The +Days after a stem cell transplant are really weird. There are things that are going to happen, usually unpleasant, sometimes EXTREMELY unpleasant, that are benchmarks during the recovery process. We knew that going into this. We were promised that, among other things, Steven would spike a fever, have lower GI problems, lose his hair and feel like crap. Good to know the doctors here at Shands have not gone back on their word!
Day 0, transplant day, was pretty mellow. Steven was tired and a little head-achey after all the action in his room. But other than feeling like he needed a nap, he didn’t feel any different than he did the day before the transplant. That’s the way this cancer therapy always works. You get the secret antidote but nothing happens. There isn’t a remarkable curing, there isn’t an immediate side effect. You just have to believe you got the antidote…and wait. And when you finally feel like crap, it’s working!
We are so lucky that during the 7 days of chemotherapy prior to transplant, we had some incredible nurses who would teach us and explain what was happening, what could happen and what would happen during Steven’s hospital stay. This is a teaching hospital and it really shows in all the staff. They all know their stuff, they have helped guide numerous patients down this precarious road. They are incredibly pleasant and kind while caring, teaching and reassuring the patients to whom they have been assigned. There is not a bad, cranky or inept nurse on the floor. They are all rock stars, and the PCAs are too. But just as it is with rock stars, everyone has their favorites for one reason or another…and so do we.
While I was tending to our real world for the first few days of chemo here, Steven regaled me with stories on the phone of all his caregivers. And then came Nurse Priscilla. He just loved it when she was assigned to him. He had nothing but wonderful things to say about her attitude, knowledge and demeanor. He talked about her with the same respect and reverence he has for Taylor Swift! LOL! I know that sounds weird but that’s Steven’s rock star. Talented, cute, smart and a lady at all times. That is his MO for evaluation, and has been for as long as I’ve known him. When I finally got to spend a few days with Steven, I realized that Priscilla is more than Taylor Swift. She is Alexis. She’s smart, with a funny twist that makes her explanations of all things cancer seem logical and bearable. She’s just as cute as can be…attractive, fresh-faced and bouncy with a relaxed way and a fast wit that is absolutely charming. Her talent for nursing is abundantly obvious the minute you see her in action. She’s efficient and confident in everything she does and knows exactly why it is the way it is. And she can explain it so we know why, too. And I knew the minute I met her that she was special and her likeness to Alexis made us feel like we’ve known her for years.
So we were schooled for every waking minute of the 7 days of chemo. We were being prepared and groomed for what is going on now. Days +1 and +2 were just a waiting game. We were waiting to see when the fever would spike and if something else would get there first. While I was at work on Day +3, something did get there first. Steven started to have that oldie but goodie that follows chemo…diarrhea. But this time it’s different. As his blood counts drop to nothing from all the chemo before transplant, normal bodily organisms get out of whack and try to take over. The gut is one of those places. If you think of the gut as the Middle East of the body, then the terrorists are called C. diff. The C. diff are just regular inhabitants when all is normal in their land, but as soon as there is conflict, that’s when they go all terrorist and try to take over. Symptoms of more severe C. diff infection include: Watery diarrhea, up to 15 times each day, severe abdominal pain, loss of appetite, fever and a few other symptom which make this little goody a real gem! It’s also a major PIA because it is contagious to people with compromised immune systems, meaning all the patients on this wing! So everyone in and out of Steven’s room needs to suit up and wash up to contain this to Steven’s room. So not only is the infiltration like a terrorist, the costuming that goes with it is akin to a disposable yellow burka! Soap and water are my best friends, with hand sanitizer and bleach wipes running a close 2nd and 3rd! And luckily those items, mixed with a 14 day course of antibiotics will wipe this terrorist cell out!
In the meantime, Day +4, which is today, finally brought the fever. Yippee, skippy Steven is officially neutropenic. As soon as he hit the magic number on the thermometer (100.5 degrees) the troops started to circle. Blood was drawn in several different vials for testing, the x-ray machine was wheeled in for a chest x-ray to take a look at his lungs and more antibiotics started, although this time they’re not oral, there is another IV drip. Being the overachiever that he is, Steven went to 101.5 for his temperature, just so he could clear the mark far enough so he could get some Tylenol for his aches. All day yesterday he was right around 99.9 degrees, which was enough to make him feel crappy but not high enough for Tylenol. There a are pretty strict precursors for side effect treatments after the BMT. The fever will come, but the body has to be left to it’s own device to bring on the fever. Anything that might be a road block to that natural path, like Tylenol, is strictly taboo…no matter how bad the headache or body aches are. But this is a hospital, so Oxi, anyone?
Today’s fever is a benchmark. It means his counts are at zero so his body is in a little tailspin. It’s expected. The cancer cells are gone. The remaining cells have been neutralized – phasers on stun! The stem cells that were introduced last week have
been moving into their new digs and are getting settled. The fever is the body’s way of saying, “WTF?” And feeling like shit is what Steven is going to have to weather for the next 4 or 5 days! Which is about when the C. diff will be confined to Gitmo, as well. This is what we’ve been in training for! I just wish Soldier Steven didn’t need a nap!
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In another few weeks I’ll be taking an extended intermittent leave from work so I can be in Gainesville with Steven after he’s released from the hospital. We’re lucky that we have Hope Lodge as our halfway house headquarters before the doctors here allow us to head from home. Unfortunately, we don’t know how long we’ll be at Hope Lodge, and that means I don’t know how much time I’ll be away from work. If only the bills would stop coming! If you can help us, we’d really appreciate it.