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

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” ‚ÄĒ 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!