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.

              

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!