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!

IMG_1494

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.