spirits. He said he slept pretty good, but was a little upset because he felt like he wasn't doing much toward improvement. I am pretty sure they have stopped the PT since the notification from Secure Horizons. I know that the goal is to get someone to their full potential, but with my Dad, it is not like he will stay at his "full potential" unless he continues to receive PT...Especially with the chemo and radiation treatments. So, I think our next step is to talk to the Dr.'s and have them prescribe PT.

But he did have a few visitors today that brightened his day. Fred, Mike and Bonnie all were there at the same time, which may have been a little overwhelming, but welcome. He got his Costco pizza for dinner thanks to my Mom...There was apparently some miscommunication on when it was going to arrive, and Dad got really mad when Mom showed up in the afternoon without the pizza...So, she ran out to get it for him. I told her in a situation like that, she needed to be a little tougher with him, and tell him he should be happy to see her and she will get the pizza when the time is right...But he has so much trouble with time, it doesn't always work. Well, and I set him straight if he is not nice to me...She doesn't always stand up for herself for fear she will upset him...There is probably a happy medium between us that is really the right response.

So, after just 2 days, Team Scotch on the Rocks is 3 people strong (thank you Kathy and Allison)! I think it will be a really fun event and would love to have as big a team as possible...Come on...3.1 miles is nothing for a great cause!:) I can be pretty persuasive...

Anyway, a lot going on in the week ahead. Finding a place for Dad, talking with insurance companies, Dad's radiation, work, fun evenings with friends...Doesn't seem like enough hours in the day sometimes. But somehow we manage to get through it.

Happy weekend to everyone!

Much love.

Insurance company blues...

Well, the appeal is still going on with Secure Horizons. I got to give my statement today, but I was under the impression (from the girl in the office at Arbor Hills) that he was not progressing enough, so that Secure Horizons would no longer cover him in that type of capacity. So, when I gave my statement today, that is where I was coming from. Luckily, I said that I was concerned that with his treatment starting he would get weaker, so it is more important that he continues with his PT.

Shortly after I got off the phone, I talked to my Aunt and she got a copy of the report that was declined, and come to find out that he is not being declined because he is not progressing, but that they feel that he has progressed to his maximum capacity...So which is it? I can understand if they don't feel he is going to get up and run a marathon, and even if he is at his maximum potential, we need to continue the PT so that he doesn't lose anything as fast.

So, we are supposed to hear tomorrow the result of the appeal. Either way, we will find a way to make it through.

So enough about the insurance companies...Let's get to the more important stuff...My Dad. He seemed to be doing well today. So far, very few side effects. The worst one is that the mask they put him in for radiation is difficult to get on, and is rough on the skin of his face. It tends to scrape and he sometimes bleeds a little. But he said it is nothing because it doesn't take that long, so it is no big deal. He still seems tired, and he was having a little trouble with remembering specific places and their location. This drives him crazy....Well, that combined with me trying to help him by playing 20 questions..."Where is it?" "What city is it in?" "What is it close to?" I usually don't help much, but eventually he will stumble on something that gives me a clue as to what he means, and we get it figured out.

The highlight of my day was when I got to tell Dad that I signed up team "Scotch on the Rocks" for the National Brain Tumor Foundation 5K walk on September 13th, down on Mission Bay. As I get more together, I will send out more information for anyone who may want to walk on "Scotch on the Rocks" or anyone who wants to donate to our team and this important and timely cause. He looked at me and started crying (which is not as frequent as it used to be), and said "top job. Such good news...Thank you, top job." I want to make him proud, and help support the kind of research that has lead to the treatments like the focused radiation and the chemo pill (that is designed to go through the blood-brain barrier, which was difficult for other types of chemotherapy to be as successful with brain tumors) that my Dad gets to benefit from. I know there are some really promising things on the horizon at Stanford, UCLA, Duke and Cedars-Sinai, including a vaccine that is in testing trials to help prevent the regrowth of this kind of tumor. It uses the patient's own cells, and their cancer cells to create a vaccine that encourages the bodies immune system to prevent regrowth. Here is a brief video about it: http://www.webmd.com/video/brain-tumor-vaccine

I have not been able to find anything more current than spring of 2007 regarding the vaccine or the results of the trials to date, or if there is anyplace locally that is participating. I mentioned it to Dr. Hardy when we last met with him, but didn't get much of an indication that it might be available as a clinical trial nearby. But it is certainly promising.

So, please consider walking on "Scotch on the Rocks" in September. It is $25 registration fee, and they are hoping that each walker can raise at least $250 in donations. Here is the NBTF Web site page on the walk: http://www.braintumor.org/AngelAdventure/san_diego/

And here is my donation page: http://www.firstgiving.com/scotchontherocks

Much love and a great weekend to all!

Finally...Radiation!

So, radiation did finally start today. It took them a few tries to get him situated on the table, and to get the mask thing on him so it wasn't hurting, and get it attached to the table. They let my Mom in that whole time, and then let her watch from the little control room. I guess she said that on the monitor, they had the areas circled or highlighted that they were targeting, which is the tumor cavity and the small tumor on the left side. She said they were all commenting on how large the tumor on the right had been.

When I asked him how it was, he said it was a piece of cake...YAY! Mom said he got a little emotional after the treatment...But with all the build up and waiting, who would blame him.

Oh, and he took his first chemo pill last night. The floor nurse Flor (no pun intended), kept a close eye on him until she left at Midnight, and she asked the night nurse to check in on him throughout the night, to make sure he was ok. Both ladies said he was snoring away all night. He said he felt fine when he woke up in the morning, and I think he even did PT. I know it is only the first day, but I am just hoping that this will continue.

Still tired today. Found out they have to replace the entire length of pipe...So, bad news is more jackhammering...Good news is that it is making it's way further down the hall away from Dad. Although I am not sure we will be there much longer, which may be a good thing. We are looking for a new place that can handle him as a long term care patient. Thankfully, my Aunt has offered to help try and find a place. That way, I can be at work, where I can, oh I don't know, continue to earn a paycheck, and call insurance companies, and that gives my Mom a chance to be with Dad. My Aunt and Uncle have really been a blessing throughout this whole thing.

In actuality, we have had so many people who have been there for us emotionally, physically, spiritually...The phone calls, sweet voicemails, emails, cards, hugs, plants...It has all been wonderful for my Mom and I. Most important right now, is keeping Dad's spirits up. I know visits will be a little more difficult now that he is so busy, but weekends will be open, and once we figure out where he will be moving to, I will let you all know.

Love to all!

If it is not one thing...It is another...

So, after a little creative complaining, my Dad should start his radiation today in the afternoon. He took (or was supposed to take) his first chemo pill last night.

I also think that the jackhammering is done.

So all is good right? No, not really...

I guess an assessor from Secure Horizons came and assessed my Dad's progress yesterday, and has decided that he is not progressing as much as they think he should be, and has decided to suspend benefits at Arbor Hills, and he needs to be out within 48 hours.

So, I have filed an appeal, and I am hoping that they will review his records and approve for him to remain at Arbor Hills. We like it there. It is clean, convenient and the staff is good to him. If things don't go in our favor, we will have to find another place for him, until we can take him home. Just a lot to do and not much time to do it in.

Other than that, Dad was a little down yesterday. I think all of this waiting, in addition to the yelling room mate, and jack hammering has weakened his resolve. He has been more tired, and napping more, but I think he is not really getting a good night's sleep either. It tends to wear on you. I also think that his physical therapy has not been as good because he is so tired, which frustrates him even more.

Visitors are always good to cheer him up. If he indeed starts his chemo today, it looks like he will be going in the afternoons. From what I understand, it really only takes about 10 minutes to get him in, on the table, radiated, and off the table. So, it will take him longer to go the .75 miles to the appointment than it will to have the appointment. But at least we are getting the ball rolling.

Anyway, hoping for better news coming up.

Much love.

I might as well have been doing the jackhammering myself...

Holy cow! I was there today when they were jackhammering for the first time...I swear, even with earplugs in, you would have thought they were right next to us...My Dad and I were trying to have a conversation, and our heads were approximately a foot apart...And we couldn't hear each other. It was like the Travelocity or Orbitz commercial where the couple is unpacking in their hotel room and every time the guy opens his mouth, they jackhammer...Unbelievable. They are apparently replacing a pipe in the hallway, and they have a hole in the floor approximately 2 feet wide and 10 feet long, and it is about 4 feet deep. They don't know how much longer it will be...I hope it gets fixed soon!

Dad was a little down today. I think that between the machine still being broken, with no indication when it will be fixed, and the jackhammering, and his room mate yelling all the time, he is just overwhelmed. He was even disappointed in his PT today. He said he felt like "there were 80 year olds running circles around him." I sure hope they get that machine fixed soon...And the pipe fixed soon...And Terry (his room mate) feels better and quiets down...Soon.

I kept trying to get his spirits up, and telling him that each day is new and he has opportunities to excel and try hard each and every day. Sometimes the pep talks work, and sometimes they don't. And sometimes, they work after a period of time. I miss the "grand plan" speech...I haven't heard it in a while. The longer we have to wait, the more the momentum slows.

He did tell me today "I just can't wait for chemo and radiation. I can't believe I want something that will probably hurt and make me sick, but I just want to get it going. For something different, something new...And it is going to help me get better." So, he still has his determination, but it is just dialed down a bit.

I go back to work tomorrow. I took a few days off because we had to get some power of attorney stuff in line, and I took my Mom to a Dr.'s appointment today. It is a regularly scheduled appointment that my Dad always took her to, so I wanted to be sure she was ok.

Anyway, I hope to have good news of some sort tomorrow. Let's hope the machine is working soon...Maybe, if he can start radiation, he will be gone to his treatments while they are jackhammering..."Kill two birds with a couple of stones" as my Mom would say...She always gets them wrong.

Much love.

The ghost in the machine....

Yep...You guessed it...The machine that they need to line my Dad up for radiation is still broken. Sheesh, any day now folks...My poor Dad is so ready to start chemo and radiation, and he just keeps having to wait. It seems that wait is all he gets to do...:)

Sorry I took a few days off from the blog. Everything has been just so overwhelming, that I just didn't really even turn on the computer for a couple days.

I spent a lot of time with Dad over the weekend and today. He is in pretty good spirits...Especially considering that the nursing home has been having plumbing problems for the past few weeks and the last 3 or 4 days they have been jackhammering within 20 feet of my Dad's bed...Just on the other side of the wall of his room. Today, when I got there, he had earplugs in. I sure hope they get it repaired quickly...All that noise is bound to get on one's nerves.

And speaking of noise...My Dad's new roommate is something else. The poor man had a hematoma in his head, and they operated and removed it. He was doing ok, and then he came down with pneumonia. Well, he is really declining and having a hard time. He tends to yell a lot and when the nurses and CNA's try and help him, he gets pretty violent. And the poor man has a hard time breathing. And he is quite loud...And snores...So, you can see that is it pretty remarkable that my Dad can maintain his good spirits.

So, my parents used to go to Marieta's restaurant in Santee once or twice a week for dinner. The staff got to know them so that when my parents would drive up, they would come out and hold the doors for them to come in, and by the time they got to "their" table, my Dad's margarita and my Mom's glass of wine would already be on the table waiting for them. The last time they were there was May 31. My Mom and I decided to go there for an early dinner tonight.

We had a nice dinner, and then on our way out, we took my Dad's favorite dinner to go, just the way he likes it. We took it up to Dad so he could enjoy Marieta's again. It was like he was in ecstasy...With each bite, he would close his eyes and chew slowly, relishing every taste. And to top it off, I brought a margarita flavored wine cooler thing and my Magic Bullet blender that my Dad got me a few years ago for Christmas, threw in some ice, and voila! A pseudo margarita! He just loved it!

He has been very witty lately. Cracking jokes and smart comments...It is amazing he still has his sense of humor. He just makes me laugh!

Well, here's to hoping again that they will fix this blasted machine so Dad can get started on radiation.

Much love.

Is there a mechanic in the house?

So, the machine that needs to be lined up so that my Dad can get radiation is still not fixed. They did not reschedule his appointment again, so hopefully they will be ready on Monday to get things going.

He was doing well tonight. Talking about his "team," and how he is lucky to have such great people surrounding him.

Mom said that she came and fed him lunch, and he then wanted chips and candy, of which he had plenty. I showed up just after he finished dinner, and about 10 minutes after that, he started complaining about having a tummy ache...Gee, do you think it could be a combination of chips and candy? I asked him if he was going to be ok, and he said "yah, I will be alright...Even though I have aches, it was still all worth it." And he had a big grin and started laughing. He is so funny sometimes.

Of course, I also gave him a couple bites of fudge. Our good friends took a trip to Michigan to visit their family who recently moved there, and they spent some time on Mackinac Island, which is famous for fudge. They sent some back to us, and my Dad loved the macadamia nut. I will take him a little bit each day for a few days...He thought it was pure heaven! Thanks Jen and Brent...And Chloe.:)

A short note on Tucker. The tests came back "unremarkable," which I am taking to mean that they didn't find any sign of infection, so it is probably cancer. I will take him to the Vet Specialty Hospital so I can get a final diagnosis, and figure out what I am going to do next.

Hoping to spend some time with Dad tomorrow afternoon. Going to my folks house to do some work there in the morning. No rest for the weary...:)

Hope everyone has a wonderful weekend!

Love to all.

And the hits just keep coming...

So, Dad was doing pretty well today. Still very weak and quiet, but in pretty good spirits. I had a laugh because when I got there this evening, my cousin was there, and looked oh so relieved when I showed up, because it was dinner time. She smiled at me and said "you are just in time for dinner..." You should have seen her jaw drop when, as she was walking toward the end of the bed, my Dad grabbed half of his sandwich and took a bite. She said "oh...you can eat yourself, huh?" My Dad could charm a blind man out of his dog...;) He lets my Mom feed him, but I tell him he has to do it himself, except for things like soup...

The machine they need to line him up on prior to radiation is still broken, so they have rescheduled his appointment to Monday at 3:00 p.m.

So, I took one of my dogs, Tucker, to the vet today for a follow-up appointment from about 6 weeks ago, when I told the vet he had a cough. She prescribed some herbal cough syrup, which hadn't made much difference, and with all that has been going on, I have not taken him back for a recheck until today.

Now, Tucker is my diva dog. I actually say that my parents were reborn in my dogs. Tucker is very proper, sweet, sensitive, and a little diva....Like my Mom (love ya Dorth!). Newman (or Macrame' as he is known these days), is sweet, tough, loving, determined and never complains...Sound like Scotch or what?

So, Tucker had a bit of a rough go of it almost 2 years ago. He had a bit of a stiff walk for a few years, but as it got to him not being able to go up and down the stairs, I took him to the vet. Well, this set off a whole chain reaction that included 3 clinics, 7 different vets, and somewhere in the neighborhood of $6,000. He was sick for months, and I had to carry him everywhere. I kept asking the doctors if it was time to put him down. He was going on 9 years, which is not young for a Jack Russell Terrier, but it is certainly not old either. All of the vets told me "no, he will get better." The medication he was on was making him weaker and weaker. Out of desperation, I ended up looking to a holistic vet to see if there was anything else we could do. I found Dr. Unger. At my first consultation, (I cried most of the way through it), when I asked "is it time?" Dr. Unger told me to give him 6 more weeks, and then it might be time. In the meanwhile, she changed his dog food, gave him some herbal supplements (none that I could pronounce), and started him on acupuncture treatments....Yes, you read right...Acupuncture. Now, I am sure it was a combination of the high level of other medications he was on finally kicking in, but 10 days after his first acupuncture treatment, he got up and walked on his own for the first time in almost 6 weeks. Within about 3 months, he had made a full recovery, was completely off all medication and was better off than he had been in years.

Well, not to be outdone, Tucker decided that he wanted to be like his "Grandpa," and have cancer too. Dr. Unger found a mass in his chest that she is pretty sure is cancer. We may learn more when the blood tests come back tomorrow.

I have always treated my dogs like my kids, and my parents always have as well, and I have had Tucker all of his life. We are all just devastated. I wasn't going to tell my Dad, but Mom thought it would give him something else to think about. I took Tucker by to see my Dad on my way home from the vet. I put Tucker on the bed, and he just laid by my Dad the whole time. I think they did each other good. Just don't tell Dad you saw the picture on the Internet...Although it is a great one, he has been adamant about having his photo out there. I think he looks great!

So, another rough day for the Reed family.

Love to all.

It is finally all catching up with me...

Sorry there was no post yesterday. I have been fighting a cold for the last week, and it finally caught up with me.

I did see Dad last night, and he was doing well. He had some new visitors yesterday (thank you Jack, Ceille and Stu), and that always inspires him. But still, he was ready to go to sleep by 7:30.

He was in pretty good spirits, and we had quite a few laughs. He got a shower, and that always makes him feel better. Ever since we went to the eye Dr., where I gave him a Werther Caramel from the candy bowl, he has been craving these candies. So, after asking for them over and over, my Mom left and ran out to get him a bag.

Yes, more cravings...:) It is so funny too. It is like having an 8-year old child...He complains that they give him SOOOOO much food at this place...He likes it, and often eats it all, but it is "so much." I personally think is is very balanced and the portions are generous, but not out of control. But within an hour of eating, he wants chips, or candy. In fact, the other day he tried to get me to let him eat chips instead of lunch...Well, I am kind of stern when it comes to living on chips, so we can usually work out a deal...Eat his meal, and if he is still hungry, he can have some chips.

But yesterday, he started complaining that he had wanted Werther's Chocolates, and that he had been asking for them, and only got caramels. I called him out because my Mom takes everything so seriously, and was basically heartbroken thinking she had gotten him the wrong thing. I told him that he asked for caramels, and I wasn't even sure Werther's made a chocolate flavor...I will be at the store later trying to find them.

He was asking what lay in store for him today. I told him that he was going to do PT, and he said "and then what?" I told him that he would be hanging out the rest of the day. He really likes to feel like he is accomplishing something every day, and while the PT used to be enough, he wants more stimulation. I think, starting Monday, he will get his wish!

So, he takes a short trip back to the Cancer Center tomorrow so they can line him up on the radiation machine in preparation for the start of his radiation treatments on Monday. Just his luck, when we were there on Tuesday, the machine was broken. So he goes tomorrow for this last check, and then Monday, he will start the radiation and the chemo pill.

I am just hopefull that he doesn't have many side effects from the treatments, and that they work well. Now for the next round of hopes and prayers I guess.:)

Love to all!

Finally...The big day!

So, we started out early this morning with Dr. Uhl, the radiation oncologist. He came in and spoke to all of us; Dad, my Mom, my Aunt and me.

He told us much of what he told us before, but it is good to hear again. Radiation will be every day, at the same time of day, five days a week, for six weeks. There is potential for side effects, being tired, some nausea, vomiting, a sort of sun burn after he has had several treatments....But they can help to treat all of these things. Being tired will probably be the biggest issue. Nausea and vomiting would possibly be from swelling in the brain from the treatments, but because the way the do radiation now is so specific, and with the medication he is on, this should not be much of an issue. They can also give him topical things for the sun burn.

He said they used to radiate the entire brain in situations like these. But they have learned to radiate only the cancer cells (mostly). One of the ways they do this, is they did a CT scan with a dye today, and that gets entered into a computer system that helps to map the program. Because they are so targeted with the radiation, you need to remain completely still for the 5 or so minutes of the treatment. Since it is virtually impossible to remain perfectly still for 5 minutes, they use a sort of mask to keep you still. They took the mold for the mask today on my Dad. They put some sort of net over his face, and somehow developed a mold of his head and shoulders. They will use this to line him up and then bolt him to the table for treatment. Now, my Dad is not claustrophobic, and neither am I, but I can only imagine how horrible this would be for someone who is...Yikes! But my Dad came out saying that it was a "piece of cake," and then he said "wow, I guess I am going to be like Phantom of the Opera!"

We also saw Dr. Zu today, and he is the medical oncologist, who will be handling the chemo. I may have mentioned that Dad's chemo will be in the form of a pill he will take each night. They are going to put him on Temodor, which has been used for the past several years to treat this kind of tumor. Here is a fairly recent article about a woman who it helped http://medicalcenter.osu.edu/mediaroom/press/article.cfm?ID=3858

However, Dr. Uhl did share what I have known all along. That this is a nasty tumor. He told us that most people die from it. My Dad got very upset, but quickly stiffened his upper lip, pulled it together and told the Dr. that he is a fighter, and he is strong and getting stronger every day. Dr. Uhl responded by saying that if he didn't think my Dad was a fighter, and didn't think there was a chance at fighting this, he would have put him on a short run of radiation and told him goodbye. But that is not the case. Dr. Uhl says he is putting him on a full run of radiation and going at this head on with all he has got.

I am thankful that there is reason to fight, but I am also thankful for any and all time I have left with my Dad, so, I think the best course of action is to be hopeful and confident in the Dr.s and their treatments, but to take every day for the blessing that it is and do whatever I can to help my family be as happy, healthy, comfortable and peaceful as possible...Kind of a tall order, but just like my Dad, I am up for the challenge.

So, it looks like radiation will start Monday, but we don't know what time his appointments will be yet. Dad is still looking forward to getting going with his treatments. He is a little bummed that he is going to be tired and laying around a lot, but we told him that his body needs the rest and to heal.

Visitors will be important to keeping his morale up during his treatments. We don't know how the side effects will be yet, but keep up with the blog and I will let you know. But, this week and weekend will be good times for him to see folks to help stoke his resolve and keep his spirits up. So, if you have a chance to stop by and see him, even if only for a few minutes, I am sure he would welcome the company.

Thank you and much love to all!

Don't sweat the small stuff...

So, Dad has taken to the phrase "don't sweat the small stuff." Whenever my Mom goes on about something she needs to do, or when I am going to come over and pay the bills, my Dad always says "Dorth...Don't sweat the small stuff, and all of this is small. We need to worry about getting the big things in order right now." For all of you who know my Mom well, the only thing she knows how to do...Is sweat the small stuff...:)

So, today my Dad was very tired when I got there at 6:45. In fact, he had just finished his dinner, and he dismissed us at about 7:15 because he was so tired. My Mom said that earlier, she had run out to the restroom and to grab a glass of water, and when she came back 5 minutes later, he had fallen asleep. I am not sure why he was so tired today, but he didn't have any visitors (he has been so spoiled with so many people coming to see him), and maybe he worked extra hard in PT this morning, and maybe he is getting nervous about tomorrow. Whatever it was, he was exhausted. It allowed my Mom and I to grab a bite to eat before I went over and paid the bills. It was nice to spend some time with Mom, and to make sure she actually ate. Geez, that woman is so tiny to start out with, and although she and I have lost about the same amount of weight through all this, it is like 18% of her body weight...She is just getting so thin. I can't say the same for me, but it is what it is...All I can say, is that food doesn't taste as good as it did before all this happened.

So, it has been a month today since I was told there was something going on. On my Mom's birthday. It had been going on pretty extensively the week prior, requiring some of my parent's neighbors to come over to help him up and down, but my Mom wanted to protect me, and she knew I had a busy work week, and didn't want to disturb me...Always looking out for me I guess.

It is still hard for me to fathom that all this has happened. I have accepted that it is real, and that we have a fight ahead of us, but I still can't believe that my Dad has brain cancer. And it hits me in the oddest times. I think the one that surprises me most is every time I start to back into my garage to park my car. Almost every week, if not more than once a week, the garage door would open, and I would look in my rear view mirror to back in, and I would catch site of something hanging on the doorknob to the door that leads into my house. My Dad would by me some cherries or clementines from Costco, or my parents would drop their Chinese food leftovers by for me to heat up for dinner. I don't know why, but I am almost shocked when I look back and there is nothing there.

So, tomorrow is the oncologists appointments. We should learn a lot more about his future treatment, when it will start, what it will consist of, and everything that goes along with it. I have a feeling that my Dad will be up and ready for his early pick up. He is very anxious about "the next step," and he is ready for it. When I told him tonight that I would see him in the morning, he said "bring it on!" As tired as he was, he managed a smile and a thumbs up. I am so glad he is so strong and motivated. It surprises me (who am I kidding, no it doesn't) that he is still the rock here. He is the one going through it all, and he worries about how it effects all of us...He said tonight "I sure have laid a heavy load on you with all of this." I told him that we are sharing the load, and that is what families do. I told him that I wish like hell that this didn't happen, but it did, and we are lucky to have each other and our friends and family to help get us through. And that if the roles were reversed, he would be right there for me. He looked at me and smiled, and said "you are right. So bring on tomorrow...Pour it on! Well, don't pour TOO fast..." We both laughed.

I am sure I will have a lot to talk about tomorrow. Wish us luck and keep Dad in your thoughts and prayers.

Much love.

Sunday...A day of rest...

So, I have been stumbling around in the dark in my kitchen for the past 2 weeks. My light bulb burned out, and I haven't had a chance to replace it until today. I spent the morning at home, watched Pan's Labyrinth (great movie), made light in the kitchen again, and straightened up a bit. Then I went to see Dad this afternoon.

The same as last Sunday, he was tired today, and really didn't want to do much. Sundays, there is no PT, and I think that really is what gets him going and motivated in the morning. But, he was saying today that he needed a day to rest. He even took a nap in the afternoon, which he usually doesn't do.

He also got a new roommate today. He had a crazy guy the first few days...He kept yelling out at me whenever I walked in, and he kept getting out of bed and running around in his underwear. And, my Dad says he moved around in the squeaky bed all night long. Luckily, he was only there a day or two with my Dad. We have had Howard for the past few weeks. What a sweet man. Quiet, thoughtful and pleasant. He was simply a joy to have around. He and my Dad had a really sweet relationship, and talked about all sorts of things. Howard was in to get stronger after a short episode in the hospital, so he got to go home. His new roommate was quiet while we were there today...Let's hope that lasts through the night.:)

As Tuesday gets closer, my Dad gets more inquisitive about the Dr.'s appointment. He is a little confused about what is going to happen, (as am I, we really won't know until Tuesday), so he keeps trying to figure it all out. He is not sure if he is going to have to stay someplace overnight, or if he needs more surgery, or what the radiation is like. So, he keeps asking. And every time I give him what little I know for sure, he says that he can't wait for it all to start. Because it is the next step, and he needs it to get better. He says he doesn't care if it makes him sick, or if it makes him tired, he is going to do his best to fight and be as strong as possible.

We had some family visit today. My Aunt, my Uncle's brother Gordon, and my cousin and her son. I think he enjoyed seeing everyone, most for the first time in a while. But he got tired pretty quickly as well. When he gets overwhelmed, he tends to dismiss people, and then he feels guilty for doing so. I told him that everyone knows he is going through a lot, and whenever he needs to say goodbye, to do so.

Mom and I left by 7:00 this evening. He had eaten his dinner (spaghetti with meat sauce), and dismissed us both. He said that he wanted to listen to his radio, and go to sleep pretty soon. So, we took the opportunity to get some time to focus on ourselves, which is nice to do without feeling guilty for not being with Dad. But when the man dismisses you, I guess you go.:)

Mom is going to observe PT tomorrow, and they are supposed to do the "slide(r) board transfers," which I am very curious about. So, I hope all goes well. I am going to make some phone calls to insurance companies to see what we can do to get closer to getting Dad home.

And Tuesday morning is the big day!

Love to all.

I spent most of the day with Dad. He had several visitors, my friends Steve and Steph, his friend Glenn, and our family friend Bob. At one point, we were all sitting in a circle around him out front on the patio, and he was talking to all of us about the Grand Plan...We looked like we were playing "Duck, Duck, Goose," and he was in the "mush-pot" in the middle.

I did get there early enough to see some of the PT. I am not sure he is truly walking as he says he is, but I think his perception of "walking" is a little off. They did have him stand up a couple times, which took him pulling up and 3 PT workers to accomplish, and once he was up, they had to hold him there because they don't quite understand his brace. But, they put him in this device that had a type of a sling that goes around his butt, and his knees line up in these padded sections, and it attaches to a lift that pulls him into a standing position. He can then lean on a board, and they had him doing his arm curls in a standing position, in front of a full length mirror. He is just so chatty. He kept stopping to say things to me, and I kept telling him he can talk to me, but he needs to continue to exercise. I stepped out near the end when he was back in his wheelchair using the pull down bar. The PT worker asked him to do 25 pull downs, and he kept getting distracted by me. He wanted him to keep track of the 25, because that helps him to process the sequence, which helps him to help work out his mind.

I am looking forward to the "slider board transfers" he keeps talking about, but they didn't do them today. Hopefully I will see that soon.

I tease him a lot. Mostly about the emotions he has a hard time controlling. Awhile back, I told him he is like a woman having PMS...He laughed. But lately, he has had these cravings. Like, he has been wanting something crunchy, like potato chips, and today, he told me he wanted El Pollo Loco...He has never had El Pollo Loco in his life, and he says he probably is falling for some sort of subliminal advertising, but that "marinated chicken made by that suave guy" sounds pretty good. I told him his PMS is getting worse...Now there are cravings!

So, we are gearing up for the oncology consultation on Tuesday. Dad keeps asking "what's next?" I tell him, and now he knows the answer, but I just think he likes to hear me say it again, so that he knows what to expect, for me to reassure him. It should be interesting.

I have met both the medical oncologist and the radiation oncologist, and they seem very good. I found out last week that my good friend, who has fought cancer twice, had Dr. Uhl as her radiation oncologist. She had nothing but great things to say about Dr. Uhl and the Cancer Center at Grossmont. So that makes me feel even better about our next steps, and about those who are guiding us through them.

I hope everyone's weekend is great! Enjoy this amazing San Diego weather, and spend time with your loved ones having fun!

Love to all.

Independence...He gets a little more every day...

So, I am driving up to my Dad's nursing facility today, and as I drive by the front to park in the back, I see my Dad sitting outside smoking a cigar with another woman. I do not recognize this woman, so I assume it is someone from the facility, or a friend of his I just don't know.

By the time I park, and walk around to the front, my Dad is sitting there, alone, deep in conversation. I approach him, and stand about 2 feet in front of him, just off to left. Because of the left neglect, he does not know I am there, so I listen for a second or two...He is talking about the Grand Plan. So, I say, "who the heck are you talking to?" He looks up at me and says "Oh this is my daughter." So, I repeat the question, and he says "this nice lady, she lives on Madra." So, I let him know that there is no one else around...And he says "well there was..." I laughed and told him that he is lucky that I saw her driving by, or I might think he was a little off...:) We laughed.

I sat outside with him for another 45 minutes or so. We talked about the Grand Plan, and talked a lot about our friends and family that have stopped by to see him. I asked him how he got out there, and he told me that he wheeled himself out...But only after having spent "2 hours" searching for his cigars. We keep his cigars in the bottom drawer below the closet in his room...There goes his confusion with time again. So, he is getting more control of his chair and his surroundings every day. A little more independence and control each and every day. I told him tonight that I am glad that their driveway at home is so steep, because I won't have to worry about him wheeling away after he gets home. He said that he is pretty sure he can get strong enough to get as far as he wants to! Man, he is just determination personified.

So, we got some good news yesterday. We met with a friend of my Aunt and Uncle's and we went over the Long Term Health Care Policy that my Dad took out in 1992. Not many people are willing to put a couple hundred dollars a month into a policy like this, especially in their 50's. But this group policy was offered at work, and my Dad began paying into it for both he and my Mom. Because of his efforts, we are going to be able to take care of him for a good long while, without incurring significant debt. This is such a weight off of our minds. We will be able to get the care he needs and deserves, at home or in a facility because he was always prepared, and always put his family first. My Dad cries every time he thinks about how this is helping his family, and he keeps saying "aren't we lucky?" I tell him that there is no luck involved..It was all him.

If you have a family, make the effort to protect them before it is too late. Protect them with a Living Trust, or at least a Will, and look into Long Term Health Care Insurance...It can make all the difference in the world if someone suffers and event that requires them to be cared for. If there is anyone out there interested in looking into a Long Term Health Care policy, please send me a note, and I can give you the name and number of someone who can help get you started.

So, I am going down to witness PT tomorrow. I am looking forward to see how he has progressed, and find out what he can do now. I will let you know how he does tomorrow.

I spent a great evening with friends down by San Diego Harbor, having a good meal, and watching fireworks. I hope everyone had an equally good 4th of July!

Love to all.

Scotchie's Grand Plan

So, another new visitor, another rendition of the "Grand Plan." I love to hear it every time the words leave his mouth.

My friend Allison came by to see my Dad tonight. And then she and I left and went to get a bite to eat. She has been reading my blog, and is aware of the "Grand Plan." I hope I am not ruining it for anyone who goes to see him. I hope that everyone, like me is inspired to hear his enthusiasm and determination.

But, as in each telling, the plan shifts a little. Well, not the plan itself, but the telling of it. In this version, he not only talked about his "quality of life," and his goal to "become strong for my family," he also spoke of not taking life for granted. His words talked about how sometimes we all get to busy in life, that we miss the opportunities to spend time with our loved ones, and put things like work and all of the other abstract business in life ahead of what is important. You know, the things we always say and think, but rarely follow through with?

Allison and I discussed this later in the evening, and, like her, I felt he was speaking directly to me about my life and what I put first, well, what I used to put first. The best part, was that she said, "he didn't make me feel guilty for focusing so much on those things, but he inspired me to want to shift my focus." I never really thought about it that way, but she is right. His words are honest, positive, rational, and really hit home...In a warm supportive way.

My favorite part of tonight was when Allison shared that her sister-in-law and brother-in-law went back to the Blood Bank to give platelets. This is something they had done to honor her mother who battled Ovarian Cancer for many years, and lost her battle last fall. They had been away from donating platelets for awhile, but returned because of my Dad. The staff recognized them and commented that they had decided to come back after hearing my blog post about donating blood. And the staff there remembered my Dad (well, it really has only been like 5 weeks since he had been there last), but now they knew why he hadn't been by. My Dad was so touched that he had helped to inspire others to give blood. Thank you Melanie and Anibal! My Dad cried happy tears in your honor. So, happy to still be able to help people, even though he can't do it himself.

Moments like these are priceless, as you know M&A (&A)...Thank you for being responsible for one more to keep in my heart forever.

I hope everyone has a wonderful weekend and a great Independence Day. The Fourth was my Grandpa's (my Dad's father) birthday...So, happy birthday Grandpa!

Much love.

Good vision...Literally and figuratively

So, today was the eye Dr. Things went well. Dr. Hall had Dad do the visual field test, which is the one where they test your whole range of vision for each eye. You put your eye up next to the machine, and little wavy lines show up all around your field of vision, and when you see them, you push a little button. Well, just getting him situated in the chair so he could get close enough to the machine was the first challenge, then getting him to sit still and pay attention to the test long enough for it to get a reading was a bit of a struggle. He stopped the whole test because he forgot to "push" the button, and "held" the button down. That test showed some peripheral vision problems, (sort of like blank or empty spots), which is really not that surprising considering all his brain has gone through.

They also did the Optomap test, which takes a very detailed picture of the inside of your eye, including the retina and optic nerve, and all of the blood vessels. Kind of like what the Dr. would see when they dilated your eyes, but it is an actual image. This works out well because you can compare images year over year to catch any changes to the structure of the eye. Good news is that the structure of my Dad's eyes is the same. The Dr. also determined that his eyesight is just about the same as before.

So, the good news is his eyes work pretty well, which means that the vision problems he is having are processing problems. We knew he would have these, but we are able to check off a change in vision, and focus on the occupational therapy aspect of improving this. And I know that when he says he can't see something I am doing, that I just need to make him focus. We will be getting him some mild reader glasses, similar to the last ones he got in 2005...Unless we can find where the heck he put those.

He was tired tonight. The trips to the Dr. always tire him out, and he got to have a good visit with his friend Jack today when we got back. And this evening, close friends of the family Vince and Annie came by for a chat. My Mom and I stepped out to sit outside so they could visit. When I came back in to say goodnight to my Dad, I walked in on the tail end of the "grand plan" speech. I just love that speech. I could listen to it as many times as he wants to tell it. It makes my heart sing every time. It continues to evolve a little at a time. One of the new aspects of the speech, is he is asking peoples opinions of his plan, and he is asking for feedback on if he has missed anything. I just smile...:)

He was just about to have his shower. I trimmed his eyebrows (he had more hair there than on his head!), and that made him feel a little better. The nurses also told us that he has not had his sleeping pill for the past few nights. I am happy to hear that, I think it is because he does get tired, he is comfortable with where he is, and maybe the anti-depressant is working as well, which evens his emotions out a little and allows him to relax enough to sleep. Either way, it is good he is able to sleep on his own.

He is starting to try and roll his wheelchair on his own. In fact, when my Mom got there this afternoon, she went to his room and he wasn't there. She went over to see if he was in PT...No Dad...Took a look in the halls...Nothing. So she went to the nurses station to inquire. My Mom nearly had a heart attack when the nurse said "I thought he was with you." So, they start to look, and he had rolled down the hall and was checking out another patient's room...Not sure if he was trying to hone his "door-to-door inspirational speaker" skills or not, but he was out and about, roaming the halls. We might have to put a GPS on him if this keeps up.:)

Anyway, no news was good news at the eye Dr. It helps to better specify what we need to do to help him to keep improving.

Much love.

Unending determination...

Now, my Dad has always been a pretty determined guy. To have fought back from Polio, where he was told he would never walk again, to graduating high school, college, work hard all his life, have a family that he has made a priority...He had to have a heck of a lot of fight in him, and virtually no understanding of quitting or self-pity.

He still amazes me every single day. When the man has every right to be mad at the world, or God, or life itself, he still manages to be a pillar of motivation and positivity. And not fake or false bravado, just honest, determined, inspiring determination. Now, he does question why this has happened to him, but in a curios way, not in a sad or depressed way.

To be honest, I think this is one of the only ways he could be stricken. My Dad has always been rigorous about his health. Now, yes, he smokes a little, and he enjoys wine, and doesn't always eat the way we all should, but for the most part, he has always done the things that you need to do to monitor your health. I think because he has always needed every part of what is left of his body to function in a normal way, he has always been very careful to take care of it. He has always done his yearly check ups, blood tests, took his vitamins...You name it. Had all the right tests at all the right times, and he has always been the picture of health on paper. I was at my folks house going through papers, and I came across his last blood test results from earlier this year. Everything was perfect. His blood pressure was always rock solid, he was always able to give 2 or 3 times the normal dose of platelets at the Blood Bank because his blood was rich in iron.

There is not a test to identify a brain tumor. There is no definitive cause of brain tumors. There can be symptoms, and in most cases they are headaches (my Dad has never had a headache in his life), and most are identified when someone has a seizure for the first time. We think my Dad may have had a seizure in May, but it was so minor, he remained standing the entire time, and was speaking through the whole thing. Many times brain tumors are found too late to even conduct treatment. I wish we would have found it earlier, and I wish it was not so aggressive, but where is wishing going to get me? I am just so thankful that we do have this time together, and for all intents and purposes, he is pretty much himself, and has come through to this point with flying colors. I am so close to my Dad, that I can see the things that are not quite right yet, but I think most people who are seeing him for the first time, or seeing him again after a little while are surprised how well he is doing. And even I am surprised at the progress every single day.

Tonight he was asking me again about his appointment on the 8th. He couldn't remember if he was having surgery again, or starting chemo or what. Well, I told him "no more surgery for now,' and told him that he may start chemo after that appointment, but we wouldn't know until then. I know there is supposed to be a CT scan with some dye, and I am assuming they may do the small tattoos to line up the radiation each time.

He said "it probably sounds silly, but I am looking forward to the next steps. It is a new challenge and I know it is going to be hard, but it is something different, and another chance to beat this." He looked right at me, and said "This is just a bump in the road. I have already survived the hard part. I made it through surgery, which is a battle won. Now, we are on our way up the other side...And there maybe more bumps, but I am ready to take them on. I know I will not have forever, but I will take all the time I can, and I will fight for a quality of life. If I have 10 years...Great! If I can have 5 times 10 years, even better. But whatever I have, I will fight and make it count."

I sure wish I had a fraction of the strength and determination of that man.

Much love (and determination) to all.