Feels Like Progress Again

Now that we are reminded that it takes about three months to stabilize the bone marrow function and start to feel more normal, we can wait a little longer. We know that nothing really happens on a schedule, but a friend of ours who has the same cancer and had the same treatment told us that she experienced a bone marrow malfunction (so to speak) at about Week 8 and she stopped having any neutrophils at all. It took a while to get everything working. This week's blood report was uplifting -- his red blood cells have gone up a bit, his platelets have gone up higher than they have been in months (still really low, but it's the trend that matters) and those shots must have juiced up his neutrophil production because he is practically in the normal range by now.

I would say he has been looking a little less limp in the last few days. And it is quite possible that gaining weight is a very long term project. He just needs to eat and not think about weight, I guess. 

It is like waiting for the signs of spring -- Jon is starting to cook again. Hooray! We all know that this is the true sign of health. He can't stand up for very long, but he is cooking something just about every single day.

In addition to the shots, Jon has been energized by a low-key visit from his sister Sue and nephew Brian. In a fit of optimism a while ago, Jon sent a sideways sort of an invitation, and they accepted. Then he started to worry that he would be a bad host because he was so tired. But somehow the stars aligned and they even went on a brief bird walking stroll to look for the much-publicized Asian bird that got blown off course randomly and ended up near the dumpsters at Great Falls. Brian knows how to find little birds that aren't very colorful and after watching a pack of people staring in a direction that yielded no results, he walked a little ways off and found this famous bird. I wouldn't say that was the peak experience of the visit, but it was worth the effort. Rebecca and I were heartened to see Jon having such a nice time with family (he mostly recuses himself from the family events that happen here).

In addition to one bird and probably a few more that the rest of us didn't notice, they got to see Thalia in all her glory. She is quite a loud talker by now (think of a pterodactyl) and she gets handed from one set of arms to the next as she still prefers to be held as much as possible. Jon does his share of baby-holding and when the other little girls come over, they monopolize his attention (especially when he is cooking).

And outdoors, the cherry blossoms are busting out all over. We may be able to plant seeds in the ground tomorrow, 22 days later than last year but certainly not too late to be useful. The soil is warming up at last.

Comments

Post a Comment

Popular posts from this blog

Improving

I haven't been to see him myself yet today, but I hear that he is starting to express some angst about all the things he should be doing on the farm. This is good. It has been days since he even thought to pick up his phone, which certainly was an indication of how terrible he was feeling.  The NG tube was put in yesterday and they started feeding him right away, even though they didn't quite have the equipment in place to do it all to code. Rebecca says they manually pumped the formula, which must have been a challenge since the pace of delivery was supposed to be extremely slow and careful. By 10:00 last night, the charge nurse had installed the pump. They still didn't have all the right equipment but they managed to piece everything together and Jon was fed a small dribble of formula all night long. Today they are working on increasing the dosage, as his stomach shows that it can manage this. Things are looking up. Alissa and Rebecca went in this morning and Anna is taki...
Read more

Rolling Updates from the Waiting Room

I have to admit that we/I did not pay any attention to the details of what to expect today. We have done this a couple of times before, and I have hung out in this waiting room in years past. We were supposed to arrive at 6:30 to check in to Interventional Radiology so Jon could have a central line installed for cell collection. We did that, arriving right on time. They immediately took him back and gave me a number to watch on the board (no more names, just numbers). So I know that the patient is in pre-op. What I don't know is how long this takes, or how far I can wander. Nor do I know when we are expected at the next location for the hours-long pheresis event. Of course, there are reasons for this lack of attention. One is that we trust that we will be instructed as we go, and we are familiar enough with the hospital and its systems. Two is that the baby was the most important news, and this was much less interesting.  In brief, Rebecca had an appointment at 8 AM on Friday, the ...
Read more

Back Into the Hospital

Since the last report, a little over a year ago, Jon has been dealing with a lot of treatment-related symptoms. It has been a tough 15 months or so since he started on the Telqetamab. The main side effect was loss of taste, which led to a general loss of appetite and a struggle to eat. Through it all, Jon has continued to take care of us by cooking our dinners, maintaining so much at the farm, helping us to keep everything going. By about June, that treatment stopped being effective and the oncologists decided that he was strong enough to be a candidate for CAR-T (another long and involved process that can be described later, but it holds promise), even though he lost about 40 pounds in that year. His spirits were good, his energy was good, he had adapted to his loss of taste. The doctors prescribed a bridge treatment, something to keep the myeloma quiet if possible. It was known to have many dire side effects. Back to the decadron, a whomping amount of steroids that means very little ...
Read more