On my disease

I hadn’t wanted to discuss details of my disease and current health status here, since I prefer to focus as little of my attention as possible on the medical part of this ordeal. My body demands enough attention and care and medication as it is, none of which is fun, and I have much better things to do when I am able.

But I know some of you are concerned and those closer to me have questions that fuel worry. Usually more information helps reduce anxiety, but because in my case none of the information is particularly comforting, I have refrained from sharing details. However, if it helps to understand more, I offer the details below. And some people are simply curious. If you’re not, you probably won’t want to read this, as it’s full of detail that really isn’t relevant to anyone but me. (More posts of general interest coming soon!)

I also still find myself getting annoyed when people offer advice that is not relevant to my condition, and I’m hoping to discourage that. (I think invalid advice is irritating because I have to either politely ignore it or waste my time and energy explaining why it doesn’t apply to my situation—all while thanking the person offering it for their good intentions. I suppose I still have an excess of pride that is offended at the implication that I might be ignorant or might not have done my research.) So here is the explanation.

me in Muir Woods

A recent photo of me in awe at the redwoods in Muir Woods, California. By Roy Cross.

I have a high grade, stage four uterine leiomyosarcoma. This is a rare and extremely aggressive form of cancer. It is not curable, and it’s terminal. Mine has a particularly fast growth rate. The best treatment for this disease is clean surgical excision that doesn’t disturb the tumour and scatter the cells around, for this sarcoma spreads and takes root and grows elsewhere very readily.

Unfortunately it was not possible for all of my tumours to be removed. Nor was it possible to remove them all cleanly. The original uterine tumour was already enormous (like a cantaloupe) and had spread and adhered to adjacent organs. I was scheduled for a complete hysterectomy, and simply removing the organs with the tumours would have been ideal. But the surgeon told me afterwards that once she saw how extensive the tumours were, she wasn’t sure she would be able to get them out at all; she thought she might have to just close me right back up with all that still inside. (I was close to five-month pregnancy size by then, so that would have been horrible.) She did her best, however, scraping out what she could, removing everything I could live without (like my appendix and many lymph nodes) along with my reproductive organs–this is inelegantly called “debulking”–as well as a section of intestine that was close to completely blocked. But there was a three-centimetre tumour embedded in my bladder that they couldn’t get to. In any case, it was clear the excision had not been clean: there were certainly lots of sarcoma cells all through my abdomen and pelvis, and these wouldn’t be wasting any time in developing themselves into more extraordinarily fast-growing tumours. As well, we were already monitoring small nodules in my lungs. After surgery, she was blunt: I would die of this. Treatment might extend my life by months only.

In retrospect, I know that my first symptoms of this disease appeared over Labour Day weekend last year. I had a newly developed hernia in the same area (I can laugh now at how offended I was by this minor health complaint!), so I attributed the strange pelvic pain to that. The pain went away after a few days, and mostly I was fine until December. I recall going for a nice hour-long run on a Thursday in the country, feeling so grateful for my good health at fifty—a milestone I’d reached in November. The next night I was experiencing some pelvic pain again. I spent the rest of the weekend on the couch in strangely variable pain. By Monday my abdomen was distended too, and by Tuesday I could hardly walk. So I went to the doctor, who sent me to emergency so I could get scans right away.

The unfortunate thing about this disease is that even in scans it looks just like the benign uterine fibroids that are so common to women and don’t usually require any treatment. The extremely rare sarcoma version can’t even be diagnosed without surgical removal—except in cases like mine where it grows so wildly it clearly is something else. Because I had just turned fifty, I was also expecting strange things to happen with my hormones and reproductive organs, so I wasn’t alarmed. Assuming it was just a fibroid, my gynecologist told me to make a follow-up appointment in a year, revising that to six months when I expressed some concern.

In January, I discovered a small lump protruding from my lower abdomen. Lying down, I could see it (I didn’t have much belly fat), about the size of a plum. I thought it was an ovarian cyst because of the location, but it was actually my uterus being pushed there by the tumour. By the next week, it was the size of an orange. I couldn’t get another appointment with my gynecologist for a few weeks, so I went to my GP in the town where I had my country home. He was alarmed and got me in to see a gynecologist at the local hospital the next day. She was also alarmed (she kept exclaiming “mon dieu!” (my god) throughout the ultrasound) and immediately called a gyne-oncologist at a bigger university hospital in Sherbrooke, quite far away. She noted the risk of sarcoma. But that referral got lost somehow, and I wasn’t called for an appointment for another ten days.

Meanwhile, the thing kept growing. I managed to get an appointment to see my gynecologist sooner, and she referred me to the gyne-oncology team at the Glen, the new McGill University super-hospital in Montreal. It was clear by now that surgery was without question urgently necessary, and I was going to go with whatever hospital could get me in first. But the wait was still going to be weeks. February was a frustrating month. We got through it with jokes about pregnancy and Aliens. I went on medical leave halfway through the month as I was in too much discomfort to function normally. Finally I got a surgery date, March 8.

By then I was seriously anemic and in respiratory and cardiac stress. The surgeon had me admitted a day early for a heart ultrasound; she wasn’t sure I would be fit for surgery. On admission, my resting heart rate was 123 due to fluid build-up around my lungs and heart. I was pretty sick. The tumours were growing so fast that they were outgrowing their blood supplies and necrotising, bleeding into my abdomen to cause pleural effusions, and causing all sorts of havoc. This necrotization is what had made me ill in September and December. The great variability in my symptoms had made it very difficult for me to judge the seriousness of my condition—though it might have tipped off the doctors earlier.

Once diagnosed post-op, I was advised by others with this disease to see a sarcoma specialist, and my father was very anxious that I go to Memorial Sloan Kettering, the international cancer centre in New York. There I saw one of the only doctors who specializes in this precise disease. She didn’t have any more hope to offer me and simply recommended the chemotherapy protocol (which her research had established) proposed by the Glen team. I was interested in immunotherapy, but no trials have been successful with this disease. Nor are there are any open clinical trials for other chemotherapies. She noted that even with complete resection, recurrence is 100% with this disease at this stage. Even at earlier stages, recurrence is expected, though some people can go a year, sometimes even many years, before that happens.

A month after surgery, I had another CT scan. That three-centimeter tumour had already grown to nearly eight centimeters, and there were a couple of new tumours at around three centimeters (diameter) each. In total, I already had about fifteen centimeters of tumour in my abdomen, up from just three centimeters in one month. As I said, this thing grows fast. I was not surprised, having witnessed it growing visibly from the size of an orange to a cantaloupe in the month I was waiting for surgery. Luckily, none of the new tumours were yet doing too much damage: they weren’t causing bowel obstruction, they weren’t in my liver or bone. They do cause considerable discomfort and pain when I move around too much, so they have reduced my mobility. But sufficient pain medication helps me get past that, so I can still go for slow walks. I can no longer do any real exercise or gardening though, which I very much miss.

That crazy growth rate was what led me to try the prescribed chemotherapy (gemcitabine and docetaxel), despite its small chance of having any effect. I have just started the second half of the recommended six three-week cycles of chemo. My last scan showed that the chemo seems to be working to slow the growth. It’s not shrinking the tumours as the doctors had hoped, but at least it’s giving me a bit more time, which I very much appreciate, especially at this time of year. It’s expected that the tumour growth and multiplication will resume at its previous rate once this chemo is done. My gyne-oncology team may propose other chemo treatment options after a rest period, though all have a low success rate. The tumours are not operable, nor is radiation an option with multiple tumours.

So that’s where I am now. The modest success of the chemotherapy has meant adjusting to a new but very temporary normal. I’m only a bit sick with chemo side effects (I’m very fortunate to be tolerating it so well): mild nausea and heartburn, both controlled with medication; sensitivity in my fingers that makes typing slightly uncomfortable; an itchy rash a couple of times; a bitter taste some days; and mild fatigue and general unwellness on occasion—with only one day so far of serious, sleep-all-day fatigue. I’m also dealing with the discomfort of lymphedema (swelling due to removed lymph nodes and perhaps more tumours), which means I need to be horizontal when possible. All in all, I’m living almost –about 75%– as usual at the moment. However, even though it doesn’t quite feel like it, I also know I’m dying. When the chemo stops in a couple of months, the tumours will grow and spread, and I’ll get very sick again then die.

Unless, of course, there is a miracle of some kind. But rather than count on that, I’m preparing for a peaceful end.

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7 thoughts on “On my disease

  1. Susan, you are the only one who knows what you are experiencing and therefore the only one who can make decisions for your care. Your health report was done so articulately. Sue Sent from my iPad

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    Liked by 2 people

  2. I wish I could know you in real life. I’m so appreciative of how you are choosing to share this journey, and I can imagine that we could have a grand time talking about everything from Sloan Kettering (where I also received an opinion from Dr. Hensley) to the “cancer YaYas,” as one of my docs said, to our gardening tips. Thank you for sharing this.

    Liked by 1 person

  3. Susan, I came across your blog and I am so inspired by your willingness to share your journey. My mother is currently battling ovarian cancer, which also was found too late. Sharing your story will undoubtedly save someone’s life, as women’s gynecological cancers give such vague symptoms. Thank you – I wish you the best!

    Liked by 1 person

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