Wondering what to make of life before the Necessary End

It’s six months this afternoon since I went to the GP. I was 51 years old, the median age for menopause. I had symptoms that matched what I read about the symptoms of menopause, so I figured it was about to happen to me.

Wrong!!!

10 days, blood tests, an ultrasound, a CT scan, a bone scan and—worst of all—biopsies later I knew I had two separate primary breast cancers and so-called “masses” on my ovaries that might have been secondary breast cancer but might be ovarian cancer.

Either way, it wasn’t good.

A month after that, I’d deteriorated. The ascites was painful, incessant and demoralizing. I looked ridiculous and felt worse. I had 6 litres of the stuff drained out of my abdomen in late October. But it came back with vengeance. Surgery was scheduled for mid-November. The last week before surgery was hell. In retrospect, I should have abandoned all my work, cancelled my attendance at a conference I was due to speak at, and had surgery earlier. The hospital could have done it; the surgeon could have done it. But it took me some time to really acknowledge that it was necessary.

But by mid-November I *wanted* surgery!

10 days in hospital for surgery. Total abdominal hysterectomy. Bilateral salpingo-oophorectomy. Omenectomy. There were even tumours on my appendix so an appendectomy, too. The pathology after the surgery confirmed the masses on the ovaries were ovarian cancer. So I had three primary cancers.

I was out of hospital on 22 November. By Christmas I was driving, feeling much better, but agonizing over whether to do chemotherapy and tying my head in knots.

It was an impossible decision that, in the end, I could not make. I could not decide to do it; I could not decide not to do it. The medical oncologist offered me a middle ground: do Carboplatin only, rather than Carboplatin and Taxol. I took up the offer. First session was 7 January.

Now, I’ve just done my fifth session of Carboplatin. I’ve never felt so bad as in the 3 Bad Days at the end of the first week after each session. I haven’t lost my hair, but all my acrylic fingernails fell off, twice. The Bad Days will start again tomorrow, and once I get through that I just have one more cycle to go. That has really started to dawn on me: just one to go!

The cancer cells have responded to the Carboplatin. My tumour marker CA125 level is down to 9. This is good. I have no idea how I would have reacted had the cancer cells not responded to the platinum. Would I have castigated myself for not doing Taxol? I didn’t eschew the Taxol for sensible, medical, practical, rational reasons. It was entirely irrational. Indeed, I didn’t actually make the decision for Carbo-only: it was the only decision that I could make. I took a gamble, and for the first time in a long time, I’ve lucked out, as the Americans would say.

It’s been six months of hell.

And now, what? I go through what I called Period X and wait for the cancer to recur. I’ve had to buy new clothes, 2 and 3 sizes smaller than I wore 6 months ago. I’d like to plan a holiday. Six months ago, I didn’t know if I’d make it till Christmas. For the first time in a long time, I’m beginning to realize that there is some life left ahead of me before the necessary end.

Well, I saw out 2010. Here’s the state of play as 2011 starts.

The ovarian cancer has recurred. That means it’s not curable, if we thought it ever was.

This means that the breast cancers lost the game. They just weren’t up to the job, and got beaten by the better team.

My abdominal symptoms are recurring. I am once again pregnant with a small whale. I’m still in the early stages of pregnancy<g>, so it doesn’t hurt too much yet. But the fluid has been building up, little by little, day by day, over the last week or so.

Once again, it’s hard to sleep. I don’t much want to eat. My clothes are all 2 sizes too small. I’m slightly breathless (the ascites pushes up against the diaphragm, compressing the lungs). I get heartburn occasionally (again: the ascites pushes things around out of place).

The recent CT scan shows tumour growth on the para-aortic lymph nodes. They are near the spinal cord. If the tumours grow and push against the spinal cord, I can expect significant pain. I suspect I can feel some very very early effects of this, though not (yet?) what I’d actually call ‘pain’.

I’m likely to re-start chemo in the next week or two. The purpose is not cure: we’re past that. The purpose is to get rid of the ascites so I can walk, breathe, eat and generally live without feeling like I’m carrying a small whale around.

And, maybe, radiation to reduce the tumour on the lymph nodes.

I’ve read that one should have a clearly-defined purpose for treatment at this stage. It’s not to cure, so what’s it for? To extend life? To maximize short-term quality of life?

Yesterday, I told my oncologist that my aim is clear: I’m prepared to risk everything on my Last Great Tour of The World’s Great Hotels. I want to get on that plane at the end of February. That’s my aim.

She’s never one to issue bad news, so one has to assess everything she says in that light. But she did say that she thought that it was a reasonable aim, that I should discuss it with the medical oncologist (they’re the ones that choose and manage chemo), and generally left me thinking that maybe I would be able to get on that plane. Whoo hoo!

And the prognosis? If the tumours respond to the next lot of chemo, I have maybe 12 or 18 months. If they don’t respond, maybe 6 months.