A New Season

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We have been in a holding pattern.  We still have three masses.  They have been about the same size for the past few months.  The most recent tension has been with one of the masses that had bucked the general trend and was hinting at getting larger.  That spectre of recurrence has been on our minds a lot.

Today, Ursula has been in New York, getting her regular six week scan and dose of Anti-PD1, and got some great news.  The masses are shrinking again.  Or, more accurately, it is clear that the trend is that they are still shrinking.  In fact, they are all still shrinking.  Even the one that looked like it was growing got smaller.  We don’t have all of the metrics, but the overall report is clear that the trend is for slow reduction in volume as the treatment has continued. It also sounds as though there was a small error in reading the scans that made it seem like one of the masses was growing.

It is a clear reminder of where we are and how much we scrutinize, ruminate about, and otherwise get caught up in the tea leaves that are the small details of reportage.  And as we do, we are misled by some of the minutiae that is offered.  The doctors seem to have perspective on this; they seem to know that small picture is too easy to get caught up in and that they are taken aback when we come with questions about the possible worst case scenarios that we dream up.  In spite of the worry, we seem to be enjoying the best of responses still.

Lest you think that the masses trending smaller could be a mirage as well, there was more encouraging news.  The reduction of volume has passed a threshold in the study where Ursula is now classified as a “strong responder” which means they are going to reduce the number of scans needed from every six weeks to every twelve.  It means we will get more anxious in between scans, but the reason why is paradoxically reassuring.

On a completely different note, I had someone talk to me recently about the blog and the impact that it had on her.  She shared a story that is humbling and hopeful about the loss of a parent when she was young, and how reading about our decisions with the kids and what we share with them was healing to read.

As I sit typing this, all of the boys know what is going on.  Our youngest, who is 3 and a few months, can tell me that mommy is in New York right now.  And that she is getting medicine because she is sick.  And that she will come home tomorrow.  Our oldest, is asking about the scan results and wants to know how good or bad it is.  Our whole routine changes when mom is away, and yet we have done it so often over the year, that it is utterly normal.  There isn’t anxiety from them, it is woven into what we do with our lives. I can’t tell you when we crossed the threshold into regular, everyday cancer travel and treatment, but we are clearly there.  This is possible because the treatment is working and we aren’t grappling with end of life issues today, but it is also possible because we talk about it all time.  I can’t tell you if we are doing it right, but it feels good not to be keeping secrets and talking around it.

We continue to enjoy warm thoughts and wishes from everyone, and we are continually showered by small gifts left at our door, colleagues giving warm thoughts through cards and books, and support from everyone in general.  We will update as often as we have news to share, and will continue to enjoy this especially warm autumn.

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

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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,

u

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.