Saturday, February 6, 2010
I decided to cave and go on insulin. I was so miserable not eating anything that I just had to suck it up and do the stupid insulin shots. Part of the reason I didn't want to do insulin is that in the past I've had to give myself shots at home of these drugs called Neupogen and Epogen, which are growth factors for that special type of white blood cell called the neutrophil and red blood cells respectively. You have to use a big honking needle for those things. Well, there are bigger needles, but those needles are pretty big, they hurt, and the injection itself stings. The insulin needle is this teeny tiny little baby thing that you can barely feel going in, so the injection itself is really not a big deal and I feel kind of silly for resisting and being miserable for a week longer than I needed to be. The improvement in my mood and outlook from being able to EAT again was immediate and I have been treating myself to some sweets - in moderation, of course. You can see my assortment of ice cream goodies - moose tracks and bumpy cake flavored ice cream with Sander's hot fudge. Is there anything better? My mood was also lifted by having a good visit with my doctor on Tuesday who thinks I'm doing "awesome."
Remember how I got the mylotarg last week? Mylotarg causes your blood counts to drop. I haven't been sharing my blood counts because they've been totally normal since my transplant, which is rare, most people have low counts for months after transplant. On Tuesday they were lower but still okay. Then I went in on Friday for a blood draw and my neutrophils, the first line defenders against infection, were 0, and my overall white count was 0.5. These are transplant-level numbers - very, very low and putting me at a huge risk for infection. So what did my doctor prescribe for me? Neupogen shots to raise my neutrophil count!!!!!
Here are the insulin and neupogen needles side by side. Notice the difference in the length and thickness of the needles:
Now I'm giving myself 2-5 injections a day total. Great.
I know this is just temporary, but I've been feeding myself that line for the past five and a half years now. Chemo is only temporary. Being bald is only temporary. Vomiting five times a day is only temporary. Feeling like crap is only temporary. Self-injections are only temporary. Being exhausted all the time is only temporary. Taking a gazillion medications a day is only temporary. Taking steroids is only temporary. 'Roid rage is only temporary. Feeling insane from steroids is only temporary. Not being able to sleep because of steroids is only temporary. Losing my hair from steroids is only temporary. Being fat from steroids is only temporary. Skin GVHD is only temporary. Putting on skin GVHD lotion twice a day is only temporary. Gut GVHD is only temporary. Drinking disgusting liquids for diagnostic tests is only temporary. Home infusions of magnesium are only temporary. Not being able to leave the house is only temporary. Not being able to see people is only temporary. Not being able to eat is only temporary. Being bored all the time is only temporary. Here's a question: When is it going to get BETTER?
Then a little bit of guilt kicks in. I know there are patients who are far sicker than I am, there was a huge earthquake in Haiti, so many people have lost their jobs and homes in the recession. My life could be worse. But really, how far can you get by telling yourself all the time "it could be worse." I want it to be good now! I am sick and tired of being sick. I've been dealing with this for YEARS people. It was easier the first couple of times around. I was younger and still very dependent on my parents, I had had fewer life experiences. This time around I've been very independent and living in a foreign country on my own terms for the past two years. If I wanted to go to Paris for the day or eat cake for dinner or blow my whole paycheck on clothes or go on a weekend getaway I could and no one could tell me no. Now my entire life is circumscribed by treatment and illness. I spend the majority of my day taking pills, giving myself injections, giving myself a 2 hour long infusion, checking myself for GVHD, putting on steroid creams to treat the GVHD, and worrying about my carb intake. Then of course there are all the days I spend at the hospital for appointments and tests. I haven't had a good night's sleep in about two weeks because of the steroids I'm on. Not as if I have anything important to spend time on or anything, but thinking about medical crap all day long is pretty low on my list of "ways I would choose to spend my time."
At least I have food, my drug of choice, to distract me. In fact, I might be ready for some ice cream now. Luckily my parents are full co-conspirators in my quest to eat whatever I want. I've lost 20 lbs since October and am still losing weight. Last night I got to eat all of the crispy skin from the roast chicken. Yum!
Here's another gratuitous ice cream shot to finish. Using a small tea cup is my effort at portion control so that I don't drive my glucose too high. See why ice cream is my favorite?