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My last short fiction instructor told us not to write about cancer. "It's been done," she said. Well, the hell with that. I learned in the last three weeks that I have stage III breast cancer. Writing, painting, and assorted other arts are how I process stuff, in addition, of course, to long conversations with friends. These conversations have begun in earnest these recent days, but I realized my Facebook page in particular was in danger of becoming a medical-update site. I do not want that. My life is still going to be about more than cancer, as much as that may not seem possible right now. Also, I don't want to alienate friends who are not ready to walk this particular valley with me at this time. For example, one elderly friend who called to cheer me up this week can't even handle the "c-word," and there is no way she will be up for any truly frank discussion of what's about to happen here. So she is advised to keep in touch with me via Facebook. People who are comfortable with the c-word, honest discussion and occasional cursing are welcome to join me here.

Tuesday, July 24, 2012

Post-travel update


Hello from a sweltering Olney, where the dew point is 76 degrees and we are wondering if storms expected this afternoon are going to knock the power out again. It’s hard to get excited about going to the grocery store, not knowing whether there is going to be refrigeration here this afternoon. The Internet has been playing hide-and-seek since before the big derecho on June 29, so I will be transmitting this blog update from one of our Olney Starbuckses, God willing.

It has been a few weeks of marathon travel. Since I last updated this blog, we have traveled through much of South Africa, and I have been to Montana and to Boston and Cape Cod. My kids have been in South African townships and West Virginian rivers and on the Appalachian Trail.  As miles and hours and weeks pass, life grows less about cancer and more about living. Each day, chemotherapy is farther behind me. So, I’ve had less to say in a cancer blog. (I’ve been saying plenty about other things, I admit, in other forums, and you shouldn’t get me started on the topic of assault weapons, or the Methodist church’s treatment of gay persons, or Comcast repairmen who waste my precious time.)

From a breast cancer perspective, the travel went just fine. The bionic boob did set off some alarms, resulting in extra pat-downs, most recently in Boston, where they couldn’t figure out immediately why I had metal parts in there.  They worked it out pretty quickly, no harm done. And the TSA in Boston also relieved me of my pink breast-cancer-awareness knife, which I always carry but forgot to take out of my purse. Doh! Can I blame it on chemo brain? Or turning 50? Or am I just a ditz? When I explained to the nice TSA lady that the knife had sentimental value, she let me mail it home to myself.  I am still waiting for it to show up in my mailbox.

My arm never did swell up, not even in that last marathon day of flying from Cape Town to London, London to Washington, Washington to Minneapolis, and Minneapolis to Missoula. I was in a stupor by the time I got to Missoula, and did not even notice that my Mom and friends had dressed up in goofy vests to welcome me at midnight at the Missoula airport! But my arm was normal-sized.

I had done everything right, from a lymphedema-prevention point of view. I was a very good girl and did not eat salty things for a couple of days before my return trip. (We skipped an excellent Chinese meal, on that account!) I did not drink much wine. I drank gallons of water. I did some of my little exercises, and I walked around on the planes, to keep the circulation going, but I confess I did not follow my trainer’s advice and bring my elastic training bands on the planes; that was one notch too weird for me.

Everything went very well, except for one thing:  the compression glove totally did not fit. I wore it on the way down to South Africa. But I took it off after just a couple hours on the way back; it hurt too much. One of the seams dug into my hand, between my thumb and my forefinger, and I developed a nasty blister that got infected and got in my way for more than a week. The compression sleeve was fine; I wore that on all the flights. My advice to anyone out there who is considering compression attire:  have a trained professional help you fit your compression glove! I was under doctors’ orders to not hurt my right hand or arm—they won’t even let me get my blood pressure taken on my right arm—but I managed to hurt my hand anyway. Live and learn.

The other thing that could have gone wrong was that Matthew could have gone off the rails on a crazy train. He never did! He suffers from a serious anxiety disorder, which is generally controlled well these days by medication and talk therapy. I was frankly terrified that we would mess him up by dragging him across eight time zones and turning his routine upside-down. We had seriously considered canceling the trip, at one point, for this very reason. But it turned out fine. We tried hard to make sure he was fed regularly, and with the right amount of protein and so forth. We kept the meds as regular as we could. And we had no problems at all. Amazing.

                Emotionally, this trip was complicated. It involved major highs and lows. In involved a memorial service, in Missoula, for a dear friend’s mom. It involved visiting two very poor South African townships, and working with absolutely poor children, some malnourished, and many orphaned by AIDS. It involved several most excellent reunions with friends and relatives.

I think some people had gotten the idea that this massive trip was my farewell tour. Well, thankfully, it wasn’t. It was my, “Hey, I’m back” tour. It was more fun than I can express. It’s really much better to go around making people happy because you look well again, than it was last year, scaring them because I looked so awful. Compare these photos:  The first one was taken in April, 2011. I had started chemo; I was only beginning to get really sick. My friend Steve’s smile is full of worry and his arm is barely touching me, as if he thinks I’m going to break:


Here is a photo from Missoula, taken just a couple of weeks ago. Same two people. I have about the same amount of hair. But the picture is completely different:

So it was a really great trip.

It was interesting how different cultures respond to cancer differently. In South Africa, people are definitely not as in-your-face with breast cancer awareness as they are here in the USA. There are no pink ribbons everywhere. Not one person asked me about my illness, although I did catch people trying to figure out what was going on with my hair.  In contrast, here at home, total strangers barrel up to you at the grocery store and ask you how it’s going and cheer on the hair growth and so on. I have read that, in some African cultures, cancer is viewed as the result of having been cursed. And to poor South African women, treatment is certainly not always available, and losing a breast can totally lower your perceived value as a woman, so it can be a grave thing, not the business of strangers in grocery stores. I had hoped my illness might give me common ground to talk with others about their illnesses—including HIV—but this did not happen once.

One cancer-related phenomenon that happened over and over was me being struck by the beauty of various sensory inputs. Last year, I couldn’t taste anything at all. During chemo, my hearing and visual perception were also messed up. Things didn’t sound right or look right. I was too sick to dance, even when I got the rare opportunity. And for a while, I wasn’t even sure I would still be here now. So, pretty often, during my trip, it would strike me as awesome that I was having a delicious glass of wine—and it tasted SO good—or I was looking at something SO beautiful, or dancing is SO much fun, I would just start to laugh. It is a shame you have to get so sick to enjoy yourself so thoroughly. Probably my family gets tired of hearing about such things.

From a plain tourist point of view, this trip could not have been better. If you like animals or birds or breathtaking scenery, you should visit Kruger National Park some time in your lifetime. (Stewart, Alice, I’m talking to you!) John and I decided that the most beautiful places we’ve ever been are Victoria Falls, in Zimbabwe, Lake McDonald at Apgar, Montana, and the Olifants River in Kruger National Park. Looking down on the Olifants River from the rest camps at Letaba or Olifants is like peeping into Eden. Look, here are a bunch of elephants frolicking. Here are twenty hippos. Here is a fish eagle. Over here is a ginormous lizard. My goodness.
Olifants River

We had an incredible night at Shingwedzi, next to a small river. We were miles from anywhere. We slept in a bird hide. We had no electricity. We had an outhouse and a barbecue, and a river full of hippos. We chased out the bats. We had Murphy beds for all of us. While making up my bed, I noticed there was something white between the wooden slats. I thought it was a wasp nest, and I asked John what we should do about it. Being John, he poked the wasp nest with his finger, whereupon it turned around, and a long thin reptile tail came out, and I screamed, because I thought it was a deadly snake. But it was only a big lizard. Wish I’d gotten a decent photo of the lizard, but all I’ve got is a couple so blurry you can’t tell it is a lizard. Hey, it was dark, and I was busy freaking out. John eventually got the lizard out of my bed frame and took it outside. I had difficulty sleeping, because I got to thinking about what sort of bugs and scorpions and such the lizard must have been eating in there, under my mattress. So I got up and wandered outside, at about 2 am, and was met with such an expanse of stars as I have never seen. We were probably a hundred miles from any city lights, and the air was crisp and dry. Sean and Julia and John joined me out there. The depth of the star fields was amazing. By morning, it had clouded up. I think God wanted us to see the stars.


The little hut you can barely see is Shingwedzi, the bird blind we slept in. The water is full of hippos.

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