purgatory

Well, we’re officially in purgatory, and let me tell you, I don’t like it here. On Monday, we spoke with Dr. Taylor again, and UCSF’s tumor board has a significantly different take on last week’s scan than my team at UCLA. In short, UCSF believes the swelling that was present on my 4/9 scan is most likely a result of delayed-onset radiation injury (other terms for this are radiation infarct and radiation necrosis). Dr. Taylor believes that the significant reduction in swelling seen between the scans on 4/9 and 5/18 — along with the notable lack of tumor growth over that period — supports this explanation.

Dr. Nghiemphu and the UCLA team, upon additional follow-up, has indicated that their reading of the scans doesn’t support this explanation for a couple of reasons: the 4/9 scans (which showed significant swelling) looks different to them than the scans immediately following my course of radiation treatment last summer, when radiation necrosis was very apparent (and eventually went away, following a course of steroids). They are also interpreting what they’re seeing on the 4/9 and 5/18 scans as tumor growth and attributing the swelling seen on the 4/9 scan as related to that growth.

It seems to be a case of two respected institutions with good reasons for two substantially different interpretations of what they are seeing in two snapshots in time. 

Thus, purgatory. 

There is literally nothing we can do between now and my next MRI on 6/29 except wait to see which of these explanations is borne out by the next data set. Even my symptom progression is a relatively poor yardstick for determining what’s going on in my brain: Since we’re tapering the steroids in an attempt to find the minimum effective dose, there’s a chance we’ll go too low, which would allow the swelling — and symptoms — to return.

My state of mind is the most perturbed it’s been since receiving the initial news in April — maybe even more. I’d been prepared for the worst; it’s something I’d been preparing myself for for a long time. But I wasn’t prepared for this level of uncertainty. In the USCF scenario, we manage the swelling, and I continue to live with the same progonsis I had before April’s scan ever happened (which is to say, potentially for many years). In the UCLA scenario, we manage the swelling, but the tumor continues to grow at an unknown pace and I have anywhere between six months and a couple of years to live. (Of course, after a number of months have gone by, if I’m feeling much better, maybe additional treatment options would be back on the table, opening up more new cans of worms.)

My mind is spitting out what-if scenarios in rapid succession, unable to find a comfortable place to land. When I was definitely dying, I was okay with that. I was living in the moments and was grateful for each one. But now, I’m getting greedy. If more moments are available, I want them. How am I going to straddle this chasm between life and death for six weeks? How far into the future should we make plans? There are practical matters to be considered: the care I’ll need, health insurance, disability, student loans, cars, work, taxes.

Against this backdrop, we’re heading into our little Memorial Day weekend staycation. Friends have generously offered use of their home in Pasadena, and Mike and I will head up there tomorrow afternoon with Tim and Jen, who are already in town. I’m hoping the peaceful, nature-filled setting and beautiful home will help calm my spirits and return me to the moment.

In the meantime, I’m attempting to place myself in the spirit of this wonderful poem my social worker, Tom, shared with Mike and me from a recent mindfulness workshop he presented. Apparently, I have more learning and growing to do!

The Guest House

by Mewlana Jalaluddin Rumi

This being human is a guest house.
Every morning a new arrival.A joy, a depression, a meanness,
some momentary awareness comes
As an unexpected visitor.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out
for some new delight.

The dark thought, the shame, the malice,
meet them at the door laughing,
and invite them in.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

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.

cautious optimism

Well, we just arrived home from my MRI and the visit with my oncologist, Dr. Nghiemphu, and social worker, Cheryl, that immediately followed the MRI. (Stopped at the LifeTrail for our daily walk on our way home.) Dr. Nghiemphu came into the room pretty much as soon as we got there to let us know the results of the scan. She was also able to show the scan to Mike right away before stepping away to meet with another patient and then rejoining us for a more thorough conversation regarding next steps. (As many of you may remember, I have never personally seen my scans; I’ve never wanted to have that visual image seared into my brain.)

So, quick takeaways: the swelling in my brain has decreased significantly since my 4/9 scan, meaning that the steroids are doing their job. The tumor itself does not appear to have grown much — if at all — over the past six weeks, although it’s apparently a little difficult to tell exactly what’s going on because of the reduction in swelling. 

Basically, this is as good of news as we could have hoped for. It means that there was a burst of growth following the radiation and chemo treatment, but the tumor now seems to be growing slower than they initially thought and, currently, seems to be controlled by the steroids to some extent.

We have agreed to scan again in six to eight weeks. In the meantime, I’ve been cleared to reduce my steroid dose from 4mg per day to 3mg, which I’m hoping can a) make me feel a little more like myself; b) help slow the muscle atrophy I’m experiencing; and c) help reduce the horrible puffiness and acne on my face.

Avastin continues to be on the table as a treatment option once the pace of tumor growth accelerates. Dr. Nghiemphu continues to predict this will happen in the coming months, but seems to think it could be several more months out than seemed likely after the April scan.

There is so much more to share with you all from this visit, including information about why the Duke polio trial and other clinical trials are not a fit for me at this point. On a more exciting note, I can’t wait to share with you the invigorating conversation we had with Dr. Nghiemphu and Cheryl about some ideas I’ve been mulling over for future research and writing. They were both very enthusiastic to speak with us about a variety of topics related to my own personal cancer journey, and the role of culture in cancer treatment and care, including end-of-life care. (In fact, we finally had to tell them we had to leave; they were both so engrossed in the conversation!) They are also both eager to connect me with others in the field as I seek to learn more about these in preparation for writing more about it. Very excited to share more about this part of the visit in future posts/conversations.

More to come soon, including impressions from UCSF’s tumor board, the members of which will review my scans tomorrow, all being well. We’ll speak with Dr. Taylor early next week when she’s back in town to see if she and the board concur with Dr. Nghiemphu’s assessment and our planned next steps.

Definitely a day of net joy!

wonder, part II

For every invaluable lead actor, there are many supporting roles filled by folks without whom the stars could not shine. My last wonder post was all about the stars. Today, I’d like to acknowledge a small-but-mighty group of folks who have filled key supporting roles over the past months with love and grace. 

Four important people — my bestie, Chelsea; my lovely mother-in-law, Pam; my dad; and my cousin, Amber — have all put in boots-on-the-ground time taking care of me when my mom has been unavailable or taking a much-deserved break. 

Chelsea is my rock, there for many doctor visits and MRIs taking notes, asking follow-up questions, making sure my concerns are heard and addressed. Driving across town in rush-hour traffic to pick me up at radiation treatments and bring me home. Listening and comforting when I call in tears, overwhelmed by how poorly I feel. Bringing dinner and serving it and cleaning up and taking out the trash, all without even being asked. Helping sell our old bedroom furniture to make way for our new sitting room. Pulling strings and running errands to make possible an early birthday present for Mike. Her selflessness and generosity know no bounds, and I am beyond grateful for everything she does for me and us, and for her love and friendship, which mean the world to me.

Pam spent two weeks here helping to take care of me during chemo round #1, which fell during my parents’ harvest season last fall, and arrived this week to lend her support once again. In addition to providing help with meals and medications, Pam helped us make the beautiful wedding photo coasters so many of you have enjoyed during your visits over recent months. We are looking forward to spending more time with her over the coming couple of weeks, and are so grateful for her eagerness to be here with us during this time, supporting Mike, my mom and me however she can.

My dad has been able to spend a few weeks here over the past several months and plans to be here again later this month. During his time here, he’s applied his positive, go-getter attitude and (and handiness) to helping us resolve issues ranging from a broken fridge valve and flat tires to regular home maintenance and fun projects for our new sitting room. His help has been deeply valued, as has our time together, spent coloring and talking and just being. I think it’s important to acknowledge, too, that it’s probably harder to be 1,300 miles away going to work every day and not here with us, so I appreciate the sacrifices he’s making in that regard.

My dear cousin Amber has been such a source of joy and comfort to me over the past year. Mike and I had an incredibly fun time visiting her and her boyfriend, Mark, in Dallas in between my radiation and chemo treatments last August. (And loved getting the opportunity to spend time with my aunts Yvonne and Karla, and my cousin, Chelsea, as well.) Since then Amber has been able to visit twice, once to provide a break for my mom and help with my daily meals and medications. I’ve cherished the time we’ve had together, from sitting in the park eating McDonald’s breakfast to long talks about life to learning how to knit.

Stay tuned for part III!

In the meantime, I highly recommend watching the moving commencement address Facebook COO Sheryl Sandberg gave at UC Berkeley a few days ago — nearly a year to the day after the sudden death of her husband — on the lessons grief has taught her about gratitude, resilience and joy. Here are a few of her poignant words:

For the first time, I am grateful for each breath in and out—grateful for the gift of life itself. I used to celebrate my birthday every five years and friends’ birthdays sometimes. Now I celebrate always. I used to go to sleep worrying about all the things I messed up that day—and trust me that list was often quite long. Now I try really hard to focus on each day’s moments of joy.

It is the greatest irony of my life that losing my husband helped me find deeper gratitude—gratitude for the kindness of my friends, the love of my family, the laughter of my children. My hope for you is that you can find that gratitude—not just on the good days, like today, but on the hard ones, when you will really need it.

on being present

This week, my friend, Kate and her fiancé, Rob, were in town. We shared many hours of meaningful conversation (one-on-one, the four of us, and with groups of mutual friends) that touched me deeply. They were the types of conversations that plunge far beneath the surface and plumb the depths of human connection. 

During a conversation early in Kate’s stay, she asked if we’ve been talking a lot with our steady stream of visitors and with each other about my diagnosis/prognosis — or if our conversations over recent weeks have dwelt primarily on other subjects. The question prompted Mike and me to think about this, and we concluded that — after our initial, difficult series of conversations with our closest friends and family — most of our conversations have had nothing at all to do with cancer, or with life and death, per se. I wondered aloud if that was a good or bad thing and whether it indicates avoidance or denial on any level. In further conversations on the subject, Mike and I reached the conclusion that the profound moments can’t be sought or forced. They have to come about organically and authentically. 

A couple days later, Mike sent me the below excerpt from this beautiful post:

I’m not insisting that we be brimming with hope — it’s OK not to be optimistic. Buddhist teachings say, you know, feeling that you have to maintain hope can wear you out, so just be present… The biggest gift you can give is to be absolutely present, and when you’re worrying about whether you’re hopeful or hopeless or pessimistic or optimistic, who cares? The main thing is that you’re showing up, that you’re here, and that you’re finding ever more capacity to love this world — because it will not be healed without that. That [is] what is going to unleash our intelligence and our ingenuity and our solidarity for the healing of our world.

The quote comes from A Year with Rilke: Daily Readings from the Best of Rainer Maria Rilke wherein Buddhist scholar and philosopher Joanna Macy finds solace in the poetry of Rilke following the death of her husband. 

Rilke writes:

The great secret of death, and perhaps its deepest connection with us, is this: that, in taking from us a being we have loved and venerated, death does not wound us without, at the same time, lifting us toward a more perfect understanding of this being and of ourselves.

I’ve ordered the book and look forward to sharing more of Macy and Rilke’s insights — and Rilke’s poems — in future posts. 

In the meantime, Mike and I have committed to simply being present — to showing up each day open to grief, love, joy and whatever else presents itself.

Thank you, Kate and Rob, for a beautiful week. We will cherish it forever.

the timing of the shrew

Aside

time is a cruel mistress. 

wrathfully, she steals the sands of my days and stockpiles them in dunes of night. useless, empty, tedious night when the world is asleep to my vigil, asleep as i watch her open her fingers, 

cackle, 

and let the grains trickle through.

time, you mocking shrew, you dominatrix,

give me back my sand. 

let me spend it how i want to

let this nightly vigil end. 

another great week

Happy Saturday, y’all! Yep, I’ve been spending time with my cousin from Dallas. 🙂

This was another great week, full of quiet moments at home with mom and Mike, laughter with friends, lots of great food, and walks at the LifeTrail. (Have I mentioned that’s what we’ve nicknamed the Reuben Ingold Park, which has a bunch of these “LifeTrail” branded exercise stations along the walkIMG_0721ing loop?”) It’s beautiful and peaceful there, with magnificent ocean and city views, and flowers, birds, and nature aplenty.

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This week also brought a very welcome improvement in how I’m feeling physically. Two nurse practitioners visited on Wednesday to complete my intake into the palliative care program at Los Angeles Jewish Home. Anne and Ann were very kind and professional, and were able to offer a few simple tweaks to my medication dosage and timing that have resulted in improvements to my two primary complaints: GI discomfort and sleep. The melatonin they recommended — along with ZZZquil and the THC oil our friend Joe prepared — have finally resulted in longer, more restful sleep. I’ve had more energy this week, and have been able to get out of the house more, including getting to Warby Parker in Venice to get my glasses adjusted (have been wanting to do that for months!) and going to lunch with my mom.

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Looking forward to spending lots of quality time in the coming week with my dear friend, Kate, who is in town from New York, and her fiancé, Rob. And now I’m off to practice my knitting!