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…

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