Thursday, December 5, 2019

How I am really doing

Over the last week or so, many of my friends at FHV have asked the ubiquitous question, "How are you.". Well, the answer is complicated. But rather than going into details, I respond that I am fine or great or whatever comes to mind. I then add that they can read the blog if they want the details.

Fact is that last week was a bit rough - primarily because of pretty severe leg cramps as night. In the past this might have occurred 2 - 4 times in a night and I could usually get them to go away by walking around for 2 ro 3 minutes then falling right back asleep. But last week there were several nights where I would sleep for 30 or 40 minutes and then the cramps would lessen but not disappear completely after 10 minutes of walking. This would continue for most of the night meaning that I would be sleep deprived.

I went to the drug store and "invested" in a broad range of leg cramp cures - which may or may not have helped. Tonic water (with or without gin) seems to have no effect. Drinking lots of water does seem to correlate with fewer cramps, but is by no means fool-proof.

I have tried sleeping during the day, but this is sometimes difficult and usually results in more leg cramps. Yesterday, the leg cramps happened in the car on the way back from Dana-Farber. I can still drive safely, but it is most unpleasant.

Last night I tried a magnesium pill. I had previously decided to avoid magnesium as preferring the cramps to diarrhea. Last night was not too bad cramp-wise. Was it the magnesium, drinking lots of water. talking my weekly 40 mg of "Dex" or the phase of the moon? Who knows? Anyway, I am not complaining. It was a good night.

As I write this, we are sitting on an airplane on the way to a wedding in Palm Springs. I was worried about getting the leg cramps during the flight, but so far, so good.

Another problem I had last week was the start of severe itching of my scalp. This was a surprise to the care team. It was driving me crazy (crazier than normal), but I found that anti-itch cream seemed to make it tolerable. But the itching gradually lessened to the point where is is not big deal. Now when I scratch my head, people around me assume that I am just thinking.

And then there is the neck pain. Yeah, it is still there and it varies. Sure, it hurts sometimes, but it does not much impact my quality of life. Not bad at all today, but is this because of the Dex I took yesterday (steroid) or that I am getting used to it or whatever. I have no idea.

One good thing about this clinical trial is that it is a 28 day cycle and all treatments are oral. On "Day 1", they had me there for most of the day. The "treatment" consisted of taking the pills and then getting tests over a period of 5 hours. This after waiting for several hours for blood tests in the morning and an exam by a nurse practitioner then another wait for a chair in the "infusion area" where I did not actually get an infusion.

Yesterday was my weekly visit (Day 8). Relatively easy No exam. Blood test in the infusion area. But then was the "funny" part. I had to bring my clinical trial pills - all of them - including the Dex. .The nurse took them and sent them to the "pharmacy" where they determined the "dosage" and took 4 of pills that I brought into a little bottle along with 10 of the Dex pills - which had to come from THEIR supply - they would not use mine. The then sent them back to the nurse with my original supply. I was then allowed to take the pills. This took about an hour. Bear in mind, that this EXACTLY what I do every morning when I take the exact same pills in the exact same dosage from the exact same bottles all by myself. I don't know why this seems strange to me. Perhaps there are some parts of modern medicine that I am not destined to understand. Anyway, the nurse gave me an EKG and sent me home. I was back at FHV by 10:30. Not bad and I expect next week to be even more efficient now that the nurse knows the routine.

Of course we won't have any idea if the treatment is working until around New Years. We'll keep our fingers crossed until then.

So - all in all, life is good. My energy is good - in spite of the lack of sleep. I continue to make my bowls. We are on our way to a wedding in Palm Springs. (Guess what they are getting as a gift. That's right a very nice bowl designed and build just for them.)  Hopefully this trip will turn out better than the last one. At least I don't have to worry about appendicitis again.

So, after reading all this, (and I would not blame you if you did not get this far), you will understand why I will nearly always answer the "How are you doing?" question by saying. "Great. How are you doing?" Much simpler that way and the blog is here for those who want more details. Don't you agree.