So, here I am at the hospital for the second time and it's 1:43 a.m. and can't sleep again... I just got done reading my last blog entry and realize how scrambled my brain was from the chemo! I'm usually careful about spelling and grammar (not to mention the flow of my thoughts). I think at the time I was just looking for a way to relax and the jotting of my thoughts was very cathartic. I got this tip from my cousin Ken who is a prostate survivor. Can't wait to read the book Ken!
Speaking of survivors, I have to mention my Mother (breast cancer) and sister Nicole (brain cancer) as two of my main sources of strength and inspiration in dealing with this disease. I keep thinking if they can do it, I know I can.
The time between my last chemo and this current cycle went by so fast. I had some complications with my bladder and kidneys which I mentioned. I also had my first platelet infusion which was scary. The docs have to go over all of the possible horrible things that can happen to you by agreeing to accept a total stranger's platelets i.e. bacterial/virus infection, aids etc. so I was unsettled to say the least. Things turned out ok though so I think I'll be more relaxed the next time I need platelets or a blood transfusion which I think will be common with this regimen. I've come to realize that the unknowns of treatment are as scary and sometimes almost scarier than the cancer itself. I need to do a better job of trusting things will work out and if they don't, try not to sweat the "bumps" too much and just move forward...
My dad came into town a couple of weeks back and it's been comforting having him around. I feel bad that I had to uproot his life and have him travel across the country to Seattle from Michigan but he's been a great sport and supportive. We've tried to make the best of the situation playing golf and eating some good food at Jackie and my house and some good restaurants. I think he's getting used to the city and hopefully enjoying it as we've gone to Pike Place Market, Vashon Island, Bainbridge Island by Ferry and Green Lake.
One thing that has surprised me is the enormous appetite I've had after the first week of chemo passed. I literally would wake up in the morning and go for a huge bowl of raisin bran and not stop eating for the rest of the day! My Dad and Jackie have been amazed... I think I've been trying to gain weight for the inevitable time in the future where I won't be able to eat except through a feeding tube or can of Ensure. A former colleague of mine recommended I give the doctors the "best specimen possible" so my job was to do just that by fattening myself up relatively speaking. Jackie took a picture of my Dad and I on a ferry going over to Vashon island across Puget Sound and we all cracked up when we looked at it as it looked like my stomach was pregnant in the photo! I think it had something to do with the wind blowing my shirt (I hope) but it was funny nonetheless.
Some final thoughts before I go to bed... I received good news regarding my Auto Stem Cell Transplant; the insurance company is going to pay for both transplants contrary to what they said previously, thank God! The first transplant will be a mini with only a 70% dose of knock you out chemo. The second is the killer where they'll give me a full dose of drag down knock you out chemo with 4-5 days of total body irradiation twice a day. The docs tell me I'll probably need to be hospitalized for at least of couple of weeks for this one in isolation so of course I'm not looking forward to it but realize I've got to do it for a chance at a cure.
Ok, I'm gonna try and get some rest now as tomorrow is going to be a doozy as I'll be receiving 3 chemo drugs all day long with one through the night (Ifosfamide). The others are Etoposide and Carboplatin (I think that's what it's called).
Down and out for about a week...
Chris
Saturday, July 26, 2008
Tuesday, July 8, 2008
First Post ICE
It's late... 12:40 a.m. to be exact and I can't sleep as usual. Now that my head has sort of cleared from my first infusion of the ICE I thought I'd try and make some sense of all of this.
The time at the hospital was mainly a blur. Jackie was there pretty much throughout which was very comforting. I mostly laid in my bed half in a state of shock still... Can't believe how much of the crappy dry bland hospital food I ate! Even Jackie was amazed. I Thought I was getting a deal or something, "order whatever you want, whenenver you wan't it they said". I was ordering deserts, extra drinks, gravy, sides, you name it...
Now, the thought of that food makes me almost wretch. I'm having a hard time drinking enough water and gatorade to make sure I keep the blood out of my urine from the Ifosfomaide chemo. I must say I did somewhat gourge tonight from a listen in on a conversation at the SCCA where a fellow survivor was raving about the king crab legs from a place called Roserios. They (him and his wife) were talking with their doctor previously about some Velcade treatments so I think he was a fellow Lymhphoma survivor. Anyway, Jackie and I went up to the Safeway and sure enough, king crab legs were on special and I bought 4 legs, brought em back, steamed em up and semi wolfed them down. It was the first time something actually tasted decent since they let me out of the hopsital on Saturday night.
It's only been two day but seems a lot longer. I had a really bad puke session on Sunday while trying to eat a delicious Jackie breakfast. It was my own fault as I took too big of a gulp of cranberry juice after trying some of her scrumptious scrablled eggs. This was actually the first time I puked since starting chemo some 7-8 months ago.
The hardest thing I'm dealing with right now is my detachment from the outside world. I don't know if it's the circustances I'm dealing with, the chemo or the medication they have me on. I have a feeling it's a combination of all 3 and I want to figure out how I can minimize this. Surely the chemo will where off in the next few days right? This still leaves me with the reality of my situation and how I'm gonna deal with it. Should I (like I already have) continue to cut down the meds and see what happens? Probably a good idea to talk to someone about this...
I wanted to mention an inspirational conversation I had with my buddy Lee today. Lee's dealing with a nasty Glioblastoma brain tumor that won't seem to go away. In fact, after his most recent MRI, his onc. said he'd only give him 6 months to live unless he tried this experimentat drug call Avistant which could indefinately prolong his life. The way he descrbed it to me was so calming and reasurring that it made me feel stronger to continue what I've already started in my treatment.
Cancer patients (or those facing life threaghtening illnesses) are the toughest, baddest, kindest, most understanding people on the planet. It is from these people where you can find out what life is all about...
Maybe I can get some sleep now and start fresh tomorrow. Hopefully these posts will be better as I get the hang of this!
Cheers, Chris
The time at the hospital was mainly a blur. Jackie was there pretty much throughout which was very comforting. I mostly laid in my bed half in a state of shock still... Can't believe how much of the crappy dry bland hospital food I ate! Even Jackie was amazed. I Thought I was getting a deal or something, "order whatever you want, whenenver you wan't it they said". I was ordering deserts, extra drinks, gravy, sides, you name it...
Now, the thought of that food makes me almost wretch. I'm having a hard time drinking enough water and gatorade to make sure I keep the blood out of my urine from the Ifosfomaide chemo. I must say I did somewhat gourge tonight from a listen in on a conversation at the SCCA where a fellow survivor was raving about the king crab legs from a place called Roserios. They (him and his wife) were talking with their doctor previously about some Velcade treatments so I think he was a fellow Lymhphoma survivor. Anyway, Jackie and I went up to the Safeway and sure enough, king crab legs were on special and I bought 4 legs, brought em back, steamed em up and semi wolfed them down. It was the first time something actually tasted decent since they let me out of the hopsital on Saturday night.
It's only been two day but seems a lot longer. I had a really bad puke session on Sunday while trying to eat a delicious Jackie breakfast. It was my own fault as I took too big of a gulp of cranberry juice after trying some of her scrumptious scrablled eggs. This was actually the first time I puked since starting chemo some 7-8 months ago.
The hardest thing I'm dealing with right now is my detachment from the outside world. I don't know if it's the circustances I'm dealing with, the chemo or the medication they have me on. I have a feeling it's a combination of all 3 and I want to figure out how I can minimize this. Surely the chemo will where off in the next few days right? This still leaves me with the reality of my situation and how I'm gonna deal with it. Should I (like I already have) continue to cut down the meds and see what happens? Probably a good idea to talk to someone about this...
I wanted to mention an inspirational conversation I had with my buddy Lee today. Lee's dealing with a nasty Glioblastoma brain tumor that won't seem to go away. In fact, after his most recent MRI, his onc. said he'd only give him 6 months to live unless he tried this experimentat drug call Avistant which could indefinately prolong his life. The way he descrbed it to me was so calming and reasurring that it made me feel stronger to continue what I've already started in my treatment.
Cancer patients (or those facing life threaghtening illnesses) are the toughest, baddest, kindest, most understanding people on the planet. It is from these people where you can find out what life is all about...
Maybe I can get some sleep now and start fresh tomorrow. Hopefully these posts will be better as I get the hang of this!
Cheers, Chris
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