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!

wonder, part III

My cousin Josh asked me to write a post answering the following question: If you had three pieces of advice to share from your journey, that you hope would profoundly affect generations to come, what would they be? This is a great question and a blog post on the topic is in the works. 

In fact, I’ve already done some thinking about what three pieces of advice I have to offer. (I make no claims regarding their potential effect on future generations, but simply share them as lessons from my own experiences.) The first — without which this wonder series would not be possible — is: Accept help from others with grace and gratitude. More to come on this topic and my long process of recognizing its power and incorporating it into my own life. For now, suffice it to say: accepting help is HARD. But as Pam (my mother-in-law) and I discussed recently, it’s SO worth overcoming the ego and fear that keep us saying “no, thanks” or “I’m ok.” The life enrichment for both parties is immeasurable. (Actually, it probably is measurable. I’ll try to do a bit of research for my longer post on this subject about the benefits conferred by giving and accepting help to/from others.)

In the meantime, I continue to be in a state of wonder at the outpouring of love and support we have received from all corners over the past couple of months. (Yes, in addition to June 9 marking the date of implementation of the End-of-Life Option Act, it officially marked two months since my terminal diagnosis.)

Among the wonderful souls who have gone above and beyond to help our family during this period is Susan*, a longtime patient of Mike’s. When she found out that we were in need of an apartment for our families to use as a home base during this difficult time in our lives, Susan immediately offered us use of the furnished guest unit on her own property. This incredibly generous arrangement has allowed my parents, Pam, Tim and others — but most especially my mom — to have comfortable, ample, private living space while helping provide care for me. Importantly, by providing alternative housing for our families, it has allowed Mike and me vital, precious time with friends and alone together each day and night. These moments alone, especially — cooking dinner, reading together and separately, talking, crying, laughing, giving foot rubs and back rubs, lying on the rug listening to records — are invaluable and we’ll never be able to repay Susan for giving us this beautiful gift. 

I’d also like to recognize (in no particular order; more to come in the next installment of this series!):

  • Kate and Holly for the wisdom and love they brought to the writing and editing process for my Modern Love essay. (Still no word from The New York Times. They say they respond to all submissions in four to eight weeks. It’s been six; I’m getting antsy!) And for Kate and Rob, who came straight to LA to spend an incredible, meaningful week with us. We were sad to see them go, but so, so grateful for the time together.
  • My brother, Tim, for giving up a trip to Italy to come to LA to spend time with me as soon as possible upon hearing the news; for tracking down the one chair in LA we wanted for our living room and for spending the Memorial Day holiday with us, providing help (along with Jen!) with meal prep, grocery shopping, cleaning and more. 
  • Sienna (and Chelsea) for their help setting up the CaringBridge site. And Sienna for always being among the first to reach out and offer help or companionship — and mean it!
  • Our neighbors Jenn and Rose and James, who have been there to support us in ways large and small. (Most especially Jenn and her husband Toru, who have become real friends, too!)
  • My hair stylist, Lindsey, who has not only provided haircuts (gratis) to my family and me but has shown a genuine interest in us and our well-being and has become a friend in the process. 
  • Lauren and Chris, who have been wonderful confidantes, willing to have the difficult conversations that not everyone can have and bringing thoughtfulness, care, joy (and often Tender Greens!) with each visit. To Chris: We love seeing how happy you make our dear friend, Lauren, and I feel lucky to have witnessed your relationship blossom over the past several months. 
  • My in-laws, Brian and Katrina, for helping make our new sitting room the cozy, inviting space it is and for their ongoing love and support. Love you guys!

 

*Name changed to protect patient confidentiality.

the freedom to choose

Guest post by Mike Scott

June 9th has arrived. June 9th, 2016, a seemingly unimportant day, unless it’s your birthday — or you are living with a terminal illness in California. Although my wife and I are celebrating our birthdays together this month (hers was in April and she felt too poorly to celebrate so we’re holding a joint party for my June 20 birthday) it is the latter that makes this day so significant for us. Today is the day my wife gained a drop of freedom back in a life that has taken oceans of autonomy and hopes away from her.

The End of Life Option Act went into effect in California today and has given 12% of this country’s terminally ill patients the ability to make a choice in how their life will play out. A choice that Naomi would not have thought she would have to think about even 10 years ago. A choice that allows her the ability to control the end of her story if she chooses to do so.

This past year, Naomi has had plenty of choices to make that would help determine what her life would look like.

  • She could choose the beginning or middle of June to start her brain radiation. 
  • She could chose Temodar or PCV for her chemotherapy. 
  • She could chose to continue or stop a benzodiazepine that was causing her seizures despite having withdrawal symptoms.
  • And she could choose between unproven immunotherapy, chemotherapy after being decimated by 5 months of it already, or palliative care after being given a terminal diagnosis. 

These don’t seem to line up with the normal choices anyone living a normal life cycle should ever have to make, never mind a 33-year-old. Normal choices like which movie we should go to? Choices like where to meet friends out for dinner. Choices like should we ride our bikes or walk there? These choices were stripped away by a disease that could affect you, your neighbor, or a loved one. It has taken away choice in matters like driving, walking significant distances, working, footwear, traveling, laughing, crying, and independence.

So I am grateful for all of those people and organizations like Compassion & Choices that bound together to bring one very important choice to those with a terminal illness in our state. The choice is not how you want to die. The choice is how you want to live the rest of your life.

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.

learning to dance in the rain

Last summer, my dear friend Chelsea made me a paper chain — with one link for each day of radiation treatment. More than just a creative way to mark my progress through treatment, on each piece of the chain Chelsea wrote a meaningful quote by some of her — and my — favorite authors, poets and philosophers. I’ve been revisiting the stack of quotes recently and have found many to be timely and relevant to my present situation.

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The three pictured below, in particular, help capture the peace that found me during our staycation weekend at the Merendino/Williams pad in Pasadena. I find that it’s easy to breeze glibly by quotes like these unless I am intentional about pausing and thinking and allowing them to really reach me.

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I took the time today to sit with each of these three quotes and think about why it felt meaningful to me in the context of this special weekend. Here goes:

It’s not about waiting for the storm to pass. It’s about learning to dance in the rain. 

In the most literal sense, I was hoping for a warm, cloudless weekend that would allow us to take advantage of the pool at the Pasadena house. While the clouds did burn off in the afternoons, it was mostly pretty overcast and chilly. On Sunday morning, when Mike and I paid our friends Eileen and Ned a visit at their new house (affectionately dubbed “The Hobbit Hole”) in La Crescenta, it was actually raining. The misty rain, however, along with hot tea, coffee and oh-so-flaky pastries we picked up at Gio’s in Montrose, were the perfect backdrop against which to be introduced to Eileen and Ned’s quaint mountain cabin. The clouds also provided the perfect weather for sleeping in, napping, and just generally relaxing — something Mike, Tim, Jen and I took full advantage of during the entire weekend.

We must let go of the life we have planned, so we can accept the one that is waiting for us. — Joseph Campbell

Joseph Campbell has been a spirit guide throughout my entire journey with cancer, and these words have resonated with me for many years. This weekend was just another example of the gifts that are waiting when we are able to let go in the struggle to hold on to our hopes and dreams and accept what life is offering instead. In the case of this weekend, it was precious time with Tim and Jen, whom we don’t get to see nearly often enough. Interesting conversations about healthcare and food policy, hilarious stories about the antics, trials and tribulations of Jen’s fourth-grade students, and laughter over our fumbling attempts to deliver prompts in a game of Taboo.

We do not remember the days. We remember the moments.

Here are a few of the moments I’ll remember and treasure from this weekend:

  • Sitting with Mike, Eileen and Ned in The Hobbit Hole eating a crumbly, not-too-sweet, coffee-cake muffin, drinking a ginger hot tea and petting the kitty, Ginger.
  • Taking a sunset walk with Mike on a peaceful dirt path lined by mature trees.
  • Looking out toward the mountains from the patio with Mike and Tim sitting close by.
  • Gazing at Van Gogh’s Portrait of a Peasant during our visit to the Norton Simon Museum.
  • Enjoying a late-night donut meet-up in Eagle Rock with our friends Jeff and Ana.
  • Preparing a simple-but-satisfying meal of grilled kabobs and rice with Mike, Tim and Jen.
  • Lying in bed reading in the late afternoon sun and waking up an hour and a half later from a delicious nap.

We are SO grateful to our friend, Ted, and his parents, Gari and Ellen, for making this little staycation possible for us. It was the perfect location — not too far from home to make the drive uncomfortable for me, but far enough to make it feel like a real holiday-weekend getaway. I’ve loved the Merendino/Williams Pasadena home ever since Ted first introduced me to it in college, and it made for the just the change of scenery I needed to escape from purgatory for the weekend.