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.

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!

life is uncertain; eat dessert first

Quote

loved this sign (and all the throwback signage) at the new(ish) santa monica place market.  the message was particularly timely since i’d just had diddy reese as a pre-dinner snack!

a simple idea, but an important reminder to each of us that we don’t know what life will place in our path tomorrow.  what better time than the present to be ourselves, pursue our passions, experience meaningful connections with others…and EAT DESSERT?