Dr. Imus Conversation

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 that the goal is not to be totally out of pain, but to have your pain not be an obstruction to things you really want to do. He said pain doctors are entirely opposed to medicines that are addictive, and chronic pain is always a challenge. The most recent example of pain getting in the way of life was when Jon cooked dinner a few nights ago because he wanted to (yay) and he just couldn't stand up for that long. There are a lot of muscles that could help hold him up that are probably very weak. Jon is so much like his father in his resistance to doing exercise (like PT) because that just hurts. I told Dr. Imus that if he told Jon to exercise, he might listen. Being the moderate, unpushy guy that he is, he said well, there are two ways to look at that: one is that you want to feel well enough to exercise, and the second is that exercise will help you to feel well. Of course, I choose the second one.  To be continued.

But what about the cancer? All the indicators are that the cancer is quiet. As we said before, there was nothing in the PET scan that showed any new activity. Dr. Imus said we will continue to watch and for right now he is not recommending any maintenance treatment. This is great news. The last time we saw the Kaiser oncologist, she said she wanted to think about starting on maintenance, which is why I brought it up with Dr. Imus. I wanted his answer.

Jon's blood counts continue to fluctuate. This week his hematocrit and neutrophils are way down. Dr. Imus said he pays no attention to any of that (except that he is glad to see the platelets are creeping back up again, as hoped) for the first three months. The bone marrow is just not working right and we hope it will gradually come back to normal. If it doesn't, there are growth factor somethings that can help.

It seems pretty clear that Jon is gradually getting better, but his body is frail. He is eating dutifully, and has reversed the trend of losing weight. We have been out to some fun destinations, eating dinner at Nell and Don's house, going to Yael's play for a second time, and he is shopping again (he says that counts as exercise).

All in all, right now it feels like all that effort in January has moved things in a new direction, as hoped. He is a little cranky about feeling so tired all the time, but when we press him to please take note, he does admit that he is feeling better than he was last week, and the weeks before. 

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