rolling with the punches (and some fun, too!)

It’s been a little while since I last posted. As some of you know, I’ve lost nearly all use of my left hand/arm as a result of recent tumor growth, which has rendered typing on my computer nearly impossible. I’ve been relying on Siri and predictive typing on my phone, which can be pretty slow and tedious and is why I haven’t blogged lately. 

Aside: It’s pretty incredible how much I’ve been able to adapt to using my right hand almost exclusively. I’ve even started to write with it. My printing is fair but my signature needs work. 🙂

In addition to the new physical challenges and adaptations, I was really struggling with a tough decision-making challenge over the past week. Last weekend, I read an Op-Ed/blog post by Melinda Welsh, a woman whose life has been extended by a relatively new, leading-edge cancer treatment called immunotherapy. This was among the options we discussed briefly with Dr. Nghiemphu back in April when my new tumor growth was first detected, but I was feeling too poorly at the time to even consider a treatment about which very little data exists to date. Reading Melinda’s piece prompted Mike and me to dig into the research about Opdivo, the immunotherapy drug that’s on the table for me. 

Here are some links to the info I perused over the past week:

My phone typing is too slow to explain in detail how it works, but bottom line: it helps uncloak the cancer cells and sends your immune system into overdrive with the goal of destroying new cells as they divide. It’s not yet approved by the FDA for brain cancer but is being made available to eligible UCLA patients via the drug company, Bristol-Myers Squibb (BMS). 

Apparently, there are promising results among patients with melanoma, and the FDA has approved the drug for this use. Dr. Nghiemphu says she’s only used the drug a handful of times over the past 6 months and hasn’t seen anything yet that she’d classify as positive response (i.e., tumor shrinkage), but she says it seems to be preventing tumor growth for at least one patient currently receiving the treatment. 

Opdivo is administered via infusion along with Avastin for as long as it’s efficacious/tolerated and can be stopped at any time. Side effects can include fatigue and some issues related to an overactive immune system, but nothing potentially deadly or particularly worrisome. 

I’ve agonized this week over the decision about whether to try this treatment, running the possible scenarios over and over in my mind and in conversations with Mike, my brother, and others and asking myself the following questions: Do I trade the decent quality of life I have now for the unknown, both in terms of side effects and efficacy? Would I regret not trying every option out there that could give me a few more good months? But what if this makes me feel worse and I regret not just riding it out on the Avastin?

I feel incredibly fortunate to have a husband and family who extend me the freedom to make these decisions for myself with opinions offered only when sought. On the other hand, it’s a lonely and scary place to be, especially when I know my decisions affect so many more people than just me. 

Once we met with Dr. Nghiemphu yesterday afternoon, though, and she explained the low level of risk and side effects and my ability to stop at any time, it ended up being a very easy decision to give this a shot. She’s getting the ball rolling to apply to BMS to provide the drug for me through its compassionate care program, since it’s almost certain my insurance company won’t cover this off-label use. She also cleared me to further reduce my steroid dose to 1mg/day, and I’ll be completely tapered off the steroids by the time I start the Opdivo in the next few weeks.

Meanwhile, we’ve been enjoying our summer. We had a great visit with my parents over the last week and were able to explore new parts of the city together. Between outdoor movies, live music, and lots of great food, we are making the most of every moment. Some fun adventures are on the horizon as well, including a quick getaway to Santa Barbara this week with my cousin Amber and a long weekend at Lake Arrowhead later in August. I’m also plugging away at scheduling and conducting interviews for my essay project and will be meeting next week with a college friend who’s flying in from New York to help me further conceptualize the possibilities for this project.   

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

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.

making lemonade with levity

I’ve been surprised over and over by the rapidity and strength with which Mike and I have formed bonds with virtual strangers because of our common connection to illness or other trauma. Most recently, we connected in this way with a guy named Josh Perry, a woodworker we found on Instagram — who has helped us design and fashion several incredible pieces for our home — and his wife, Jamey. In the past couple of years, Jamey was diagnosed with a nerve disease, Chronic Inflammatory Demyelineating Polyneuropathy, which has limited her ability to walk and necessitated her use of a wheelchair. Instead of allowing this circumstance at a young age (and with two little kids to boot!) to embitter or overwhelm them, Josh and Jamey have used this life-changing experience as a reason to double-down on the pursuit of their dreams. Josh is building his woodworking portfolio with the goal of making a business out of it. His work is incredible, and we are so honored to be among his first clients and to be co-designing various pieces with him. Jamey, meanwhile, is pursuing her dream of becoming a TV writer, and is hard at work on a pilot script. At the same time, she’s kicking ass and taking names in wheelchair motocross — and is currently the number-one ranked woman in the sport! While I haven’t had the chance to meet Jamey in person yet, we’ve become friends via social media and text message and are planning a dinner sometime soon.

Meanwhile, Mike and our friend, Rob, were able to join Josh in his home woodworking studio to lend a hand on our record-cabinet project. (As you can see, all three of them passed the 10-finger challenge that afternoon.)

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Josh subsequently posted this photo on Instagram with the following caption “TheMICHAELSCOTT record cabinet is finishing nicely. Needs doors, hardware and a nice finish before leaving the shop. AND maybe some legs.”

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With a dark humor that I deeply appreciate, Jamey soon responded, “Legs are overrated.” The Instagram comment conversation that ensued led to Jamey suggest that Josh put the whole thing on roller skates instead. Here’s the drawing he sent.

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My response? A call for haiku captions. (We’ve since shared the story with our friends, Ted and Sara, who have contributed their own haiku captions to this silly, wacky, joy-finding adventure of ours.) Here’s what the six of us have come up with so far:

Mike

Music hutch on wheels/Roller derby icecapades/Who needs legs to dance?

Naomi

Dance with a cabinet/Incredibly romantic/Wheelchair roller skates love

Josh

Roll with me my love/To a place of groovy sound/Our hands, wheels delight

Jamey

Not ungraceful, still–/Needle scratch, collective gasp/Wheelchairs suck on ice

Ted

1) disco isn’t dead/rolling disc player proves it/Donna Summer rules
2) cabinet with legs/records and music up top/Rollerblades on feet
3) Record Skaterson/world champion disc spinner/live tonight Mike’s house

Sara

1) Wheels instead of legs/Who needs those legs anyway?/But please build the doors
2) Business on the top/And party on the bottom/A mullet on wheels

Which is your favorite so far? 

Join in our lemonade-making endeavor by writing your own haiku (or two!) in the comments section. And join me in thanking my lucky stars for friends, old and new, who can find laughter — or maybe just a wry smile — in the midst of misfortune.