“You’re really looking stellar”, Dr Rossetti said to her. And she was very happy to be feeling as well as she was feeling. Her blood numbers were all normal, and have been for a while. (I’ve reproduced some numbers from her blood chart nearby). Notable was the Hemoglobin level of 13.7, and the fact that her protein levels are back to normal. That made her happy.
The biopsies taken from last week’s procedure “looked good, with no significant evidence” of anything serious. She’s still got “a touch of chronic GHVD” (graft vs host disease). The Budesonide she’s taking “topically” deals with the symptoms she’s experiencing in her GI tract.
It’s probably the best possible worlds that she’s got these mild GVHD symptoms, which are well controlled. What she’s got now is probably what she’s going to get at this stage. (GVHD is pretty much brought on by DNA/HLA mis-match with the donor. So the extra lengths they went to, in selecting a donor, are helping tremendously right now). At this point the possibility that she will get further symptoms is about 30% (not 50%, which is typical in the case of having unrelated donors).
She’s still susceptible to infections, although she’s gotten the primary infections that they look for. None of them were serious, but she had “a moderate amount of everything”, and that indeed was life-threatening. But she continues to take an anti-viral infection drug, and her chances of bacterial infection are “way down”.
It was a good report yesterday, after a number of months of bad times.
A couple of people have mentioned to me now that they haven’t seen me online for a while, and they were wondering what was happening with Beth. I have to say, almost nothing was happening, except that she was getting a tiny bit better each day – imperceptibly, almost – and it almost seemed like there was no news to report each day. I guess healing is like that: nothing seems to be happening, and then one day you feel just a little bit better.
Things are improving with her, on most fronts, though slowly. Her BK virus (urinary tract infection) has finally settled down. For this one, there was no drug treatment, but it simply needed to be flushed out. Apparently it was, though it took three weeks-worth of major urinary-tract discomfort. The numbers on her CMV virus seem to be way down, too. (She had been receiving Ganciclovir for this. It was a real danger, and the numbers came in slowly, but they came down). The clot in her arm is still there, but it will likely take two or three months to go away. She is getting a drug treatment to make sure another one doesn’t form. (This is a tricky proposition, because her platelets are low as it is, and the drug that prevents clots is a blood thinner. So she has received some platelets, in addition to the drug treatment). However, the swelling is noticeably down in her arm and her legs, though it is still troublesome.
On top of all these things, the doctors have started her on a physical therapy (PT) regimen, which has her walking, exercising, and gently massaging her arm to try and further relieve the swelling. The walking, they are sure, will help the fluids in her legs to be further reduced. She still isn’t eating right (a factor which contributed to the swelling), but there is another story behind that.
The chemotherapy did a number on her taste buds. So food always still tastes bad. In an attempt to try to get her to eat some protein, I bought her a Quarter Pounder with Cheese. She said she was genuinely hungry for this. So I brought her one, and she ate a few bites. She couldn’t eat more than that, so I ate the rest. After I left the hospital that night, she threw up and started having bad cramps. So now they are checking to see that the GVHD hasn’t moved into her gastrointestinal (GI) tract. (GVHD affects you in three specific areas: skin, GI tract, and liver). My thought is that it was just the Quarter Pounder after her not having eaten anything solid for a while. But they want to be sure.
* * *
Yesterday I made chicken soup (Dad’s famous chicken soup – one of the few things I make that everyone in the house loves). I took a thermos-full of hot fresh soup down to Beth in the hospital, and she absolutely loved it. So I froze a bunch of it in small containers, and I’ll take more down to her later today.
I’ve continued to make almost daily trips to the hospital through these last three weeks while she’s been in, though I haven’t taken time off work as I did for the transplant. This seemed less serious, although, at times, it wasn’t. The viral infections could have been life-threatening complications.
Things are busy at work. And to spin the old saying, “when your wife is on her deathbed, nobody wishes they’d spent more time at the office”. But as bad as she felt, she wasn’t on her deathbed; and we still have to pay the bills. We’re continuing to get a tremendous amount of help from our church (which we don’t want to have to rely on), and some financial donations are coming in. But life will go on, and do not want to continue to be dependent on that kind of help. We need also to focus on being financially responsible in the months and years ahead (whatever happens). So in addition to working, and even working at home (I’m working with a “cloud-based” “marketing automation” program called Eloqua; it’s got quite a lot of capabilities, and in part I’m learning them, in part I’m using them, and in part I’m playing administrator), I’ve been doing quite a bit of running between places.
It’s Saturday; since Beth is not tied to the toilet, I can take the kids down to the hospital, and we can all sit and visit in the waiting area, without having to worry about sneaking Dani in. Hopefully, we’ll be there with soup.
One writer with CMML wrote that she was on “decitabine 5 days a month for 9 months now. I am in remission but must stay on the chemo”. Later, she said she was “still undecided whether to go with the SCT [stem cell transplant, or bone marrow transplant] or just stay on the chemo.”
Recovery is still ongoing. Last week’s blood test showed increases in white & red blood cells but a decrease in platelets. Doctor wants me back in this week for another blood test. I’m also experiencing some lower bowl discomfort. Doctor prescribed some Prednisone and Dicyclomine. I’ve also removed all dairy from my diet and I feel much better. The possibility exists that there could be a little “Graft vs. Host Disease” (GVHD) going on but, it could also be the prophylactic drugs I take every day causing havoc with my digestive tract. Good luck with the doctors and your decision. Personally, in my case, I looked at chemo as a band-aid and the transplant as the “fix”…but that’s me.
One of the reasons why they go for a “10/10” match on the DNA (HLA) is to try to manage the “graft vs host”. You want some of it, for the “graft vs leukemia” effect. But you don’t want so much that the new tissue (stem cells and blood) rejects its new host body.