life is pain, highness

Ugh. What a week. It turns out that tapering off steroids comes with more negative side effects than I’d realized and they’ve all been hitting hard. I’ve gone from feeling the best I had in a long time back to feeling pretty dang awful over the span of just a few weeks. Physically, we’re talking nausea, fatigue, diarrhea, etc. All the fun stuff those of us with cancer just love dealing with time and again. Also, my body’s cortisol levels are so out of whack from the long-term use of corticosteroids that my brain isn’t producing the hormones needed to regulate my emotions. So instead of being a fairly stable, rational human, I’m a weepy mess. Not great timing for a series of important conversations with members of my care team and family about next steps in my treatment and end-of-life planning.

On top of all that, my non-functioning left arm is hanging uselessly at my side, causing significant neck and shoulder pain. This has started to make any car ride longer than about 10 minutes (and, really, any position in or out of the car) pretty unbearable.

We are workshopping solutions to all these issues, including switching to a new steroid that will allow me to continue the taper slowly over the next several weeks, hopefully accompanied by a tapering of the side effects as well. In the meantime, I’ve decided to take a break from the Avastin and immunotherapy, to give my body a chance to stabilize. It’s unclear at this point whether I’ll choose to restart one or both of these therapies in the coming weeks. I’ve been saying for a long time now that my goal is to prioritize quality of life over quantity as I near the end, and I’m doing the best I can to put that stated goal into action. I hope I can get back to a place of better quality, but I also acknowledge that might not be possible at this stage. Without any drugs to hold the swelling and tumor progression at bay, I’m sure there’s a whole raft of other symptoms waiting for me just around the bend. Without a crystal ball, it’s impossible to know whether they’ll be easier or harder to live with than the ones I have now. My mom keeps reminding me to take one day at a time.

As usual, my support system has rallied around me this week. My lovely friends Jenn, Andrea, and Amy were here to drive me to appointments/just spend time with me. (Amy even brought her doggie, Romper, along for the drive yesterday. Yay for furry friends!) IMG_1990I’ve spent time on the phone with my parents and brother, as well, seeking their input as I’ve prepared to make decisions about next steps. And I’ve gained extremely valuable insights from my therapist, Tom, and from my primary care physician, whom I met with yesterday to complete the paperwork for the EOLOA. These two wonderful medical professionals — both of whom personify the word “caregiver” in its truest sense — gently reminded me this week that making the medical decisions that are best for me is not only consistent with the way I’ve handled my illness over the past six years, but is something I shouldn’t feel guilty about.

Which brings me to Mike. I truly don’t believe a more devoted, kind, loving, and patient husband exists. Seeing the heartache on his face as we talk about these difficult subjects and decisions makes me think I can endure anything for a little while longer rather than bring him pain. I have to continue to remind myself that I didn’t choose this disease, and regardless of the decisions I make over the next few weeks/months, the pain is coming sooner or later. For me (for both of us, really), it’s already arrived.

For a little gallows humor (and because I know many of you love The Princess Bride as much as I do):

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PS: Thank you so much to our dear family, friends, friends of friends (and even strangers!) who have sent gifts, notes, and messages. Your support buoys our spirits and helps us feel as though we’re not alone on this journey. It’s becoming more difficult to respond to each message/card individually, but please know they are received with gratitude and love. 

Breathe in peace. Breathe out joy.

I hadn’t planned to write a blog post today. It seemed like an expenditure of too much energy, something I have so little of these days. But you wonderful people have been so kind and supportive all these years and months. The least I can do is keep you in the loop through this final stretch.

It’s been a really tough week for me. I’m not sure whether it’s the steroid dose reduction (I’m now at 0.5mg every other day and can finally start to see my own face looking back at me from the mirror!) or the many stairs I climbed in Lake Arrowhead last weekend plus all the time spent sitting in the car, but I’ve been in a lot of pain — in my legs, arm and shoulder, especially. 

The rapidity with which I lost function in my left arm also has had me thinking a lot about the next phase in the progression of this disease. I feel like I don’t really even need MRIs at this point to tell me what my body is already telling me, and yesterday’s scan confirmed what I already knew: My tumor is growing fast. Short of an unprecedented response to the immunotherapy, which I started yesterday, my time is waning. 

I’ve shed a lot of tears over the past week as I’ve worked to stem the rising tide of panic thinking about how intolerable life will become without the ability to dress myself, walk, or perform other basic functions.

Fortunately, yesterday brought a little relief in this regard. My oncologist told me that moving forward with the End of Life Option Act (EOLOA) is not incompatible with continuing with the immunotherapy treatment. It will be a number of weeks until we’re able to determine whether the treatment is working and worth any side effects I begin to experience. In the meantime, however, it gives me great peace of mind to know that if I begin to decline more rapidly and/or experience intolerable pain/other symptoms, I’ll have the option to avoid prolonged suffering (both my own and that of those closest to me).

Mike and I watched an episode of the Netflix show Grace and Frankie yesterday while I got my infusions. A friend of Grace and Frankie’s, who has terminal cancer, throws a big party to celebrate her wonderful friendships and time on this earth, just before ending her life on her own terms. Her joie de vivre in her final moments is just what I hope to achieve, regardless of how the end comes for me. I plan to adopt her manta, too: Breathe in peace. Breathe out joy.

How can you help it when there are views like this to enjoy?

(None of which is to say that there won’t be lots more tears, as well. This dying business is not for the faint of heart.)

status update 7/6/16

Lots of people have been asking how I’m doing since my Avastin infusion last week. I’m hanging in there. I don’t really feel any differently since the infusion but haven’t been sleeping well so have been pretty fatigued. Today is my last day on the 4mg dose of steroids. Hoping the reduction to 2mg tomorrow will make a big difference in my sleep and other side effects. The swelling and water weight I’m carrying around with me are getting really uncomfortable, another reason I’m very eager to start the process of tapering the steroids. 

Mike estimates based on his look at the MRI that my tumor grew by about third since my scan six weeks ago, so things are progressing fairly rapidly. My left-arm weakness is significantly worse. Typing and writing have become very difficult. Looks like Siri and I are going to become better friends. I am still working hard on keeping up my strength. I’m doing a series of exercises every day for my legs and back and have recently added arm and hand exercises under Mike’s guidance. I got a Fitbit a couple weeks ago as well, which is helping keep me motivated to move around the house and take my daily walks. I’m pretty sure I am actually getting more steps/activity than when I was working; and it’s a good challenge to find creative ways to stay off the couch. 

I’ve also begun preliminary work for an essay series I plan to develop addressing the patient and family experience within the modern American healthcare system. In the coming weeks, I plan to interview folks who have had cancer or another chronic/terminal illness about their experiences from diagnosis through end-of-life care. This project is the result of a series of conversations with my healthcare providers, Mike, my mom, friends, and others in this regard.

I’ve begun to read some of the literature/consume other media on this topic, including When Breath Becomes Air by Paul Kalanithi, Being Mortal by Atul Gawunde and this fabulous TED talk by BJ Miller, senior director and advocate at Zen Hospice Project, in San Francisco. These physicians are contributing in tremendous ways to the conversation about how the healthcare system needs to and can be transformed to place the patient at the center. I feel that the voices of the patients and families themselves are, in large part, missing from the conversation taking place in the public sphere, however. I hope that through this series I can help shed additional light from this important perspective. 

If you or anyone you know has experienced cancer or another chronic or terminal illness — or is a family member of someone who passed away after receiving care within the healthcare system — please let me know if you would be interested in speaking with me for this project. 

Even as I embark on this project, we’re still trying to squeeze in as many adventures as possible. Our friends Ted and Sara are back from Europe and were in town over the past few days, including the holiday weekend. Huge thanks to Ted for driving me to my various doctor appointments last week. It was great to be able to spend that time together. We also had so much fun with the two of them and our friends Jeff and Ana listening to the sounds of one of our favorite bands, The Dustbowl Revival, at the beautiful Levitt Pavilion in Pasadena this weekend. And we enjoyed a spectacular view of the Rose Bowl fireworks from Ted’s parents’ house in Pasadena. #netjoy

the light of the world

Mike and I just finished The Light of the World: A Memoir, by poet and essayist Elizabeth Alexander. The book is written in the most heartbreakingly beautiful prose I have ever had the privilege of reading, and I recommend it most wholeheartedly. Elizabeth lost her husband, Eritrean-American chef and artist Ficre Ghebreyesus, to a sudden heart attack in 2012. This tender series of vignettes is as much a celebration Ficre and Elizabeth’s extraordinary love — not just for each other but for their sons, their families of birth and choice, and their African-American culture — as it is a deeply intimate sharing of the grief that accompanies the loss of a beloved spouse.

We took turns reading the book aloud, and — more often than not — I had to cede my turn to Mike because I couldn’t read through the tears. Tears of sadness, yes, grief for myself and (even more) for Mike, whom I wouldn’t trade places with for the world. But also, tears of joy and gratitude that we’ve shared the same luminous, transformative love as Elizabeth and Ficre, a love that has touched and molded our lives as individuals and as a couple — and has rippled outward in concentric circles through lives of our families, our friends, our acquaintances, and even people we barely know. Tears of appreciation, too, for the the opportunity to have found and read this transcendent work of art and to know that its beauty will remain and touch others long after I’m gone. If something I write can make a fraction of the impact on someone else this book made on me, I’ll feel like I’ve truly accomplished something as a writer.

Ficre’s own words from a 2000 artist’s statement capture the power of art in discovering and defining oneself:

I started painting ten years ago, but I suspect I have been metaphorically doing so all my life.  When I started painting, I just did it.  I had never felt a stronger urge.  The pieces that flowed out of me were very painful and direct.  They had to do with the suffering, persecution, and subsequent psychological dilemmas I endured before and after becoming a young refugee from the Independence War (1961-1991) in my natal home of Eritrea, East Africa. Painting was the miracle, the final act of defiance through which I exorcised the pain and reclaimed my sense of place, my moral compass, and my love for life.

For Elizabeth, her medium is clearly language. Here are just a few of the passages that touched me:

How many times that day and in following days and weeks and months did I say “my husband.” My husband died unexpectedly. I just lost my husband. Lost implies we are looking, he might be found. I lost my husband. Where is he? I often wonder. As I set out on some small adventure, some new place, somewhere he does not know, I think, I must call him, think, I must tell him, think, What would he think? Think what he thinks. Know what he thinks.

Now I know for sure the soul is an evanescent thing and the body is its temporary container, because I saw it. I saw the body with the soul in it, I saw the body with the soul leaving, and I saw the body with the soul gone.

Each of us made it possible for the other. We got something done. Each believed in the other unsurpassingly. In all marriages there is struggle and ours was no different in that regard. But we always came to the other shore, dusted off, and said, There you are, my love.

Oh my darling, where did you go? How powerfully I feel you are somewhere, but not here. You come to me in another dream with a missing tooth and an unfamiliar red jacket…Do you make friends and have companions where you are? I thought all you needed was us.

As Elizabeth moves forward with her life, she writes powerfully about her proximity to death.

Death sits in the comfortable chair in the corner of my new bedroom, smoking a cigarette. It is a he, sinuous and sleek, wearing a felt brimmed hat. He is there when I wake in the middle of the night, sitting quietly, his smoke a visible curl in the New York lights that come in between the venetian blind slats.

At first I am startled to see him. He sits so near, is so at home. But he doesn’t move toward me, he simply co-habits. And so, eventually, I return to sleep. He isn’t going anywhere, but he isn’t going to take me, either. In the morning, the chair is empty.

Which is stronger, death sitting in the corner, or life in New York City? Death, or my teenage sons, sleeping profoundly in the next room, growing overnight? “I love plans!” my new friend Esther exults, and so do I, for nowadays I feel like plans are all that stands between me and the end of my life. I’m not going to die overnight because next Wednesday, I am going with Esther to see an auction of nineteenth-century American documents at Swann Galleries. I’m not going to die tonight because I already took the chicken out of the freezer and Simon loves roast chicken and rice for dinner, and I promised him I would make it. I’m not going to die tonight because on Saturday Farah and I are bundling up and going for a walk against the blustery winds along the river, to continue the conversation we began almost thirty years ago when we were both in graduate school, before I even knew my beloved Ficre.

I’ve already revisited this passage repeatedly and expect I’ll continue to do so as I contemplate my own proximity to death and the tenuous hold I have on life. I’m making plans, too. I feel quite certain I’ll be able to make it to the joint birthday celebration Mike and I have planned with our friends on June 18 (an outdoor screening of Indiana Jones in a Culver City park), and on a little getaway to Topanga Canyon the following weekend for Mike’s 32nd, and probably to the 4th of July get-together at the Merendino/Williams pad in Pasadena. But the flight we booked to Nashville for Kate and Rob’s wedding in October? Death may have come for me by then, and my plans aren’t going to stop him.