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. ūüôā

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 ‚ÄĒ or is a family member of someone who passed away after receiving care within the healthcare system ‚ÄĒ 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