I’m writing this update mid-flight, on the way back to Calgary from MSKCC.
In some ways, the flights feel like a sanctuary. My carry-on luggage is a carefully curated little collection of artifacts. Today I’ve got a few ‘Homeland’ episodes, a Janette Turner Hospital novel, and some sticky rice (my new comfort food). When not flying with preschool-aged boys, seat 19F resembles a tranquil zero-gravity space pod. My seat-mates come and go, but not one has ever involved me with their apple juice.
The travel works, too, by inserting a kind of liminal zone between the world of melanoma and the world of home. I’m sure there will be a time when I can get the care I need from the Tom Baker here in Calgary .. but I feel a bit uneasy sometimes to see it looming over our neighbourhood when I step out the front door. (And we do literally see it on the hill when we step out the front door!). Despite the inconvenience of a distant trial site, there is a comfort in preserving Calgary as somewhere I go tobogganing on that hill, and New York as the ‘exotic other’ where this melanoma is going to be dispatched.
My intestines mock that tidy scheme. They have been shredded by Yervoy, and they are irate; ground and air. I’ve had the opportunity to reflect on previously unexamined issues. To the members of Air Canada’s washroom facility committee: I have thoughts and questions. Was it difficult to source this ethereal, vanishing ply? At some point, doesn’t the product actually become more challenging to manufacture? Should we revise the whole protectionist stance we’re taking toward this airline?
That’s probably an example of my new Prednisone-induced hypomania. But at least the colitis is being treated. I was so desperate to avoid taking Prednisone that I was minimizing my gastrointestinal side effects to the trial nurse. (Note to other physicians with health issues: shelve your ego and don’t micromanage your own care! I’m lucky that I didn’t perforate my colon for my bravado). I was scared about undermining the effectiveness of the immunotherapy by taking a steroid that dampens immune functioning. (However: let me underscore once more that an MD does not give one a better command of immune functioning than the head of immunotherapy research at MSKCC).
I needn’t have worries that I’d be on it forever — Bristol-Myers-Squibb won’t release any study drug whilst I am taking a scrap of Prednisone, and so Dr. Wolchok’s team is tapering it down as fast as I can possibly tolerate.
But: because I’m still taking it, I didn’t get this week’s dose. The whole trip felt like an expensive, greenhouse-gas-emitting social call. But the missed doses aren’t as concerning as they sound. Traditional chemotherapy has more defined pharmacokinetics (i.e. a defined half-life) — but these medications work more like a switch for my own T-cells, which could have been compelled to action after the first combined dose in August, for all anyone knows. Dr. Wolchok pointed out that these particular antibodies appear to be binding to their targets for months on end, and so I am likely still ‘saturated’ from the doses of trips past. And clearly my immune system is firing on all cylinders, judging from the last scan and the war in my gut. But: of course I will be grateful when it restarts; likely in two weeks. That will mark the beginning of the next part of the study, and I’ll get Nivolumab alone (the new anti-PD-1 drug being tested) every two weeks for the next 2 years.
I feel downright coddled at home. My sister Kaushiki has introduced me to the comforts of rice and clarified butter, which got me through the worst of last week. Anyone who has ever met my husband will not be surprised to learn that he is keeping me in homemade pasta. Without my protective, woolly blanket of Prednisone, this may be a chronic issue, and
I would be grateful for thoughts from anyone who has dealt with colitis and had foods they were been able to tolerate.
An aside about post-surgical lymphedema, as I know a couple of people who are following this & dealing with the same thing. Although the weight loss I’ve had this month has been kind of precipitous, it’s all but eliminated the edema. There is a great lymphedema massage therapist — Simone Gerhards — down by Chinook Centre — who I recommend wholeheartedly. The TBCC-related clinic is good, but can take time to access.
About those. There was some miscommunication on my part, and then some optimism-driven math last post. Overall, the reduction in the metastases has been 62%. The largest met shrunk from 7×4 cm to 3×2 cm. A small one in my spleen has disappeared altogether. And the third is reduced by about half. There are no new metastases, which is not trivial, given how aggressively it was moving over the summer. (Some patients on immunotherapies have shrinkage of some metastases, but appearance of new ones which makes ‘response’ difficult to define and make sense of).
I will have another scan in a few weeks (Dec 12), which I hope will show further reduction. We will see.
I have come to dread those scans: the recorded female voice (“Breathe in. Hold .. your breath.”) — the whir of start-up — the weird, warm feeling of the IV contrast going in — the inscrutable expressions of the techs afterwards — all of it.
And I’m still foggy on how I feel about the results. I think I hadn’t permitted myself much speculation. Dr. Wolchok was so happy when he shared the scan results, and I dutifully reported my own happiness (hoping the feeling would follow the words shortly thereafter as though pulled on a thread). One of the nurses said that I didn’t look very happy — and I was defensive about that (I was dizzy! dehydrated! Of course I’m happy! Thank you! I am grateful! Grateful!) But she was right. What I feel is sort of wary. I feel as though someone has picked me up by the scruff of the neck and set me back gently a few feet from a cliff’s edge. But the air still feels thin. I’m still frightened and a bit blunted — perhaps it will take some time to feel differently?
No one knows quite what the scan means. For some, this treatment may actually be a cure (?!). Others progress. So: on we go. I renewed my Canadian passport for 10 damn years last week — and I did weep a little at a post-piano-class red light yesterday, to suddenly note that the black stripe on my thumbnail has basically grown out. I guess my feelings may come in fits & starts like that?
So — in my wary, sort-of-relieved state, I’m carrying on. We had an early Christmas-like gathering with my brother Andrew, and Kaushiki, and little Ian from India — my mother and Sue were here — and Fred & his girlfriend Emily came from New York — so it was a houseful of family, and that felt wonderful.
Ben is bursting — out of his 18-month clothes, with his command of English, with his wanting to be heard and understood. He has this hilariously deep, declarative, joyful voice. His first knock-knock joke was delivered on the weekend (an important developmental milestone in the Zanussi family!):
Ben: Knock knock
Us: Who’s there?
Ben: Interrupting cow
Us: Interrupting cow who?
Ben: MOMMY! (wild giggles)
Mildly insulting, and extra wonderful.
Theo is having trouble with the comings-and goings this last while. He’s just at a place developmentally where he really notices when I’m away in New York, but can’t quite get his head around when I am coming back, and feels anxious until I do. Mom had the idea of a big calendar, and I might try that. We are giving lots of extra snuggles and love at home. He loves books and language so much, and we can bask in that reflected light together very happily. He’s so damn articulate about his feelings — the painful ones in particular — and I am working on the balance between (a) validating those feelings, and (b) not letting them reverberate & amplify in a way that is too scary for his 4-year-old mind. Suggestions are welcome.
Isaiah informed me a few weeks ago that he was “going to be an artist and live in a hotel” when he grows up, and is busy making homemade sock puppets and intricate folded paper structures, and building wooden things in his Grandpa’s garage. He loves his school — he is at River Valley, for those in Calgary, which we have been thrilled with. It has a Montessori stream and a regular stream, and is quite small and attentive. They’ve been really aware of our situation and committed to our family. I feel as though they really have eyes on my kid and wouldn’t let him ‘drop’ — I’m not even sure what I mean by that, but it is more comforting than I can articulate, especially for our drifty dreamer Isaiah.
Both Lauren and I have complex feelings about having moved to the private system — as I do about spending so much bloody money on treatment & flights for one person, when entire villages in the Phillipines were swept out to sea this past week — but we grapple with this as well as we can make sense of it.
I want to thank people for their miles. I feel so loved when I’m flying on one of those pooled-mile flights. People have been so kind, and I draw from that often. For example: someone sent me a book anonymously – back in the summer? — about a daughter and her mother near the sea, which I read to Theo again the other day, and which is so precious to me. I’m so grateful.
The pictures are by Michelle Wells — a great Calgary photographer who I would recommend in an instant. She took two strung-out parents and three past-their-bedtime boys and got some great shots, as you can see.
More after the next scan, likely.
Lots of love,