High school reunion--a blast

Hello! I’ve recently returned from a quick visit to Missoula, where I was part of a reunion of people who worked on the Hellgate High School newspaper, the Lance.  The occasion was the retirement of our advisor, photography and journalism teacher Wayne Seitz.  I suspect that a secondary reason this event happened now is that the friends who organized it know that a couple of us are dealing with cancer at the moment. I think this may have helped them decide that waiting for “someday” to get together was a bad idea.  So we did it now, and it was great. I can’t tell you how much fun I had.

We played pool. We went to bars. The music seems to have deteriorated to some degree over the last thirty years. Dubstep at the Stockmen’s?  Really? And why do they need wi-fi at the Oxford?  The Ox, the only place where I have ever had people fight over my head and bleed on my food?  Do the old guys playing poker in there want to update their Facebook photos between hands?

But we all had fun anyway. We went to the Missoula farmers’ market, which is always awesome, and bought huckleberries and chatted with friends and parents-of-friends who passed by. We went to the Western Montana Fair and ate ice cream and fried cheese curds and tater pigs. We looked at the 4-H livestock. Mostly, we had a few beers and talked.

It was sort of reassuring, in a selfish way, to see that I am not the only person who can’t remember a lot of stuff. It’s not just the chemo! It’s not just menopause! Some of it is plain old age. The men were forgetting stuff, too, as well as the women.  Yes, I admit I had to be reminded that I had once been copy editor of the Lance. But hey, other folks had to be reminded about conversations that other people still remember in detail, more than 30 years later, or even of entire road trips to Seattle.

During this reunion weekend, I learned a few things. No, not about something juicy that happened during a lost weekend in Seattle. Actually, I learned that I have not been great at staying in touch with people over the past 32 years. I hadn’t seen most of these folks since the day I graduated high school, in 1980. I lost track of some people I really liked. It was delightful to meet them again and see what lovely human beings they turned into. I am sorry I missed the last several decades of their lives. But it was wonderful to meet them as adults.

One friend who should have been there, Michelle, died a few years ago, and I really wish I had kept in better contact with her. I miss her. I would like to apologize to her for a thing or two. I would like to hear her laugh.

I was shocked to learn that my old journalism teacher had not known that both my brother and I turned out to be newspaper people, thanks in part, at least, to him. Our thanks to this good man were maybe 20 years late, but at least I had the chance to speak to him. Note to self:  you don’t have forever to say this stuff.

So, in short, communicating with people I care about is moving up in my list of priorities. It’s more important than many of the stupid things I waste time on all day long, such as Facebook and driving around the suburbs. I am going to have to maybe let some busywork go so that I can get to what is most important.

This is all part of a natural process cancer survivors undergo, according to a book I just read called Dancing in Limbo, by Glenna Halvorson-Boyd and Lisa K. Hunter. The book was suggested to me by my friend who was also at the reunion and who is also dealing with cancer. According to this book, cancer patients first go through a phase of physically dealing with their illness, via treatments and surgeries and so forth. During this time, patients tend to be focused on the immediate physical task at hand, and often they are upbeat while working on this big project.  But later they hit a mental wall, as they are mentally processing the whole thing.  They have to get used to the idea that they are truly mortal and indeed will die of something, whether it is cancer or something else.  They have to get used to really, really not being in control of the situation. Then they have to grieve the loss of that innocence, of the immortal feeling of youth. Also, many times, they have to grieve the loss of body parts or of generally feeling good.  Then they can gradually learn to live gracefully in their new reality, which the authors refer to as “dancing in limbo.” They say it is a process of learning to become your most “authentic” self.

I guess that is what I am doing as I am sorting out my priorities. I am trying to figure out who the “authentic” self is, because I haven’t seen her in a while. And she is older than I remembered! I am picking and choosing how to spend my time a little more carefully. I am not earning any money. That can be inconvenient. But I am spending more time with family and friends. I am painting a lot and writing more. I am slowly letting other stuff go. Haven’t been antiquing lately.  Haven’t done anything horse-related for a long time.  Haven’t done any yard work.  Or committee work. Oh, well. So it goes.

Another thing I have had reinforced lately, both from my reading and my dealings with friends,  is that everyone does mortality differently. Some people, like me, blab all sorts of intimate facts to the whole world in a cancer blog. Other people do not even wish to discuss it, much, not even with their friends.  And everyone’s time frames for dealing with this stuff are different. Some people deal with it in fits and starts.  It can be awkward and hard on a friendship when the parties are on different schedules in this area, with one person wanting to wallow in it for a while, for example, and the other person wanting it to just all go away. So, fellow cancer patients, if some well-meaning person tells you You Need to Talk About It, you can tell them, “No, actually, I don’t,” unless of course you do. Maybe they do. But maybe they need to talk to someone else…

The other thing I have noticed lately is the people around me who are dealing with cancer, even dying, so gracefully that it is hard to believe what it is they are actually doing. You are still having fun and loving your friends and sending your children off to college and going to the beach and living what life you have with chutzpah. You know who you are. For what it’s worth, you are a walking guide to how to do this, and you are greatly admired.

 

 

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.

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.