Crocodile, the other white meat

Hello! Greetings from Phalaborwa, South Africa. We are on the second leg of our family vacation/visit to relatives/service-mission trip. We had an excellent few days in and around London. Last night, we boarded a Virgin Atlantic flight for Johannesburg. My husband, John, was born in Johannesburg and grew up in Cape Town, and we are visiting relatives and old haunts, among other things.

What has this to do with having cancer? Not very much, I am happy to report! The travel-related cancer-related problems we feared for me have, so far, not materialized.

I did attract a little extra attention from the TSA when we first got on the plane in the United States. After I went through the first metal-detector machine, they sent me for further examination into the machine that gives you the invasive body scan. This was, I am sure, because I have an implant called a "tissue expander" on the right side, where I had my mastectomy.  It has a metal valve in it, and I am sure that looks sketchy to any TSA agent reading an x-ray machine in an era when terrorists are threatening to implant explosive devices in themselves.  But when they x-rayed me the second time they quickly figured out my story, and with no embarrassment or delay or hassle to me.

The other thing I was afraid of was my arm swelling up, which is called lymphedema. They took out so many lymph nodes under my right arm that I was told to be very careful on long flights from now own. The lack of pressure in the plane cabin can cause that arm to swell up, and it's hard to ever get it back down to normal size once that happens.  To prevent that, you have to drink gallons of water, avoid alcohol and avoid salty food for a couple days before you fly, and walk around and stretch a lot while you are on the plane. I also let John carry my backpack, which is heavy. And I wore a compression sleeve and glove. The sleeve wasn't too bad, but the glove had a seam which pressed into my skin next to my thumb and was very unconfortable.  It also made my fingers and thumb turn purple, after 11 hours or so. But my arm didn't swell up!  And nobody reacted to it at all except the flight attendant, who seemed to know what it was and was very pleasant and brought me extra glasses of water. All in all, the trip went fine.

The trip from London to Johannesburg was about 11 hours long. I was trying not to drink, which may have been a mistake since I hate flying and found it very had to sleep. I probably should have just had a drink and that would have helped. Fortunately, the plane was nearly empty.  This was good because Julia was quite sick with some sort of flu, including a fever and chills, and we were able to get her four adjacent seats so she could lie down and sleep.  She was a good bit better today.

Today we rented a Volkswagen van and drove about five hours, from Johannesburg to Phalaborwa. This is a mining town just outside Kruger National Park. We are in a rental cottage in town, but even so, we were told to keep doors and windows closed or the vervet monkeys and baboons would come in and eat our cookies.

The cottage is inside Sefapane Lodge, which is a nice hotel with restaurant in an African-style compound. We ate dinner outside next to a big fire. I had a crocodile kebab. Really, I did. It tasted like some sort of very firm fish and was delicious. I probably was drinking the wrong wine; what pairs with crocodile? Not the cabernet I was drinking? Oh, well. There was also an outdoor bar that could have been quite romantic except for two things:  1) my three children; and 2) the UEFA Euro Cup 2012 soccer tournament, which attracted some old-school South African brandy-and-coke guys to the bar to watch soccer on the big-screen TV. Oh well, another time.

It is winter here, which, in this part of the country, means it gets dark around 6pm and is cold and clear. The low is supposed to be 3 or 4 degrees Celsius tonight, or about 40 degrees Fahrenheit. The stars tonight are crazy. I saw a shooting star. I showed the kids the Milky Way. In many ways, it feels like Montana.

Tomorrow, we are off to Kruger Park, where we plan to stay overnight in a bird blind. Wish us luck! Hope they have warm blankets!

The best hugs ever

Have you ever had a hug so good it made you cry?  I had a couple of those yesterday and today!

We are currently in London, England, on the way to South Africa for our big trip.  We are staying in a house in Ealing that John found on the Internet. The street outside is still decked out with lots of Union Jacks in celebration of the Queen’s Jubilee.

John and I both went to Oxford, and we got married there, almost 25 years ago, and we lived in London for two years after that. So, in some ways, this feels like going home. We’ve spent the last two days seeing dear friends who I haven’t seen since before I got sick. I guess it was frustrating for them to be on the other side of the ocean from me while I was so ill; they have certainly made it clear to me the last two days that I am loved and they are glad I’m still here. It has been an incredible couple of days.

We saw John’s old flatmate from Oxford, David, who also ran cross-country with him, and his wife, Annabel, and their kids. We took over their house and ate and laughed and napped and strolled around Kew Gardens.

We saw our dear friends from Oxford, Alice and Stewart, who served us an amazing meal. Homemade baguettes. Homemade lemon tart. Homemade chocolate cake. We talked for hours.

We saw my old colleagues from work, Fran and Keith, and their daughter, Charlotte. Charlotte was celebrating her first Communion this morning at Blackfriars in Oxford, where I used to occasionally worship, 25 years ago, with my friends, Peter and Marg. It was extra special because so many people I used to work with at the British Council of Churches came in for the service, including my friend, Elisabeth, who flew in from Jersey for the occasion, and whom I hadn’t seen in maybe 20 years!

After church, but before the Communion luncheon, we made a brief stop at our old college, Lady Margaret Hall, and showed our children the highlights:  Here is what an English dorm looks like.  Here is the college bar, where I met your father. Here is the chapel where we got married. There, under that tree, is where your father first kissed me. (“Eww!”  “Gross!”  “Too much information!”)

The Communion luncheon was only about a mile away from there, at a place on the river called the Cherwell Boathouse, which serves a couple of unrelated functions.  It hosts lovely fancy luncheons, for occasions such as First Communions.  And it rents rowboats and punts (which are a lot like gondolas in Venice; you push them along with a long pole).

The rain held off, so after lunch, we rented a punt. John and Sean and I and even Matt took turns with the pole. Predictably, near the end of the hour, Matt slipped and fell in the river. The mighty Cherwell is slow; John fished him out right away. But it is cold, and it is stinky.  Now, I was not particularly surprised to see him go in the drink. Not only is this the sort of thing Matt does, but also this apple did not fall very far from the tree.  He fell in mere yards from the same spot where I myself once fell in that same smelly river, maybe 27 years ago, one night when I was sneaking back into college after getting locked in the University Parks after hours, following a glass of wine or two with some of my naughtier friends…

We dried him off, got him a hot chocolate, tried to clean him up, and when he settled down we took the kids into town to show them some of the cooler places in Oxford. Look, this is a pub which includes part of the ancient city wall. Over here is a church tower that’s nearly 1,000 years old. Down this way there is a bookstore that goes on and on underground, in a warren of rooms under one of Oxford’s main streets.

Later, we met my dear friend, Tracey, for dinner at The Trout, a beautiful pub in Wolvercote. Tracey was maid of honor at our wedding. I hadn’t seen her for about ten years. That’s a whole child ago for me and two children ago for her! We had a lot of catching up to do.

It was a great weekend.

Good news, too!

Okay, I have decided that if I share every shred of bad news, I should also share the good news.

Today, I had my six-month assessment with the personal trainers at my gym.  After six months of seeing a trainer once or twice a week, except over the holidays, and whining about it a lot to my children and anyone else who would listen, I have actually made progress!  I barely changed my diet at all. My weight only dropped about three pounds.  But my body mass index improved, as did my body composition.  (I believe these are different ways of measuring the ratio of fat to muscle.)  My flexibility, though still "poor," improved markedly.

I could not even do the exercise they use to measure bicep strength six months ago, because of my surgery and radiation.  Now, it is in the "average" range.

What really improved?  My blood pressure! It went from 134/90  (considered Stage 1 Hypertension) to 109/64. That is in the "normal" range. Yay me!

I've never made it through an exercise program before for long enough before, or had someone try to measure my progress in numerical terms before, to see this kind of progress.  It is very satisfying!

New theory

Hello! We now have a working theory why my liver enzymes are all whack.  We suspect it's because of the cumulative effect of all the drugs, including the tamoxifen, topped off by all the pre-Africa meds I've gotten, including vaccines for typhoid and Hepatitis A.  We think the Hepatitis A shot pushed my poor liver over the edge.  At least we hope so!  Did some more blood tests today and they will email me when they know more.  I will be on a different continent by then, so I hope I can find the Internets over there! My arm looks like they've used it for a pincushion.

Blood work drama

I am at the stage now where I go back to the medical oncologist for blood tests every few months.  He is the chemotherapy man. He looks at  my test results to see if anything wacky is going on. I always knew that the next time there was bad news, I would probably hear it from him.  So today, when the nurse called to say there's something wacky going on, I wasn't horribly surprised; but I am fighting the urge to panic.

My liver enzymes are a bit high, the nurse said.  When did I start taking my anti-malaria drugs for my upcoming trip to South Africa?

Haven't started taking them yet, I said.  We are going to London first, so I don't have to start them yet.

Oh.

By now I am freaking out. The nurse reassures me that these enzymes can be messed up by Tamoxifen, which I am taking. She asks me to come in tomorrow to do a re-check.

I ask her, "Does this mean my cancer is back?"

"No, no, no, no, no!" she says.  But I need to come in tomorrow.

Okay, scratch plans for tomorrow. Tomorrow is the last day of the school year. I'm supposed to be watching Matthew's Moving On Day assembly and then taking him to the third-grade picnic. I hastily arrange for his brother to get him there so that I can go down to D.C. for more blood work.

Of course, I immediately go online and start reading up on liver enzyme levels in breast cancer patients.  Elevated enzyme levels can be caused by various drugs, including Tamoxifen.  They can be caused by heavy drinking (not my issue).  And they can be caused by cancerous tumors in the liver, including metastasized breast cancers.  As a total non-expert on things medical, I have no way of gauging which scenario is most likely, or how badly I should be freaking out right now.

I am supposed to be getting on a plane for England and South Africa the day after tomorrow.  Part of me wants to cancel all that and go get a PET scan and make sure the cancer monster isn't back. But I doubt they will offer me that sort of option, at least without trying to rule out other things first.  PET scans cost maybe $10,000 and they aren't really good for you. I bet they will tell me to stop taking the Tamoxifen for a while and let's re-test this in a few weeks. Meanwhile I will have to figure out how to stop wondering if there are metastasized breast cancer tumors quietly growing in my liver. I hope I can talk with my doctor tomorrow, and I hope he has something seriously encouraging to say to me.

I also wonder about the ethics of writing about this publicly.  Should I be causing you, my friends, to freak out, too, when quite possibly there is nothing at all to freak out about? Am I going to share every test result from now on that comes back less than perfect? If, God forbid, the doctors ever come back to me with truly bad news, am I going to share that, or keep it to myself as long as I can? I'd have to think about that.

I don't have much of a poker face.  Anybody who knows me well could look at me right now and see that I'm  a little tense. I am going to have to pace myself on the freaking out.  I should save the real panic for the day when I get real bad news, and not just the first dodgy blood test result.

I will keep you posted.

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.