July update

                It has been a while since I have posted, because there hasn’t been much going on on the cancer side of things. I can now give you a quick update.

                I have been having some nasty pain in my hands and knees, and we had thought that it might be a side effect of one of my medications, Tamoxifen. When I saw my oncologist recently, I told him it was still very bothersome. I asked him when we might start investigating to make sure something worse wasn’t going on, specifically rheumatoid arthritis or some such thing.  “Now,” he said, and he sent me off to a big-shot rheumatologist.

                I am happy to report that I don’t have rheumatoid arthritis. Nor is it a side effect of the tamoxifen. What I have in my hands is good old-fashioned osteoarthritis, like my grandma had. Only, I am 50 and she was a lot older than that. But if I live to be 101 like she did, my hands are going to be a mess. I have bought mass quantities of Aleve. Life goes on.

                The knees are another story. My left knee is giving me all kinds of problems. As it turns out, the problem there is not arthritis at all, but something involving my kneecap being in the wrong place. Ouch! This problem is apparently very common and is not fixed with drugs but with lots of physical therapy. This will commence in August. The only bright side is:  in the meantime, I am strictly forbidden from doing squats, lunges and other things like that where my knee makes me want to scream in pain. My doctor circled this in red ink and drew arrows around it. My trainer, Mija, is grumpy about this.She enjoys making me do squats very much. Oh well.

                Now, when I saw my oncologist, the other thing he had said was, it really was time for me to get a colonoscopy. He said that is one test that is known to save many many lives. Period.

                 I had had one several years back, when one of my brothers was diagnosed with colon cancer, and my test then came back clean. But I turned 50 this year. And it seems that my immune system is slacking at the cellular level,  which can lead to not only breast cancer but skin cancer, colon cancer, etc. So the oncologist wanted it done. Last week, I bit the bullet and did it. The results came back clean. But they want me back in five years, not the usual ten.

                 Here is a picture of all the stuff they make you chug before a colonoscopy. It made my Weight Watchers number very happy the next day, I can report:

                The one part that was a bummer was trying to get an IV in my poor arm. Since all the chemotherapy two years ago, my veins don’t cooperate any more. It took two nurses and an anesthesiologist a total of six tries to get an IV going. Twice, they started one only to have it fail, and they had to do it again. By the end of that performance, I was crying and shaking. Here is what my arm looks like, a week later:

I am here to tell you the colonoscopy itself was nothing. Even the prep wasn't too bad. If you are supposed to get one, GO GET ONE! I can't tell you how much easier a colonoscopy is than chemotherapy. Just do it.

Graduation Day update

                Well, tomorrow our oldest child, Sean, graduates from high school. It’s an emotional time as he’s been at the same school, Sandy Spring Friends, since he was four years old, and now he and the friends of his whole life are going out separately into the big world. Sean is off for the University of Toronto.  I am acutely feeling the absence of my mom, who died in January, and John’s mom, whose doctor told her not to fly out here. They would have loved to be here. And everyone is on pins and needles wondering if Tropical Storm Andrea is going to wash out the traditional Sandy Spring Friends outdoor barefoot graduation ceremony and all the lawn parties thereafter…

                I had my quarterly check-up with my oncologist on Tuesday and I have been in that three-day period where your heart stops every time the phone rings, because it could be them calling back with bad news. But the phone hasn’t rung.

                Yesterday, our youngest, Matt, finished fourth grade and there was a festive picnic for that. The Lower School assembly in the morning was lovely, and I got through the whole thing without crying once, almost made it, until they brought out one of Matt’s teachers, Linda, who is retiring after 20 years at our school, and she was crying. That was it for me. I may stop crying sometime next week. Happy trails, Linda! As the great Warren Zevon has said, may you enjoy every sandwich.

                I did some graduating yesterday, too. I had my last appointment with my plastic surgeon.  It has taken nearly two years to go from the original mastectomy to the finished product. I will now see my plastic surgeon, Dr. Kathy Huang, once a year for a quick check.  At some point down the road, maybe ten years from now, I will need to get that implant changed, because they don’t last forever. In the meantime, I’ve got my little exercises to do from now on to make sure that this boob stays nice and boobular, and doesn’t go hard as rock.  Who knew that could happen? But for now, I’ve got my plastic-surgery diploma.

                Let’s mix some metaphors! I am going to toot my own hooter. Everyone who has seen my new boob, which isn’t many people, I’ll admit, is absolutely delighted with how it turned out. In fact, yesterday, the doctor took photos of me to use when she speaks to breast cancer survivors’ groups and potential future patients. It turns out that in my surgery, they used a new-and-improved pattern for where to make the incisions, which results in less-obvious scars. I have to say, it worked beautifully.  If I was of a later generation that didn’t mind plastering nude photos of itself on the Internet, I would be doing that myself, just to show how good a job Dr. Huang did. But I am of an older generation, so I shall restrain myself. Someday, I may go to the hot springs and have a few beers and get naked like everyone else, just because I can, and from the day I had my mastectomy I never really thought I would get to this happy point. I wish I could tell other women going through this how well it can turn out. (And I do believe I have actually caught men looking at my chest! Ha! They may have no idea what it took to get to the point where a guy would want to do that…Take that, stupid cancer!)

                There was a woman in the doctor’s waiting room yesterday, a bit older than me, bald, no eyebrows, wearing the pink scarf-thing on her head. It was like looking back through time at my two-years-ago self. You could tell how crappy she was feeling. It was all I could do not to go up to her and give her a big hug and tell her to hang in there. That is not something you do in a doctor’s waiting room, where there are understood rules about respecting each other’s privacy. But I am sending her all kinds of good energy and prayers.

                 

In Which I Get Cut Down to Size

                It has been a busy couple days on the breast cancer front. Heck, it’s been a busy couple days on every front. The high-schoolers are taking their AP exams, and the fourth-grader just did his CTP tests. It is the end of the lacrosse, track, and baseball seasons, which means playoffs. My oldest son, Sean, is graduating in two weeks, and that means meetings, dinners, breakfasts and parties. Oh, and John is in China.

                Yesterday was also the finale—we all hope—of my long, drawn-out breast reconstruction. In the end, the nipple they made out of skin from under my arm was just too big and droopy. So they had to literally whittle it down to size. This they did yesterday afternoon. It took about twenty minutes, after I went to the gym, and before carpool.

                I think I earned my badass credentials yesterday. They do this procedure without any form of anesthesia whatsoever. I had been so convinced that there would be Novocain involved that I did not even bring a flask of huckleberry vodka with me.

                Ha.

                The doctor said, sure, they could numb it, but I wouldn’t feel anything anyway, so why do that?

                I thought about walking out. I pointed out that they had said I wouldn’t feel anything for the tattoo, either, and that turned out to hurt like hell.

                “Oh, lots of people feel the tattoo,” she said. “Nobody feels this.”

                And she went on to demonstrate that, in fact, my inch-wide tattoo circle zone certainly has gotten its feeling back, as nerves have regenerated.  But the actual nipple itself has no feeling at all.

                She was right. It didn’t hurt. But I was wincing and grimacing and holding my breath just the same, because technically, someone was cutting off part of my nipple while I was wide awake and hadn’t had so much as an Advil. My skin might not know enough to hurt, but my brain understood what was going on.

                “I know you aren’t feeling this,” the doctor said, “because you are wincing at all the wrong times.  I already did the cutting. It’s done.”

                And so it was.  I felt the stitches, though. Ouch. Although it was more the weird sort of sensation that, for example, you have when you have a C-section. You feel someone pulling at you, and while it doesn’t actually hurt, you know what they are pulling on is your guts, and your brain tells you it probably hurts anyway. “Creepy” doesn’t cover it.

                So I did earn my badass wings yesterday. I got my stitches, utterly unmedicated, and went out and drove carpool and watched a track meet got the boy a haircut and took him to his piano recital. I got the cookies there on time, and I didn’t forget to feed him. And I had already seen my trainer in the morning. At about 9pm, when I finally got my glass of wine, I sat down and fell asleep. Being a badass is exhausting.

                The upshot of all this is the boobs look pretty good now. Truly. If you look you can see some surgical scars, but they are the kind that anybody who has had any “work” done on their breasts would have. And a lot of it is on the underside anyway, so you wouldn’t see it unless you were, well, looking from a fairly interesting angle. Otherwise they are pretty normal -looking breasts. This is amazing to me. I believe if I waited until the stitches were out, I could show up at the clothing-optional hot springs and get naked and nobody would probably notice anything amiss at all.

                Well, if I am being completely honest, I should admit that the “real” breast is a little bigger than the “fake” one right now. That’s because I’ve put on ten pounds, mostly from comfort eating in the wake of my mom’s death. And if I gain weight the “real” breast gets bigger.  The other one is like the boob of Dorian Gray. It stays the same, while everything else grows or shrinks or sags around it. But as far as I’m concerned, that’s just added incentive to not let my weight get out of control. Otherwise, it’s all good. In fact, the girls are downright perky. Take that, stupid cancer!

                Flying the metaphorical bird at stupid cancer has been the other theme of the week. Saturday morning was the Race for the Cure here in DC, and our family participated as Team Honey Badger.

                John and our son, Sean, ran the 5k race. John actually ran in serious fashion. He came in 26^th overall, second in his age group, which made him very happy. He was beaten by one of Sean’s friends from school, Manny, which made him happy.  And he was beaten by one very perky breast cancer survivor woman, which no doubt made her very happy.

                I did not run; I walked with my younger kids. It was the third time I had done the Race for the Cure, but only the first time I had done it since developing breast cancer myself.  What was different?

                The race was certainly smaller than it used to be. There was a story in the Washington Post that said there were about 21,000 people formally registered to run. That’s a lot fewer than the last time I ran, and 6,000 fewer than last year, according to the Post. They quoted Komen as saying the shrinkage was due not only to the kerfuffle over Planned Parenthood getting money from Komen, but also the economy, the number of competing breast cancer events that are now available, and the fact that the U.S. Park Service asked Komen to move the race from June to Mother’s Day weekend.               

                Of course, this race was way different for me, personally. For me, it was much less about the race and race times, and much more about the ambiance.

                In the weeks before the race, the Komen organization had survivor volunteers call each survivor racer, including me, and it was actually good to talk with that woman. I have not participated in any formal support groups; the only networking I’ve done is talking with women at church or at school who have been through this. It probably would have been a good idea to have done more of that.

                The Komen people gave cancer survivors special shirts and hats, and laid on a nice breakfast for us. They handed out lots of pink bling. Pink Mardi-Gras beads and flags and water bottles and whatnot. Most of us were pinked-out already, so this was pretty much a waste of money and energy, as far as I was concerned.

                It was good to be there, though. It was great to see all the survivors, who were clearly color-coded a darker shade of pink. It was nice, when, at the end of the race, a volunteer, a young black guy, college age, handed me a pink medal for surviving and looked me in the eye and congratulated me as if he meant it.

                It seemed to me there were many, many more survivors in evidence since the last time I had done the race, ten years ago. Quite a few of them were older people, who clearly were surviving for the long haul. This was personally very encouraging to me. Often, breast cancer feels like a death sentence, though it may be a delayed one. These women were very much alive.

                It was fun taking photos. Photos of us, photos of total strangers, photos FOR total strangers, and they took photos of us. Here are bald women with pink deely-boppers. Here is an 18-year-old guy in a pink tutu. Here is a woman in a pink cowboy hat with all her kids! It was all very jovial and it was fun to declare a joint, “Fuck you!” to cancer.

                It was particularly lovely to be there with all my children. When my daughter posted photos of us on Face book and said, “Love you mommy,” it made me cry, but in a good way.

                It was hard when they had the sheets of paper where you write the names of who you are running in celebration of or in memory of.  I used to have one name to write down:  my mother-in-law, Diane.  Now I have more than I can list. Something is wrong with this picture, and we have to find out what it is. The club has gotten way too big.

                One thing I would suggest is that Komen re-design the walking route. There was a massive bottleneck near the beginning of the walk, which led to crowding, claustrophobia and great uneasiness among some, including my son. Had a Boston-Marathon style loony wanted to try something nasty, this would have been the ideal place to do it. There was no way to get out of there, and it took at least 15 minutes before things opened up.

                The other annoyance I could have done without was a group of loony anti-abortion protesters who planted themselves near the starting line, in the bottleneck area, with HUGE posters featuring graphic photos of, get this, aborted fetuses AND cancerous breasts. Abortion causes breast cancer, they lied. Shame on them.

                Part of me wanted to laugh, because, really, they came to the wrong parade with this one. For one thing, a good proportion of the racers were from churches, mosques and synagogues, not exactly your pro-abortion demographic. But even more funny to me, did they think really they could scare a parade full of cancer survivors with ugly pictures of cancerous breasts? Please. We have seen those pictures before. They were pictures of our own selves, and we have long since gotten over it. And anyway, we do not scare easy.

                But sadly, I did let these morons piss me off. I ended up doing some personal screaming and flipping-off, of which I am not proud, but there it is. I will never be a Gandhi, I guess. I react too much. I particularly resented their graphic tasteless hatefulness in front of so many hundreds of small kids, including mine. I guess the protesters got their martyrdom fix out of it, and I helped because I let them raise my blood pressure. In the end, I ended up comforting myself with the fact that there were 20,000 of us and maybe six of them. And Planned Parenthood is getting our money, so there. Which is a good thing if you are looking to prevent abortions, but these fools were too willfully ignorant to see that.

                In the end, I am glad I went to the Race for the Cure. I was ambivalent at first, because I thought it was ridiculous that Komen would consider pulling funding from Planned Parenthood.  And there has been disturbing press about how much Komen officers are paid, and so on. And I did not really need a big event like this to help me dwell on the fact that I am now one of those pinked-out middle-aged bald women. But I met actual people who had been helped by Komen. The money does help. And my oncologist recently told me that, by the time my daughter is old enough to worry about her genetic predisposition to breast cancer, research will have made the game very different than it is today. That research is what we are paying for even with these silly pink events. Bottom line: my daughter’s life is worth getting pinked out for once in a while.

                                

The Tattooed Lady

                It has been a while since I checked in with you, but that is because not much was happening on the cancer front. I can now report that I got my tattoo yesterday! This was supposed to have happened some weeks ago, but it got postponed due to scheduling problems with my tattoo artist, Tina, and then I was in Montana for a while.

                To recap, my doctors have made me a new breast pretty much out of whole cloth. Since they took out the whole original one, they had to start from scratch. They stretched my own skin big enough to make one with the aid of a thing called a “tissue expander,” which they gradually pumped full of water and which set off the metal detector every single time I got on an airplane last year.  Then they took that thing out and replaced it with a garden-variety implant. Next, they did a skin graft and made me an origami nipple out of my own flesh and appliquéd it on there. Yesterday, it was time to color the little brown circle, or areola, on there. That’s where Tina came in.

                Tina owns the Tantric Tattoo and Boutique in Sandy Spring. But she also works with the Plastic Surgery Institute of Washington and my own surgeon, Dr. Kathy Huang, to reconstruct breasts for women like me. I asked her yesterday, while she was mixing her ink, how many of these she had done, and she said, “Thousands.”

                Tattooing one of these takes about an hour. Tina does the tattooing in the plastic surgeon’s office in North Bethesda.

                Now, back when I had discussed this tattoo procedure with Dr. Huang, I asked if there would be Novocain or something. She said since they had disconnected all the nerves when they did the mastectomy, I would not feel a thing. I told her I was pretty sure I was getting feeling back in that breast, and I told her there had better be Novocain or something, or I would arrange my own pain relief and that might get ugly. I have too many memories of doctors and technicians sticking needles into my breast the last two years, which hurts like hell, to sit there quietly while someone sticks a needle in my breast, over and over, for an hour, without medication.

                Dr. Huang and the nurse laughed and someone said I should get a margarita before I came in and everything would be fine. But then my appointment got moved to 10am and a margarita appeared unlikely. The Montana solution to this dilemma:  a hip flask full of huckleberry vodka, just in case.

                Well, don’t the Boy Scouts teach us it’s always good to be prepared? There was no Novocain or anything like it. So I went to the ladies’ room and tossed one back. As it turned out, that was a smart move, because getting a tattoo on your nipple hurts. A lot. When Tina began to “break up the skin,” as she put it, poking it with lots of holes so that the numbing spray she used would sink into the under layer of skin, I about jumped out of the chair. She was about half done when I called a time-out. This hurts, I said. It really hurts. What’s the deal with that?

                She said this was actually good news. It was unusual for this procedure to be painful, but what it meant was that my nerves are regenerating, and faster and better than expected. This bode well for me regaining some sensation in that breast, and what’s not to like about that? Meanwhile, Tina went and got some numbing cream that made it slightly less painful, and she was able to finish the job. I was pretty much cranky for the rest of the day. I laid off the vodka and switched to Advil, but it was sore.

                The good news: it really looks good, and that’s now, when the color is a little raw and overdone, and I still have that malformed nipple on there. When the color settles down a little and we fix that oversized nipple, it is going to be awesome. Much of the surgical scar is no longer visible, and the robo-boob now looks a lot like the other one. This is amazing to me. If I drink enough vodka one day, I might post before-and-after pictures, because the difference is astounding, but I hope that day never comes!

                That’s all until next time, when I will report on the Washington, DC, Race for the Cure! I bought an awesome pink cowboy hat in Montana for the occasion, but already the pink is literally chipping off in chunks. A fitting metaphor for the pinkwashing of America? Check out this article in the New York Times Magazine if you want to think long and hard about Komen, the way pink money is spent, and everything:

http://www.nytimes.com/2013/04/28/magazine/our-feel-good-war-on-breast-cancer.html?pagewanted=1&hpw

R.I.P. The Mommymobile, 2001-2013

                The Mommymobile died Friday morning in Olney, Maryland, following a long battle with transmission problems and complications of emissions system failures. It was twelve and a half years old. It had the grace to die peacefully in front of our own house so we didn’t cause an accident or get stuck in the cold or miss the school talent show on Thursday.

                We got the Mommymobile, a 2001 Honda Odyssey in gray that looked like every other gray Honda Odyssey in the carpool line, on the day before 9/11. I remember driving it around in stunned silence the following day, thinking how messed up the world was. The whole planet was in tears, yet I was cruising around in a lovely new vehicle.

                We brought our third child, Matthew, home from the hospital in the Mommymobile.  And when he was just a baby, during the days of the D.C. snipers, I remember the morning that a landscaper down the block kicked up a stone with his string trimmer, and it shattered the Mommymobile’s window next to the baby. I remember screaming. We were certain we’d been shot at. I remember shaking the broken glass off him and crying. Not a scratch on him, although his little sleeper was full of pellets of safety glass.

                You could fit a lot of kids in the Mommymobile. Over the years, we drove around parts of more than twenty soccer, lacrosse and basketball teams. I estimate, and it is a conservative estimate, that together, the Mommymobile and I made the trip to Sandy Spring Friends School more than 5,060 times. Together, we survived years of Memorial Day camping trips. It was a great place to sit and drink wine while the lightning flashed and the tent leaked.

                We taught my son, Sean, to drive in the Mommymobile.  It ferried around my grandma and my mom, who are both gone. I wish every day my mom was there with me, riding shotgun. Mom and Grandma were amazed at my van’s size and comfort. They declared it was like an airplane. Perhaps they are cruising around in it in Heaven. Grandma’s riding shotgun. They are probably in the drive-thru of a celestial Arby’s right now.

                I have heard friends say they would never drive a minivan. That was a line they would not cross; it was one step too unsexy for them. (Yet these were people who would willingly drive station wagons! Who can understand the thoughts of man?) I loved my minivan. I embraced its boring reliability. I tried to bring out its best self with aromatic braids of sweetgrass and sachets of sage and pine. I tried to keep the smelly soccer cleats in the wayback. If you removed the seats you could fit a huge amount of stuff in there: many bikes, skanky fishing tackle, large IKEA boxes, guitars and amps, crates and crates of horse-related paraphernalia.

                We put the best bumper stickers on it we could find, and as many as we could find. Those bumper stickers got us dirty looks from New Jersey to Kentucky. They got our side panels keyed. They got the tail light smashed, right here in Olney. They got me verbally abused in traffic and once, followed into the grocery store and hassled in the dairy aisle. I stand by my bumper stickers! Yes, I DO have more foreign policy experience than Sarah Palin, actually! And more: “You can no more win a war than you can win an earthquake—Jeannette Rankin.”  “Blessed are the peacemakers—Jesus of Nazareth.” “Montana Girl—Don’t be fooled by the pink.”

                I drove the Mommymobile to the radiologist’s office the morning I found out I have cancer. I sat in that van in the parking lot and sobbed until I stopped shaking enough to drive home. I drove it to each chemotherapy session, although of course John always had to drive us home, because I’d be hallucinating by then. It was a comfortable van to pass out in. And it practically learned to drive itself to Sibley Hospital in DC, where we went daily for six weeks for radiation treatments.

                I have to decide what I will drive now. That is hard, because when I bought the minivan I knew exactly who and what I was, and I am not that person anymore. Is it time for my midlife-crisis vehicle now?  A sexy convertible? I could more easily see myself in a big old Ford pickup, but that would only lead to a gun rack and a big dog. My kid says I should get a Volt; that would be best for the environment. But,you know, I want something that is going to be fun to drive and not a pain in the ass. I am kind of tired of driving what I “should” drive and leaning more toward what I “want” to drive. Hell if I know what that is. But I am collecting bumper stickers for it already.

                               

               

Happy Two-Year Cancerversary!

Hi friends! Rieh, the flowers are beautiful! Thank you! Thanks all of you for the ongoing love and friendship, guys. It's going very well, so far.

Update, and: Guitar? At YOUR age?

                First, here’s a quick update. I just had my two-year mammogram and all is well there, so far. Yay! And gradually, the Frankenboob is looking less awful.  Things haven’t quite shrunk to a normal size, but we are definitely getting there.  We may need to do some tweaking at the end of the day, but maybe not.  I can tell that the breasts are going to look fairly normal and fairly similar to each other, when it’s all said and done, and really, that’s all you need. Don’t worry. I won’t be posting photos!

                There is one other new thing going on. The newest cancer-related bummer is serious arthritis in my hands. My right hand is particularly badly affected, and I of course am right handed. This plays hob with the guitar playing, the painting, the housework, etc., believe me. Yesterday it hurt so bad that I had trouble taking a picture or using my electric toothbrush or opening my front door. I thought I was going to die at the gym. It wasn’t the exercise my trainer was trying to get me to do that was killing me; it was the act of picking up the weights in the first place.

                I had thought this arthritis was just another fringe benefit of getting old. But now my oncologist tells me this is not old age. Rather, it is a side effect of one of my meds, tamoxifen. Now, all the studies show that a person with my type of breast cancer should be on tamoxifen for ten years if possible, to minimize chances of the cancer recurring.  I have almost two years under my belt. But if the arthritis becomes crippling, I may have to switch medications. We really don’t want to do that. So, in the meantime I am going to try to channel my badass mom, who truly knew how to dismiss pain, and put mind over matter. And I will buy stock in the company that makes Advil. But I swear, if I tell my trainer that I can’t do something she wants me to do because my hand has seized up like the engine in my brother’s Chevy Vega, I am not bullshitting her.  It really hurts.

********

                In happier news, there’s music.

                On Friday, the Washington Post Magazine ran an article about a musician, Manny Bernardo, who runs a music school in Bethesda called Middleway Music Studio. He teaches people—mainly adults—to play the guitar. I stumbled on this article while sitting in a car repair shop in Derwood, waiting for new tires for the Mommymobile. It charmed me because it was almost exactly a year ago when, at the age of 49, I started taking guitar lessons from Jeff Burnett at Rocketeria in Olney. And as I later learned, Manny Bernardo is Jeff’s jazz duet partner, and they are of course friends.

                Reading this article, it was gratifying to learn how many persons like me turn to the guitar fairly late in life. I am the only one I know of, personally. I understand that Rocketeria has many other adult students, but I am not to the point yet where I attend any of their jam sessions or socialize with them. For me, the reality is this:  listening to my fourth-grader, Matt, who has been taking lessons for a couple years and is a much better player than me. He is at this moment practicing his version of “Blackbird” by the Beatles for the school talent show next month.

                But while it was nice to learn that there is precedent for grown men and women suddenly picking up the guitar, on the other hand, this article was also kind of annoying. The writer and/or the editors played up their theory that middle-aged people who decide to learn to play the guitar probably harbor fantasies of playing in a rock band. The article was titled “Rock Dreams.” It compared the Middleway Music Studio to Jack Black’s “School of Rock.”

                This did not ring true to me. And I thought it was a little condescending. Do I have rock n’roll fantasies?  Not so much. Or at least, it is a lot more complicated than just that. But it got me to thinking about why was I doing this, anyway?

                God knows, I harbor no secret desire to rock an arena. Please. I have not taken leave of reality. I have no wish to be Joan Jett or Pat Benatar. I get that I am a middle-aged semi-bald housewife, who does not know how to sing, and has other things to do all day, and I’m fine with all of that except the bald part. But that is not why I wanted to learn to play the guitar, and I bet it’s not why a lot of these other grownups are taking guitar lessons, either, whatever the Washington Post features desk may think.

                I can’t pick out just one reason I started taking guitar lessons. There are probably three or four different reasons.

                I signed up for lessons after two of my kids had already been taking lessons for some months. This was about a year after I was diagnosed with cancer. At that point, we were not at all sure how the cancer thing was going to turn out. So I started working on my bucket list. Learning the guitar was on that list.

                I had tried to learn guitar twice in the long-ago past, once in college and once in grad school, and I totally fizzled at it. I was working two jobs and going to school, didn’t have time to practice, didn’t really have the money for lessons. My friend who tried to teach me was a great guitar player but not a great teacher. I am sure my practicing annoyed my roommates. Whatever the reasons, I washed out, twice. But when I got cancer, I realized, I can’t die without learning how to play the guitar.

                Happily, I have turned out to be a very slow learner.

                Now, in the middle of this Post article, there is one quote from Manny Bernardo that gets at something a little deeper than rock n’roll envy. He says his adult students are mostly busy professionals. He talks about how he keeps the boring practice drills to a minimum with his adult students, because they have enough boring technical stuff to do in their day-to-day life already. He says, “Music is the way for them to make a connection with something that is almost quasi-spiritual.”

                I am sure the bankers and lawyers featured in the Post article get this point. It may feel soulless to them to spend their days racking up billable hours. It certainly feels soulless pretty often to me to spend my life driving the Mommymobile around Montgomery County to soccer games and orthodontists’ appointments. But music is art, and art is the opposite of soullessness--even the art of very crappy beginner guitar playing.

                What is art, anyway? It depends on what day it is. Sometimes it is communication. Sometimes it is just self-expression. God knows, I paint many pictures that never see the light of day. But sometimes you find one that speaks to a friend, and that moment is golden. Music is a lot like this. It has the potential to be beautiful and communicative (at least someday, I keep telling myself). But maybe right now the only person on the hearing end of the equation is God himself, that’s valid too. It says in the book of Romans that the Holy Spirit intercedes for us in sighs too deep for words. I believe music can be like that. It can be a means of grace.

                Now, this year has been really hard, in a lot of ways. One of my kids has been sick, another injured. My brother and I both have cancer. And both my best friend’s mom and my mom died in the last several months. Loss is sometimes beyond words. But maybe not beyond music. My goddaughter played the piano at her grandma’s funeral. She played the tuba to cheer me up after my mom died. My friends took me out dancing after we had my mom's funeral. That’s what music is for. That's why you have music at funerals.

                Of course, most of the time, it’s not that dramatic. Usually, music is just quietly beautiful, and beauty is something to steep oneself in. Nothing wrong with that. As it says in the book of Philippians, “Beloved, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is pleasing, whatever is commendable, if there is any excellence and if there is anything worthy of praise, think about these things.”  If excellence comes in the form of a song by Emmylou Harris or the Beatles or a wonderful harmonica solo or some great line by Bob Dylan, that’s fine with me. Let’s wallow in that for a while.               

                It also turns out that learning something new is just good for your brain. Learning music is good for fighting chemo brain, it turns out. Chemo brain is where the very toxic chemotherapy drugs take out mass quantities of your brain cells. It particularly messes up the parts of your brain that are in charge of organization and planning. My friends can tell you I was never good at those things and now, God help me, I am truly a mess. But academic studies are now coming out that show that cancer patients with chemo brain can help themselves regenerate the old brain cells by learning new things and engaging in the arts. Learning to make the right hand do one thing while the left hand does another and the eyes try to stay on the right line of music and the brain tries to remember what those notes are and what the words are—that is all really good for your poor brain cells. Ha!

                In some hazy future, it might also be helpful in a more mundane way. Maybe someday I will want to play a song at church. And, as I am still trying to figure out what I will do when I grow up, one thing I have considered is a program at the Wesley Theological Seminary in DC called Theology and the Arts. It prepares people who are planning to go into some kind of ministry to address the connections between faith and the arts. By “arts,” they mean music, writing, drama, visual art, and dance. And various hospitals around here have programs to train people who want to work with cancer patients, including art therapy options. Now, I am mostly a painter, but if I end up doing one of these programs, it might come in handy to be able to play the guitar and/or read music. Again, ha! Way opens, as the Quakers say. Sometimes the parts of the puzzle are falling into place before we even realize they ARE parts of the puzzle.

                And, at the end of the day, playing the guitar is just fun. I don't need to be on a stage to have fun with this. Sitting in my office playing, or singing with Jeff in his practice room at Rocketeria, is just plain fun. Nothing wrong with that, either!  It makes my blood pressure go down, I can feel it. I find myself smiling hours later. As Dr. Seuss wrote, in One Fish Two Fish, “Did you ever fly a kite in bed? Did you ever walk with ten cats on your head? Did you ever milk this kind of cow? Well, we can do it. We know how. If you never did you should. These things are fun and fun is good.”

Not even funny

                Well, forget anything I said in my last post about getting naked at Jerry Johnson Hot Springs, or any other public place, for a very long time. I guess I had understood, intellectually, that it would take a few months before this process was finished, and this stupid breast would be presentable. But I had no clue how unpresentable it would be for now.

                We are talking absolutely gross, here. Sideshow freaky. I may never get naked again.

                Stop reading right now if surgical detail makes you queasy, or if you have, or have ever had, any vested interest in having sex with me. This is nasty. And John should probably just stop right now and get on a plane and go to China for a while.

                I went back to the plastic surgeon today to get the stitches out, or most of them, anyway. The plastic surgery nurse sat me down and talked to me quite seriously before she got to unwrapping me. She really didn’t want me to freak out when I saw myself.

                Just know, she said, that we make the nipple big. Way too big. It’s going to look seriously, much too big. It’s supposed to be really, really too big. Because as it heals, it shrinks, and it’s your own tissue as well, so your body just absorbs it right up. We have to make that nipple just HUGE so that there’s something left at the end of the day. Because it would just suck if we did all this surgery and anesthesia and such and in the end, that nipple just disappeared.

                Oh, and if it turns out in the end that we made the nipple too big, we can always just trim it later.

                I have never heard the words “trim” and “nipple” used together that way, a verb and an object. I thought I was freaking out at that point, but then they had me actually look at this nipple, because they wanted to show me how to change the bandage. I am expecting “big,” as in thick, or swollen. But what is there is long. Long and dangly.

                Okay, NOW I’m freaking out.

                “It looks like a penis dangling off there,” I stammered.

                “I’ve heard it called a ‘troll penis,’ before, actually,” the nurse admitted.

                My surgeon, who I share some degree of camaderie with by this point, explained helpfully that she sewed it on the good way. Sew it on the other way, she said, and not only would it look like a troll penis—but it would have bent the other way, and actually it would have looked like a troll erection.

                Good God.

                 I mean, it was funny, but I felt like crying.

                “I promise you, I promise you, it will shrink,” the nurse says.

                It had damn well better shrink. It had better get “absorbed.” It will have to be the kind of “absorption” that happens fast and loud, like when my kid slurps up spaghetti noodles, one at a time, like a retractable cord retracting. Because this is hideous.

                I have never been unhappy with my body, ever, really, that I can remember. But I’m pretty unhappy with it now. This is by far, the worst that any part of me has ever looked. Even the radiation burns were less gross than this. I would run away screaming myself, if I could.

                Do apple trees feel like this when we graft things onto them?

                Now, the surgeon and the nurse were just delighted with how this thing is looking. Really pleased. There is no sign of infection whatsoever. Great blood flow. Everything is hunky dory. I understand I should be happy about this, and that instead of trying not to cry because of how revolting it is, I should be amazed at what medical science can do. But I’m not.

                They showed me an elaborate system for rebandaging this thing every day. It involves special sticky sealers and up to 20, yes, 20, layers of gauze, every time I shower, with a cut-out made for the troll penis with a sharp pair of scissors that I have sterilized with alcohol first. We have to keep this monster swaddled straight, too, pointed exactly front-and-center, or it could go crooked and stick like that forever.

                I am not making this up. They had to show me how to aim and focus my bra so that we don’t get any drift.

                Now I am sitting here afraid to move, basically. What if I pick up a basket of laundry and whack this thing? What if reach up on the high shelf (where the Scotch is, maybe) and I pop a seal? Maybe I just need an armored Madonna-style pointy bra, like the Amazon women in the trashy comic books.

                For the first time, I seriously wonder whether I should have done the whole reconstruction thing at all. For what? For this?

                I asked, when can I go back to the gym?

                “In a couple of weeks,” the surgeon says. “Nothing that involves bouncing.”

                Walking yes, running no. Friction is bad as bouncing, and bouncing is right out. So the fitness gains I had made are pretty much going out the window, too.

                I don’t feel like bouncing, anyway.

               

                

Post-surgery update

                Just a quick note to let you all know the surgery went very well, indeed.

                “Now, that’s a happy nipple!” said the nurse who re-did my dressings today.

                Really, it was much, much easier than I had expected. The surgery itself was over before I was aware it had started. Yay for general anesthesia! I only took the painkiller, oxycodone, for a few hours, as it made me dizzy and nauseous. I took one pill for the nausea, and I went to bed. I woke up yesterday very dizzy, and bright red. Somewhere in that IV they had stuck some steroids to help fight nausea, so I looked pretty red there for a few hours. I used to look like that a lot during chemo. By noon, it had all worn off, and I was fine, and that was it.

                The surgery was Tuesday. This is Thursday, and the pain level is nearly zero. There is a little irritation where some of the bandages are. That’s pretty much it. I get stitches out and so forth on Monday.

                My plastic surgeon explained to me that there was one sort of decision that had to be made about where the nipple went, in the end. There are two ways of locating the best place for a nipple:  1) centering it in the ideal place on the breast, so that one breast looks great, or; 2) centering it in the ideal place relative to the other breast, so they are level and such.  Now, these two spots are not necessarily the same, because people are asymmetrical and especially so, when you have been new-and-improved, as I was. So in the end, she split the difference and fudged it. I am sure it will be fine when it all gets unwrapped. This did all involve some measuring tape and a Sharpie pen and some fifth-grade geometry skills.

                The last step will be getting this Frankenboob tattooed so it is the same color as the other one. Can’t do that for a couple months, until the nipple settles down a little. The plastic surgery nurse said the tattooing really distracts visually from any scarring and really fools the eye. She said when this is all done, if I should get naked, say, in a gym changing room, and someone sees that breast, they might not notice anything is wrong.

                I should have told her, but I didn’t, that my own personal goal is that, in the end, if I choose to go to Jerry Johnson Hot Springs next time I head out west, and if I choose to get naked with the other folks soaking there, nobody will run away screaming, or at least, if they do, it won’t be because of the Frankenboob. We'll see how that turns out.

What I've been doing the last few weeks...

                Well, it has been a while since I checked in with you all. A lot of stuff has been going on, so it’s time to catch you up. Basically, my mom, Ruth, got sick in December. It seemed to everyone, for a few weeks, that she was going to get better, but a few days after Christmas it became apparent that she wasn’t. She died on New Year’s Day, in Missoula, with her children and friends all around.

As it happened, while we had all thought she just had a really bad case of shingles, it turned out that the pain from the shingles was masking pain from something more serious. She had blood clots in major arteries in her intestines, probably as a result of a cancer metastasized from somewhere else in her body. This caused her to die of a massive, overwhelming infection. We will never know where the original cancer was. She went from diagnosis to hospice within a few hours.

                So I haven’t been writing much of anything about my own cancer. The only thing I’ve felt like writing about is my mom, and I am not even ready to write anything useful about her yet. She was wonderful. I had thought I was prepared for the possibility of losing her. After all, she was 88 years old, and I’m a grownup, and I’ve lost people before. Well, I was wrong. Preparing yourself for losing a great mom isn’t something you can do; you just experience it when it happens. It is like riding a tsunami. Waves of sadness keep washing over me. It wasn’t something you could prepare for.

                I will say, I am blessed with the best friends a person could have. At each point in the last month when I thought I could go no further or my head was just going to explode, one of my friends would miraculously show up. My brother was on the same flight from Seattle to Missoula as I was.  My high school sweetheart, who I had been trying to locate for months, appeared when my mom had been asking about him. My dear friends, Dave and Natalee, were passing through Missoula on their way from Helena, Montana, to their home in Seattle, on the very day my mom died. My college roommate, Anne, saw on Facebook what had happened, and she drove ten hours from Seattle to be with me. My old friend, Steve, took me for walks when I needed to get out of that hospital room, and he made sure I ate food from time to time. He and Anne sat up with me until 4a.m. the night of the funeral, drinking Scotch and playing Ban anagrams.

                I have been back in Maryland for two weeks now. Life plugs on. My own stupid cancer gave me another scare last week, when I found a suspicious lump in my “bad” right breast. That surely got my attention. But the doctor says it is nothing to worry about, just something interesting that happened. Basically, the implant in there has flipped over, like a breech baby. Now back of the implant has a little round lump, where they sealed it after they filled it with silicone. But now it’s back-to-front, and the lump is on the front, where I managed to find it. Who knew that could happen? The doctor said turning it back around would be, basically, way unpleasant, and I should just learn to live with my little idiosyncrasy. I’m fine with that.

                I’ve had it with “way unpleasant.” As it happens, I am going in for my next round of plastic surgery tomorrow morning. I have already in hand some serious nasty controlled-substance pain pills. This is the surgery where I get to have a skin graft. They peel off a piece of me from my left side and graft it onto my right, to make me a nipple to replace the one that I lost in the mastectomy. When I met with my plastic surgeon, Dr. Kathy Huang, on Thursday, she once again asked me if I wanted to be awake for this procedure. And I laughed at her again. What part of “Hell, no!” had been unclear? I told her, again, not only do I want to be as asleep as I can be, but I would prefer to be asleep somewhere on the planet Mars.

                But she and I always have the most surreal conversations. Most of them would be pretty funny if you were a fly on the wall, listening. For example, tomorrow, my surgery is at 7:30a.m., but she was explaining why I have to actually be there by 6a.m., without benefit of coffee.

                “We have to decide where we are going to put your nipple,” she says.

                I am thinking, it would not take me 90 minutes to answer that question. I already have a pretty good idea where I would put it. But maybe I’m being too much of a traditionalist.  I will consider my other options. I hadn’t realized there were other options. I would have stuck it right about here. Measure twice, and cut once, I would say. This is more math than art, right? But possibly I am wrong. Maybe there is more to this than I thought, and this is going to involve a compass and a plumb line and a big black Sharpie pen and be way unpleasant.  And all without coffee.

                My doctor also gave me a two-page, typed list, with three columns of small print, of the many drugs I must not use as my surgery approaches. Fortunately, Scotch is not on that list. I can’t drink anything, including water, after midnight tonight. But that means I still have a good hour left…