Wondering what to make of life before the Necessary End

We all know that cancer is treated with chemotherapy and that chemo causes hair loss. This is a Big Deal for me.

Before you go getting all “don’t be so vain” on me, imagine yourself going to a meeting with a potential new client with–what?–a wig and false eyelashes? Save me!

That’s the problem: the chemo treatment will last about 5 months (6 treatments, 3 weeks apart). Three months after that, the hair begins to grow back. Three months after that, and the hair will be short like a man’s short-back-and-sides. Another month or so to get to my normal length. So we’re talking about a year of bald. And assuming the best, then for the last 6 months of that time, I should be well enough to work–assuming the damned cancer doesn’t come back in that time.

Obviously vast numbers of people do chemo, lose their hair, and don’t feel like a freak. Good for them. Really. But it’s a big deal for me.

A friend recently suggested that I should be “bald and proud of it”. Proud? What could I be proud of? What remarkable thing would I have achieved? It’s not like getting another degree, or winning a new client, or doing some very clever bit of computer programming.

I really don’t want this hair loss thing. I really really don’t want it for a whole year. And I’m prepared to risk a bit of life for that year. So I’m going to take up the Medical Oncologist’s offer of Carboplatin only, and skip the Taxol. With Taxol, there’s a 100% chance of losing all my hair. With Carbo alone, I probably won’t lose my hair.

I wish I had better stats on this. I’ve read that, with Carboplatin alone, more than 30% of patients suffer hair loss; but I’ve also read that it is “rare” or “extremely rare”.

The proposed treatment is the standard: Carboplatin and Taxol.

The side-effects are not trivial:

• I’ll feel shitty for 1 week out of 3 (according to the doctors) or for 2 weeks of out 3 (according to every patient I’ve talked to).
• I’ll be impossibly tired (Ms Psychologist, who has a PhD, so she’s actually Dr Psychologist, says that fatigue is the #1 problem people face. Working becomes a problem.
• The chemo is designed to kill cancer cells, but it kills more good cells than bad ones. What happened to that brave old idea about “do no harm”?
• The immune system is seriously damaged, leaving you (ie me) open to infection, so that tiny infections can become lethal<./li>
• Nausea and vomiting are so common that the medicos routinely prescribe anti-nausea medication without even waiting for it to happen.
• I might develop an allergy to the drugs, I might suffer hearing loss or tinnitus (and I have enough of both, thanks), or peripheral neuropathy (can’t do fiddly things like buttons–does that mean I won’t be able to type?), or any number of other side effects.

But there are two side-effects that worry me even more than all of those:

• cognitive loss (aka ‘chemobrain’ or ‘chemo fog’)
• losing my hair (and eyebrows and eyelashes)

“Normal” menopause involves a gradual lowering of hormone levels, and the body (allegedly) has some time to get used to the idea.

Not me. I went through instant menopause at 6pm, give or take an hour or two, on 12 November 2009. Instantly, the body wasn’t pumping out estrogen any more. So it was to be expected that I may suffer from classic menopausal symptoms, and, that they might be stronger than “normal” because of the sudden effect of surgery.

For the first week or two after surgery, I was often hot at night. I also had periods of extreme cold, often in the afternoon, but sometimes at night. No quantity of blankets or clothes could make me warm. I was cold to the core.

Now, three-and-a-half weeks out of hospital, I’m suffering from frequent hot flushes. (An aside: For reasons passing understanding, these are known as hot flashes in the USA. Why?) I may be sitting at the computer doing something useful and suddenly I feel impossibly hot. I can live with that as a minor inconvenience during the day. But nights are hard. I can’t get to sleep if I’m too hot or too cold, and I wake up when I get too hot.

I’d do anything for one decent night’s sleep.

I wish to apologize unreservedly to any middle-aged woman at or with whom I’ve chuckled or laughed or joked about hot flushes.

Hot flushes are no joke. They occur about every 60 minutes, and last for 5 to 10 minutes, from about 1pm to 5am. If I’m asleep, a hot flush wakes me up. So I can only sleep for an hour at a time.

Not fun.

But like everything I’m going through, they’re not a symptom of the cancers. They are a result of the instant-menopause of surgery + the Tamoxifen I’m taking. The treatment causes the bad symptoms, not the disease.

While I was railing over the idea that Cancer isn’t a bloody journey I came across a website named http://www.thecancerjourney.org/. It’s allegedly a site for oncology nurses. Its animated and Flash moving images are so distracting that it’s hard to read the text.

I was particularly disappointed to see, on its front page:

Symptoms are the same as side effects

It seems to me that it is really important to distinguish between symptoms of the underlying disease and side-effects (often, but not always unwanted effects) of the treatment for that underlying disease.

I had my hair cut. It made me feel guilty, because I still *have* hair to get cut.

On the day of my first chemo session there was a young woman in the chemo room. She was perhaps in her early 30s, with gorgeous shoulder-length auburn hair. Long, silky, heavy, smooth. We didn’t speak, but I overheard that it was her first chemo treatment, too. She was doing Taxol and Carboplatin—the combination of drugs that I should have had, but couldn’t bring myself to do. I couldn’t do it; she could. She’s now somewhere in this city, and she doesn’t have hair any more. She won’t have even very short hair till Christmas. She won’t have that shoulder-length hair for maybe 2 or 3 years from now. I hope she’s OK.

There is something horribly cruel about a young, beautiful woman being left like that. That’s why I feel guilty.

I am tired of being tired. I’m tired of waking up tired. I’m even tiring of thinking about being tired.

It is so hard to plan. The day before yesterday, for example, I worked hard, did good work, had a great time. I was looking forward to finishing off the work yesterday. But no. I worked for about an hour and then went back to bed for most of the day.

I was warned that it would take two or three months after the end of chemo for the effects to wear off. And I was warned that the most-common, and most distressing, effect is the fatigue.

But the last chemo was 20 April. So it’s been three months! Isn’t that enough!

Gemcitabine is a drug used to treat, among other things, recurrent ovarian cancer. It is marketed as ‘Gemzar’ by Lilly USA, LLC.

The front page of the ‘Gemzar’ website links to a document named ‘GEMZAR Patient Therapy Guide: Advanced Recurrent Ovarian Cancer’. It’s at http://www.gemzar.com/Documents/pdf/OvarianTherapyGuide.pdf.

This document is in two parts.

The first is in large type, with pretty pictures, and the usual patronizing text written for patients:

“Facing a recurrence of ovarian cancer is not easy.” …

“Please use the therapy calendar at the back of this booklet to help keep track of your treatment plan. You may also want to use it to keep track of your appointments, side effects, …”

(I guess they think that middle-aged women don’t have calendars and don’t know how to use them. So they say they’ll provide one. But there is no calendar at the back of the booklet. So they’re patronizing and they can’t proofread!)

The second part is a section named ‘Highlights of Prescribing Information’. It’s for medicos.

Now you and I might think that the two halves would provide consistent information. But we’d be wrong:

Hair loss (alopecia) and rash

About half of the patients in the clinical trial experienced hair loss. This was not permanent. (p. 12 of part 1)

…

Alopecia — Hair loss, usually minimal, was reported by 15% of patients. (p.7 of part 2)