Back on Track

Two units of somebody else’s blood and three shots of Neupogen did the trick. I do think it took some creative interpretation on my medical team’s part, but I did make my numbers yesterday and I did get my infusion and my take-out drugs. Besides the trial drug, Olaparib, I am taking home a different WBC booster called Neulasta and whatever the not-over-the-counter equivalent of Claritin is. For some reason, Claritin eliminates (or nearly eliminates) bone pain from Neupogen and Neulasta. Why? Who knows? I asked some of the smartest medical minds at the NIH and I got a shrug. I suppose it makes no difference…. if it works. Because the ache in my bones from three days of Neupogen last week became excruciating if I waited too long between popping Motrin like little orange Chiclets.

First of all, I had to give myself the shots. The nurse at NIH said, oh, the needle is really little, it’s not going to be much different than your insulin pen needles. But I do believe I shrieked when I saw the size of the needle she wanted me to use. I recoiled enough that two people went scrambling to find me a smaller gauge needle. The trade-off was that it takes longer to inject the drug, and that part hurts. But nothing like what set in a few hours later. My doctor friend, Joe, said in people our age (29), most of the WBC production is in bones around the sacrum, hips, pelvis. And that’s exactly where the ache set in. It was enough to wake me up at night. In the last post I said it was like sitting in coach flying to Europe. It ended up being like sitting in a dog crate in steerage flying to Australia. You know, I don’t remember much from Cancer 1.0 in 2001, but I do remember that Neupogen made my bones ache. So I was ready for it, just not the intensity of it. At least next time, I’ll be armed with…… Claritin.

Another interesting, but pain-free side effect of the infusion comes from the Dexamethasone. It’s a steroid that’s part of my pre-meds. For whatever reason, it makes blood glucose levels shoot into the stratosphere. I was warned about this, and it happens every time, but it’s still a challenge every time. Here’s what it looks like on my glucose monitor:

My Diabetes doc says to treat it with insulin just like I ate an entire box of Krispy Kreme doughnuts. I do that, but for at least a few hours (like 12), the numbers don’t go down. I am somewhat conservative with taking insulin, as I don’t want to crash myself in the middle of the night. The glucose level usually starts going up around 8 pm. Plus, to me, it’s a false reading. I didn’t eat anything. I don’t get where the glucose tsunami is coming from. So weird.

(Dang, I just saw that I didn’t get the upgrade on my flight back to Salt Lake.)

When my trials nurse, Linda, told me that NIH days in this trial are all day, she wasn’t kidding. I go in to have labs done between 7 and 7:30 am (after Orange Theory!!!) and I don’t usually get out until 6 or 7 at night. Occasionally later, hardly ever earlier. Because after the blood draw, the lab has to analyze my numbers, I meet with the doctor, they send in the infusion drug order to the pharmacy where it has to be thawed and mixed (takes up to two hours). I get called in to the day hospital and hang out until the drugs arrive. Yesterday, there was a snafu, and it took FOUR hours (which made me miss the beginning of the Caps-Flyers game.. .But all I missed was a Flyers goal so no harm, no foul). The infusion takes five hours: Two hours of saline, then pre-meds, then the drug, then two hours of saline OR a blood transfusion, which adds an hour. Then I have to go to the other pharmacy to pick up the Olaparib and whatever other drugs I get. It’s a big, intense day. But I do get to watch movies. This time, it was the new Blade Runner with Ryan Gosling.

(Ahhhhh, I got my Delta upgrade after all!)

I finally did get to the Caps game in time to see the Caps score five goals. It was a great come-from-behind victory that included TJ Oshie (ChiojiOshie to me) getting his first goal in 13 games. I’m sure that’s some sort of a sign for me, but then, I’m always looking for signs.

My hair update is a sad one. It continues to fall out, but at a slower pace. Of course, I have much less to fall out now. I am still resisting the move to shave it all off, since with my constant companion, the ski hat covers the bare spots and my hair still sticks out the sides. It looks almost normal. Plus, I’m leaving for the SUPERBOWL in MINNEAPOLIS on Saturday, and I need all the insulation I can get. You may remember my niece, Jen, works for NFL Films. She is making it possible for my brother and me to go to our first ever Super Bowl. I was hoping for a Vikings home game, but the team made sure that didn’t happen. For the first time ever, I’ll be pushing for an Eagles win. I, like most of the rest of the country, am mostly cheering against the Patriots. It’s going to be amazing no matter what. Yet another experience of a lifetime.

And after all, isn’t that the point of all this? Extend your life so you can add on as many adventures with people that you love as you can. Even if your bones ache and you have a constant cough and your  endurance sucks and your hair is abdicating its responsibility to be cute and on your (my) head and you’re headed to one of the coldest places in America. I conquer all these things every minute of every day to try to do cool things. It may sound courageous, but really, what else am I going to do, knit? #defy