Still hair-challenged...

Is there life after cancer?

                Is there life after cancer?  There is no “after” after cancer, at least for me, but there is definitely life! While I’ve been told I will never be “cured,” only “in remission,” life totally goes on.

                I just took the kids this morning to the doctor to get six more prescriptions. Literally. If you need me, I will be at CVS.  But seriously, this time, I am happy to say, this stack of prescriptions is all for travel medicine.  We all need typhoid vaccines and anti-malaria drugs and mosquito nets, because we are going to South Africa in June. This is still surprising to me; a year ago, I was really, really sick. I couldn’t have imagined an epic trip with three kids. But that was then, this is now. We are getting back to business almost as usual.

                Why South Africa? The nucleus of this trip is that my 17-year-old son, Sean, is part of a Quaker service trip organized by Scott Carneal, the head of the English faculty in the high school at Sandy Spring Friends School. They do this project every two years, and Sean has been waiting for it to be his turn to participate. The school takes a bunch of high-schoolers to two villages not far from Grahamstown, South Africa.  At one, they do a lot of enrichment activities with extremely poor kids who are on vacation from school. They play soccer, do math, put on plays with the kids, work at a soup kitchen, and so on.  In the other village, they work with women and kids who are staying at a shelter for battered women.

                My whole family is joining Sean for the few days they are at the women’s shelter. I will be doing some beadwork with some of the young girls there, and possibly trying to help them market it more effectively. We are also taking some money raised by our church, Mill Creek Parish United Methodist in Derwood, to give to the soup kitchen there, which is run by the local Methodist church. The soup kitchen feeds local hungry children, and also a number with adults with HIV who need meals to eat just so they can take their medications.

                The other reason we are going to South Africa is that my husband, John, is from there.  We are going to visit his brother, and his cousin, and close friends.  We are going to do tourist things like visit the Cango Caves and the ostrich farms. I am finally going to get to see Robben Island.

                We are going to spend several days in Kruger National Park, one of my favorite places on the planet, where we have arranged to sleep, at one point, in a bird blind. That should be interesting! The mosquito nets will come in handy, there. They have deadly snakes and scorpions there; I hope not in our bird blind, but you never know. From experience, I can also tell you they have huge walking-stick insects and armored locusts and spiders the size of woodchucks. I have already started buying first-aid supplies and Benadryl ointment, and yes, I will have a bottle of Scotch on hand, for medicinal purposes only, of course.

                We are going to also stop in England on the trip over. It’s where John and I met and got married and lived for several years. We’re going to see old friends, and one of John’s brothers, who is living in London. We are going to do tourist stuff there, too, and show the kids some castles and such.  We are going to visit colleges. We are going to do some more work on my fear of heights, which will involve getting on the London Eye, a freakishly large Ferris wheel that I have successfully avoided until now.

                If you had suggested a year ago that we would be making such a trip, I’d have just looked at you and shaken my head. Not only was I feeling awful, but my youngest, Matthew, was having serious mental-health issues. I wouldn’t have dared take him on a trip that crosses so many time zones and is bound to screw up his body clock and his meal times and his blood sugar levels and so forth.

                But he is doing a lot better these days. Through medication (generic version of Zoloft) we have managed to get a handle on his serotonin levels. Serotonin was his basic problem, it seems, and worry about my illness is what really pushed him over the line. But with his meds and lots of intensive counseling, he is getting lots better. The panic attacks he used to suffer from are very rare now.  He will have one once in a while, usually before something exciting like a lacrosse game or a party, but we can usually talk him down if we give him a little time. This is real progress, for us.  He still occasionally loses his temper and has a China-Syndrome-scale meltdown (any of you who witnessed his tantrum in front of the Performing Arts Center at school a few months ago know what I mean). But again, instead of happening several times a week, this happens once every couple of months.  And often, we can head it off if we see it coming. So he’s improved, and that is why I can even dare to get on a plane to Africa with him.

                I also have to say, one of the side-effects of cancer, for me, is that I now dare to do more things than I used to. At this point, my mortality is not a day-to-day concern any more.  I don’t think I’m more likely to die soon than the next person. Where I am different is this:  I am more aware of my mortality. The clock is ticking for everyone, but now I hear it. The good side of this is I am more likely to say, “What the hell?” and try things, than I used to.

                For example:  twice in the last couple of weeks, I’ve wanted to go hiking and there was nobody else around who was willing or able to go with me. The places I was going to, in search of wildflowers to paint, were fairly remote and involved miles of walking. The first place was in a state forest in southern Maryland, in thick woods.  I walked for three hours and did not see one other person. This would have scared me back in the old days. But these days, it turned out to be really, really fun.  The second place I went was Shenandoah National Park. I left the house, by myself, at 5a.m. on a Friday. The kids got themselves to school just fine; the world didn’t stop because I wasn’t there to help find socks! Imagine!

                By 8:30am, I was on the Appalachian Trail, all by myself. I didn’t see anyone for some time, but then I kept seeing the same two men, over and over. Back in the day, this would have made me very nervous and I would have high-tailed it out of there, if I had been there by myself in the first place, which I wouldn’t have been. But then I would have missed the yellow lady’s slippers, which what I had come to find in the first place. And as it turned out, I ended up showing those two men, who turned out to be harmless guys from Rhode Island, the yellow lady’s slippers.  And they listened politely and said, “Cool,” but then I found and showed them a large snake. They got a lot more excited about the snake, than the flowers, which had been like a religious experience for me, and they took pictures with their smart phones and went away happy, but hey, they’re guys. And anyway, I went away happy, too.

              

Avoiding lymphedema

                Finally, after a long year with many doctors’ appointments for both me and Matthew, things are settling down a little. The appointments are fewer and farther between. Last week, I saw my lead doctor, Dr. Colette Magnant, and she gave me the big thumbs-up and said come back in a year.  Of course, during that year, I will also see my medical oncologist a couple of times, and my radiation oncologist, and my plastic surgeon, and the research nurse who is administering the clinical trial I’m in, and probably others I’ve forgotten.

                I’m tolerating the drugs okay. The clinical-trial drug messes up my stomach, but nothing I can’t handle. The Tamoxifen has launched me into Crazy Menopause Land. Hot flashes? Yep! Emotional moments? You bet! I literally got weepy in the greeting card department at Target this morning. Oh, my. Crankiness?  What do you think? You got a problem with that? Screw you!

                It’s sort of like being a teenager. The highs are pretty high, and the lows are pretty low. I’m sure I’m delightful to be around. Have you ever been to Yellowstone? In some of the geyser basins, you have to walk on wooden boardwalks, because there is only a thin crust of earth over the thermal features. You break through that, and underneath it’s boiling water. There are beautiful crazy colors, but if you fall in, you’re done. That’s what I’m like, right now.

And then there is something called lymphedema. A few days ago, I had an appointment with a specialized therapist who is an expert in preventing lymphedema. Lymphedema is where part of you—in the case of breast cancer patients, it’s your arm--swells up because your lymphatic system is screwed up. Basically, if your body was a parking lot, the lymphatic system is like the storm drains.  They drain runoff from all your other parts. Unfortunately, they are the first place breast cancer spreads. When I had my mastectomy last August, my surgeon removed nine lymph nodes from my right side. That is approximately a third to a half of the lymph nodes that are supposed to take care of draining my right arm and the right halves of my chest and my back. If this whole quadrant doesn’t drain properly, your arm can swell up. I have been told I will have to be watchful of this the rest of my life. Once you have symptoms, it is very hard to get rid of them.

                So far, I haven’t had any problems. But they are worried about me because I am going to South Africa next month. It’s a long trip; one of the flights is 14 hours long. And on long flights, a person like me who is missing a bunch of lymph nodes can suddenly swell up like a balloon.

                What can you do about it?  Exercise and stretching help. I have totally been working on those. I’m supposed to drink gallons of water, so I hope the seatbelt sign isn’t on. I’m supposed to eat healthy food for three days before I fly. Salty stuff makes you swell up and fatty stuff clogs up the lymph nodes you’ve got left.

 And you can’t drink much alcohol. Unfortunately, as I believe I have mentioned, I have a phobia of heights. That includes the height of 34,000 feet. And I’m a little claustrophobic.  Airplanes combine my two best neuroses! Until now, I’ve been able to fly, thanks to a naughty combination of Xanax and white wine. But white wine is out now, so I may have to investigate new pharmaceuticals. I’m sure that if I end up like the woman in the movie Bridesmaids, my helpful children will post video on Facebook for everyone to enjoy.

                The most attractive thing they are advising me to do is to wear a compression sleeve and glove on my right arm and hand. It is pretty darned uncomfortable, and it is claustrophobic in a whole new way.

And I am here to tell you these items are not glamorous. The sleeve is a thing that looks like Spanx for your arm, but it’s made from a heavier-duty fabric. The sleeve squeezes your whole arm, from your wrist to your armpit. You also get a very tight glove made out of the same stuff. It is so hard to get on that they advise you to tug it on with those big blue textured-rubber gardening gloves. And it is about as attractive as you can imagine it would be, to wear a girdle all down your arm. And I’m sure it will improve my attitude immensely.

You can buy expensive, exotically colored compression sleeves that make you look like the blue people from Avatar. You can get ones that are colored like Mehndi henna tattoos.  I am tempted to take a Sharpie and design my own, something with barbed wire and buffalo skulls, that I could wear later to the Testicle Festival in Clinton, Montana. But I don’t want to get too wacky. I don’t want to get arrested.  I will already be setting off the TSA’s metal detectors with my robo-boob.  I’ll be making my airline seatmates nervous with my hot flashes and my grouchiness and my in-flight stretching exercises. They’ll see me tugging at my compression sleeve with big blue gardening gloves and wonder if I’m some new kind of bald female underwear bomber.  Wish me luck!