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

post-MRI status update 6/29/16

Given the increased weakness in my left arm leading up to today’s MRI, Mike and I went into today’s appointment prepared to hear that my tumor is continuing to grow, which is indeed the case. It’s growing fairly slowly, but growing nonetheless. Inflammation seems to be pretty well under control at this point. 

We used today’s appointment to talk extensively about the risks and benefits of Avastin. The serious potential negative incidents such as stroke, brain bleed and gut bleed seem to be even more rare than we initially understood and are more common among older patients who are otherwise in much worse health than I am. That being said, there are intrinsic risks that simply cannot be avoided. Our conversation did assure both Mike and me that the Avastin is the best course of action at this time. It will allow me to taper off the steroids, further improving my quality of life in the coming months. 

We also spoke with the care team, including Dr. Nghiemphu and both my wonderful social workers, about the End-of-Life Option Act. Dr. Nghiemphu does not feel she can state with confidence that I have less than six months to live at this point (good news, right?!), so that process will have to be initiated further down the road. 

We are in very good spirits, and I’ll proceed with my first infusion of Avastin tomorrow at 11am. 

Thank you to Mike for being a stalwart source of love, support and laughter. You make everything better. And a big thanks to Ted for a great lunch and the ride today. I look forward to more time together tomorrow!

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Congratulations, Cheryl, on your retirement. You will be missed. I cannot thank you enough for your support and advocacy on my behalf over the past 5.5 years. You and Tom are simply the best!

challenges and opportunities

It’s been a bit of a tough week. Mike has been hit especially hard by the news of his grandma being placed on hospice care. Now 87, Grandma Marge has been growing more frail for a few years now. She relocated to South Carolina a couple years ago to be near Pam and Gary and has been unable to bounce back from a series of health issues/events, ranging from stroke to falls to increasingly severe memory problems. Her health has declined quite precipitously in recent weeks, and the family is now focused on ensuring her final days are peaceful and  comfortable. Mike and I have spent some time talking this week about some of his favorite memories of his grandmother. He describes her as the “quintessential grandma” — kind, loving, and a great baker! Our love and thoughts are with Pam and Gary and the rest of Mike’s family during this difficult time. 

Also filed under difficult news: As some of you know, the weakness in my left arm, as well as my overall level of fatigue, have been on the rise for a couple weeks now. We’ve been tweaking my steroid dose to get the symptoms under control. It’s sorta working, but the increase in steroids has, in turn, triggered a mild fungal infection, so we’re treating that, too, and it seems as though we’re reaching the end of the road with the steroids. Their reduced effectiveness and accumulating side effects (facial swelling, water retention, painfully dry, flaky skin, insatiable hunger, muscle atrophy, the list goes on…) have forced a conversation about what comes next. 

I had hoped to have all the pieces of the End-of-Life Option Act (EOLOA) in place prior to considering a switch to Avastin, given the (small: ~1%) chance of serious side effects (stroke, brain bleed, gut bleed, etc.) that could dramatically reduce my quality of life (assuming I remained cognitively intact, of course). However, it’s a several-week process, which requires me to jump through a whole series of important hoops, designed to protect me and ensure I’m not being coerced in any way. So, while we can start the ball rolling on that next week, it seems like we’re going to be making a concurrent switch to Avastin. In fact, my first infusion is scheduled for 11am on June 30, the day after my MRI. This will give us the night to weigh the MRI results and make a final decision before proceeding. 

The good news: If I don’t experience the rare, lethal side effects, I should actually start feeling (even) better once my steroid dose is fully tapered (about a week after the first Avastin infusion). Losing the bloating, fat, and extra water weight and continuing my hard work toward regaining some muscle mass are certainly enticing prospects!

More good news? We’re getting away for the weekend! We are headed to a cute little cottage in Topanga Canyon to continue the birthday celebrations and spend some quality M&N time. We are very much looking forward to the time in nature enjoying each other’s company and setting aside our worries as best as we can for the moment. 

Wishing everyone a moment (or many more!) of joy this weekend, especially Ryan and Shannie, whose wedding celebrations we’re so sad to be missing.

And sharing a little photographic evidence of our own joy last weekend, when a host of amazing friends threw an epic picnic to celebrate our birthdays at an outdoor movie (Indiana Jones and the Last Crusade). What a fun night. Thank you to everyone who came out, and an especially big thanks to our party planners, early gatherers, balloon and cupcake bringers, and chauffeurs!

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.