We knew it would be a hectic day - appointments started at 7:30am and ended at at 5pm, with hardly a breathing (or eating) space in the middle. Further, they were at several different MSK buildings in the upper east side of Manhattan, some 20 blocks and 5 avenues apart, to add more spice. So, we spent Thursday night with a friend, and left really early to be on time. Naturally, we went to the 74th and York Ave. location, only to discover that we should be at 53rd and 3rd Av.e But this was our only mistake that day. Plenty of cabs and walks between them.
First was the neurologist. This appointment was set up a few weeks ago, when my neuropathy symptoms were much worse. I hoped to get more treatment ideas regarding my neuropathy, or at least prediction of the future. But as Edna predicted, we gained nothing – it is “probably small fiber neuropathy” and it is “probably associated with the transplant, or chemotherapy”, and it “may improve or get worse or stay stable over time”. It was amusing to see that even MSK doctors have to look up on Google what are the ingredients of different chemotherapies to see which ones affect the nerves. We are not likely to see him again.
Next were our transplant doctor's nurses, which we always enjoy seeing. More results came out of my bone marrow biopsy, and they all look good. It is all donor cells now. They do some quality analysis of the immune system. As expected at this stage, my new T-cells are doing better than my B-cells, but overall they were very happy with that state. I am allowed to eat practically all fruits and vegetables (especially the berries I like with my granola), but not sushi yet. I'll see my doctor in 2 weeks.
Next, veins and arteries tests on my legs (these are related to the many issues in my feet – swelling, rashes, burning etc. I wrote about). Each of these is an hour long. While veins are inspected by Ultrasound, the arteries are via blood pressure. The picture below shows my legs covered with many blue (did you guess?) blood-pressure bands (I had two on my arms as well), all connected to a spider of tubes blowing air for pressure. For some reason beyond me, they pump different subsets at different times, and it seems the technician is just playing flute to create a weird kind of music recital, recording it all. Incidentally, I was told not to eat or drink anything for this (something we verified to make sure). As my last meal and drink were the previous evening, and as this was going to end around 2pm, I definitely felt like I could use something. Asking the radiologist who did this why such fasting was needed for this test, she was stunned, said it wasn't, and rushed to get me a couple of crackers and a juice can, worried that I faint for lack of sugar.
As this ended late we rushed to get another cab to another building. This was with the Lymphedema (aka swelling) expert. Last time she taught us two weeks ago how to dress my toes, feet, ankles, and calves (in this order) with bandages to reduce swelling – you can see in the picture below how this looks. As opposed to compression socks (which I also wore to try and reduce swelling) these wraps are something you can sleep with. For a few nights before going to bed Edna and I spent a long time performing this wrapping ritual, to a mix of fun and boredom. But...it worked. My feet shrank almost to their original slim size in the two weeks that elapsed. As she saw us this Friday, she basically congratulated us and “fired” us, saying there is no reason for us to see her again. I finally had time to eat the croissant Edna bought for me hours ago...
Then we had time to walk the 25 blocks back, and even have a cup of coffee before the next appointment, with the dentist. One has to see a dentist before every transplant, to make sure no infection is brewing that will kill me just as my immune system is replaced by a virgin one. These X-rays were also a baseline for this post-transplant visit. She was happy to find that very little damage was done by the various chemos to the teeth – another good grade (I was a good pupil, and brushed after every meal as she told me the first time...). Another appointment only in 6 months – all in all a big reduction in the number of regular experts' visits.
We headed to our friend's apartment. We stayed another night in the city, so that the next day we can go to the opera. We saw “The marriage of Figaro” at the Met – that's where the picture above was taken. So, as you see, I now feel comfortable going to operas as well (with my mask on of course). It was a really nice ending to a very efficient and amusing visit!
Finally, to the promised poem.
- The poet is Yehuda Amichai (יהודה עמיחי) , https://en.wikipedia.org/wiki/Yehuda_Amichai a great modern poet (namely, from the period after Alterman's death). The poem is Friday night song שיר ליל שבת. Only one comment – “Friday night” is the evening before Sabbath, when orthodox families welcome it ceremoniously. Amichai grew up in an orthodox family, became secular, and many of his songs struggle with this past. This, and the precise references that are much clearer to Hebrew speakers made it hard for me to translate. The Hebrew lyrics are here https://shironet.mako.co.il/artist?type=lyrics&lang=1&prfid=713&wrkid=3001 and my favorite performance of it is here https://www.youtube.com/watch?v=f9pm1AsV9mE
Friday night song – Yehuda Amichai
Will you be here tonight, I’m waiting
The laundry has dried in the yard
And a war that is not ever ending
Is now thousands of miles apart
And the roads just keep returning
Like a horse that nobody rides
And the house’s doors are closing
On the good and the bad inside
And we knew very well that the border
Is close, and we shouldn’t be there
My father prayed thanking the Lord for
Creating the sky and earth
The sky and the earth got darker
As the light with darkness compete
And the deed, which the heavens have started
The two humans must now complete
