Sunday, September 30, 2012

Me Versus the C Word

I have cancer.  It's not the first time.

Yes, that's right, I have cancer right now, and it's not my first entry in the cancer rodeo.  That sounds pretty scary, doesn't it?  It is scary.  Cancer is scary.  Cancer treatment is scary, too.

Nearly 10 years ago, I went in for surgery to have an ovarian fibroid removed.  I had no thought of cancer, really.  My doctor didn't think the fibroid was cancerous.  It wasn't.  But while the surgeon was looking at my innards, she noticed that I had some enlarged lymph nodes.  She removed one and sent it for a biopsy.

I remember when I was told that I had cancer, I thought the doctor meant that I had ovarian cancer.  I guess I was a little muddled after the surgery.  What I had was Non-Hodgkin Lymphoma.  Not just any old lymphoma, but an uncommon variety, Mantle Cell Lymphoma, that more typically affects people 20 years older than I was at the time.  If you're interested in reading more about it, try here

They sent me home to recover from the surgery.  I'd waited too long to have surgery and they couldn't do it laparoscopically,  which in hindsight was a good thing.  If they had done it as a laparascopy they probably wouldn't have found the cancer.  My cancer history is a story of fortuitous coincidences like that, as I'll explain later.

I spent eight weeks healing from the surgery.  Once I had recuperated, I started chemo treatments.  They put me on a regimen called Hyper-CVAD-MTX/AraC supplemented by Rituxan.  I think the Hyper stands for Hyper-intense. I had to have my treatments in the hospital, a week each month for eight months.  I usually spent a couple of additional days in the hospital after the treatment was done, while they gave me blood or plasma transfusions and tried to get my white cell count back up.

I didn't throw up a lot, after they spent a lot of time finding the right anti-nausea medication.  One medication they tried was Haldol, an anti-psychotic.  Cancer treatment involves a lot of using medications for purposes for which they weren't originally intended.  Haldol gave me weird muscle spasms in my neck.  I couldn't stop turning my head to the left.

I also completely lost my appetite and stopped eating.  My doctor had to prescribe an appetite-enhancing medication.  I hated taking it, but it worked.  Along with the anti-nausea meds and the appetite enhancer, I had to take a whole fleet of antibiotics, anti-fungals, steroids, drugs to counteract the side effects of the steroids, drugs to protect my kidneys from other drugs, drugs to prevent allergic reactions to the chemo drugs.  My beneficial intestinal flora died and the less beneficial ones overpopulated, so that as Jay Lake put it, it was "like winning the toilet paper lottery".  Every hair on my entire body fell out, not just my scalp hair but my eyebrows and lashes and even my nostril hair.

I was off work for a year.  By the time I finished treatment, I could barely walk.  I lost 40 or 50 pounds.  I couldn't concentrate enough to read a book or watch an entire movie.  I had become very isolated, seeing no one but the nurses and my doctor, and my Significant Other.  My immune system was too weak to allow me to go out in public much, and I was too weak to visit with my friends, even on the phone.

During that time I learned a lot of things about cancer treatment I'd never known, despite the fact that both of my parents died of cancer.  I didn't know that chemo can cause so many effects on the brain when it's not even being given for brain cancer.  Chemo patients learn about something called "chemo brain", which describes how thick-headed you get on chemo.  I don't remember some things that happened just before my treatment began, and my memories of that time period are foggy.  That's chemo brain.

A month ago I went in for a routine mammogram.  I'd recently been having a lot of health problems, which don't have any relevancy to the mammogram, but it's important to the overall story.  My primary care had ordered a CT scan for me earlier, to look at my lungs, but I'd had to cancel because I didn't feel well that day.  I hadn't got round to rescheduling.  The mammogram found enlarged lymph nodes.  I called my oncologist.  I already had a routine followup scheduled with him, the first one in quite a while, but it wasn't for another month and a half.  I wondered if I should see him sooner.

I got a call from the Imaging center to schedule a CT scan, which I thought was to reschedule the one I'd canceled.  Then they told me it had been ordered by my oncologist.  That worried me.  I got more worried when he left me a voicemail message to tell me he suspected the lymphoma was back.  I spent a weekend feeling pretty anxious as I worried about what my treatment would be this time and whether I'd be able to work during chemo.  The oncologist told me this time I won't have to do inpatient treatment; I can go to the chemo infusion center once a month for my treatments.  The treatment shouldn't be as hard on me this time.  If this had happened three years ago, the treatment I'll be having wouldn't have existed.  This time I'll get Rituxan again, combined with a new drug called Bendamustine.

When I read the potential side effects of both drugs, they're the same: nausea, vomiting, constipation, diarrhea, fatigue, loss of appetite.  The same stuff I went through last time.  Chemo is largely composed of giving you poisons to kill the cancer cells.  Unfortunately, that means killing some good stuff as well.

I have a biopsy tomorrow to confirm that it's really lymphoma.  I start chemo on October 10th.

I'm still scared, but I'm not as scared as I was.  I have a good doctor, and a great team of other medical professionals looking after me.  My doctor thinks my prognosis is good for another full remission, though it probably won't last as long this time.

Everyone knows there is no cure for cancer.  But until I had cancer myself, I didn't really understand what that meant.  The variety of lymphoma I have almost always reoccurs.  It's just a waiting game to see when it will come back yet again.  And each time it will get harder to treat, harder to force into remission. 

When I found out that I had cancer, I thought about my parents.  Neither of them lived past age 60.  My father was only 53.  I'll be 52 in a month.  I've often wondered if I will live past 60, either.  I'll just have to wait and see. I feel optimistic.  Not only will I be less isolated this time, I know someone else who's going through a similar situation and somehow that makes me feel less alone.  And I have someone who loves me and will look after me, and great friends, and coworkers who are kind and caring.  There's a lot to be said for a good support system.

Deep breaths. I got through it last time, I can do it again.