Gratitude

This one is quick and not polished, just an acknowledgment that there are many things in my life worthy of gratitude.

Always first, Chris. The pain I feel now reflects a deep love we shared. He helped me become a better person and will continue to guide my life. I am so thankful for him.

My children. While this is not an easy time for any of us, the kindness they frequently show me and each other is special. I love them and am enormously grateful that they arrived in my life when they did.

My employer. I'll forever appreciate this semester of flexibility. My boss made sure that I would have the time and space to care for my family without financial worry. I was offered total choice over how and when to come back to my position. I chose to return quite quickly but at 2/3 load; I'm only teaching labs. It's just enough to provide structure and helpful engagement with the work I love, but not so much that it takes over my life. In normal times, my job is often the first thing I think of when I wake up. Right now it just isn't and happily it doesn't have to be because of my reduced responsibility. I'm taking needed time to run, walk, think, read, write, and deal with unpleasant tasks. It is all helping immensely, and I don't worry about spending my time differently. It will be there for me in full force later. I'm grateful for their genuine concern for me and full trust that I will be able to give back in the future. 

Colleagues. I'm extremely fortunate that some of my colleagues are my closest friends. Others have reached out and these deepening connections are a treasure. A couple of opportunities at the College were thrown my way within the last couple of weeks, and the vote of confidence as well as prospects for the future have provided a much-needed lift. I've embraced the cliche to not make any big decisions now, but being encouraged to pursue ways to engage in new ways is safe and welcome.

Chris's colleagues. They let me know when things happen at the company that Chris would have been happy about. An article dedicated to his memory came out this week in arguably the most prestigious chemistry journal and it was sent to me. Chris would have loved to see the success of this particular work and there is no way I would have seen it without an email. Other efforts to remember him at the company have been shared with me. It all makes him feel close and it helps me know that Chris was special in so many ways, to so many people. I don't want to lose these people that were close to him, and they've let me know I won't.

The kindness of friends and family. I'll never be able to say all of the thanks I should, but all of the ways people have reached out helps. We have received 3 amazing meals this week, and this removed the responsibility of cooking. I wish I could say that I used the extra time to tidy up and clean the house, but instead I've continued my running, thinking, reading, and writing. Friends are asking me to coffee, for walks, arranging a night out, and checking in from all over. This helps. Colby and Davie family members continually check in. Nobody can fix this, but these gestures shore up my foundation. All of you help me keep going.

Embracing Life

When my fitness tracker buzzed me awake this morning, I was not in a good place. For starters, I had woken up several times in the night in small bursts of anxiety. This is not uncommon to happen once in a night. I usually go right back to sleep after convincing myself that I have not lost the car keys, I have not failed to pay a key bill, no tree has fallen on the house and yes, the furnace is running and no, I have not been dismissed from my job. Last night before going to bed I was a little more amped up than usual because the kids' school district had announced an early release for this afternoon due to the impending nasty snowstorm, and I was all abuzz about how to handle that. Would the College close early, too? Would I know in time to manage the kids arrival? I'll cancel class but is that doing my job? How many favors can I ask of friends before I'm a big problem to them? Why do I have to be the solo parent? My mind was not in a restful state to sleep well and I didn't. Each time I woke up I noticed that the TV was still on with the residue of my Homeland episode, a desolate blue screen lighting the wall. Several times I thought, I should really turn that off, but couldn't summon the energy. Or maybe it's something else, turning the TV off would remove any perception of not being alone in my bedroom. Regardless of motivation or lack thereof, I left it on to further disrupt my sleep.

When I did wake to face the day, I opened my eyes to see the empty side of the bed and was not happy to find that Chris was still not there. Surprise, he's still dead, this nightmare has no end. As I berated myself for the deep-seated waiting feeling in my heart, the permanence of the situation descended like the snowstorm that was closing in. Grumpy does not do justice to what I felt; I did not want to "do" life today and I was downright glowering about needing to. While I wasn't able to view it this way in the moment, the blessing of having children now is that there is no choice but to get up, fix breakfasts, write a note for a dismissal change, walk to the bus stop. Reminiscent of a father from an opposing baseball team excitedly encouraging his son in the batter's box to "DO SOMETHING!" my children's benevolent demands propelled me to take a swing at life, saving me from a morning of wallowing.

I thought of Chris, who faced an uncertain, daunting future for so many years but kept going. He showed up for us every single day. Not once did he wallow though he surely must have been tempted. Chris did not have a bad attitude even when the going was at its toughest. When life threw only crappy pitches in the dirt and at his head, he took a million swings because Chris just wanted a chance to play. Leaving the analogy behind, Chris embraced life at every step. I honestly don't know how he did it. Chris faced his mortality head on and made the most of every day he had left. Here are some of the ways that Chris lived fully:

After surgery and radiation, Chris rehabbed his way back from not being able to come up with the terms "parking meter" and "pyramid" to publishing several highly regarded journal articles, organizing conferences, and leading scientific collaborations. 

After being told he would only live 10-20 more years, Chris decided that he would not give up on building our family as we had envisioned. After taking time to consider the consequences, he fully embraced the idea of a second baby. Then, he doted on her and reveled in the joy she brought to our family. As a kind neighbor said, Chris said yes to life in a big way in this regard.

There was a particularly awful day in the summer of 2017. Chris's clinical trial doctor popped her head in the exam room to share an exciting result that his tumor had shrunk by 30%. He was happy and excited, texting me the unexpected good news, only to be crushed 20 minutes later when she came back to say no, sorry, there was a mistake in the software measurements and instead the tumor had actually grown so much he was no longer eligible for the clinical trial. Once home, instead of vibrating with rage as I was over the preposterous false hope given to him, Chris allowed himself to cry on the porch for a few minutes. Then, he wanted the whole family to take a dip in the backyard pool. He shot baskets and tossed inflatable rings with the kids all the while allowing the sun to shine on his face. Chris always showed up for us, even on this and several other bad news days.  

During a 2017 trip to northern Minnesota to celebrate my parents' 50th wedding anniversary, Chris enjoyed a couple of long hikes even while in the thick of treatment, 7 and 9 miles if I remember. In 2018, his balance was compromised and walking became much more difficult. Long hilly hikes were not really possible, but Chris enjoyed what was - showing his kids a flatter stretch of the Appalachian trail in Vermont, stops at amazing waterfalls, walks on local conservation land, and simple short walks just on our street. Chris soaked it all up. He did not complain about what was lost, he went after what was possible and he enjoyed it, with us.

Even this last Christmas Eve in the heart of the most difficult days of his life, Chris was able to rally. Despite his arm not working and needing a wheelchair, Chris talked with every one of his family members, laughed during the gift swap, enjoyed good food. It was the last truly good night and he made the most of it. 

There are so many ways that Chris embraced life. Some truly incredible like expanding the family, but many more that I was hardly aware of when they happened. He quietly did what he could to make the most of every single day. It puts me to shame. He would never want me to feel bad, but I do. Quite a lot. This time is really not much fun for me and I don't feel like I'm embracing it; I'm reluctantly enduring it when he would have jumped at the chance to wake up today and hit start on the coffee. 

Chris would have understood that just getting through these days should be considered success in this situation. I know if he were here, Chris would encourage me to see it that way and he would tell me that enduring is acceptable right now. I hope he would even be a little bit proud of us that we cleared the driveway of snow before the rain set in to weigh it down, that I started the snowblower up and dug out the mailbox from the crummy job the plow did, and that I smiled watching our daughter play that she was a lion prowling in the snow (her word choice, spelled P-R-O-W-L). Chris was always so generous and kind, I'm quite sure he would tell me that my effort today was good enough to count as embracing life.

I'll keep going. When I feel like I can't, I'll try to remember the many ways he did. That's the best I can do right now. I miss him so much.

Harvard Museum of Natural History

Yesterday afternoon the kids and I met up with some of their cousins and aunts at the Harvard Museum of Natural History. This was the place that Chris and I visited on our first date, November 11, 2001. So many years have passed that my memories of our first date are not sharp, only warmly happy. I wasn't concerned that being at the museum would be any more difficult or sad than doing anything else without Chris now, and it wasn't. I'm really glad we went.

As we approached Cambridge, I could not even remember what the museum building looked like or exactly where it was on the Harvard campus. Once we entered the museum it felt familiar and as we climbed the steps to the displays, the stairway and old glass windows came back to me. At the top of the stairs visitors must choose to see exhibits to the left or right, either way passing through a gift shop. This I remembered. As we chose an exhibit and started wandering, I kept trying to remember doing this with Chris. At first there wasn't much that I recognized, but once we started seeing glass cases of fossils, bones, animals, and birds of all kinds I did have a clear memory. Chris and I definitely spent time looking at this section, oh yes, we saw those large cats and bears, the pinwheel of brightly colored beetles, impossibly tiny hummingbirds, giant skeletons. The museum seemed unchanged by time. 

When I'm out in public now I find myself paying more attention to other people since I don't have my person to be focused on anymore. I'm not looking for Chris but I'm noting the many, many people who are not him and clearly did not meet his fate. At the museum there were lots of young families for an "I Love Science" event, families with two or three kids, some asleep in strollers. Even though we were long through with that stage, this particular demographic pokes sharply at a place inside me and elicits unkind thoughts - I bet you won't lose the dad of the family and you're not even aware that you could. Probably not such a healthy or helpful line of thinking... I turned my attention away and looked for other not-Chris people. I saw a 50-something, bespectacled, lively father with some affable twenty-something young adults, presumably his children. Ugh. Then I saw several groups of older adults enjoying the museum and each other. Can't even imagine that kind of future... Then we stopped at a table staffed by graduate students who showed us carnivorous plants. Now this is what I want, give me the dark stuff, plants eating bugs are right up my alley. I was distracted by the impressive fleshy bulbous traps containing strong acid, and more so by the exuberance of the young grad student using her phone light to show us the liquid in the plant. This stirred some feeling I couldn't quite identify.

Then I saw them. Young couples, probably grad students, and several of them at that. Some quiet, others talking, some holding hands, all in seemingly private worlds oblivious to the other visitors. There was that feeling again - something like nostalgia. A longing for their young adulthood. It was seeing a different time in my life with the perspective of middle age - I was once a hopeful 24-year old just beginning to find myself and my way the last time I was at this museum.

As we entered the Earth and Planetary Science room, the most vivid memory came back to me. This place, now this I remember well. The museum was about to close and Chris and I had not been in this room long. We were dazzled by the colors, crystals, and the promise of a new relationship just barely underway. Want to grab dinner in Harvard Square? Sure. It was dark outside and the display cases of gems seemed to shine brightly in contrast. I remember similarly shining with happiness. Here was a flash of flirtation, there the first flutter of falling in love, under it all hummed a current of hope that something was at the very beginning of its existence. I've had a good time - would you want to have coffee? Sounds good.

I do know Chris was happy in those early days, too. I asked him out but he chose me back. Separately, we both went back to the museum gift shop to find a first Christmas gift for the other and had a laugh over that when we realized it. I picked out an ornament of a wolf for him, he chose a soap for me that looked like a crystal from the gem room. The ornament is packed away with holiday decorations in the attic, the soap still wrapped in plastic hidden away in a cabinet, too precious to actually use. How strange that these mementos survived him. The thought never crossed my mind that could be possible, and I doubt it did his.

I wanted to spend most of my time yesterday in the room full of rocks. It prompted me to reach for other memories from my earliest days with Chris. As I roamed the room examining crystals in all kinds of forms from the weird to the wondrous, I revisited some of those sweet days from so many years ago. Getting to know each other, times with mutual friends, becoming serious, deciding to get married. This particular room seemed to give me relief from agonizing over the end and opened up access to other memories that I had been having difficulty in finding.

The ephemeral nature of time became painfully clear as I wandered through the past. One moment gives way to the next, which gives way to the next, and on and on and on. Time is truly like a river, you can never stop it or go back. Where are those first fleeting moments of "us" now? What significance do they hold now that one of us is dead? I thought of Robert Frost's famous poem:

Nature's first green is gold, her hardest hue to hold. Her early leaf's a flower; but only so an hour. Then leaf subsides to leaf. So Eden sank to grief, so dawn goes down to day. Nothing gold can stay.

Perhaps there is no answer but the fact that moments cannot last, no matter how beautiful. Even if Chris was here now, those early times would still feel long gone. They had to pass otherwise we would not have gotten to other good stages and unforgettable experiences together. Our perfect dawn gave way to a cloudless blue sky day with a stunning sunset over the ocean. One not possible without the other before it.

Something happened in that gem room of the museum yesterday. I smiled that it happened. I honestly smiled that it all happened at the same time that I cried over it all being over. Without even realizing it came from me, I heard a whisper of a new unspoken refrain among the cacophony of the others:

Thank you. Thank you for loving me. Thank you.  

The Bright Hour and other books

After reading Paul Kalanithi's memoir When Breath Becomes Air (twice), I searched for other books written by people in similar situations. Come to think of it, before Kalanithi's book I read What Remains, by Carole Radziwill. Some might read this book for insight on the Kennedy family and its tragedies, but I was captivated by Radziwill's account of her 5-year marriage to Anthony Radziwill, a cousin of John F. Kennedy, Jr. Anthony's terminal cancer encompassed their entire marriage and he died at age 40. Carole Radziwill wrote bravely about her experience as a care partner in a terribly difficult situation. I've since checked this book out two or three more times. I picked it up again while Chris was in the hospice house. Her honesty took my breath away; I found a unique resonance in her words.

Of course there is Nora McInerny's on point memoir It's Okay to Laugh (Crying is Cool, Too). In it, she describes the brain cancer journey she accompanied her husband on. She has an outstanding podcast, Terrible Thanks for Asking, that I discovered on NPR when she started it. Now, I listen to every new episode shortly after it drops. Might be a bit dark for some, but I'm in a place where I crave the stories of people facing extreme, unexpected difficulties. These stories are like oxygen for me. Last spring I used my library skills to secure Nora's book via interlibrary loan and devoured it in a few hours. I laughed, cried, feared for the future, and felt understood while my children marveled over the book jacket. "This book is for people who have been through some $h*t." MOM what are you reading?!?! A kind, anonymous person just sent me my own copy. I can't wait to read it again. Thank you! Nora has a new book that I'm not quite ready for, No Happy Endings, but I will get to it.

For a week or two this fall I spent commutes listening to Sheryl Sandberg's Option B. It was probably too soon; I wasn't ready for fully contemplating after but I couldn't stop myself... I needed some sign that the kids and I would survive, and I found reassurance from Sheryl. Now that I am in the after, I remember some of the nuggets from her book and am putting them into practice.

After that, I listened to Being Mortal by Atul Gawande as a I drove to and from work. Wow. Now that Chris has died, I think about this book and I hope that Chris felt our decisions at the end of his life reflected what was important to him. 

Somehow I learned about The Bright Hour, by Nina Riggs. Our library had it as an e-book and I added my name to the long wait list, then forgot about it. In mid-December I got a notification that I had a new e-loan. Late at night after Chris was asleep I read this book, my iPhone a tiny light in the darkness getting splashed with tears. Oh my. This memoir is everything the reviews say - gorgeous, unforgettable, life-changing. Nina was diagnosed with breast cancer at 38 which never responded well to treatment and quickly became metastatic; she had a wonderful husband and two young sons. Her book is organized by stages of her cancer. Nina wrote about living with cancer while accepting her fate, trying to wind things down and lamenting over leaving her sons. She also wrote about the concurrent loss of her mother.

Nina's writing is truly exquisite. She probed her illness and examined her reactions with an honest clarity. Her book came to me at a difficult time but it was the right time. As I turned to the part titled Stage 4, it was well past midnight. I knew that Nina died and the memoir came out posthumously, but I was now invested in this book and I could not accept that her brilliant, beautiful voice was actually silenced. Suddenly I could not read through my tears so I got up and took my phone out to the living room. I made a nest on the couch and in the glow of the Christmas tree, I cried harder than I can remember. I knew that Chris would die soon and I could hardly believe it. It is just so unfathomable that vibrant, young parents die. Bad things happen to really good people who have so much more to offer the world.

Once I could read again, Nina's words resonated deeply as she grappled with dying:

"I want all of it - all the things to do with living - and I want them to keep feeling messy and confusing and even sometimes boring. The carpool line and the backpacks and light that fills the room in the building where I wait while the kids take piano lessons. Dr. Cavanaugh sitting on my bedside looking me in the eyes and admitting she's scared. The sound of my extended family laughing downstairs. My chemo hair growing in suddenly in thick, wild chunks." 

Chris, too, wanted all the things. He packed lunches and checked backpacks for snacks, he wanted to see more baseball games and hear more piano lessons. He wanted more laughs with family and, especially, Christmases. He had come to terms with his disabilities and didn't let them get in the way of interacting with his important people. He just wanted the fundamentals, the things that a healthy person might not even think would be important at the end of life.

Chris and I talked extensively, deeply, and earnestly over the last difficult year. We had left nothing unsaid, tackled the important and difficult conversations, and spent a great deal of precious, quality time together. Chris knew it would be hard, but I sensed that he was at peace about leaving me because there was no question in his mind that I knew him completely, we loved each other fully, and I would know these things, too. The kids, now they were different for him. Chris struggled mightily with how to leave them. They are so young and just beginning to come into their own selves. Chris saw them grow and change  during that last difficult year, and he was painfully aware that they would continue evolving long after he died. He wished he would be able to come back and see how they turned out, to know them as adults. Chris worried that they would not know him, that they would miss out on many things by not having a dad around, and he worried that they would not know how much he loved them and how much they meant to him. 

Nina Riggs struggled with leaving her sons, too. Like Chris, she found it within herself to be able to let go of just about everything else, including her husband, but could not consider her children in the same way. She wrote: 

"Their very existence is the one dark piece I cannot get right within all this. I can let go of a lot of things: plans, friends, career goals, places in the world I want to see, maybe even the love of my life. But I cannot figure out how to let go of mothering them."

At the hospice house, Chris asked for the kids frequently and each day was focused around when they would come to visit. He told the kids that they were the hardest to say goodbye to. On the last visit, he could not really speak but he touched their faces tenderly. He loved them so much. It was beyond wrenching for me to watch...

Now that he's gone, I can hardly believe that everything happened. It's dumbfounding. Chris actually did die, he did not beat the abysmal statistics for GBM. We never thought he would and we never carried false hope, but still, at least I could not actually imagine how it would be when he died and then was gone. Why do I have a hard time understanding this? It bothers me a lot that somehow I felt surprised by Chris's death. I found Nina Riggs' memoir so helpful. She seemed to struggle with the incredulity of the trajectory of her illness, too. At least two times she quoted a passage written by Michel de Montaigne, a French philosopher who was never afraid to ponder death:

"Did you think you would never reach the point toward which you were constantly heading?"

Apparently this thought process has been around for centuries. I now concede that it is part of human nature to grapple with dying. Every one of us must walk our own path toward acceptance of the mortality of ourselves and the ones we love.

I've been going to the library a lot. It's partly to feed my obsession with the show Homeland and continue my nightly ritual of drowning out the thoughts in my head with an episode or two of the spy thriller (not on Netflix, yay libraries and DVD collections). The other night I brought my laptop during the kids' basketball practice and wrote for an hour. But most often I seek out familiar shelves, finding these books I mentioned and paging through them to find the most resonant passages. It's a need that is deep, I truly need to read those resonant lines to feel sane. I brought The Bright Hour home in hard copy and read it through again, crying often, wanting more after the last sentence of the afterword by Nina's husband. It's a book I will purchase and underline, highlight, put sticky notes in, and recommend to anyone. Read this book. Be astonished. As Nina did so well, love your days - all of them - the best you can.

Unspoken and Spoken

There are some things that shouldn't be said to someone with a terminal illness. There is one thing in particular that frequently went through my head over the last years. It would have been totally worthless to Chris and detrimental to his ability to cope, not to mention grossly insensitive. I voiced it to Chris just one time in the first week after his original diagnosis; then it was an involuntary reaction and I immediately realized my mistake.

Don't leave me.

"Don't leave me" implies there was some kind of choice in the matter for Chris and, worse, made it about me instead of him. I knew that, but I could not help it. Those three words became my unspoken, selfish plea.

Focal seizure: don't leave me.

Difficulty finding the right words: don't leave me.

The tumor is back: don't leave me.

The clinical trial failed: don't leave me.

I think I'm sleeping more: don't leave me.

Can't throw a baseball: don't leave me.

Neuro-ICU: don't leave me.

Unable to read: don't leave me.

Hang up and call 911: don't leave me.

Did your husband want to be intubated: don't leave me.

A wheelchair is needed: don't leave me.

No more treatment options: DON'T LEAVE ME.

Ambulance ride to the hospice house: DON'T. LEAVE. ME.

The unspeakable end: DON'T. LEAVE. ME.

The thing I did say to Chris whenever I could was "I love you." As things careened toward the end, there was nothing else that made sense and there was little else I could do or say. Most people would say it's the most important sentiment, but I said it so much that sometimes it felt desperate and empty. I hope it didn't ring hollow to Chris.

It's getting worse: I am sorry. I love you. 

I don't want to keep getting worse: I wish I could stop it. I love you. 

I'm worried about just disappearing: I will miss you forever. I love you. 

I want to be there for the kids: They will know you wanted to be there. I love you. 

The kids won't know me: Everyone will make sure they know you. I love you. 

Betsy, Nathan, Julia: We love you. I love you.

.....  : I love you. You did so good. You are so good. I love you. I love you.

And now, Chris is actually gone. I prefer "gone" to "dead" for some reason, but there's no avoiding the latter. It's just semantics, anyway. He's not here to hear the things I have to say anymore so I leave them mostly unsaid. My silent refrains are almost as deafening as his absence is profound. 

I miss you

I love you

I am sorry

How did you get through that

You were amazing

What am I supposed to do without you

I miss you I MISS YOU I MISS YOU

I love you I LOVE YOU I LOVE YOU

Thoughts on Denial

Chris and I talked extensively about his brain tumor experience over the years and particularly a lot in the last year. During the better years post diagnosis, he often said it felt surreal. I agreed. From about 2009-2016, life was relatively normal when we weren't in our heads too much. Brain tumor? What? But we are playing with young children, working, enjoying time together. How could there be a brain tumor? We both went through times of being deeply sad about the future so I don't think it was denial, but it definitely was surreal. Maybe we were able to mostly compartmentalize the tumor and live our life.

Once the tumor came back, everything changed medically. It was no longer so surreal, but Chris was still himself. In 2017, he participated in a clinical trial that required a lot of hospital time, but he worked full time even from the hospital. Once the clinical trial failed (a whole post of its own to process that debacle...), things were less surreal. Chris switched to the standard therapy of Temodar. That went relatively well for a few months until it suddenly didn't, at the very end of 2017 when he had a grand mal seizure and then the MRI showed the awful growth/infiltration. These all signified being steps away from a surreal situation. But still, it didn't seem like it could be happening. Chris was his wonderful, loving, capable self!

Were we in denial? No, I don't think so. We both lost a lot of sleep over the recurrence and we both shed a lot of tears at different times. Chris was deeply immersed in the science of his disease and highly educated about genetic mutations, treatments, and outcomes. He learned in the summer of 2017 that the tumor's MGMT promoter was not methylated, and that was not good prognostic news. We cried over that in the bathroom, away from the kids. If we were in denial, that would not have happened, right? RIGHT??? There's no way we were in denial... It was very important to us that we were both understanding and accepting of the situation. We continued to live, because what else do you do? Perhaps we were able to do so by compartmentalizing the problems to a great degree.

And yet, it was still shocking as the medical news got worse. If we weren't in denial, why were we surprised that the tumor had spread to a new part of the brain on 2/5/18? Wouldn't that make sense to fully accepting, informed people? It just didn't add up with Chris's abilities. He was so "with it" and capable. It did not seem possible. Things continued to get worse and worse, with extended focal seizure activity, severely impaired vision, reading and writing problems, language problems... But Chris was still himself; he was fully there intellectually and emotionally. Once he was officially diagnosed with GBM, we knew time was short. But we still could not comprehend it fully. Or, I couldn't. He could to a greater extent. But we still marveled together over the insanity of the situation and the disparate juxtaposition of his status as we perceived it and the prognosis. We spent hours discussing this. We accepted it all, or so we thought. We needed to believe that we were fully accepting of the situation because we understood it as scientists. We did not think we were in denial.

Even at the end, the most difficult part of the experience when Chris was on home hospice and then moved to the facility, there was an element of disbelief for me. I lived it all with Chris and the challenges were truly insane, yet he was still "there" underneath them. The love of my life was going to die and I knew it, we talked about it, we planned for it, but it didn't feel real when he was still living. The very last couple of days, when Chris didn't have the energy to speak, I knew in my heart he would be dying soon. On his last day I was home briefly and I packed for a couple of days at the hospice house. I even texted a person who should be notified when Chris died to let her know it would be soon, but my mind could not fully comprehend that it would be within hours. Looking back it seems so obvious and idiotic. Was it denial? 

There's not going to be one answer to any of my questions. To get through 11 years of terminal illness, I think the patient and key support people have to balance acceptance with an ability to compartmentalize. So what if it feels surreal and that bleeds over into the territory of denial? There's no shame in surviving and, actually, wouldn't anyone want to enjoy living while he could?

We didn't do anything wrong. I know it in my heart. We did the best we could in a totally crummy situation. I also know that nothing out there could have prevented Chris's death. That's the truth of the science right now. And finally, no amount of time would have felt like enough. The great mystery of life is that nobody knows how much time she's got. You might as well make the most of it.

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.