Identifying the Beginning of the End

Yesterday was a day that was kind of a mixed bag; it marked four weeks since Chris died. It started off well enough with an early morning run. I haven't done a real early run in a long time and I had forgotten the benefits of doing so - I had a lot of energy in the morning! I powered through all of my grading for the week and then my afternoon lab went really well. Total win, it almost felt "normal" except I found myself thinking a lot in the background, under the surface. One of my current problems is getting stuck on certain thoughts and not being able to move on even when I know it is not helpful. By the end of the day I was tired as is typical of my early run days. I got all wrapped up in focusing on the thought of the day as well as finding Chris's favorite ice cream unopened in the freezer which turned the waterworks back on. Chris and I always used to say to each other that tiredness makes everything worse. It's still true. Nights are hard.

So yesterday (2/5) at work I became obsessed with finding out whether February 4th or 5th of last year was a major milestone day for Chris's tumor progression. For some time, I had been "sure" that Feb 1st was the MRI and Feb 4th was a horrible oncologist appointment, but once those dates rolled around this year I realized that 2/4 would have been a Sunday, so probably it was the 5th. During the work day I searched through my email calendar trying to see when his appointments were around that time. Nothing in my work calendar showed up. Once I got home, the first thing I did was remove the family photo calendar from the wall and page back to the first month of it, which was February 2018.* I think I still had my work bags hooked over my shoulder. As I found the right month, I passed pages with many appointments written in Chris's handwriting, not to mention sticky notes for chemo cycles and medication refill reminders. Finally I found it, ah yes, the MRI was Feb 2nd and the oncologist appointment on Monday February 5th. Seeing that tiny notation in the calendar box for 2/5, I instantly said to myself, so February 5th was the beginning of the end. Also, I wondered how many other things I have been so sure of only to be wrong about... (I don't want to know the answer to that.)

Now I know for certain that February 5th was the terrible day that we heard that not only had Chris's tumor been growing while he was on the standard chemo, but also that it had spread to a second area of the brain. It might sound naive, but we were prepared to hear only the part about the tumor growing and not the part about the new area of the brain. Then there was the added little nugget of information that the new area of concern was inoperable... Another surgery was suggested for biopsy purposes to figure out what course of treatment could be pursued. Basically the team needed to know if the tumor was a higher grade, the dreaded GBM (grade 4) or if it was still grade 3 because treatment options are different for the different grades. There would likely be more options if the tumor was GBM. We were absolutely stunned. We knew as well as the oncologist that the MRI report probably meant the tumor was now GBM and anyhow, regardless of grade and treatment options, tumor infiltrating new areas would be nothing but trouble. There would be no good outcome and time was getting frighteningly short now.

What do you do after that kind of news? It was hard to breathe and I couldn't drive home right away. Chris and I went down a floor to the MGH Yawkey Healing Garden. It's a lovely space that looks out over Boston, the Charles River, and Cambridge. We sat in stunned silence. Tears came, but we didn't know what to say. It was a major, major turning point and we knew it. Eventually I felt calm enough to drive. There wasn't much choice with rush hour setting in and children to pick up on time despite our shock. We made our way down to the car and on with life.

The medical journey did indeed intensify after that. Chris had his third surgery in late February, the pathology did come back showing GBM status. The tumor caused serious, sudden problems in March which resulted in abandoning a clinical trial plan in favor of an emergency course of radiation. More problems followed and very abruptly, Chris never worked again. (Another rough time from yesterday was finding several of his work notebooks in a pile of stuff I had to go through. I couldn't help but open the most recent one and see his regular professional notes and his classic to-do lists, complete with little empty boxes to check off, from dates in March. Then, nothing except one page of medical notes. A promising professional life cut off, just like that.)

When I list that all out, it does seem like that February 5th appointment was the beginning of the end. But, it is not being true to the story to put it that way. I could also choose Dec 29, 2017 as the beginning of the end when Chris had a grand mal seizure just weeks after a stable MRI. That didn't bode well and we knew it, deep down we knew it, which is why we expected some form of bad news on February 5th in the first place. It was probably approximately when that tumor started growing rapidly again and infiltrating new real estate. But before that, it could have been July 2017 when we learned a clinical trial failed and Chris had to switch to a standard chemo. Why stop there? Why not consider the time in early 2017 when we learned the tumor recurred for the first time? Or, when there were a couple of ominous partial seizures in 2016 probably signaling recurrence? Honestly, when Chris was diagnosed on 12/31/07 with likely low grade glioma, we became aware of the reality of his early death. Was that the beginning of the end?

No, none of these feel right. There was so much life and good family time between all of those horrible milestones... It is helpful to learn from others who have gone before us. In that vein, Chris and I both read When Breath Becomes Air, by Dr. Paul Kalanithi. We actually listened to the audio book in parallel in 2018. What an amazing, truly life-changing memoir for us. It is so relevant to Chris's situation, and he found a great deal of resonance in the book. Chris admired the author and wished that he could also leave something of such quality as a legacy. Dr. Kalanithi was a highly educated, highly successful neurosurgeon diagnosed with terminal lung cancer in his 30s. He thoughtfully wrote about being put on a different track from his peers, not by choice. Kalanithi wove anecdotes of his patients into his own cancer experience, many of them brain tumor patients, so the whole thing was sometimes painfully spot on with what Chris experienced. Kalanithi also pondered the phases of his cancer and he wondered if his first recurrence was the beginning of the end. His oncologist said no, absolutely not, recurrence was just the end of the beginning. Yes, this makes so much sense. Recurrence is bad news, but there are still many treatment options to pursue. It signals a flurry or even fury of activity, but instantaneous demise is not typical. The beginning of the end, now that is a different phase altogether. That's when all of the new options have failed and there is nothing left to pursue.

So maybe the beginning of the real end for us was Nov 30, 2018 when Chris went to the ER after multiple seizures, almost died, and was pulled off Avastin. He was discharged on Dec 4th on home hospice services, unable to walk. Hospice means the end is nigh, right? So maybe it was really 11/30/18. Perhaps even more fitting, though, was  December 31, 2018, the awful day when Chris left our home to go to the hospice house for the last days of his life. The beginning of the absolute end.

Why am I fixated on identifying the beginning of the end? Does it even matter? There are far more weighty questions without answers... How could the end have possibly come? How is he actually gone???

A kind friend who saw her husband through a terminal illness and his death reassured me that reviewing the illness is common in this situation, and she shared that she has accepted that it is simply part of her experience. She encouraged me that there are fewer regrets over time and more honoring of the journey. This was a true gift and I'm thankful for her wisdom. It makes me feel a bit less crazy as my mind ponders dates and sifts through milestones, over and over and over, looking for order or a reason or something I can't even name. I can accept that my new life is going to be crazy for a long time, but I myself cannot go crazy. Two people are depending on me holding it together.

The other thing that is encouraging is that Chris did a lot of reviewing of his illness and he certainly did not go crazy. I see it in various notebooks and documents he left behind and I remember our many conversations spent reliving the major events. (Something like the brain tumor's greatest hits? Like, hits as in literal punches.) Part of audio recording his story was a strong need to go over everything that happened, and he wanted to get the dates and years correct.

I think I now understand what "processing" means. The brain seeks to make sense of events that are painful, and it doesn't always come up with a nice neat answer. Mine is very, very busy with processing these days.

*We make photo calendars with pictures from the previous year but could not get them done in time for January due to the holidays, so decided to do Feb-Jan a few years back... And yes, that means it just ran out so I did have to make a new one or buy a regular calendar. The kids wanted a photo calendar so it was a different struggle going through all of the photos from 2018, again, and deciding what to put on the new calendar. It wasn't easy, but it got ordered.