Good News & Fun Cancer Drugs!

I go to the doctor a couple times a week to get a CBC (Complete Blood Count). I have brought Bryton twice because he thinks it is cool to see blood squirt out of my arm. I am proud of him. Anyway My CBC came back pretty much normal for the first time!!! That means I am out of the crisis phase and we can begin working on the remission thing!!!! This is a big milestone! Have a party!

I have mentioned a lot about the drugs I take. Well, here they are. In my hand you you will first see my morning hit. The white pill is called Allopurinal 300mg. It helps get the dead cellular debrit out of my blood. There is a slaughter going in in my veins and we are winning. Allopurinal is like the guys who would clean all the dead bodies up off the battle field and throw them in the river. Allo-P (as they call it in the streets) helps the dead blood cells, etc make it to my pee stream. Moving on.
Next we have Hydroxyurea. This pill is the "Shock and Awe" of the battle or one form of what we have all heard of as Chemotherapy. This is the generic. The name brand ones they gave me in the hospital were colored way prettier. They looked so cool, I used to stare at them for a bit before I put'em down. And that is the morning intake.
In the evening you can see we have no Allo-P, but we have added a couple of new friends: Gleevec and Prilosec Plus another Hydrea (I used to take 10 hydrea per day). Gleevec is the new drug that came out about 10 years ago that is saving so many people with CML. It's what they call a miracle drug. Before Gleevec, people in my situation were not likely to make it past 5 years. Gleevec is also considered Chemo and it fuels the fire within me! But the thing that makes me super grateful about it is this: If I had gotten CML when I was a teenager I probably wouldn't be alive right now. That means my cool little kids wouldn't be here either and Amanda would have married a total geek for sure. As mentioned in the last post it is also 9.2 times more expensive than gold at $132.50 per pill. It makes people alive but kills their wallets. Fair trade I think. There is a fair chance it won't work for me and if it does we don't know what the side effects will be long or short term. So far, . . . its too early to tell so cross your fingers please.
Last is my new favorite pill called Prilocec. It is no stranger to some. I'm not sure what it does exactly and I don't care a whole lot, because all I know is that it puts out the fire left over from the shock and awe and the napalm (Gleevec). Today I experienced very little burn compared to the previous two days and I hope it was the Prilosec. we will experiment to make sure that is what it was.
Okay, so that's my drugs! I hope it was as enjoyable as it was educational for everyone!

Fire Guts!!!

I have started on a new chemo type drug that I will probably be on for years if not the rest of my long life. So far, it is no fun . . . at all. Right now I am feeling the worst since I got into all this and it was the same last night. There are a lot of side effects from all these drugs but the worst for me over all has been how I feel in my innards!! My whole abdominal cavity burns! It feels like I lit up a small box of matches and swallowed them but they didn't go out. In addition, my spleen (which is getting smaller they say!) is still far bigger than it ought to be and it gets nudged and bumped by the kids, etc. all the time. So, my gut is always inflamed and swollen and feels like I've been punched in the stomach! Throw in a bit of nausia and you have what I am feeling physically! (PS - Going by weight, the new drug I'm on is 9.2 times more expensive than gold for a total of $132.50 per pill! in a way,that's a cool thought.)
Distraction is the best way I've found of dealing with it so far (good thing I have ADD!), but the more it hurts the harder it is to ignore! The doctor has given me 2 drugs to help with it but neither impacts the pain at all! Now, understand that for around 70% of the day, the burning is there but its mild and not too bad. Over the last two days since I have added this new pill to my drug mix, it has been awful in the late afternoon and evenings. It shouldn't be long before I am off the first type of chemo I take and we'll see what happens then. It makes some sense that I will feel better on one type of chemo than I do on two kinds. But, I am learning not to rely on what makes sense with this stuff. It used to make sense to me that I wouldn't get Leukemia either, since it doesn't run in my family, I'm 32 and the type of person who almost never gets sick!
The ambiguity of things can get to me sometimes also. The question mark we all have on our life expectancy seems bigger than it used to be. Will this drug work? Will I be alive but miserable on it? How long will it work if it does? what will my quality of life be now? The future seems bright in my eyes but more mystical than it was before. I just figure if I focus on the things I live for (and make sure I'm living for the right things) that big'ol question mark will stay far enough off that I have to squint to see it!
Couple funny stories and then I have to go to bed. I am borderline narcaleptic these days.
We like to eat as a family as much as possible and for the last few weeks we haven't done that as much as we used to. Tonight we had a nice little family Sunday dinner and the food looked awesome but I didn't feel like the food looked, and I didn't want to eat it even though it did call for me! The kids asked what was wrong with me and Amanda told them that the medicine daddy takes doesn't make him feel very good, etc. The kids are smart and they understood. Then Gavyn pipes up and says, "I just like the part that your not dead!" We all laughed and agreed vehemently!
The other night during prayers I mentioned that we were thankful daddy had cancer. Gratitude for the trials of life and the inevitable blessings they bring is a new concept for the kids. Makayla (our 7 year old) interupts in the middle of the prayer sure that daddy made a mistake. I stopped for a moment and listened as she whispered, "dad, you said grateful for having cancer!" Amanda and I both responded in the afirmative. Thinking we must have misunderstood her she said it again. Her tone seemed to indicate that we were either crazy or had figuratively put the milk where the cereal goes. we told her we'd explain afterwards and finished the prayer. Ironically, the story itself is an illustration of the big-little things that we gain from such trials. If my daughter learns not to be bitter with God or anyone else for the trials she will inevitably face; If she learns to be grateful in the face of tradgedy, then maybe that alone will make having cancer worth it. We have a deeply sacred and powerful responsibility as parents to care for, love, and teach our children. Thank goodness our Father in Heaven gives us things like cancer to help us fulfill that obligation!