Hold Tight and Pretend It's a Plan

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...

Jon showed Benjamin how to grease the spader -- a long process because there are so many grease fittings and mysterious places to fill with gear oil. It took a couple of hours, including repairing the power washer first. So off I went on my nicely greased spader. The timing was important because there was rain predicted this afternoon and I had just spread fertilizer on the fields yesterday. We have to get the fertilizer turned under before the rain or it will wash away -- not good for the waterways or the soil. After three successful passes, I looked behind me and saw that something was wrong. The spader was askew, not attached at one point. I have seen this before. Not often, but when it happens, it takes some muscles and some brains to get things lined up again because a spader is a big, heavy piece of equipment. You can't just lift it up and push it back into alignment. I looked at it carefully to be sure I could describe it correctly and I walked away. I knew that this might b...

There is nothing new to report. Jon is feeling some discouragement about all the things: a lack of energy, feeling cold all the time even though the rest of us are warm, a back that feels worse than it ever has even though there are no indications of anything bad on any scans, and this damn cough that never goes away. Sleep is elusive. His blood counts took a dive this week, which may explain some amount of the fatigue (on the brink of getting a call to come in and get some more red blood cells). All the numbers are down. If his neutrophils were this low when we were still at Hopkins, they would not have let him go. All this means that he is still immunocompromised, as much as ever. His platelets even went down. He isn't  allowed to shave anymore because he might bleed too much. He doesn't love shaving anyway. Now he is giving himself shots to stimulate his bone marrow to make some more neutrophils. Alissa is here for a week and she has some thoughts on medications that might b...

We had a video call, checking in with Dr. Imus. It is fun to see his whole face, since we only see him in a mask. He is a young guy (40's I guess) with a thick sticking-up head full of blonde-red hair and a beard and a nice smile. We usually only see the smiling eyes. He asked how Jon was and got a longer report than usual about the various things that cause pain (because Rebecca told him to stop saying he was not in pain when the nurses ask -- he is such a literalist that if he is sitting in a chair, under no strain, and he has no pain, that's what he reports). Dr. Imus listened carefully and said that there are a variety of options, but finding the right doctor to figure it out seems important. The arms and shoulders should probably be addressed by an orthopedic doctor, the back is the result of long years of having some smashed vertebrae that were cemented into place, causing his back to be stuck in a bent position which just hurts. And there are pain doctors. Dr. Imus said ...

Yesterday Jon got the results from his recent PET scan -- no new lesions on the bones and his lungs are better than they were a month ago. These two scans were very close together, compared to normal times, so I guess it's just another snapshot. But the trend is all good. Now we have three different tests (bone marrow biopsy, blood counts, PET scan) that agree that his myeloma is in retreat, quiet, not making trouble. Next Tuesday we meet with Dr. Imus by video, and he can tell us what he sees, which will be more official than Jon's reading of the notes.  Jon is certainly getting better, bit by bit. There are symptoms that linger -- he still has this yucky cough that came with the last pneumonia, he is really tired, his sleep is not good. And there is another issue that has not yet been addressed, but now maybe there will be some time to try to figure it out: both of his arms/shoulders have been hurting him terribly for a few months. Our friend Betsy just had a shoulder replace...