Sketch diary: The cancer shield

(This is a sporadic series of personal ramblings about my health issues. For past entries, see Sketch Diary. It has next to nothing to do with food, so skip if you’d rather not hear me rambling on about “teh cancer”.)

As I last wrote about in April, I was diagnosed with endometrial cancer (cancer of the uterus) in August 2011, and spent the rest of 2011 and much of 2012 hgoing through multiple surgeries and treatments (radiation therapy, no chemo) for it. While the system of diagnoses here in France differs from that in the U.S., it seems that my cancer was at a fairly advanced stage when it was diagnosed. I actually found out just how advanced after all of my treatments and therapies were finished, and I went for my post-treatment checkup with my ob/gyn doctor. He told me that I was ‘completely cured’, and then almost casually stated that at times, especially in the early going, he thought I was going to die. While my immediate reaction to that statement was to be aghast, if I were being totally honest it wasn’t a total surprise. At times I didn’t think I was going to make it either. (My ob/gyn is wonderful, but he has an oddball sense of humor. One time when he had to do something very painful to me, he suddenly started warbling ‘Singin’ In the Rain…I’m singing in the rain’ while he continued with the painful stuff. I didn’t know whether to giggle or kick him.)

It has been months now since my last course of radiation therapy. My slashed-up abdomen area still feels kind of stiff and weird (it took forever for the wound to finally close up - the last bit was still open 9 months after the last surgery), and I can’t get enough exercise because I can’t put any pressure on the supporting core muscles without shooting pains. And as I’ve written before all that stress on my body has turned my pre-diabetes to full blown diabetes, which is a bummer. I do still get terribly tired. I’ve learned to go with that, and just take a nap when my body says I need one.

But despite all that, I’m doing pretty ok, and slowly but surely getting better.

I’ve had people asking me whether getting cancer, and coming out on the other end alive, has changed me in some way spiritually or mentally or whatever. And you know, I can’t say that it has changed me a whole lot, even though in the early going I thought it would. I know that the standard script for cancer survivors is that they gain some sort of new perspective on life, that they start living ‘life to the fullest’, hugging their loved ones more, and so on. This seems to be a persistent belief - cancer makes you a better person. You hear it declared again and again. I’m afraid I’ve gone through no such dramatic transformation.

I still take life as it is. I don’t feel any special urgency to accomplish things extra-fast. I have plenty of days that I just dawdle away. (The fatigue factor plays a bit part here.) There are things I want to do, but I am taking my time organizing my thoughts as to what I want to do when.

And when it comes to my loved ones…I’m afraid I treat them the same as I used to. I still yell at my husband when I get mad at him, even though I am so grateful to him for his patience and loving care. I do try to stay in touch more with my mother, although that is motivated just as much as the regrets I have over not doing so with my father before he passed away last November.

I don’t think that getting through a serious illness makes one that special, or particularly brave. Most of us are selfish beings who want to keep on living after all. Surviving a fight with a major illness is just as much a matter of luck as anything else too. I was tremendously lucky: I had access to top class, inexpensive healthcare; a patient and understanding spouse; a job that let me set my own hours, even including taking time off without suffering dire consequencs.

And most of all, my cancer was diagnosed just early enough to be treatable, and it was the type of cancer that is considered to be very treatable. Just in recent years three people I respected a lot, two public figures (Steve Jobs, Satoshi Kon) and one in my family (my Uncle Isao), got a type of cancer that is not very treatable and hard to diagnose early, and didn’t make it. I am certainly not a better person than them because I made it. I am just luckier.

This brings me to the impetus for rambling on about cancer again - the big confession last week from promiment athlete slash cancer survivor Lance Armstrong. Cycling is a hugely popular sport here in France, both as a spectator sport and and a participatory one. We have a clear view from our house of one of the most famous stages of the Tour de France, the Mont Ventoux, and this coming May one of the stages is going to start right here in our village. Driving around in these parts on sunny days during most of the year means constantly dodging the hordes of bicyclists dressed in colorful gear.

I have a great admiration for anyone who achieves feats of physical prowess, including athletes. In order to be in the kind of condition that lets you cycle up the Mont Ventoux without killing yourself, you have to punish your body day after day to make it perform better. I love watching the Olympics for that reason. When I used to live in New York on a street that was part of the NYC Marathon course, I even passed out bananas to the runners a couple of years. (5 big bunches can go in a few minutes.)

With all of that, you’d think I would have been a big Lance Armstrong fan. But, I wasn’t - and it had little to do with the doping allegations. What made me feel uncomfortable about him was the way he seemed to use his status as a cancer survivor as a kind of shield, a halo, a perpetual Get Out of Jail Free card. Whenever someone would say or write something remotely negative about him, or imply that he was not as clean and aboveboard as he always claimed, he would pull out the Cancer Card: “I survived cancer. How DARE you question me?” (It seems that he was a very vindictive person besides.) And that’s just so - so tasteless and tacky really. He even seemed to use his foundation, Livestrong (which used to be called the Lance Armstrong Foundation) to polish his image, even if the objectives of the organization are noble. (Although they don’t really raise money for cancer research, they do help cancer patients in the U.S. get through the ordeal of treatment-related bureaucracy, which seems like a good thing. But there doesn’t seem to be much point in donating to them if you are not an American though.)

Prominent public figures who use their ‘cancer survivor’ status for PR purposes are dubious to begin with, but to use their status to cover up wrongdoings - well.

I’m repeating myself here, but: cancer does not make you a saint. Surviving cancer does not make you a hero. What makes someone a hero, someone worthy of admiration, is how their lead their lives in general.

One thing I promised to myself is that I will not use my cancer as a shield and excuse. If I screw up by reneging on a promise, or letting someone down, or even committing some kind of crime, it’s not because I got cancer. It’s because I am me.

Maybe I have been changed a tiny bit by cancer after all.

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Sketch diary: Cancer, the ladyparts version

Today I started a 3-week course of brachytherapy. Unlike the 6-week course of external beam radiation therapy that ended on Friday, which definitely made me feel pretty horrible, brachytherapy is not supposed to cause any adverse side effects. We shall see.

I know that many of you want me to get back the regular programming of recipes, food fun and Japanese things, but I thought I’d take this opportunity to describe the treatments I’ve been getting, and how they’ve affected me. I see a lot of information about what breast cancer treatment involves, but very little about Other Lady Parts cancer, which is what I have. So, if you are squeamish or not interested, you may want to skip the rest of this page.

……

I have what is called endometrial cancer, or cancer of the uterus. It’s at stage IIIB - my cancer had spread a bit past my uterus down to my cervix and vagina. I do want to emphasize that this type of cancer is supposed to be very treatable, and most patients that are diagnosed early enough as I was survive and lead healthy lives afterwards.

My treatment has been in three stages. The first stage was a full hysterectomy - the surgeons took out my uterus and cervix. A long incision was made in my lower abdomen to perform this surgery, and months later I still have a small opening there (about 5 cm / 2.5 inches long) that is leaking strange body fluids, itches, and prevents me from putting any strain on my belly. The side effect of this is that my back hurts pretty much constantly, especially when I’m standing. (Walking is a bit better.)

The second stage was a six week course (5 days a week) of external beam radiation therapy, where a beam of strong radiation was aimed at what remains of my lower lady parts. This stage made me pretty sick, as I described previously.

And now I’m in the final stage, brachytherapy. Once a week for 3 weeks, I’ll go to the radiology center where the oncologist puts a stick that’s about the size and length of a corn dog into me, leaves the room, and lets the stick thing zap me from the inside with radioactive waves for eight minutes. It doesn’t hurt, it’s just a bit uncomfortable and you know, slightly embarassing in the way a gynecological exam is.

I’m still feeling some of the after effects of the radiation therapy like diarrhea and fatigue, but I do think it’s getting slowly better. I no longer feel nauseous. I’m still very moody though. I tend to go from one extreme:

Cranky as hell

to the other:

Pathetic

I try to distract myself as much as possible with things like music, podcasts, audiobooks and marathon sessions of past and present seasons of RuPaul’s Drag Race. It’s a bit hard to do much reading, because my eyes are really tired much of the time, and for some reason I don’t have enough patience to make it through a full 2-hour movie - I either get a headache or fall asleep. Oh yes, and I make little doodles like the ones you see here.

Some other annoying side effects: small itchy welts appearing all over my body (though they disappear quickly), a couple of larger and painful blisters, and developing hemorrhoids because of the constant diarrhea.

And, there’s no other way to say it but -

My recent tests have been good though, so everyone is optimistic about me making a full recovery (or as full as one can get - I’ll have to watch out for a relapse in some years). If you take anything away from this though: ladies, please get regular tests, especially if cancer runs in your family. I had neglected to do so, until it was almost too late. (As I’ve said on these pages before, my mother got cervical cancer when she was the same age that I was last year.) Cancer really sucks, no way around it. Bah, cancer. Bah.

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Sketch diary: At a low point

Following up on the last entry from my sketch diary:

Just one more week to go with the radiation therapy, and it’s really tough. I was in a lot more physical pain just after surgery (or before surgery last year when I had a bad infection), but mentally, I am struggling.

I do have a lot of pain. From the constant diarrhea mainly, and its side effects. And other things. And then there is the debilitating fatigue, which makes me incredibly cranky and hard to live with.

I love food, probably way more than most people. Why else would I write about food? At the moment though, my relationship with food is not a love affair, it’s adversarial. The food that is the healthiest - most fruits, and just about all fresh vegetables - trigger the diarrhea. The food that I can eat without making my intestines feel so tortured are the ones that are high in carbohydrates - which make my blood sugar rise. (I should note that I had my blood sugar comfortably under control before all this with a combination of healthy eating, moderate exercise and medication.) Because I don’t know what I can eat right now anymore, I haven’t been eating much at all.

Mainly, this is how I feel. Mainly about cancer.

One more week of radiation therapy to go. Hopefully things will get better after that, and I can feel better about writing about food again. (If you’re interested though, I have been answering a lot of questions on Quora recently, some about food. I think this indicates I need to finally start the Japanese-things blog that I have been threatening for so long, but right now I dont have the energy to set up a new blog, so Quora has to do.)

Thank you for your patience.

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Sketch diary: it's harder than I thought

I am two and a half weeks into a six week course of radiation therapy, to zap the remaining cancer cells in my body. The course I am doing now is the type where a highly localized beam is aimed at my abdomen from all sides of my body. Every weekday, an ambulance-taxi, or The Guy, drives me to the radiotherapy clinic in Avignon, which is about an hour away from where we live, and back. Each session lasts about 10 minutes, and is completely painless. It’s the side effects that are the problem.

I know that radiation therapy is much, much kinder to the body than chemotherapy is. Still, it’s harder than I thought it would be. The biggest problem is the chronic diarrhea. It usually comes in the evening or at night, and sometimes it keeps me up until 3 or 4 AM. This doesn’t help the other big problem, the constant fatigue. I usually wake up feeling more or less ok, but by the time I’ve done the normal morning things like brushing my teeth and taking a shower, I am totally wiped out. I usually sleep in the car all the way to the clinic and back. Then in the afternoon I may have about 2, 3 hours of alertness before I’m lying down again. My concentration, any ability to focus on a complex task, is almost completely gone. I also have very little appetite - which is a problem when you write about food.

(Update: on Friday, I asked the oncologist how much radiation I am being exposed to during the course of therapy. The answer: 45 Gy or 45 Sv (sieverts). Take a look at the the xkcd radiation graphic for a general idea of that what is. That’s about 1.5 Sv per day, or one and a half yellow squares. It is pinpointed at a specific location on my body of course. But wow, it’s a lot. No wonder I’m not feeling too good.)

I have been keeping a sort of sketch journal about the way I’m feeling. Here are a couple of excerpts. These are just quick scribbles done in a few minutes so they kind of suck as drawings, but they convey more than I can do with words at the moment. I also didn’t scan them (well the burglars took our scanner so I don’t have one at the moment), I just took pictures of them. Anyway.

This page has a very inaccurate sketch of how the radiation machine thingy looks like on top. I lie on a stainless steel table, on a styrofoam mold of my body that keeps me in position. The round thing rotates around my body into 4 positions. The middle sketch is of me when I’m healthy, always curious, usually with a camera or notebook in my hand. (Yep that’s a camera.) The bottom pic is me now. It’s pathetic.

This is how I spend most of my day now, either whimpering and lying down or napping, or wondering if my hair is getting thinner because of the radiation or just general bad health. (It’s probably the latter. Plus I need a new haircut.)

And this is me, at the bottom, wondering when I will be able to go to an onsen (hot springs) in Japan again. Hopefully soon.

Drawing these has been strangely cathartic, in a different way from writing.

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