Jess

It’s been a while since we posted any updates. I keep telling Lauren that I’ll do it, I’ll do it — and then I start thinking about Jess, and can’t write a word. So: I’ll talk about her for a little while.

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She was in my med school class at U of C, and then we both matched to the same psychiatry residency. The photo above is our cohort in the spring of 2004 (Jess is second from the right in a white tank top, standing between Barb and I). She was diagnosed with Ewing sarcoma in 2011, before her son Kalen turned one. I last saw her before Christmas. She died at home with her family in January of this year.

 

We only saw each other once every two or three months. Maybe that’s why I’m having trouble squaring her death with reality. The turnoff to her street is still there. Her texts on my phone are there.  My cues to think about her are still the same  – when I think about mom-and-baby relationships, for example — the area of psychiatry where she practiced.  I have this whole experience of peri-Jess, but Jess herself is gone.

 

One of her gifts to me was to make me feel less lonely. She was six months ahead of me, in terms of cancer progression. She reached her calm hand back to me when I moved to stage III, and again to stage IV. When my oncologist called in July to tell me about the abdominal findings, I told Jess before I talked with my family. I told her before I paged Lauren at work. I knew that she could handle it: that I wouldn’t drown her by telling her. 

 

On the flight to NY last week I watched the movie Gravity en route. Not my favourite. But there is a Venn diagram for facing a poor prognosis and floating around in space. It’s disorienting! And Jess was orienting. She was the only person in my life who could have filled that particular role and she was so generous with it.

 

We sat together over coffee at Cadence and were grouchy about mindfulness (a skill on constant offer to cancer patients). We didn’t want to be mindful! We were very ill-tempered about the present moment! We talked about leaving letters for our sons. We wanted them to know who we were, but we wanted them to be allowed to get on with things, too.

 

We put our hands on our hearts over the death of Calgary orthopaedics resident Spencer McLean – someone who neither of us had met or heard of in life, but who died of renal cell Ca in 2013. Jess had found his obituary, and we both felt less alone, reading it. He had seemed to do it so bravely: receive the diagnosis, get his Royal College exam written, say goodbye. He had so little time to make the transition. He went before us, and made us feel as though the whole thing was possible somehow.

 

Jess wasn’t compulsively polite. She didn’t do the thing where you run around and try to make everyone feel comfortable and important all the time. I used to think that was rather a failure on her part, until I was in her orbit and I just wanted to talk plainly about what was true, with plenty of silence as necessary. 

 

So maybe that’s why I was so mad – irrationally mad – about some of the reply-all performances of sympathy that came in the wake of her death. I didn’t want to read about how she “was so nice.” Because: did you know her? Jess would probably never have said that you were so nice (or that I was). She didn’t value that, exactly; or talk that way. I was so grateful when people said something that felt heartfelt, or was specific somehow. I wanted the reply-all (it wasn’t the public-ness that bothered me)… I was so hungry to hear other people’s stories about her. I just wanted a three-dimensional rendering.

I know that’s a little intense. And possibly undermining. Nobody knows what the right thing is to say. I didn’t say a single thing until now, for goodness’ sake. I couldn’t think of my stories about her in time. I didn’t get it right.

I think I just want to keep Jess from being papered over with blandness. She was so singular.

 

Willa Cather has a story where the protagonist dies, and the last sentence reads “… and Paul dropped back into the immense design of things.” I read it before I had lost anyone, and I thought (still think) it was so beautiful. That phrase has such grace and scale. But it’s hard to be graceful and universal about death like that when it’s someone close; and so young. I am reluctant to let Jess drop back in the design. Me, too, I guess.  

By way of update: I’m seven months into treatment now. The abdominal metastases have changed by -83%. A “deep and dramatic response,” in Dr. Wolchok’s words. I am so bloody grateful.

There are also some unnerving things. More Nivolumab data was released this week, and the data isn’t quite as promising as everyone’s hoped. Also, I have another stripe – on my other thumbnail this time – that has appeared in the last couple of months. It’s hard to know what to make of that, in the context of the visceral mets shrinking. Maybe I should start getting manicures so I’m not staring unhelpfully at my nails all the time. 

But, basically: we’re OK. Thanks for listening to me elegize my friend. She was something else.  Love to all of you. 

Merry Christmas!

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Christmas Eve, 2013

I’ve been giving Lauren a hard time for his last blog post. Very gloomy!

(Usually I am the more worried one. But he & I take turns spelling each other off with optimism)

I am feeling the most hopeful than I have in six months, and so I’m here to present a reframe: THE LAST SCAN WAS FANTASTIC. The melanoma continues to shrink, and is down by another 20%.

My side effects are fine; much improved over the last weeks.

Best-case scenario, I will be one of those lucky ones whose immune system keeps this thing in check over the long term. Even in the worst case scenario: I have more time.

Either way, we are going to decorate some cookies. The boys are full-on into Santa, and he will not want for shortbread in Calgary tonight. The weather has turned milder, so we are going to try to make a snow fort in the yard.

Then I’m going to work on my million-piece puzzle. It features about forty slightly different shades of snow, and Ben keeps slowly pushing entire sections onto the floor. Then he hangs his head convincingly and says “Sorry, Mommy” (with the ‘r’ pronounced as a ‘w’). Every day. It makes for another layer of puzzle-challenge.

Merry Christmas,

u.

Smaller, still

Winter has come early in Calgary.  It has been cold and snowy in a way we don’t often see.  Travel becomes complicated because of cancelled flights, American holidays, or traffic jams.  What used to be a difficult haul, has now also become a bit of a crapshoot.  Ursula ended up having a flight so delayed, that she had to find a totally different flight on an another airline, just to make a connection.  We feel the pressure of showing up and complying with the guidelines of the trial.  They have already been accommodating to us because we live so far away.  When planes and roads get in the way it is a little scary.

Ursula gets scanned pretty often now.  Every month or two, it seems, to keep tracking the progress of the tumours.  She had a scan on Tuesday of this week and while we have yet to see the official report the unofficial word appears to be “smaller”.  The masses are still there, but smaller in size.  It isn’t clear how much, but its visible to the naked eye on a scan.  Our doctors continue to be excited about the result, talking about how this is a very strong response.

There is more good news, too.  Ursula’s Gastrointestinal health appears to be returning to normal.  There are less concerns about inflammation, and the treatment is continuing without interruption.  There are little white patches of vitiligo of her arms, and she gets tired because of travel and the infusion itself.  But those are manageable problems.

What does this all mean?  Its not easy to say right now.  It is easy to think we have this cancer on the run and its going to stay away, but I was reminded by one of my patients the other day who’s husband who had been in remission for the past 10 years and had just had a recurrence reminded me the other day – “There is no safe amount of time, and even when its gone it never really goes away”.  What we believe to be possible is that the masses will stop shrinking or disappear at some point and then there will be a waiting for recurrence.  That feels like our next big battlefield over the next hill.

For the time being, Christmas is coming and we have gotten our presents early.  We are hoping for the same for everyone this winter.

Calgary – New York – Calgary – New York

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Hi!

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.

Scan results

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.

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Kids

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,

-u.

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Thanksgiving

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Nothing about this week is going the way that it should.  I should, for example, be in New York right now.  That is to say, I should know where my passport is, I should have been able to board a flight to New York with it, and I should be in a doctor’s office right now at Memorial Sloan-Kettering hearing this news first hand.  Alas, I am not.  Thank you, Tanya Fenkell and Fred for supporting Ursula through this.

When doctors talk about shoulds, as it applies to melanoma, the news is almost always bleak.  Someone with stage 4 melanoma should live for 8 months.  We don’t expect much more than that some days, even with the hope of treatment.  It is always good to be reminded of the shadow that is never far away from us about this.

That is what makes the news today so remarkable.  Ursula has had a CT scan yesterday and reviewed the results with the doctors today.  The medicine is working well.  The largest mass in her belly measured roughly the size of a smallish lemon 7cm by 5cm by 5cm.  It has shrunk in size to half a golf-ball or roughly 3cm by 2cm by 2cm.  If you are like me, and you look at those numbers, you say “wow, its half the size it was before”.  But of course, its much better than that.  From a volumetric point of view, we have gone from a size of about 175 cm3 to about 12 cm3.  A reduction in volume of over 93%.  One of the metastasis is completely gone.  It is such good news the doctor continued to refer to the results as “deep and dramatic response”.  From a tumour point of view, we could not have hoped for better.

The side effects of the medication, however, have taken their toll on Ursula and are a serious issue.  Her colon is so swollen from the medication that she is at risk of perforation, something that would exclude her from the trial and from treatment, were it to happen.  We knew, of course, that there were GI symptoms for the past 8 days, and that that she had lost about 10 pounds from the loose stools she had been having.  We didn’t appreciate how bad it was.  As a precaution, Ursula is not receiving treatment today, and will miss treatment until it gets settled down.  Our doctor has said very clearly, the half-life of the antibody (the anti-PD1) is several months, so the treatment response is not harmed by holding off a couple of weeks while we get things sorted out.

So, Ursula has started a medicine called prednisone, a medication that I see quite a lot of in the land of transplant medicine.  It can be a very challenging drug to take.  It works very well on the inflammatory response (which will help her GI tract), but the list of side effects is impressive.  Mood fluctuations, depositions of fat that makes faces round and humps on the back, appetite changes, and the list goes on and on.  We were initially concerned that the treatment response would be affected by the medication, but we have confirmed today that we were wrong about that.  She has started that medicine today to get her belly under control.

So, for everyone who has been praying, sending warm thoughts, wishing us well, hoping for the best, today is a day to celebrate.  The very best is happening today.  No less than a miracle.  A killer disease has been stopped in its tracks, for now.  Ursula’s family is set to visit us and spend some time with us in Calgary.  We have had our Thanksgiving turkey a few weeks ago, but it feels like a time to give thanks again.

Vitiligo, CT scans and the road ahead.

We are about to have a very important week.

However, it’s nice to start on a happy note. We have made a big deal about the thumbnail and how the melanoma streak is growing out. That continues. It’s about halfway gone at this point. In addition to that, Ursula has had a mole disintegrate off of her arm over the period of about a month. She has also developed these unmistakable pale white patches over her arms which are vitiligo, an autoimmune disorder where the body attacks melanin pigment in normal cells. Normally it’s an illness, in this case, it’s been associated with a better outcome. So on our way into this week, we are feeling pretty hopeful.

This past week has been challenging. There has been more tiredness and GI symptoms. Ursula is sleeping an extra hour or so every day and those GI effects from last treatment are back to stay. She has a prescription for Prednisone, which is an anti inflammatory with side effects impacting mood and energy. It’s going to be an interesting ride.

This week is important. We go to New York for a CT scan of Ursula’s abdomen. I will be there, as will Ursula’s good friend, Tanya. The results will be important to determine how things are going, but also if we will continue with the treatment. The best outcome is tumour shrinking, but even tumour stability or slowing is a victory. We will update you as soon as we have news to share. The scan date is Wed, October the 30th.