Chemo brain, still.

                You know, I fully expected to suffer from chemo brain. They told me it was going to happen. It happened to my brother when he had colorectal cancer. But I didn’t expect it to last this long. I finished chemotherapy in July, for goodness’ sake. It is now late April. But I am still not playing with a full deck, as they say. Not the sharpest tool in the shed, or the brightest crayon in the box. I hope this gets better over time!

                Parts of the old brain seem to be working fine. Emotions seem okay, no more wacky than ever. I can still read and write and draw and paint. But remembering basic facts? Or what happened yesterday? Or if I’m supposed to go somewhere and do something? Not so much.

                Last week, after an early-morning soccer game, a bunch of us went out for breakfast. I sat next to a woman I’ve known for, oh, eight or ten years. Her daughter goes to our school with Julia and they’ve been on the same soccer team for years, and I still could not remember her name to save my life. I had to ask her, eventually. (Note: if I ever see you at a function, do not expect me to introduce you to anyone, because there is a real good chance that, even though I know all your kids’ names and where they are going to school and how your mom is doing, I cannot remember who you are.)

                My kids find this interesting and occasionally amusing. We will be in a conversation, and I will get distracted while trying to think of a word. Meanwhile, the conversation leaves the station without me. Three minutes later, I will locate the word I was looking for and answer the question, which was about, say, broccoli, and everyone will say, “What?” Because now, everyone else in the conversation is discussing a band called the Wombats, and my contribution, “cruciferous,” is no longer relevant, but it is kind of funny. So everyone rewinds for a moment until we figure out what I was trying to communicate. I may say this is damned annoying to a person who, in 1978 or so, won the Montana state championship in Extemporaneous Speaking. I used to be sharp. I could think of words. I miss that.

                Things that I do every single day, I can usually remember. For instance, my kids have been going to their school for at least thirteen years now, and I can generally remember even now that they get out one hour early on Wednesdays. But throw me a curve ball—move a piano lesson from Tuesday to Wednesday, or throw in a makeup for a rained-out soccer game--and I am going to forget something or someone.  Will I remember to show up for that one volunteer task I signed up to do at church for a half-hour every two weeks? Ha ha ha. Will I remember what times and fields my daughter’s soccer games are next weekend, and whether she should wear her home or away uniform? Hell, no. Thank God for computers and cell phones.

                My friends who are not chemo-impaired tell me that I should work it. They say they have the same sort of problem, only it’s due to menopause or lack of sleep or stress. I have the best excuse ever, they say. I should play that cancer card! But the fact is, if I played that card every time I could, they would take away my drivers’ license and my credit cards and my sharp objects.

                So instead, I am trying to do what my medical authorities say I can do to hang onto the brain cells that are left, and regenerate a few if possible. I am taking vitamins. I am eating fish and vegetables and healthy things. I am exercising a lot. I am getting more sleep. (Actually, that last one is an outright lie. Why did I say that?)

                One thing I am trying to do, and it has turned out to be a lot of fun, is to give the poor old brain some new activities to amuse it. Studies have shown that this works with people who have Alzheimer’s disease and other dementias. Maybe it will help me, too. As it happens, some of these activities were on my bucket list, anyway, so it’s sort of an efficient use of time, in an inefficient way.

                Example:  I am learning to read music and play the guitar. This was on my bucket list; I was not going to die without learning to play the guitar. I am practicing and all that. But apparently, not efficiently. Nobody can call my progress “fast.” The same information surprises me over and over. My long-suffering guitar teacher, Jeff, is very patient while I try to figure out where that F note is. No, that’s an E. There you go. That’s right. Yep, we learned that six weeks ago. Never mind.

Jeff likes me anyway, because I am the only student he has, probably, who is old enough to know or care who the Flying Burrito Brothers were. Meanwhile, my nine-year-old son, Matt, is also taking guitar lessons from Jeff, and Matt is and soaking this stuff up like a ShamWow soaks up spilled grape juice. Play an E minor harmonic scale? If I am going to try to play one, first it takes me a couple minutes to remember the word “harmonic,” and then I give up and look it up in my notes. And then I try to remember which finger is supposed to play D sharp, and then it takes a while to figure out how to get that finger over there. Meanwhile, Matt is playing this same scale from memory, and in different octaves, and fast. It just flows out of him, without effort. Sigh. For me it is hard work. Is that because I’ve been poisoned with badass chemotherapy drugs, or am I just getting old? I will have to compensate. I may not have a young, healthy brain, but I have earned, the hard way, a boatload of determination.

Determination is my secret weapon. With it, I am trying to stay organized enough to keep the trains moving. We are doing soccer and lacrosse and track at the same time. Will I remember to turn on the washer so that the uniforms are clean? With God’s grace, I will. Or maybe somebody else will. In between loads, I continue to seek novelty to fertilize those alleged new brain cells. The literature suggests I try crossword puzzles and jigsaws. Not my cup of tea. Instead, I have been taking a fairly intensive class at church on the book of Romans. (Which I studied, actually, at Oxford, but guess what? I don’t remember much of that!) I have been loving my book club. I have started going to concerts, when we find one that John and I can agree on. And for the first time in years, I have been doing some oil painting. It’s easier now that my kids are old enough that I don’t have to worry about them trying to drink the linseed oil or the turpentine. If we can keep me from drinking the linseed oil, or cleaning my brush in my coffee, there is still hope.

 (My first oil painting in a few years, of a trillium that lives in our backyard. Factoid: this kind of trillium is prettiest just before it withers and dies! It starts out plain white, but develops cool pink stripes as it gets old...)

Fun little reunions

                Lately, I have been enjoying little reunions with people I haven’t seen for a while, who have been visibly happy to see me doing better. It’s so much more fun than it was a year ago, when I was really sick, and I would run into people I hadn’t seen for a while, and they would visibly flinch at my appearance. Now, everywhere I go among friends there is quiet rejoicing, and not always where you would expect to find it.

                For example, our favorite Chinese restaurant is New Fortune, on Rt. 355 in Gaithersburg. We have been going there for many years. It is one of the few restaurants that every single member of our family loves, so when we have a reason to eat out, we often end up there. We take my mother-in-law there when she comes to visit. We took a carload of Russian Methodist choir singers there once, and we took a carload of Quaker soccer players from Pennsylvania there another time. We go there for my birthday. Our regular waitress knows that John wants a beer, and I probably want a chardonnay.

Then last year, I got sick. Our visits there became less frequent. I was too tired, and then I was too sick to enjoy the food, and frankly, there was just too much going on.  When we did eventually make it back there, I was my chemo self, bald and red-faced and bloated. I was on literally twelve different meds, and I was fairly stoned. I wasn’t drinking any wine, and I wasn’t eating much, because I couldn’t taste anything.

I watched our regular waitress as she tried to figure out what was going on with me. She looked worried, in a motherly way, and I felt like I should say something, but it was awkward. I didn’t know her well enough to just come right out with it.  How would that go, anyway? “You’ve probably noticed I look like death warmed over? Well, I’ve got stage three breast cancer. May we please have some hot tea?” Nope, I didn’t say anything, though I probably should have, and she didn’t say anything, but she spoke quietly in Chinese with the other waitress who has been there forever, both of them looking concerned.

Well, we went back there the other day, and it was delightful. My hair still looks decidedly strange, but overall, I look better. My face isn’t red and bloated, and I have eyelashes again, which makes a huge difference. You can tell the hair is trying to grow back.

Our regular waitress, who had been so worried about me, rushed over with a big grin on her face.

“How is mama?” she asked.

“Lots better,” I said.  “Lots and lots.”

“I am very happy,” she said, and she actually put her hand on my shoulder.

“How long has this restaurant been here?” I asked. “We have been trying to figure out how long we’ve been coming here.”

“Fifteen years,” she said. “This one,” she said, pointing at Sean, who is seventeen now, “was a little boy, little boy.”

“That makes sense,” I said.  “He was two or three years old, and this one,” I said, pointing at Julia, “were in the baby carrier when we first came here. Wow.”

“Baby,” the waitress said, pointing at Matthew, who is nine now, “was not born yet.”

She was smiling from ear to ear, and we don’t even know each others’ names.

“I could bring you menus,” she said, “but I know what you want. Mister wants a Tsingtao. You want a chardonnay. Salt-and-pepper squid, Szechuan string beans. Half roast duck. Barbeque pork. Fried dumplings,” she said, triumphantly. “Two orders.”

“It is good to see you,” she said.

It was a great meal. It felt like they were welcoming me back from far away, which they sort of were.

One of these moments happened again, a few days ago. We went to a casual drinks party for a colleague of John’s who works for the World Bank. His name is also John, and his wife is Donny. They were in town for the World Bank’s spring meetings. These were friends we’d known for many years, who have been working in Africa, so I had not seen them since I’d gotten sick. They had been reading my blog in Nairobi. Being research types, when I first got sick they had quietly done some of their own research, and they had located the same disturbing statistics I’d found regarding survival rates for people with my illness. They were among the first people who would speak frankly with me about the fact that the numbers were not very encouraging, and that I might actually die from this. It was nice to have someone to talk with who wasn’t trying to tell me everything was going to turn out peachy keen. But all our conversations had been by phone, or via the magic of the Internet and Facebook.

So, on Sunday, I snuck up behind Donny while she was talking with her colleagues about a film project. There was squealing and hugging.

“It’s so good to see you, like this,” she said, gesturing up and down the length of my body.

“Like, only semi-bald?” I asked.

We both knew what she was thinking. Like, alive. And in pretty good shape.

             And the best one of these little reunions happened on Saturday, at our school auction. A friend, who is about three years ahead of me in the breast cancer process, was in town from New York. We had never been close before all this cancer nonsense; we just didn’t cross paths very much. Our sons had briefly been on the same soccer team, and we had been to some of the same school meetings, that’s all. Then they had moved away. The last time I had seen her, was at the same school auction a year ago. For me, that had been on the day after chemo, and I was feeling and looking awful, and I was utterly stoned.

                What a difference a year makes! This Saturday, I was feeling great. And she was looking absolutely radiant. She spotted me from across the room, in the middle of the live auction, and immediately sailed over, while I was actively bidding on something, and wrapped me in a great big hug.

                No small talk.

                “I couldn’t tell you how much chemo sucks,” she said. “You have to go through it to understand it.”

                I’m talking into her shoulder, now. I’m almost crying. “I knew it was going to suck,” I’m saying. “I just didn’t have any idea how long it was going to suck for!”

                We now have dinner plans. It really is something else, to talk about this “journey” with someone who has been there. I guess that’s why old war veterans like to sit around VFW halls. But to get to talk with someone who not only has been there, but also has come out so beautifully well at the other end, and who, in addition, knows your kids and your husband and your local gossip, that’s golden.

                I don’t have a great moral to draw from all this. It’s sure a whole lot more fun going around making people smile than it was a year ago, when I went around making people freak out and, occasionally, making them actually cry. And I have will say that, as you go through life, there are people out there pulling for you in places you might not expect.

                                

What I figured out at the Adventure Park

Hello! I am writing this on the day after Passover, or on Easter Sunday, for those of the Christian faith. We started the morning seeing off our friends from Nova Scotia who had come for a quick visit, which was wonderfully fun. Then we went to church. The Hallelujah Chorus still gives me goosebumps. And I do believe in the Resurrection. I could give up all the other miracles if the theologians made me, the loaves and fishes and even the virgin birth, but not the Resurrection. My nine-year-old has pronounced it “ridiculous,” but I told him it is no more ridiculous than the fact that we are all here in the first place.

                The Resurrection story resonated differently for me this year, now that I feel like I have kind of snatched life out of the jaws of death. I feel for the first time I have a glimmer of understanding of what Jesus meant when he was dying and he said, “My God, my God, why have You forsaken me?” And it was good to sing the Easter songs. Where, O death, is now thy sting? Truly.

                After church, I had my own Easter plan. Instead of our usual egg hunt and big dinner, I was going to get busy living some more. Specifically, I had a project to work on my phobia about heights.

                I don’t like heights. That is putting it mildly. I can’t even climb to the top of a household ladder. I can only get on airplanes thanks to modern pharmaceuticals, specifically Xanax.

                How this all will relate to having cancer, I will get back to eventually. Cut me some slack for a few minutes.

                I’ve been working on getting over this phobia for the last couple of years, since before I got sick. I have been to the top of the Empire State Building in New York. Then, when we were in Chicago, I went to the top of the building formerly known as the Sears Tower, now called the Willis Tower, where you can stand out in a glass box with a glass floor, 103 stories over Wacker Drive. I had to crawl out onto the glass ledge at first, but eventually I was able to stand up. That looked like this:

                Then, when we went to Montana to visit my mom, I walked a part of the Highline Trail in Glacier National Park which had completely flummoxed me a couple years earlier. I had tried to hike this with John and my three kids, and I absolutely froze up. Burst into tears. Couldn’t go forward or backward. Ruined the hike for the whole family, although I eventually was able to walk back the short little way I had gone.  

                Later that day, I decided I would have to go back there some time and do it if I was going to live with myself.  It took me a couple of years to get back there at a time when the trail wasn’t buried under 10 feet of snow. But in 2010 I did the hike with my friend, Steve. The outward trip was terrible; I was dizzy and panicky and couldn’t look at anything but the back of Steve’s neck as he walked in front of me. But eventually something cracked in my mind, like your knuckles cracking, only it was in my brain. I just literally snapped out of it. The trip back was fine. It looked like this. This is me:

                Now, back in Maryland, I had been similarly flummoxed several years earlier by a simple rope swing up at Cunningham Falls State Park.  At that time, I had chickened out of even once getting on the rope swing, which was basically just a knot in a big rope that you stood on and swung out over a ravine. Other people were having a great time with it, but I simply could not do it. It got to bugging me. I had set a poor example for my kids. But the next time I went up there, a couple years later, the rope swing was gone, so I had lost my chance to redeem myself.

                And then our school built a big Adventure Park full of high ropes courses on some land it owns. There are several different courses in the park, ranging from “purple” level for kids to “double-black-diamond” for strong adults.  I knew I would have to do it a ropes course there one day.

                It took me some time to get there. At first, I just was afraid. And then, I got all busy having cancer. Then I was too sick for a few months because of the chemo, and then I had surgery and my arm was messed up for a while, and I had to do physiotherapy and work with a trainer to get back my upper-body strength. But now my arm is doing great and I have no more excuses. So when the Adventure Park opened for the season recently, I couldn’t really put it off any longer.

                My son, Sean, who is 17, actually likes the ropes courses. Sean does them for fun. He pays good money for the privilege. He goes on the scarier, higher ones. So I asked him if he would take me on the bunny slope of ropes courses, and he agreed. I thought Easter would be a good day for it. The crowds would be small, I thought, and I would be full of the power of the Resurrection story. Nothing is impossible with God, as they say. I can do all things through Christ, who strengthens me. Right?

                I almost didn’t make it.  I almost got too dizzy going up the log stairway to the first platform, which small children were practically skipping up with no problem. Seriously, I have issues. But I wasn’t going to give up before I even started. I have some pride, somewhere, so I kept going. A park staffer advised me strongly to take a “purple” route, one of the ones designed for five- to seven-year-olds. The purple routes were maybe twelve feet off the ground. It may as well have been a thousand feet above Wacker Drive, as far as I was concerned.

                Sean went ahead of me, to show me where to put my hands, and to demonstrate which way the obstacles moved (which most of them did) and to warn me about any scary noises I was likely to hear.

                The first element of the course, a bridge made of netting between two trees, was not terrible. It didn’t move very much, and all it took to get across was more or less just regular walking. I made it to the other side.

                “Bam!” said Sean. In the bag.

                But the next element was not so simple. It consisted of a series of short four-by-fours, each suspended in mid-air, forming an extremely wiggly bridge you had to walk across. They did move, sideways and also forward-to-back. And they made scary creaking sounds, as if they were fixing to break any time now. And you had to step from each one onto the next one. I think it was about halfway across that that I just burst into tears. Now I was dangling in mid-air on a four-by-four that was swinging back and forth and creaking, and I was crying, and I couldn’t even let go of the cable to get a tissue. Altogether dignified.

                I looked ahead to Sean.

                “Hey,” he said. “You are from Montana.”

                That comment got me across that first bridge. When I got to the platform on the end, built around a large tree, I clung to the tree and sobbed.

                There were more elements. There was one that wasn’t so bad, basically a plain log, and then another wiggly, scary one.

                And then there was a tightrope. You had two cables to hold onto, and a third one to walk on. That was it.

                “They have got to be kidding,” I said. “Jesus.”

                 I started saying “Jesus” a lot. And then I started swearing. But there was no going backwards, and I decided I was not going to call a staffer to rescue me like a cat up a tree. I made it across. We paused to let a five-year-old scamper by.

                Then there was a bridge that was basically a stable horizontal ladder you could walk on, only there wasn’t anything to hang onto. That terrified me, partly because I have hardly any sense of balance.

                There was another bridge of suspended pieces of lumber, only the last one was at an angle, so that it made a ramp you had to climb up while it was all jiggly.

                “How am I going to get up this board?” I whimpered.

                “You are going to use the brute strength you have got in your arms from working out with your mean trainer these last two months,” Sean said.  So I did.

                The last element of the course was a zip line. This was the thing I was dreading the most, because you have to trust your equipment, basically a pulley hung on a cable, and just jump off the platform and glide. I was not sure I could do that. Sean was afraid he was going to have to push me off the platform, and when I sent him ahead of me he was afraid I would be marooned.

                But that one element was the one that turned out to be actually sort of fun. I could do that again. It was kind of pleasant. It did not go as fast as I had worried it would. I had actually worried I would black out halfway across, and the fire department would have to come get me. But I wasn’t even tempted to black out, or curse or cry. It was fun. Sean took a video and I was actually smiling:

                So, what does all this have to do with having cancer? There were three main things that struck me:

1. Having cancer has taught be a lot about how to mentally overcome unpleasant situations.

                I have always been pretty good at avoiding unpleasant situations or feelings. This made me a comfortable person, but a poor risk-taker. But you can’t avoid unpleasantness while you are doing chemo, or figuring out how to be a parent while maybe you’re dying, or working out how to stay married even when even when you are falling apart. You just have to figure out how you are going to do it.

                Getting across that first wiggly bridge was like that.

                I have heard cancer people say that having cancer makes you “stronger.” I used to think, well, that’s nice. I get it now. I probably couldn’t have done that zip line or that tightrope before I got sick. I hadn’t practiced doing hard things enough; I had just avoided them. But now I have breast cancer under my belt, and what is scary these days is relative.

                Margaret Mitchell wrote about this in Gone With the Wind. When Scarlett O’Hara’s mom has died and her dad has lost his mind and most of Tara has been trashed by the Yankees, Grandma Fontaine tells Scarlett, “Child, it’s a very bad thing for a woman to face the worst that can happen to her, because after she’s faced the worst she can’t ever really fear anything again. And it’s very bad for a woman not to be afraid of something…God intended women to be timid frightened creatures and there’s something unnatural about a woman who isn’t afraid.”

                Well, Grandma Fontaine thought it was very bad, but I think it’s great.

                Now, I am not kidding myself. Having breast cancer is not the worst thing that can happen, and I know that. I know full well that any number of things, such as having a child with cancer, would be much worse. But it was bad enough. And because of it, not only am I lots better at dealing with the fears I do have, but also there are some things that just don’t scare me much anymore. I used to be afraid of going to the dentist. Not anymore. And I never thought I’d be able to jump off a platform onto a zip line, but it wasn’t even hard.

                I think it was before crossing the tightrope that I said to Sean, “Okay, I have done four months of chemo. I can do this.”

                “I have no doubts,” he replied.

2. Now I am spending some time wondering, what else is out there that would turn out to be wonderful if I just gave it a shot.

               

                This sort of follows from the above. If that zip line, which was the thing I was dreading, turned out to be the one thing that was actually fun, what else is out there like that? I have to seriously figure out if there are other things that I have been avoiding, that are precisely the thing that would be best to do. I am sure there are.

                Or, as one of my church friends would say, I should be checking out my own darkness to see what’s useful in there.  There’s some pretty good stuff in my darkness, it turns out.

3. Having cancer sort of lit a fire under my butt to start living more fully and mindfully. The rest of you, anyone reading this, learn from my mistakes and don’t wait to get cancer to light a fire under your butt.

                

                If having cancer means you get to have a soapbox, my first soapbox would be one for me to stand on and tell my women friends to get their mammograms. But the next one would be for me to stand on and tell everyone not to wait as long as I did to get busy living.

                I have pissed around a lot. I have wasted a lot of time, sometimes in the name of motherhood or what I “should” be doing or out of fear of what might be inconvenient or impossible.

                I have a friend, Bev, who went to my church until she moved away, and we used to be in a Bible study together. She is currently fighting a recurrence of ovarian cancer.  On my one-year-survivor anniversary, she wrote me a lovely note. In it, one of the things she said was:

                “Isn't it a shame that we have to get this kind of wake-up call in order to see what is really important in life. People, don't wait until you get a wake-up call - do what is important to you in this life now! You don't always get the time Katie and I have had to make your plans! Do it now!!!!”

            What she said. Amen.