Cut-and-paste takes on a whole new meaning

                We have reached the point where I become a human arts-and-crafts project. Squeamish persons, read no further.

I went to see my plastic surgeon this morning to plan the next round of surgery, in which they install a nipple in my right boob. Right now that naughty boob is roughly the same size and shape and texture as the other one, only it is blank:  no nipple or areola or anything on the front. So the plan is as follows:  they do a big old skin graft.  They take a section of skin from my left armpit, where my smart surgeon cunningly left some extra the last time she was cutting and pasting in there. And they take that bit and fold it into an origami nipple. And then they applique it onto the blank boob. And my boobs and I live happily ever after.

The doctor says in all probability, the new nipple will be slightly smaller than the old one. It’s hard to get it exact.

I can live with that.

It’s outpatient surgery, down at Sibley Hospital down in DC again. It will take about an hour, and they know enough by now to bring me coffee the minute I get to the recovery room.

It both amazes me and creeps me out that we can do this sort of thing, with my own living skin, as if it were nice paper from the scrapbooking aisle at Michael’s.

There aren't all that many decisions to make. My surgeon did ask me if I would like to be awake while they do the skin graft. I just looked at her.

Hell, no!  Good Lord, what sort of a question is that? Why would I want to be awake for this business? So I can watch? Unless they want me to be really, excessively drunk or something instead?  No, thank you! Really, that struck me as a silly question. Ugh. Do I look like a masochist?

This is all going to happen in January. And then another three months before they tattoo the areola on there and this spate of fixer-upper work is done. Apparently I have to be awake for that tattoo part. It doesn’t warrant general anesthesia, or any anesthesia, really. Their thinking is, most of the nerves in there are mostly disconnected anyway.

(What’s several dozen needlesticks in the nipple, anyway? Aren’t you a badass Montana girl?)

The assistant sort of laughed and said I could have a margarita first. Yeah, right, a margarita…  Silly assistant!

My surgeon recommends the Rockville tattoo artist, Tina Marie. But I have friends who speak highly of Vinnie from Baltimore. I wonder which of them is more likely to turn a blind eye to a hip flask of Scotch?

Silver anniversary!

Forgetting to breathe

                So, I paint pictures, and this week my painting teacher didn’t like the way I was sitting there fussing over my painting. She told me I need to stand up while I work.  Stand up, and paint with my whole arm, on big canvases, with great big brushes.  Basically, I need to loosen up.

                I’ve been hearing that a lot lately, from different directions.

                I told her I was working on it.  I explained that my general style was tiny, miniature little pictures of flowers and such. The last few were 4x4 inches. I did them with tiny little brushes, size 10/0. I did them hunched over the dining room table. They are pretty constricted.

But, I told her, I had an epiphany a couple months ago. While looking at an exhibition at the Dana Gallery, in Missoula, Montana, of paintings of the modern American West, and I realized that most of the ones I liked were big. And they were loose, with lots of crazy brush strokes and bright flashes of primary color.  In short, they were the opposite of what I’d been painting.  So I went home and bought an easel.

“What did you use before that?” my painting teacher asked.

“I hunched over the dining room table,” I said.

She just stared at me. I told her the biggest painting I could remember doing was 9x14 inches.  Hadn't ever needed an easel. She was incredulous. She said the first painting she had done in her first class was 4 feet wide. So then she made me stand up while I worked on a huge (for me) still life, and she only let me use the largest brush I had, which was a size 8.  I had only bought it because it was on the required supply list for the class.  It was bigger than any I had ever used before.

(Top: my normal size 10/0 brush next to my new size 8 brush)

(Below: One of my typical tiny paintings next to my huge practice one)

But it felt so good! My back didn’t hurt! She had good music playing. Can you paint and dance at the same time? Ha! I can! It only took 50 years and getting cancer to find out.

Or there was the day, a couple weeks ago, when I went to the gym, and my trainer was watching me nearly explode over some weights.

 “Nicely done,” she said. “Only thing is, you stopped breathing.”

“I did?”

“You totally did. You have to breathe. It will be a lot easier if you don’t hold your breath.”

We have also had to step back from some of the heavier weights and put more time in on stretching, and loosening up my really tight back and my really tight hamstrings.

Then there was my guitar class the other day.  My left hand was so tense, my ring finger actually locked up and I would have to unlock it while moving from chord to chord. As you can imagine, this did not result in any sort of musical flow. My teacher, Jeff, had to think about the physics of what I was doing.  You have to straighten up your back, he said. You have to breathe. You may want to try some relaxation exercises.

He was trying to teach me a Rolling Stones song, and I was struggling over the introduction. I was trying to play all the eighth notes with my stiff little fingers. But then Jeff said basically that Keith Richards hadn’t been reading eighth notes when he played that. They weren’t spaced exactly.

“He was just feeling it.”

Just feeling it.

Have I tried that with my painting? Or am I trying too hard to make my painting look like a photograph. If a photograph is what I want, why don’t I just take a damn photograph and be done with it?

Just feel it. Remember to breathe. Big brush strokes.

I keep hearing this over and over. And if it applies physically, if I am that tense in my hands and back and neck, what about my spirit? Oy vey. What does this mean for various choices I am making? And what am I doing to my kids and other people around me?

And what has this got to do with cancer? A couple things. I was always a tense person, a worrier. My son, Matt, has an anxiety disorder.  Well, he comes by it naturally. They weren’t diagnosing people with all sorts of psychiatric disorders when I was a kid, but they probably should have been. In any case, I made it through middle school and high school on a steady diet of antacid pills. Often, I had trouble sleeping. I was wound pretty tight, as they say.

Now, take a person like that and give her Stage 3 breast cancer, and it doesn’t make her any less tense. Actually, it makes her extra-tense AND extra- impatient. If there is only so much time left, you don’t want to waste any of it. You are pretty much in a hurry. And you aren’t messing around, either. If you do something, it has to be right. If you’re doing a painting, every stroke has to be just so. You can see where this is headed. Your neck gets sore, and your hands ache, and you don’t like the painting when it’s done, anyway. You wish it were more like those big, loose, colorful ones you saw in Montana.

So, I’m working on it. Of course, all this will have implications I am only beginning to imagine. For art, for guitar. For career and relationships. For parenting. For religion. For sex, for all I know. It’s going to be interesting to find out. I could scare people. This could be fun. There could be Keith Richards in there, trying to get out, unevenly spaced but just feeling it.

 

One year, cancer free!

                It was one year ago yesterday that my radiation oncologist told me I am “cancer-free,” as far as anyone knows. I only know this because it turns out my daughter, Julia, started keeping a diary the day I was diagnosed. She has, so far, filled up a paper diary and part of a hard drive with it. I did not know that. It goes to show you that cancer affects everyone, not just the patient. Anyhow, she looked it up and congratulated me on my anniversary.

Different people celebrate their cancer survivorship on the anniversaries of different milestones. I think my big celebration will always be March 9, the day I was diagnosed. That day is etched in my mind as the day everything changed. On November 1, not much happened except I had finished radiation, on schedule, and had a quick meeting with the oncologist. I remember it more from being told I would never be “cured,” than from being told I was already “cancer-free.” I suspect Julia prefers the Nov. 1 date because she is at heart an optimist and she would rather celebrate a more-upbeat occasion.

                The start of November also means I need to announce the winner of my month-long contest on Facebook in which I asked people to submit photos of the most offensive pink ribbons they could locate during Pinktober. There were some doozies! It was hard to choose the winners. Some pink ribbons were more ugly, some were more obviously not going to raise any money for actual cancer-relief purposes, and some were on products more likely to cause cancer than to cure it. So I just settled on what I found personally the nastiest.

                I disqualified a couple of photos people sent me, because while they were pink and awful, I could not be sure the items depicted were real. Steve sent me a photo of a pink tank he found online. It was awful, but possibly Photoshopped. My son, Matt, also located an image of some cigarettes with pink ribbons on them, but again, I think someone created them just for the irony of it. Steve also found a photo of a truly offensive (but pink) AK-47, but instead of pink ribbons it had Hello Kitty logos. Not good enough!

                I disqualified two of the best entries on the grounds that they were mine, and since I am also the contest judge, that would have been a conflict of interest. But they were preposterous. One was the large, juicy-looking steaks Safeway was advertising with pink ribbon stickers all over them. The other one, also at Safeway, was Mike’s Hard (pink) Lemonade with pink ribbons all over it.  My doctors tell me that alcohol and extra fat are things that can actually cause breast cancer, so I think these pink ribbons were particularly questionable. But I can’t win my own contest, so the winners are:

 Third place goes to my daughter, Julia, who found a remarkably ugly car air-freshener in the shape of a lurid pink ribbon that looked more like a condom or something. I am sure it did not raise money for anything useful.  Second place goes to Kathy Bittinger, who found some pink Porta-pots of Awareness.  And, drumroll please, first place for the ugliest/least sensitive use of a pink ribbon goes to Kathleen Morrish, who found a horrible urn with a pink ribbon on it. Seriously. It’s depressing enough to have cancer, without having to imagine your bodily remains spending eternity in something like that! (Note to friends and family:  When I die, scatter my ashes on a mountain in Montana. Do not keep them on the mantle in an ugly urn with a pink ribbon on it!)

By the way, Kathleen’s prize is a coyote-ugly Tape Dispenser of Awareness. I believe 50 cents of the purchase price actually goes to a bonafide cancer charity, so it’s not entirely pointless, and if your tape needs dispensing, hey, look no further. But boy, it is ugly.

What R U Thankful 4?

                I teach Sunday school at Mill Creek Parish United Methodist Church in Derwood.  Currently, I am one of the teachers for the 4^th- and 5^th-graders, including my son, Matt. One of my teacher duties is to put up the November bulletin board in the hallway, which I am working on. The subject is, because of Thanksgiving, of course, “What R U Thankful 4?” So I've been thinking about that. The last two weeks I have so much to be thankful for myself, particularly in the cancer department, that I should at least mention them here.

                --In the course of my recent reconstruction surgery, they did routine biopsies of everything. The results came back yesterday, and they are all clear. Yay!

                --I survived the first of what I hope will be many years’ worth of boob MRIs. Should have the results back soon. I am thankful for not freaking out, because I didn’t realize it would involve 20 minutes in a closed MRI tube. If I had realized that was going to happen, I would have asked for a  Xanax or Valium or something. I am claustrophobic, and this was about all I could handle. But I made it through without totally freaking out, though I was close to tears when they got me out and I was shaky for a while. When I got out of there, I drove straight to the Lindt chocolate store for some life-affirming truffles. Yay!

                --The boobs continue to heal and readjust just fine. I am so glad I decided to do the reconstruction! I impressed my trainer yesterday very much by demonstrating that, in fact, I still have nearly complete freedom of motion both my shoulders, which we had thought was going to be an issue.  I am allowed to go back to light exercise at the gym now, but no weights for another couple of weeks. Yay on all counts!

                --This whole exercise has provided numerous opportunities for completely embarrassing and horrifying my children. Always gratifying.

                Example:  In the carpool line, someone shouts to me, “Hey, haven’t seen you in more than a week!  Where you been?” 

                And I shout back out the minivan window, “Oh, I was getting my new boobs!  They turned out great!” 

                Julia and Matt sink into their chairs in abject horror.

                 “Mom, you can’t DO that!  You can’t shout the word ‘boobs’ in public like that!”

                “Well, I just did. Do it again, if you want.”

                Wish I had it on film.

                --Meanwhile, all the Pinktober hullaballoo has encouraged various friends and relatives to go and get their mammograms, Pap tests, etc. Thank you!  One who had a suspicious situation was found to have nothing scary or alarming going on.  Yay!

                --Last weekend, my friend, Steve, who is our school athletic director and my daughter’s soccer coach, and who himself has been battling lymphoma for several years-- including a bone marrow transplant and everything that goes with that--was well enough to run a 5k!   Yay!

                --Also last week, that same man, along with Julia and her whole soccer team, played a game with two pink soccer balls of Awareness.  I was hanging around waiting for them after the game; I wanted my daughter to take a photo of me with one of the pink soccer balls, because all this Pinkness amuses me. But after the game, while the girls were still in their huddle, they all signed the ball and called me over and gave me the game ball and said kind words about my "warrior spirit."  Coming from Steve, who had just battled back from a bone marrow transplant, and from my daughter and her friends, some of whom had pink ribbons in their hair, this completely made me fall apart.  I cried all over the place. A very cool moment.  Thanks, guys!

Thanks to my friend, Kathleen McKay, for the photos!

                

Reconstruction progress!

                I wanted to update you on my main reconstruction surgery, which happened almost two weeks ago now.  Time flies when you are taking drugs! Seriously, though, I stopped taking the drugs pretty fast.  The pain just wasn’t that bad, and the drugs made me think I had scorpions in my hair. I am now back to the occasional Advil and a glass of wine, and am scorpion-free. It’s sore, but nothing I can’t handle. Getting my last wisdom tooth out was a whole lot worse. I was worried about getting some sort of terrible post-op infection or something, which one of my friends did following her reconstruction, but everything went fine.  Thank you all for your prayers!

                The day I was diagnosed with cancer back in March 2011, or maybe the day after, a friend of mine who did this whole miserable trip a couple years ahead of me told me they can work miracles with the plastic surgery, nowadays.  Of all the things I could be worrying about, she said, I shouldn’t worry about my physical appearance at the end of the day, because they could fix it.  In fact, she told me, if we weren’t at a P.T.A. meeting at that moment, which we were, she would whip them out and show me just how happy the girls could be in the end!  I replied that was not necessary, I could take her word for it, but I was very, very encouraged to hear it.  In later months, I hung onto her words and would tell myself, things might look pretty atrocious right now, but we are going to fix them.

                Well, fix them we did.  Or, at least we are well on our way.  I had outpatient surgery on Sept. 19.  The surgery took about three hours. On the right side, where I had the mastectomy, they replaced the temporary “tissue expander” with a regular old implant.  The other side, they just reduced and hoisted everything up to the same level as the other one.

                I am amazed at how much better things look and feel already. The tissue expander felt pretty much like a cannon ball in there, or maybe a duckpin bowling ball.  The new implant feels like you would want a breast to feel.  Yay! The metal parts are gone, so I can now have my regular M.R.I. to make sure nothing wacky is growing in there. And my boob will no longer set off the T.S.A. metal detectors when I get on an airplane, which will be nice to never have to explain to a T.S.A. man again.

                I am awestruck by the artistry of my surgeon, Dr. Kathy Huang.  She had to visualize where the one side would end up after one kind of procedure, and then imagine where the other side ought to end up, following a completely different procedure, and then execute.  And she did!  The symmetry she achieved is more than I had hoped for.  Oh, it all still looks pretty terrible, because of bruising and swelling and stitches and such.  So don’t worry about me posting any embarrassing inappropriate photos here anytime soon. But I can see where it is all headed, and it is headed toward a good place.

                Recently, a photographer called David Jay has promoted something called The SCAR Project.  He makes beautiful portraits of young women with breast cancer, scars and all.  The portraits are very powerful and many are very beautiful. But I was struck, reading the online comments people have left on some of them, by how much some people were put off by the scars.  Some of the saddest comments came from women, and there was one that horrified me, from a woman who said she would rather die of breast cancer than have her body scarred like that. It broke my heart that she thought those were her only two options. They are not. I want people to know that.

                Anybody that is reading this who is facing breast cancer themselves, or in their family, know this:  you can ask your plastic surgeon to see some of his or her before-and-after pictures.  They should have a portfolio of them to show you. Or, in a few months, I will have some of my own that I would be willing to share if it would help.  Yes, you can look decent again.

                Now, I have two more “procedures” to go.  In a few months, they install a nipple on there.  How this works, I do not know, but it sounds like it involves human embroidery, or a combination of embroidery and  origami?  They have promised to knock me out again so I don’t have to watch whatever they do. 

                A few months later still, the other procedure involves a tattoo artist. It might also involve a bunch of wine, on my part, or maybe worse. My brother tells me that traditionally, you get drunk and then decide to get a tattoo, not the other way around.  But I do not personally want to be mentally present while they stick needles in me, repeatedly, in my nipple, for God’s sake. As it happens, when you have a mastectomy, there comes a point on the morning of the surgery when they have to inject you with radioactive isotopes so they can find all your lymph nodes. Unfortunately, they have to do this several times, right in your nipple, with absolutely no pain medication because that interferes with the way things flow. They don’t tell you about this in advance, because it hurts like hell and they know it, and they can’t do anything about that. Those were probably the most painful physical moments of this whole stupid process, for me, so far.  So, when I get tattooed, I plan to be comfortably numb, one way or another. Negotiations continue on this point.

                I do get to start doing limited, non-bouncy forms of exercise today.  Yay!  It will be another couple of weeks before I can do weights or run.  But we’re getting there!

 My plastic surgeon, who is an artist and a genius, Dr. Kathy Huang

Church with Bruce

                

                Following the general cancer survivors’ motto of “Get Busy Living,” on Friday, John and I dragged our three children to a Bruce Springsteen concert in Washington, DC. John and I had not seen the Boss in 27 years.  Last time we did: the “Born in the U.S.A.” tour, July 4, 1985, in London, at Wembley Stadium. Of course, Bruce opened that night with the song “Independence Day.” The venue was big enough that you could go down on the field and dance if you wanted to, and everybody did. Bruce played for four hours. That was our second date.  It was amazing.

                I wanted my kids to experience that.  I wanted to experience it again. My oldest kid, Sean, is going to college next year; when would we have the chance to do this again, together?

                My older kids were open-minded about going to see Bruce, but Matthew, who is nine, really and truly didn’t want to go. He would have rather gone anywhere else. He would have rather gone to the doctor for a flu shot.

                He was remembering too well being dragged, by me, for my birthday treat, to a Willie Nelson/John Mellencamp/Bob Dylan concert at a ball park in Aberdeen, Maryland, a couple years ago. That concert was awful. The Willie Nelson portion of the evening was washed out when a severe thunderstorm caused the authorities to shut the show down for a long while.  Mellencamp was okay. But when Dylan finally appeared, he clearly did not want to be there. He phoned it in. Every song sounded the same. He didn’t interact with the audience at all. The crowd was pretty much drunk, having had nothing to do during the rain delay but drink beer. It was the saddest excuse for a concert I had ever seen. And it skewed my children’s faith in my musical tastes forever.

                I promised them that Springsteen wouldn’t be like that. Really. It would be fun. They would be singing and dancing themselves before it was over, I swore.  But Matthew still begged for me to find a babysitter rather than make him go.

                “You are coming with us and you are going to enjoy it, dammit!” Hey, I know how to put everyone in a party mood.

                Needless to say, the minute we got to Nationals Park, the baseball stadium where Bruce played, Matthew came around right away. The energy was just there, and even Matthew knew it. Bruce played until midnight, and there was not a complaint or a whine the whole time. Matthew fell asleep eventually—a skill I would love to have—but he fell asleep happy.

                So, what does all this have to do with a cancer blog? Two words:  Clarence Clemons.

                Clemons, the “Big Man,” was the E Street Band’s saxophonist since, what, 1971?  He died last year, following a stroke.  If you have ever heard any of Springsteen’s more rocking songs—“Rosalita,” or “Jungleland,” or whatever, when you get to the part where there is an intense sax solo, that’s Clemons. He also played with many other artists, including Aretha Franklin and Ringo Starr and Lady Gaga.

                Clemons was a huge part of the E Street thing. If you Google Clarence Clemons images, you will find many photos of Springsteen and Clemons together. My own favorite is on the cover of the album Born to Run. On the front, you see a very young Springsteen laughing and leaning on someone.  If you see the back of the album, the rest of the photo, the person he’s leaning on is Clarence Clemons.

                So Clemons’ loss left a big, gaping hole in the E Street Band. I am looking for a metaphor here, but struggling to find one, for a loss like that. It was hard for me to imagine how Bruce would continue being Bruce without Clarence Clemons. How would he ever make the music sound right again?

                Eventually, Bruce hired Clemons’ nephew, Jake Clemons, as his new saxophonist. I was sort of afraid this would turn out to be a lame gesture. What if Jake wasn’t up to it?

                Well, he was up to it. He was there at Nationals Park with Bruce on Friday, and I can tell you, he’s great. Every time he showed his face, the crowd went nuts.  As John put it, he was channeling his uncle. At one point Bruce stopped and said to Jake, “I wrote this song before you were born!” And that was fine, because Jake was totally rocking it.

                As the evening unrolled, it became clear that it was all going to be, in part, anyway, a big, fun, rocking memorial service for Clarence Clemons.    It was like going to church. It was a big revival meeting. And the sermon was on coping with loss, great loss. It was on how you cope gracefully with loss, not with denial, but with hope.

                Of course, every person has loss of some kind to deal with. In my case, I have breast cancer. My self-help books and mental health professionals tell me I am dealing with loss right now, whether I know it or not. I am supposed to be mourning the loss of my old physical body in general and specifically, my right breast. I don’t think I am in denial when I say I do not feel like I am mourning that right now. I am not in denial. I know what I look like. It’s not so bad with clothes on. I mean, a good bra can cover a multitude of sins. But I have seen myself naked. One of my breasts is literally three inches higher than the other one, and it’s messed up. And I have the hair of a seventy-five-year old.

                But I am not mourning those losses yet.  I am still thinking we are going to fix them. The hair, I hope, will continue to slowly come back.  I will be having a bunch of plastic surgery, starting tomorrow, actually, to address the breast situation. I am cautiously optimistic there.

                No, what I feel like I am mourning is the loss of innocence about death.  I know that in theory, we all know we are going to die some day.  But I really KNOW it. I know more and more people with cancer, because of the circles I move in right now, and some of them are dying. And every time I go for one of my three-month checkups, for days afterward, any time the phone rings, I am expecting it to be the oncologist with bad news. Or, I will hear a song on the radio, and think, “That is really a great song. I wonder if Jeff would sing it at my funeral if I asked him,” and I hadn’t even been aware I was thinking about my own funeral.

                My husband said a couple days ago that I should try to think of it this way:  A couple more plastic surgeries and you’re done. It’s over.

                No, I replied. It is never really over.

                That’s the loss that has been bothering me lately. I am just tired of the knowledge of it. Knowing it could come back any time, knowing life is fleeting, wondering if the spirit lives on, pissed off that the body has to cave in so soon.

                It turned out, a Springsteen concert was the best possible place for me to be this weekend.

                Bruce always talks a lot between songs, and he had two themes going on Friday (and apparently at other concerts during this tour).  One was, broadly, “Trains,” as in, “People get ready, there’s a train a-coming,” or, “This train is bound for glory.”  The other was “Ghosts and Spirits,” and of course everyone knew the lead ghost was Clarence Clemons.

                Bruce asked the crowd what they thought, if anybody was missing anything, missing anyone, feeling the loss, and thousands of people screamed back, “YES!” So did I.

                He sang “My City of Ruins,” which I believe originally referred to 9/11. Now it was just about the loss of his dear friend:

                                Now there's tears on the pillow 
                                darling where we slept 
                                and you took my heart when you left 
                                without your sweet kiss 
                                my soul is lost, my friend 
                                Now tell me how do I begin again? 

                

                And 40,000 people sang back,

                                

                                Come on and rise up! Come on and rise up!

                

                Bruce talked about the spirits that were present with us. He came very, very close to quoting Hebrews 12:1, which goes:  “Since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us.”

                 Specifically, Bruce said, the spirits’ presence with us is to remind us of: 1) who we are; and 2) that today is beautiful and precious.

                Of course, all this led to him singing “Spirit in the Night,” and 40,000 people singing back to Bruce, line and response, like Psalms at church, at church with a fired-up black Gospel preacher:

                Bruce:  And they dance like spirits in the night

                                Forty thousand people:  All night!

                Bruce: In the night

                                Us: All night!

                Bruce:  Oh, you don't know what they can do to you, Spirits in the night

                                Us:  All night!

                Bruce:  In the night

                                Us: All night!

                Bruce:  Stand up right now and let them shoot through you!

It was all very rousing, like it should be at church, when the preacher says, “The Lord be with you,” and everyone says, “And also with you!”  Or like when my friend and minister, Rick, tries to call out to our congregation on a Sunday morning, “God is good!” And we are supposed to yell back, “All the time!”  Or, he says, “This is the day that the Lord has made!”  And we are supposed to answer, “Let us rejoice and be glad in it!” But being mostly suburban white people and Methodists, we are not very good at this sort of thing, especially first thing on a Sunday morning, when we haven’t had all our coffee yet.  It works better on a Friday night, with a lot of drums and sax and 40,000 people and beer.

                Bruce went on to talk about the ghosts not being really dead. I do believe this was the Good News, in rock form. He sang “We are Alive,” from his new album, Wrecking Ball.  It starts out with the cross of Calvary and goes on from there about death and resurrection:

                        We are alive, and though we lie alone here in the dark

                         Our souls will rise to carry the fire and light the spark

                         To fight shoulder to shoulder and heart to heart

                         

                         Let your mind rest easy, sleep well my friend

                         It's only our bodies that betray us in the end

                               

                         

                  I am afraid I am making this all sound a lot heavier than it was.  I would be giving you the wrong impression if I made you think this was all heavy. I mean, we were thousands of people singing and dancing with Springsteen to “Twist and Shout,” and such. It was not heavy. Even my jaded children were singing and dancing.  It was great. In the end, it was more fun than I can express. But it started out with heaviness and loss, and it ended up with singing and dancing. People easily say the words, “It was like a religious experience.” But isn’t this what a “religious experience” IS?

                Toward the very end of the show—in the encore—Bruce sang “Tenth Avenue Freezeout,” and when he got to the part where “the Big Man joined the band,” he stopped and there was a little slideshow tribute to Clarence Clemons, with some very nice photos. It was fitting. I believe everyone was left feeling like we had honored Clemons’ memory, and acknowledged his ongoing presence with us, in the form of his spirit and his music and his nephew rocking out right there with us. You could feel both time passing and the also the cold reality of mortality, but it was okay. It was comforting. It was like church.

                Photo by Sean Roome

Doctor trifecta

                

                It’s the first week of September. Not only back to school, but back to the medical world after a summer break. This week, it was like the Triple Witching day, only with doctors instead of economists.  I got to see my plastic surgeon, my oncologist, and the woman who is administering the drug study I am in. As a bonus, I also got referrals to a geneticist and a gastroenterologist! I hit the jackpot. Still waiting for blood test results, but nobody seemed to find anything freaky.

                But, I have to go see a geneticist. Every month, they are learning more about the genetic basis of some cancers. This month, I learned that if you have the gene for cystic fibrosis, your chance of developing certain kinds of cancer goes up. Something like 1 in 23 white Americans have the gene. Guess who does?  It’s me!  We learned this when I had Matthew. Fortunately, to develop the actual illness, cystic fibrosis, you need to get two copies of that gene, one from Mom and one from Dad, and John doesn’t have it, so the kids are okay. But you only need copy one to increase your risk of cancer, so to the geneticist I will go, to see what we can do about it anyway. It sounds like the first step may be a colonoscopy, hence the gastroenterologist. Yippee.

                I will also need to go back to the OBGYN to have her check out every last female part that’s still in there. I am sorely tempted to have them all yanked out by the roots, while she’s at it. They aren’t doing anybody any good right now, anyway. All they seem to be doing is giving me hot flashes and threatening to kill me. Who needs that? It is clearer to me every day that the female body is cleverly designed to self-destruct like a Mission Impossible cassette tape the minute you stop having children. Why did that need to be the case? Major design flaw, I would say. I should watch my mouth or I will be answering to the whirlwind just now.

                I also met with my plastic surgeon about my first big reconstruction surgery, which is coming up on the 19^th. I decided last year that I am too young to go sailing into the future boobless, or with grossly mismatched boobs. So, although I have always sort of thought plastic surgery was usually silly, here I go. In about two weeks, I am going to have my temporary implant in the robo-boob replaced with a more permanent one, and the other boob, I hope, resized and relocated to match. There will be another surgery a few months after that, and if I live long enough, more surgeries down the road to replace the implant every so many years.

                Decisions, decisions.   I got to decide what sort of implant I want. Specifically, do I want one filled with saline, or one filled with silicone goo?  I instinctively wanted to avoid the silicone goo, remembering recalls of the 1980s where women got sick after silicone-filled implants leaked. But my surgeon recommended the silicone one over the saline one. The silicone one is lighter, she said.  And nowadays, they are not filled with liquid silicone, which used to leak out sometimes, but with a gel that more or less stays put. You get a hole in a saline implant, she said, and it just goes flat.  But you get a hole in a silicone-gel one, and the gel stays where it belongs. I imagined a boobload of Fix-a-Flat, but that was probably inappropriate.

                In addition, my doctor said, the silicone ones look and feel more boobular. There’s less of that waterbed-like wave action. And both types of implants are made out of silicone, so it’s not like you are avoiding sticking a bunch of silicone in your chest if you go for the saline-filled version, anyway. So, I decided, hell, she’s the doctor, and I signed up for the silicone-goo one.  Because, you know, if I am going to mess around with all this reconstruction, I am holding out for total awesomeness. A new saline-filled boob might look okay, and be perky and all that, but if it sloshes around, that’s not good enough.

                What a strange conversation it turned out to be. She asks me if, while she’s digging around in there, she can do a little bit of liposuction “here” and “here,” and she points out where. She thinks it would look nice if she does. Duh! Easy question! Suck all the lipo you want, I told her. I am already going to be unconscious. Go for it. Knock yourself out.

                The surgeon is still trying to figure out whether, on the “good,” boob, we are doing a reduction or just a “lift.” Apparently this will be a game-day decision, depending on my weight at that particular moment. Either way, there will be a scar. This sucks.  But, I had already decided that for me, it would be better to have two boobs with faded scars on them that look like they are part of the same person, than one scarred-but-perky one looming six inches above a scar-free old-lady one, sad as a lonely little wrinkled balloon. Right now, my “good” (i.e., cancer-free) boob is, like, down in the tropics, while the robo-boob is up there in the taiga somewhere.  When I’m done, they are both going to be up there together somewhere in the temperate zone.

                So, I had to sign mondo release forms.  The lawyers are certainly on the case. There was no shortage of release forms. They sure don’t intend to be sued by the likes of me.

                There was a many-pages-long release form about the dangers of surgery in general.  Then, there is a risk of a phenomenon that can happen where your body builds all kinds of scar tissue around the implant and it gets hard as a rock. Or, the other extreme, the implant can shift, or sag, or disappoint in very many interesting ways. Did you know an implant can wrinkle? I can do that by myself, thank you. Did you know that they can erupt like Old Faithful? Actually that’s a lie. I totally made that up.

                But I did have to initial the paragraph where they spelled out, Hon, your breastfeeding days are over. (I can live with this.) I had to initial the place where they gave me fair warning, this might be pretty painful, and for a pretty long time. (I could have guessed this from the prescriptions they gave me for recreational-quality pain pills and Valium.) Oh, and I initialed the place where they say, if it doesn’t work out, you might need a do-over.  You might even need a do-over using spare parts cut off other parts of your own body.

                There was a whole separate waiver form for the silicone-filled implant itself. I read in great detail all the many things that can go wrong, and initialed paragraph after paragraph with gay abandon. Yeah, the silicone could leak. What if it does? I could get cancer or something. Honey Badger finds it difficult to worry a lot more than she already does.

                There was good news, too. The new implant, unlike the temporary one that’s in there now, will not have a big metal valve in it. So I won’t have to explain to the TSA every time I go on an airplane why my chest is setting off the metal detector. And I’ll be able to get an MRI!  Right now, they are strictly forbidden, because they could suck the implant right out of me in an uncontrolled way. Ouch!

                That’s good, because they want me to get an MRI next month.  As part of our plan to be vigilant about any potential recurrence of cancer, I am supposed to get a breast MRI every so often, starting ASAP. My oncologist, who saw me today, actually urged me to expedite that one. I told him I was on it as soon as they remove the metal parts from my chest so I don’t explode. That seemed reasonable to him.

                I am looking forward to that MRI. Every time I have an itch or a twinge in that “good” boob, I start fearing the worst. I imagine lumps where there aren’t any. I understand this is normal. Still, it would be great to have an “all clear,” even a temporary one.

                                

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!