Reconstructing the timeline

Tomorrow is the second anniversary of my diagnosis. I used to be very good with dates, but this is one of the many skills that have greatly diminished since this odyssey began. I did not begin “bloging” until a couple of months after my diagnosis, so nowhere do I have a full written account of those early days. There have been many memoirs published recently in which people recount such experiences in amazing detail. I wonder how much they really remember and how much they embellish when the memories are vague. In any case, I remember at some point trying to at least reconstruct a timeline. I got as far as scribbling some dates on a piece of paper which I believe I left sitting in the front of the scrapbook I received as a gift and kept during the first year. Because we are in Sharon, I do not have that piece of paper, but I want to take a stab at it, to mention some things that I have never included on the blog.

February 2012

We took our annual “escape from winter” on St. John. I remember being extremely nervous and edgy during that trip. In retrospect, I had not been feeling well for a few weeks at the time we went on vacation; I had already been having significant trouble reading, even when increasing the font size. I can still recall trying to review clinical trial protocols and study reports, knowing I was not doing my usual thorough (aka nitpicking) job of it. I even recall wondering if anyone had noticed this. I do not remember discussing my concerns with anyone, including Barry. Yet he remembers that I did, and has told me that at one point he suggested that perhaps I had a brain tumor. I guess we both should have listened to him!

Thursday 8 March 2012

It was Purim, and Barry and the children threw me a big party to celebrate my 60th birthday on March 7th. I remember the party as an almost out-of-body experience. I felt as if I was watching the party without actually being a participant in it.

With my vague symptoms, I spent much of my time over the subsequent weeks going to all of my doctors: internist, pulmonologist, a psychiatrist I had seen on and off over the years of dealing with the challenges of pulmonary problems. It was this latter doctor who referred me to a neurologist. Before my first visit, I was scheduled for an MRI.

Thursday 29 March

I had my first MRI and then went to have some psychometric testing (with Heidi and Anna, although I barely remembered them when we met again some months later). At about 10 pm we finally met with the neurologist, Dr. Goldstein, and saw the results; I was immediately admitted to Mount Sinai Hospital after that.

Here are my memories of that day:

1. Barry nearly fainted when he saw the MRI. One of the starkest images that will always be with me was trying to catch him as he became faint. He may not be a physician but that huge white area was obviously not supposed to be there!
2. Dr. Goldstein was as stunned by the results as we were: he wheeled me to an inpatient room himself!
3. I tried to no avail to convince Dr. Goldstein that I could not be hospitalized because Passover was only a few days away. I remember a similar discussion with my doctors back in late March of 1977 as I lay in Strong Memorial Hospital in Rochester in a valiant attempt to control the severe pre-eclampsia that eventually resulted in Simmie’s birth on the second day of Passover at only 28 weeks gestation.

Monday 02 April

Because the mass was large and diffuse, making surgical removal impossible, the next step was to determine a more specific diagnosis, which required a biopsy. I had surgery to obtain the sample.

I have a faint memory of meeting Dr. Germano, the neurosurgeon who performed the biopsy. That is about all I remember of that day.

Wednesday 04 April

It was our daughter Simmie’s birthday, and we learned the diagnosis: primary central nervous system lymphoma (PCNSL; diffuse large B cell. It would be many months before I could say or write this diagnosis without my notes. Although the words CNS and lymphoma were familiar, I simply could not internalize the idea of their being used for me.

Thursday 05 April

A series of tests were done over the next few days (various scans, lumbar puncture, etc.) to determine if the cancer was confined to my brain. Fortunately all were negative. Meanwhile, I was receiving steroids to help decrease the swelling in my brain. I have a faint recollection of being taken for physical (or perhaps it was occupational) therapy during this period.

I have little specific recollection of this period, but I do remember the LP. From working as a volunteer in hospitals years ago, I was extremely frightened that the LP would be excruciatingly painful and that if I moved I could end up paralyzed. It turned out not to be that bad. I only know about some of the other tests from the hospital bills in our files.

Friday 06 April

Passover began that evening.

The only thing I remember is that I did know it was Passover. Simmie and Dina had come down to New York to see me for a couple of days just before the holiday and made sure the house was ready in case I would be able to come home during that week. Unfortunately, this was not meant to be.

Monday 09 April

I was transferred to Memorial Sloan-Kettering Cancer Center.

I do not recall being actively involved in any of the discussions around this; I do not believe I could have made any real contribution. So it was left entirely in Barry’s hands, and it was a difficult decision. As a Professor at Mount Sinai for over twenty years, he knew so many people there and felt confident that I would receive plenty of attention. He had taught residents at MSKCC for some years but was simply not as connected there as at Mount Sinai. In the end, the weight of opinion was very strongly in favor of Memorial, where the experience with this rare cancer was much more extensive. All I can remember is that Simmie was with us and they arranged a car service to drive us over there, crazy as that sounds! I cannot recall what I was wearing: did I put on clothes or was I just in a hospital gown covered in blankets?

Thursday 12 April

After a few days of some additional tests, I received my first dose of rituximab.

From what I recall, this did not go well, I developed nausea and chills and they had to slow it down. But subsequent infusions went smoothly.

Friday 13 April

I received my first cycle of chemotherapy

Friday the 13! Whose idea was that? At the time I had no idea what day or date it was.

Friday 27 April

I received my second cycle of chemotherapy, but there was a delay on some of the components because my veins had collapsed. A few days later, before leaving the hospital, I had the port put in.

This whole experience was extremely difficult for us. If anyone had spoken with me about a port prior to the start of chemotherapy, I would not have understood or absorbed it. Barry was certain that he was not asked. Although he knows a good deal about the science, these clinical issues are foreign to him. So this whole experience was upsetting to us both.

Friday 11 May

I received the Cycle 3 dose of methotrexate. While in the hospital, I used Barry’s laptop to begin composing what would be the first post on Caring Bridge.

Monday 14 May

I posted for the first time on Caring Bridge

If you are still reading this…well, I’m amazed! It really is not all that interesting. But I needed to do this, to at least gather some sketchy details before I forget them entirely. And it has been at least a bit therapeutic. Nearly every day I am frustrated – and try very hard not to allow this to turn to anger – by all the things I still cannot do. But looking back over these two years is an opportunity to focus on the things that I can do now that I could not do before. Sounds a bit like Rabbi Avi Weiss, who often reminds us “never to let the things we cannot do stop us from doing the things we can.”

I hope I am up to the task with this sweet new little person in our lives. She will receive her name tomorrow in synagogue and I will send it along.

Be well, all.

Love,

Rebecca