Sunday, November 15, 2009

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!

7 comments:

  1. So are there any side effects to the drugs you are taking?

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  2. Much love to you all. May God bless you to enjoy and endure this journey.

    If you haven't already, take some time and look up the experience that Elder Maxwell had one day while he was waiting to be less radioactive.

    The Findlay Family

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  3. aww, I love what the kids had to say! I love kid quotes anyway. Kids are so fun the way they think.
    You have a great attitude and I'm glad you have the ability to turn this into a HUGE teaching "moment".
    You are all in our prayers.

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  4. great teaching moment for you and your family. i agree, we need to remember to be thankful for everything and if our kids can learn it from us, they will be all the better for it. hang in there bro, we all love you guys tons!
    ray

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  5. Bryan,
    You're posts are so descriptive, sometimes stomach turning, entertaining, and humbling all at once. I hated not seeing you guys in Daytona this year. I bet the kids had a blast as always. Gavyn obviously (after reading this blog) hasn't changed much he's Bryan jr., not afraid to say anything. Just wanted to send prayers and best wishes your way, and to the rest of the family. Hang in there!
    -Brittany Stewart

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  6. you are a good daddy. i'm glad you have great family to surround you. thanks for taking care of him amanda.

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