A new understanding

We had a very busy weekend! We drove up to Sharon on Friday afternoon. We had Sabbath dinner with Dina and family, along with friends of theirs with two of their three sons, one of whom is a good friend of Joshua’s. There was, as always, delicious food and much lively conversation and we did not get home until close to 10 pm, far past our bedtimes! Ella came over for Sabbath lunch and after we ate we worked on rebuilding one of the Lego kits. She is always a pleasure to have around.

Saturday night was the holiday of Purim. Many people dress in costumes and there is a gathering at synagogue to read the Purim story. I took a few pictures of the children. During the daytime there is a tradition to exchange gifts of food and to have a festive meal. We all pitched in on the cooking and gathered at Simmie and Ronen’s house.

I left more clothing than I usually do up in Sharon because when we go back this weekend I will likely not be returning to New York for a number of weeks, depending on when the new little person decides it is time to arrive. We have spent more hours than I care to admit walking through the various scenarios of when we will prepare our apartment for Passover and where we will be during the coming weeks. This is what happens when you put two scientists together: they plan for every possible outcome of an experiment! Barry will definitely be coming back to New York during the week to work, but I may just stay all the way through until after Passover. Babies just do not understand the need of old fogies to plan everything in advance.

I want to change gears for a bit and write about something that has been on my mind for the past few months. I began to refocus on this as I watched the local news in Boston over the past couple of days. The previous mayor of Boston, Thomas Menino, who recently retired after over 20 years in office, has been diagnosed with cancer. The reports were not clear but it appears there is involvement of multiple organs. Metastatic disease is always a challenge.

He apparently had his first of 5 planned cycles of chemotherapy at the Dana Farber Cancer Center within the last couple of days, and there he was on the news last evening, looking pretty good, surrounded by a crowd of supporters and well-wishers. He said a few words emphasizing that he feels confident he will beat this. I have heard this optimism a number of times from friends and acquaintances who are patients (or spouses or parents of patients) at the Dana Farber. It is clear that the staff there puts a good deal of energy into ensuring that their patients have a positive attitude. I know that many people believe that positive thinking can help ensure a better outcome. At the very least, it ensures the best quality of life for however long that is, and there would seem to be something positive in that.

Much as we felt we were in an outstanding institution, perhaps the very best place for the relatively rare tumor I had, I cannot really say the same for Memorial Sloan-Kettering Cancer Center. While I was extremely impressed with the intelligence, knowledge and skill of the staff, particularly with a rather taxing chemotherapy regimen that has to be quite carefully monitored, the emotional issues clearly took a distant second place. I have thought about this often over the past two years. It was only as I sat down to write this post that something dawned on me that may help to explain my observations.

While most chemotherapy these days is administered to outpatients, I spent the bulk of my time undergoing treatment as an inpatient at MSKCC, more than 50 days and nights on the neurooncology floor over a four month period. The high dose methotrexate regimen requires careful treatment and monitoring, because if left in the body too long it can cause significant damage. The administration of that little golden-colored bag takes a couple of hours, but washing it out of the body takes a Herculean effort over 4-5 days. During those seven cycles of high dose methotrexate I had many roommates and would sometimes see other patients walking in the hallway. I could not get around much because between the IV and the oxygen it was difficult just to get to the bathroom a few feet away, and with all those forced fluids I spent a lot of time navigating my way across those few feet.

Who are the cancer patients who have to be hospitalized? They are patients who need either diagnostic or treatment-related surgery, or they are patients who are extremely debilitated by their illness or whose regimens, like mine, can only be administered in an inpatient setting. Most of the patients and their families are what might be described as shell-shocked. Given so little energy for social niceties, they are not an especially friendly bunch, and no one is spending a lot of time worrying about their emotional needs when the medical needs are so acute. Looking back on it now, it was quite an accomplishment if the nurses could just keep the patients comfortable and functioning. The fact that I recall having some witty banter with the nurses is testimony to how much they wanted to provide support in the most challenging of circumstances (and to how much I wanted some sense of normalcy). But most of the patients who are there are in such horrendous condition that they may even be unable to bring up a smile; neither they nor their loved ones are in much of a joking mood.

As I come up on this second anniversary of my diagnosis, I need to begin to move away from thinking about this. It is hard because I am reminded multiple times a day, whether through my continued memory and processing difficulties or my constantly tingling feet. But I have many blessings for which I am grateful and a rich future to which I can look forward. The trick is to focus on this each and every day.

Love,

Rebecca