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):

15vlo5

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.)

immunotherapy 

Aside

In a timely development for those interested in learning more about this leading-edge treatment, The New York Times is in the midst of publishing a series of articles about immunotherapy, starting with this one, which covers the basics. Links to the other articles in the series can be found within the story. 

What is Immunotherapy? The Basics on these Cancer Treatments

It seems like this has the potential to be the game-changer in cancer treatment I always hoped I’d be alive to see/benefit from. The version I’ll be receiving seems like a beta test: the crudest and most rudimentary iteration of what will ultimately become a precise and sophisticated science. Fascinating stuff!

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.