A Small Update

It is another scan week, and I thought it would be a good idea to be posting more regularly about the scans, since the shrinking seemed to have reached a stall.  Over the last 12 weeks, the last scan results have been more or less the same, with no more shrinking tumours, but tumour stability is just as good as tumour reduction when it comes to living with this cancer.  And the experience for many people with the drug seems to be one where the tumour never leaves completely, but seems to become a more benign mass.

The scan from today showed much the same, with a wrinkle.  Paraphrasing the radiologist: 2 of the masses appear slightly smaller, one appears slightly larger.  Overall mass continues to decline.  The amount of volume change here is small, and could be chalked up to an variation between scans.  Small increases like this do not indicate recurrence and have been fairly common with the treatment.  In short, its mostly the same and we shouldn’t be too concerned about the slight increase in size of the one mass.  That is easier said than done, but that is our goal.

The next few scans will be telling.  And we will keep posting them every 6 weeks so you can be up to date.

Standing, still



It has been a remarkable few months.  We are in the middle of a hot summer and the boys are running from camp to camp every week.  We are nearing the one year anniversary of the start of the trial and Ursula continues to travel to New York every two weeks in order to receive treatment.

When we started, the situation was bleak.  The masses in her abdomen appeared suddenly and grew quickly. Prognosis was offered in months.  The treatments that were offered were either ineffective or unproven.  Our lives today are amazingly different.

We have been lucky enough to see about a 90% reduction in the volume of all the tumours.  And more importantly, Ursula feels well.  She is active, working a little, and other than the worry that accompanies every scan, has a pretty normal life.

The tumours have stopped shrinking on the regular scans.  We have had a series of three that have shown everything to be about the same in size over the last 12 weeks.  This is not bad news.  There are no recurrences, nor are there any indications that the treatment has stopped working.  It looks like this is the extent of the response we are going to get, and things are holding fast.  These masses could be small amounts of melanoma, scar tissue, or cellular remnants of the immune response that was a part of the treatment.

When we started this process we were told that there was a possibility of a “durable remission”, a phrase that sounds like “cure” but has lots of different meanings.  We may very well be looking at what a durable remission looks like for us, though.  A treatment that has reduced the size of the masses to something small and static. A detente with the devil.  This result is no less miraculous and no less appreciated by us.  We could live like this for a long time, happy with the outcome of something small and manageable.

I ran in to an old friend yesterday while picking the boys up from their camp.  She told me that she continued to follow the blog and that she continued to hold us in her families prayers, and it reminded me of all of you that are doing the very same thing.  We are endlessly grateful for your continued love and support, warm thoughts, prayers, and general beautiful human kindness.  We will continue to keep you posted with developments as they arise.

Spring, and doing ok.

DSC_0151I apologize for not updating this very often. Rest assured that if it’s lapsing, I’m probably doing well.

I feel sheepish at the boys’ school these days — we told them last summer that my prognosis was about 6 months, and now here I am marching about quite cheerfully. They must think me a bit hypochondriacal. But: I’d rather be judged  melodramatic than the alternative. I don’t begrudge anyone their sadness or their honest reaction, but it can be tiring to have everyone tearing up at the mere sight of me.

I am well. The last scan showed more shrinkage. I was worried about that one, because of the new-ish nail stripe (which remains).  None of the professionals seem worried about that nail, and so I’m trying to ignore it myself. I was very anemic for awhile, but iron replacement seems to have addressed that issue. I often need to sleep in the afternoons, which I think must be a Nivolumab side effect. And I continue to lose pigment in my skin & hair, which I welcome as evidence of ongoing medication effect. I may have to experiment with a new hair colour, so don’t be alarmed if I start resembling Marilyn Monroe. (So many other areas of overlap!)

I’m trying to live such that if one of these scans shows recurrence, I am content with how I’ve lived the six weeks prior. This includes a bit of work (4 hours a week?), and so I’m testing the waters there. I loved -love my practice so much, and I’m grateful to be able to do it. No one on earth has ever been so thrilled to remove the plastic wrap from their professional journals.

And the spring! — to be honest, I didn’t know if I would see this one, and so the grass all seems much grassier than usual.  I think that I planted most of the bulbs upside down last fall, so we’ll see what comes of that. Oh, well. For the boys, the main event seems to be the sprinkler rather than the flowers.

Back when I was on interferon, people (you know who you are!) gave us some gardening supplies & seeds for the boys to plant. To my delight, we are doing that together again this spring (in a raised bed for better drainage this time: live and learn.

much love,



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.


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!


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,


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



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.



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,