Crazy, crazy, crazy. That is the only way to describe these past few weeks. It has been a roller coaster around here lately. But things are looking up now and we are moving forward with the transplant process. So here’s what’s been going on:
A couple of weeks ago, I passed out in the bathroom at home. I stood up to go wash my hands, and somehow ended up on the floor again. I think I was a little overheated and dehydrated. It hasn’t happened again. Bobby heard the thud of me falling and came running. He looked at me lying on the floor and said, “What are doing? Get up!” I think the shock of finding me on the floor was a bit much for him at the time, but I absolutely love to tell this story when people talk about how sweet he is and what good care he takes of me. **Disclaimer: Bobby takes excellent care of me, and really can be quite sweet at times, but if you know anything about either one of us or our relationship, you’ll know that sweetness is not a major characteristic of either of us. More like sarcasm.**
To his credit, he did try to help me up, but of course I was having none of that. I got up on my own and he promised he wouldn’t tell anyone if I told the doctor. But now of course I’m telling you guys. After I told my doctor and got some fluids.
Then, when I was supposed to start my second round of chemo, my blood counts came back really low. Now I always do treatment regardless of my white blood cell counts (zero) or my neutrophils (also zero), but my platelets were really low, too. Like the number per unit I needed to be able to do treatment was 100 and mine were at 12. Like I talked my way out of a blood transfusion and promised to come back in a couple of days to get a transfusion if they hadn’t come up. So my chemo nurse went over all the bleeding risks with me, and reminded me to be very careful, and took the needle out of my port. I was packing up my stuff to go when I looked down and noticed my shirt was wet. I lifted my shirt and my chest was covered in blood. “Um, Derby?” I said. “I’m bleeding.”
The tiny hole from the needle had bled out in the few minutes I had been getting my things together. Of course, all the nurses and techs rushed over to me to stop the bleeding and clean me up. I kept trying to put my bag down, since it was still on my lap, and finally one of the techs took pity on my and tossed it in another chair so I could have my hands free to get in their way.
Did you know that saline gets blood out? I guess that makes sense, since that’s what they use to flush ports and IVs. Finally a worthwhile use for that nasty stuff. Thankfully it doesn’t smell the way it tastes when they put it in my port, or I would have puked as well as bled all over everyone. So they watched me for a few minutes, and I was fine (though my platelets were probably down to 8 by that point) and I went home. When I came back a couple of days later, they were up to 31, so I didn’t need a transfusion. And they were up enough the next week to do treatment.
Which leads me to the next fun thing. Now other than the platelet business, I hadn’t had any trouble with treatment up to that point. (I’ll spare you a description of some of the normal chemo side effects and just say everything went fine.) Round One was three days in a row, followed by one day of fluids. Tuesday is Isofomide, Mesna, Carboplatin, and Etoposide. Then Wednesday and Thursday are Isofomide, Mesna, and Etoposide. I’m probably spelling those drug names wrong, but I don’t really care.
For Round Two, I had all the pre-meds, then the first three drugs. By that time I’d been there about 4 hours. They started the last drug, Etoposide. About 15 minutes into it, I started to feel weird. Like my head was fuzzy. By this time I was the only patient left. “Derby? I feel kinda funny…” And then I couldn’t talk anymore. My throat closed up and I was gasping for air. My whole body felt like it was on fire and the nurses said I had turned bright red. Derby ran over to me, stopped the med, and then went for the Epi-pen. She jabbed that sucker so hard into my leg and held it there to make sure the meds got in…let’s just say I would never want to get into a fight with her. I’m pretty sure Derby could totally kick my ass if she wanted to. Thankfully she’s actually one of the nicest people I’ve ever met. Anyway, I digress. (I still have the bruise on my leg.) The tech ran for a doctor and the other nurse took my vitals, which were surprisingly not bad considering my recent lack of oxygen. The PA gave me some more meds, and then they all sat around and stared at me for a while. I had to call Bobby to come pick me up, and his 45 minute drive from work somehow magically turned into 20 minutes. Then he got to sit there and stare at me for a while. Finally, as I continued to breathe normally and turned back to my usual pasty white, they let me go home. But we left off the Etoposide for the rest of the week.
Needless to say, I’ve developed a bit of a reputation as a troublemaker at my doctor’s office. Not really, but I’ve noticed that all the people who work there tend to swing by at one time or another while I’m there to see if anything interesting is going to happen. I’d settle for boring from here on out.
Finally, I had another PET scan on Wednesday morning. I think this was my 6th one in the span of a year. I got my results later that same day. (This is what happens when you don’t behave yourself as a patient – you go to the front of the line so they can get rid of you.) Really I think the transplant doctor called in a STAT read. Here’s the awesome part – the scan was completely clear!!! I responded so well to treatment that I don’t have to do the third round we had originally planned for this upcoming week. But we will still do the stem cell transplant because the liklihood of my disease returning is so high.
Tomorrow I will go up to Northside and spend the day doing all the necessary tests to get clearance for the transplant. I will also see my transplant doctor again. And then I will have an entire week with no needles!
It’s the little things, folks. But needles or no needles, God is good. After all the craziness that has ensued lately, I am still hanging in there and moving forward. Onward, march!