Oh, what does she want to talk about THAT for?

                This week, Dr. Peter Goodwin died. He was, coincidentally, like half my family, a South African who eventually settled in Oregon. What the world knew him for, though, was being a champion of what is variously called “Death with Dignity,” “Right to Die,” or “assisted suicide.” He was a medical doctor who helped push through Oregon’s Death with Dignity Act in 1994.

 Since then, a handful of other states, including my own, Montana, have passed similar laws. Basically, these laws allow a terminally ill person to ask a doctor for a prescription for lethal drugs. Of course, this is the sort of thing Montana would allow. Our state constitution enshrines both the right to privacy and the right to human dignity. What happens in a doctor’s office belongs between you and your doctor.  Hmm.  Where have I heard that before?

Anyway, Goodwin’s death gives me an excuse, a news hook, as it were, to talk about assisted suicide. I’ve wanted to talk about it here for a while, but I didn’t want to upset or worry folks unnecessarily, so I didn’t. The one time I tried to have the discussion in person with someone, he got pretty angry and we didn’t get very far. Back then, I was quite sick, and I was thinking about assisted suicide in terms of my own self, if it came to that. Well, now I am in remission, and I am doing great. Assisted suicide is far from my daily personal thoughts. So I thought while everything is calm and peaceful here, it might be a good time to explain my thinking on the subject.

My position was, and pretty much still is, that I am going to do everything I possibly can to stay alive.  But, if the doctors ever tell me my situation is hopeless, my illness is terminal and that I am going irretrievably downhill, I would reserve the right to choose the time and manner of my own death.

Our society is so bad at discussing this sort of thing! Not only does the subject make us grossly uncomfortable, but we don’t even have the terminology for it.  I sort of object to the term, “assisted suicide.” I think that if you are already unavoidably dying, and you kill yourself, you aren’t committing suicide. The word “suicide” implies that you want to die. And in this case, it’s not that you want to die; it’s that if you have to die, you want to do it a certain way. I don’t like the phrase “Right to Die” either, because I don’t believe in a right to suicide by just anyone at any time. “Death with Dignity” is too vague; I believe with the great advances made in hospice and palliative care in recent years, it can be possible in many cases to have a dignified death without taking the step we refer to as “assisted suicide.”

Here is a link to Goodwin’s obituary in The Oregonian newspaper:

http://www.oregonlive.com/portland/index.ssf/2012/03/doctor_who_campaigned_for_oreg.html

                And here is a link to the editorial by The Oregonian newspaper on his passing:

http://www.oregonlive.com/opinion/index.ssf/2012/03/peter_goodwins_lifes_work.html

                This guy does not sound to me like a wack job. He does not seem creepy in a Dr. Kevorkian-kind-of-way. Kevorkian seemed a little icky; he almost seemed to be too into his work, you know? But Dr. Goodwin seems to have come to a similar conclusion from a place more grounded and sane.

Here’s what I bring to the subject:  My father died of brain cancer in 1971, when I was eight years old. This was before the hospice movement. His death was long and drawn-out. He went into the hospital in August, and never came home. He did not die until April. (Eventually, not long before his death, he was transferred to a nursing home.) As he became sicker, he was unable to walk or talk or go to the bathroom. He still understood a lot, which made him crazy with frustration because he couldn’t respond properly. He would try to say something, but nonsense would come out. My brother, who was 10 years old, and I, were not allowed to visit him, because in those days children were not allowed to visit that hospital. (My dad’s doctor allowed us to be smuggled in once, toward the end, to say goodbye.) My mom ran herself absolutely ragged trying to take care of everybody’s needs.

                Of course, nowadays we have hospice care. I hope that a case like his would be handled very, very differently now. But that experience gives me a baseline gut instinct to operate from:  if I ever am in a situation where I am severely and terminally ill, I do not plan to take seven months over dying. I hope to never put my loved ones through the wringer like that, exhausting them emotionally, physically, financially, and spiritually at exactly the time they need to be strongest.

                I belong to the United Methodist church.  I looked up our denomination’s official position on assisted suicide. The church is against it, for two reasons. First, they say it demonstrates a lack of faith. Who is to say a miracle might not happen at the last minute?  And second, they say it usurps the power of God over human life and death. Only God can choose a time for a person to die.

                I guess I just disagree.

                If you are a soldier in Afghanistan, and you throw yourself on a grenade so it doesn’t blow up your friends, but it does kill you, they don’t call you a suicide. They call you a hero.

I think it’s more like that.

                Then there are all the slippery-slope arguments. If you think assisted suicide is okay, what’s wrong with garden-variety suicide? Or euthanasia? Or mercy killing?

Well, as experience in Oregon since the passage of the Death with Dignity Act has shown, legalizing assisted suicide there did not cause everyone to start killing themselves or each other willy-nilly.

And I am talking about acting within very clear parameters, here. We’re talking about a theoretical person who is clearly dying and in pain, making the decision for herself about when everybody has had enough.

 I would not make this decision for someone else.

 I would never do it without a lot of prayer and without checking against the gold standard, which is to compare it to the love and kindness of Jesus. Would Jesus do this thing? That would preclude doing it, ever, out of anger, despondence, exhaustion, or fear.

But if it ever feels right, the loving thing to do, it’s an option.

           Before I undertook any assisted suicide for myself, I would rather try hospice care first. If this were a viable option, it would be preferable. It would make loved ones less uncomfortable and it would honor the sanctity of life. But I can imagine scenarios where even ongoing hospice care would not be my choice. If I knew I were losing my mental faculties completely and irrevocably, for example, or if physical pain became uncontrollable, or if the care were bankrupting my family financially or emotionally, I would reserve the right to make a different choice.

                Another case study from my own life:  several years ago, my grandmother, Julia Person, died in Missoula, Montana, and I was the one who was there with her at the time. She was 101 years old. She was an extremely feisty person, the person after whom we named our daughter. She was quite healthy up until about a week before she died. She had congestive heart failure, but basically all her other systems were working great.

                She had made it very clear, verbally and in writing, to more than one person, including her doctor, what medical interventions she did and did not want. In the event of a severe illness, she wanted to be made comfortable, no more. No feeding tubes or anything else. Her clarity on that point relieved us of agonizing decisions when the time came; we knew exactly what she wanted, and even those of us who would have wanted something else for her had to concede the point. (By the way, this is one of the reasons I want to talk about this stuff now, while we are all clear-headed.)

                She was obviously dying, but she was so strong that it took her more than a week. I had time to fly out there from Maryland. They had time to get her situated in what was basically a hospice ward at the hospital, although it was called something else at the time. For a week, people came and went saying their goodbyes. Grandma eventually lost consciousness. By the time I got there, she was in what I guess you would call a coma. They said it was possible she was still hearing us but she wasn’t speaking. At least one of us was stayed with her around the clock.

                Her main nurse was a guy, whose name I wish I remembered. He was a blessing. He made us feel like we belonged there with her. He made sure there was a comfortable Barcalounger for me to sleep in. He showed me where he kept the coffee, and where he kept the ice cream, and told me help myself at any time.

On Grandma’s last morning, her breathing was really raspy and terrible. It sounded more like drowning. You wanted to help her, but you didn’t know how.  It was early on a Sunday morning, maybe five or six o’clock. I had had the night shift, as it were. My mom and sister weren’t there yet.

The nurse said I had a choice to make:  he could turn up her morphine, which would ease her breathing and make her a lot more comfortable, which is what she had said she wanted. But it might also push her right over the edge and she might die, right then.

To me, it wasn’t even a hard question. It was a no-brainer. She was miserable.

 I told him to crank it up.

He did, and her breathing became much more normal. And then it just stopped. Technically, she died a few minutes before my mom and sister walked in the door. The nurse was there with me. It was beautiful in a way, which maybe only makes sense if you've been there while an old person who was ready to go died a peaceful death.

So, back to our discussion of the morality of life-and-death decisions:  Did that nurse and I murder my grandmother?

I sure don’t think so.

Did we hasten her death?

 Yeah, we sure did. Maybe by a day, maybe by five minutes, we will never know.

Did we do the right thing? I still think so. We did what Grandma wanted. The only part of that morning I have ever felt guilty about—and I am a grand master at feeling guilty about stuff--is that my mom and sister didn’t have time to get there.

When I apologized to my mother for that, she told me I had totally done the right thing.

And if that decision was okay, and we didn’t commit “murder,” then similarly, a decision to take some lethal drugs if you were horribly, terminally ill wouldn’t be “suicide.”

Modern Americans like us like to think in terms of black and white. One minute you are alive; the next you are dead. We assume there is one point of time when life begins, and we question whether that is at “conception” or “birth.” Well, I think maybe there’s a little gray area at both end of life.  An in-between.  A really sacred place.

So then, you might ask, Katie, if your mind is made up already then why are you dragging us through all this stuff nobody wants to think about?

           Well, for a start, I want my friends to know what I believe in this area, now, while I am healthy and unimpaired and in my right mind.

           My biggest worry about ever actually doing such a thing would be being misunderstood in it. Specifically, I would not want any of my friends, especially my young friends or any of my Sunday school students or my children or any of my friends who suffer from chronic illness or depression, to think that I think suicide is okay.

 I don’t think suicide is okay. I don’t think it’s romantic. I don’t think it’s beautiful. I think there’s almost always a better way to handle things.

But if, God forbid, things got awful and I was dying anyway and not going to get better, I would be willing to go there. I am grateful for the work of people like Dr. Goodwin. I am glad the laws in Montana are what they are. And I can’t help it, but I think like a Montanan.

               

               

Happy Cancerversary to Me! I am a one-year survivor.

Happy Cancerversary to me! A year ago today, I was diagnosed with breast cancer. As they say in Cancerland, I am a one-year survivor. It’s sort of a weird thing to “celebrate.” But it feels right and appropriate to step back and say, hey, it was a slog but I am still here and I am doing great! And it feels right to say thank you to all you friends who helped me and my family get to the one-year mark.

Thank you, friends!

                My daughter, Julia, said a few days ago that she felt the anniversary would be a sad day for her. She said she would be thinking of how awful it was a year ago, and everything that changed.

I told her I felt the opposite, and that I planned to be very, very happy. Yes, a year ago it was awful, but things have turned out so much better than they could have. And there has been good as well as bad.

                I was diagnosed on Ash Wednesday, March 9, 2011. I had found a lump in my breast. My OBGYN was hopeful it would turn out to be a cyst. But we scheduled a mammogram, and the ultrasound technician and the radiologist were clearly horrified by what they saw. The film looked as if fireworks had gone off in my breast; there was a scattershot pattern of little tumors. I asked the radiologist if there was any way this could be anything but cancer, and he admitted, no, no way. I had an appointment with a highly recommended surgeon by that afternoon.

When I met with that surgeon a couple days later, she did not seem optimistic. The horse was pretty much out of the barn. It was stage three, and had spread to a bunch of lymph nodes.

                I asked her if she thought it was doable—survival, that is—and she said yes, but she didn’t look like she meant it. She did not smile. There was no hugging, no warm fuzzies. I started crying and she passed me a tissue.

“I get it,” she said. “You have an eight-year-old kid. You need to stay alive.”

I wanted to have surgery ASAP but she said it was too far advanced and we needed to do the chemotherapy first to reduce the chances of the cancer spreading.

I met with the oncologist, who prescribes the chemotherapy, a few days later. In just that little bit of time, the cancer had visibly progressed. You didn’t need to feel the lumps; if I took my clothes off, you could just see them.

Dr. Smith, the oncologist, is an understated, soft-spoken guy. But after he examined me he turned to me with frustration. He spoke sharply.

“Have you EVER had a mammogram?” he asked.

“I’ve had several,” I said, “but I was late for this one.”

I asked him the same thing:  was survival doable?  He said yes, it was, “But we’re going to have to make you jump through some hoops to get there.”

So it was a year of jumping through hoops, but we made it, so far.

I’ve told the whole sad story here already. At first it really was up in the air whether I was going to make it. I remember planting gladiola bulbs with Matthew last spring, and thinking that I should have bought perennials instead, because I might not be here next spring to plant more. And I remember when Easter was coming and the Hershey’s candy-coated eggs (an addiction of mine) arrived at the drug store. I told myself to enjoy each one, because you can’t get them after Easter, and this might be the last Easter I’ve got. I wasn’t being morbid; I was being honest.

Well, it’s a year on, and here we are. I’m in remission. I’m feeling very good. I am even beginning to have some sort of hair. How did it go so well?

I was lucky—or blessed—with what kind of cancer I had. It is a kind that is fairly non-aggressive and quite susceptible to chemotherapy and hormone treatments. Things started looking up as soon as it became obvious the chemo was working and the tumors were shrinking. The chemo made me pretty damn sick, but compared to how sick some people get, I had it relatively easy. The surgery went fine, the rehab went fine, the radiation went as well as it could with people deliberately burning you.

 Now it’s almost Easter again, and I am alive and kicking, and cancer-free. Wow! The chocolate eggs are back, and I have to pace myself on them. They are too good.  And Matthew and I have another bunch of gladiola bulbs to plant.

I feel great.  Funny how exercise and eating reasonably well and not drinking much at all makes you feel good. I’m in better shape than I have been for probably 20 years. I’ve got a trainer at the gym, and she’s kind of mean, in a friendly and sneaky way.  I did five miles on the elliptical this morning, but she tells me I should do it faster, and with more resistance. She made me do about a million arm curls on Wednesday, but I can’t whine about it, because my radiation oncologist says it’s paying off, and my bad arm has greatly improved.

I have a guitar and I’m learning to play it. And we just bought plane tickets for South Africa. We’re going to visit friends and family, and do a service project--I’ll be helping some women at a women's shelter make and market their beadwork.  And we will go on a safari. We are getting busy living!

I have gotten to think a lot this year about what is important and what isn’t. One thing that clearly is important is spending time with people you love. My friends and family have made it clear to me in many ways this year that I am loved. So I, personally, can’t feel sad this anniversary. I feel grateful and much loved by all of you guys. Thank you so much! And I am going to try something new in the blog today—I am going to try to post a video. Check it out if you have a few minutes.

Another good news update

                It’s the first day of meteorological spring, and time for an update. Winter actually never got here; it never snowed more than about a half an inch at our house. I feel like I jinxed the snow myself when I got Matthew a pair of snow boots that weren’t hand-me-downs, in the proper size and a “masculine” color. He did not wear them once. Sorry, fellow snow lovers! I promise to be less proactive next year.
                On the cancer side, I am happy to report I have fingernails again! All the fingernails had totally fallen apart. Back when I was doing chemo—which finished in July, for goodness’ sake—every time I got a treatment, I got a big line like a tree ring across every finger and toenail.  There were six treatments, and six lines across every nail.  Eventually, all the nails just frayed and broke off at all those fault lines, and one of my big toenails went so far as to just fall off completely. The same kind of fast-growing cells that are responsible for growing hair are also in charge of producing fingernails. And the chemotherapy truly whacked them. But I am happy to say the nails are back to normal now. It’s nice to not have scraggly half-nails catching on everything. That only took six months!
                First thing I did when the last scraggly fingernail went away was buy a guitar. And I am taking lessons and learning to play it. I could not die without learning how to play the guitar. I have tried a couple times before, in my youth, but I am already better at it now than I ever was, which I attribute to my teacher, Jeff. A few little cancer side-effects regarding playing the guitar, which I am not even going to try to explain to Jeff until I know him a lot better:  1)The temporary boob implant, or “tissue expander,” is hard as rock and gets in the way of the guitar. Awkward.  2) Sometimes I can’t see the strings on the guitar. More on this in a minute.
                My hair is beginning to grow back, but it still looks pretty mangy. From the front, I am beginning to look less bald. But from the side or the back, you can see I still have a long way to go. However, the oncologist I saw yesterday says it will fill in; she says she has never seen a person whose hair stayed patchy like this, so that gives me hope.
             They basically have me on a schedule now where one of my many doctors is looking at me every few weeks. This week, two more of my doctors checked me out, and all is basically well.
                I finally went to my eye doctor. I had procrastinated on this one. I had to give in and actually do it when my glasses were broken in a freak accident (crushed by a large flying Bible, Revised Standard Version, which is the sort of thing you can’t make up, but I was afraid might be an omen).
              Did you know that breast cancer can metastasize to the eye?  Well, neither did I.  Happily, I can report that mine has not. But the ophthalmologist checked it out in great detail. It turns out the vision problems I am having are the result of cancer drugs and old age, nothing worse. The eyes are very dry, and this may not get better. That sucks, but it doesn’t suck like going blind would suck, for example, especially when you are an artist. No sign of macular degeneration, which has plagued the women in my family, or glaucoma. I do need new glasses. When they get here, I should be able to see the guitar strings again. The diagnosis is presbyopia, or “old person’s eyes.”

And yesterday I went to check in with my radiation oncologist, Dr. Croog. I can say she seemed absolutely delighted with my progress. “This is a good outcome,” she said, and she was visibly happy.

          She complimented me on my flexibility and range of motion of my right arm and so forth. I told her my trainer and I have been working very hard on these things. I now have dumbbells scattered around my living room, among the skateboard parts and lacrosse pads and hockey sticks and such. The dumbbells, unlike the rest of the crap, are mine, and I actually use them, and it’s truly nice to have an authority figure validate my efforts in that area.

I still have a love/hate relationship with my trainer. When she had to go out of town for a family emergency, her substitute trainer actually took me back to the free-weight man cave at our gym, where I had never dared to venture before. I can report that I can now do modified push-ups. Me! Who has never done a push-up before, ever, and who has a messed-up arm! So these trainers must know something. I learned in the free-weight room that I have to remember to breathe and also not laugh or spook when the Sumo dude next to me dramatically drops a large stack of weights, or emits a loud wounded-elk noise. It’s that whole mental-discipline thing.

It generally feels like my whole breast-cancer experience is gradually changing. It is less about the physical problems, which are steadily fading, to the emotional and spiritual ones, which still come and go.

I’ve had several interesting responses to my questioning the appropriateness of military language and battle metaphors. People aren’t putting their comments on my blog, but they are emailing me, which is great. I am still thinking about some of the things you all are telling me, and I will probably have more to say on this sometime soon. I think the consensus is, I am wrong, and that battle imagery is utterly appropriate. More on that another time. But one thing a friend of mine’s husband said that resonates with me: a large part of military life is waiting around and boredom, in between bouts of mortal combat, and cancer is like that, too. This rings very true to me.

            Another topic that has come up this week: how much do cancer patients want to hear about other people’s cancer problems? A friend of mine told me on Sunday that his mom has been recently diagnosed with breast cancer, in a fairly advanced form, it sounds. But he was afraid I didn’t want to hear about it, that I had enough cancer in my life already.

I am sure every person with cancer would answer that one differently. For me, yes, I totally want to hear about it.

For one thing, the way people gathered around me when I got sick was amazing and probably helped save my life. And several of you, and you know who you are, are cancer survivors yourselves. So if I can possibly pay that forward by helping someone else who is doing this, I want to help, at least to pray for that person.

But at a deeper level, I think, once you’ve got cancer, you are sort of “on the team” whether you like it or not. Yes, it always makes you sad or angry or whatever when you learn that a friend, or his mom, has got cancer, too. And if, God forbid, someone dies of it, it messes you up for a while, sure.

Why, up on Rt. 97 near I-70, you pass a little church graveyard where one of the graves right next to the road belongs to someone who died of breast cancer. It was someone who was loved, because there are always flowers there, and from time to time there are big pink-ribbon bouquets there, as well. I used to dread driving past it. I would see her pink-ribbon bouquets and my chest would seize up and I wouldn’t be able to breathe for a minute. I have a little too much empathy, sometimes, or a little too much unhealthy imagination. “That’s me in two years’ time,” I would think. Fortunately, over the last several months, those kinds of thoughts have subsided.

Now, these days, I am just as likely to grab on to the good news and successes of other breast cancer patients, as I am to the bad. For example, last night I saw a show with a friend who recently had a double mastectomy. She had surgical complications and was in the hospital a long time. But she pulled through, and now she is fine. She looks GREAT. She’s got this. And as much as that nameless woman in the graveyard on Rt. 97 scared me, this friend gives me great hope. This is doable, her life says to me, and here is exactly how you do it.

What I told my friend whose mom has breast cancer is, it’s like, whether or not you want to be there, you are now part of a big army. There’s that military language again! Can’t escape it! Whenever one of your fellow soldiers goes down, you take it personally, and it messes you up. But whenever one does well, it’s really, deeply, satisfying. And you don’t really get a choice in whether or not you are participating, anyway; it’s your cross to bear, from now on. So you go for it.

One-year smashogram, and I become a guinea pig

                Tomorrow is Ash Wednesday. It was a year ago on Ash Wednesday that I was diagnosed with breast cancer. There are different schools of thought on when you celebrate your “cancerversary.” Some people go with the day they were diagnosed, and others go with the day they went into remission. Personally, I don’t have a feel for when that was, the day we actually got rid of the last bad cells. It could have been last August, when I had surgery, or some time in October or November, when we did the radiation to clean up the stragglers. So I’ve decided I am instead going to celebrate my survivorship from the day I was first told I had cancer, which was March 9, 2011.

                Today, I celebrated nearing the one-year-survivor mark by having my one-year smashogram. It was clean! Yay! And it was only half the pain it used to be, since there is only one boob left to smash.

                Today’s mammogram and sonogram were hugely different than last year’s. A year ago, at the sonogram, the minute I knew I had cancer came while I was watching the radiology technician’s face. I saw the look on her face and started shaking. She was not allowed to tell me anything, but I could see she was trying not to cry. She put her hand on my arm and said, “I wish I could tell you what you want to hear.” The mammogram film was horrific; to this day, not even my husband has seen it.

                Well, no such drama today! I was in and out of there with no hoopla. The staff radiologist said they saw nothing dodgy, and they would see me in a year.

                Today was also another milestone in my cancer journey. I officially began participating in a large research project aimed at discovering whether the diabetes drug Metformin can help prevent a recurrence of breast cancer. I am probably going to explain this wrong in some way, but the gist is:  there is very good reason to suspect that women who take Metformin are less likely to have a recurrence of breast cancer than women who don’t. They think that the drug messes with your hormones in a way that breast cancer doesn’t like. Now they have to demonstrate this effect in a scientifically acceptable way. So, thousands of women like me, who have had breast cancer, are being recruited to take this diabetes drug for five years. They give half of us the real thing and half of us a placebo. Then they watch us like hawks to see whose breast cancer recurs.

                They had to do all sorts of blood tests on me to make sure I was eligible for the study. They had to weigh and measure me and ask me a lot of questions. I also had to sign and initial many pages of legal baloney. We did all this last week. I had to have another stupid pregnancy test! That’s just as ridiculous as it was the last time they made me have one, the day of my mastectomy. As I keep telling them, I had my tubes tied nine years ago and I’m menopausal. Definitely, unconditionally, not pregnant, and I’d be happy to sign a legal document to that effect. But the medical system in America is truly driven by lawyers, and they are covering their legal asses. It makes me sad to think that the breast-cancer-research money raised by millions of people running their 5k races and doing their three-day walks is going to pay for pregnancy tests for people like me who aren’t pregnant, but there it is.

                The study seems to be trying to cover its legal ass in other ways, too. They wanted permission to test me for the BRCA genes, but refused outright to let me know the results of the test. I said no way. I told them if they wanted to do genetic testing on my genes, the least they could do is let me know the results, because I have a daughter to whom the results could be very important. They still said no. I am sure they don’t want to be held liable for counseling and such for people who turn out to have the bad genes. In the end, I refused permission for the genetic testing.

                Today, I got my Costco-sized giant bottle of the “study drug” pills. I hope I got the real Metformin and not the placebo. My oncologist said the biggest side effect I could expect is not being hungry and maybe losing a few pounds. Well, sign me up! However, the nurses involved with the study say the biggest side effect is likely to be “G.I. issues.” I suspect I did get the real thing, and not the placebo, because the first pill did sort of upset my stomach, and I doubt a sugar pill would do that.

                In other news, I can report that the cancer magazines at the breast imaging center at Sibley Hospital are as old and lame as the ones everywhere else. This one had ads for organic hair tonics for people like me, whose hair has fallen out from chemo and isn’t coming back the way it should. Have I mentioned that I am STILL looking pretty mangy? There are big old bald patches on the back of my head. I was supposed to have hair by now. In fact, my oncologist alarmed me last week by commenting on the thinness of my hair, which used to be pretty darn thick, and asking me if there were any genes for baldness in my family?

                “What does THAT mean?” I asked him. “You said my hair would be coming back! Should I start freaking out now?”

                He chuckles nervously and says we should give it more time, and of course I shouldn’t be freaking out, and some people’s hair takes longer to grow back than others’, blah blah blah. But clearly he is really thinking, yep, you might want to start freaking out now. Even so, I can’t see me as a consumer of organic hair tonic.

                There were other ads in that cancer magazine for lots of other products I am never going to buy. There were several ads touting cruises for breast cancer “thrivers.” Not my cup of tea for a whole bunch of reasons. I am not a boat person anyway, but even if I were, locking myself on a boat and hearing nothing but cancerspeak and seeing nothing but pink for a whole week is not something I would ever do for fun.

                There was also an ad for a machine you can buy for your own kitchen to blend wheatgrass for shots and smoothies, which we are told are the sort of thing “thrivers” consume. Well, I personally did a shot of wheatgrass once, in a crunchy Seattle café. I will not be doing it again. Doing a shot of wheatgrass is like kissing a horse, only not as nice. Drinking a wheatgrass smoothie would be like chewing someone else’s cud. No, thank you. Give me a nice Scotch, if you really want me to thrive.

                And you know, even if I were going to do wheatgrass shots, I could probably whizz the wheatgrass in the food processor I already have, eh? I don’t need another separate device, I’m pretty sure, even if the damn thing is pink.

                Speaking of useless pink items, we came across another one, the worst one we’ve found so far. It is a pink handgun called the “Hope” edition, which is being marketed by a gun company called Discount Gun Sales. Supposedly some of the proceeds are going to the Seattle branch of the Susan G. Komen Foundation. Well, good for them! I am sure their P.R. folks have nothing to do this week other than deflect press inquiries on pink guns. I must remember to check if the N.R.A. offers any classes to empower gun-toting breast-cancer thrivers like myself. And somebody out there must be marketing a pink deer rifle…That is something a girl could actually use!

               

               

Probably way too much information about plastic surgery

                I have a friend who, at Urban BBQ in Sandy Spring, introduced me to a delicious drink called a Buttered Nipple. It is a shot of Bailey’s Irish Cream and a shot of butterscotch liqueur. Some people put vodka or Kahlua in there, too. It is very, very tasty. But it’s hard to keep a straight face while you’re asking for one. So my friend, who doesn’t like saying the word “nipple” to total strangers, asks for a “buttered body part” instead, and the drink tastes just as good. That is neither here nor  there; what I am trying to say is, if that friend is reading this, she had better stop now, because I’ma say the word “nipple” lots and lots here, and the word “boob” lots more. Just saying.

                I’m about to embark on some serious plastic surgery here in Montgomery County, Maryland, which is the 12^th-most-wealthy county in America, according to the US Census Bureau. This means that the waiting room at the plastic surgery center is quite a cultural experience, for me. There is an abundance of tasteful, white furniture and tasteful, spare flower arrangements mostly featuring orchids.  The office staff (are they nurses?) are trendily dressed. Lots of black. No green medical scrubs here.

                The clientele breaks down into two distinct groups:  those who are here to get their parts tucked or lifted or filled with spackle, and those who are here to get their parts replaced. I’m gonna generalize wildly now. Most of the patients here belong in the first category, and these are mostly slim, blond, well-heeled and very attractive women who are not wearing cowboy boots. I believe some of them have purses that cost as much as my car is worth. The people in the second category are not nearly so MoCo. They tend to be bald and overweight and at least one of them is wearing cowboy boots.

                There is almost nothing to read in this waiting room, which makes me cranky. Everyone is using electronic devices, instead. There is one Cosmopolitan magazine. At least there are no cancer magazines here.

                I am happy to report that the sex tips in the Cosmo are no more helpful than the ones in the cancer magazines at Sibley Hospital, but they are funnier. Compare and contrast:

                --Cancer magazine sex tips:

                                1) Try not to do it while actually puking, which is unattractive.

                                2) Try to do it before your chemo, not after. See #1.

                                3) If your body has become hideous for any reason, try to find a way to do it with your clothes partially on, or at least keep the lights off, for God’s sake.

                --Cosmo sex tips:

                                1) Do it on the clothes dryer. (Cosmo did not address who was going to clear out the skanky soccer and bike stuff that’s piled up on there, which is a real turn-on, or how you were going to disappear the children while you got off on the clothes dryer.)

                                2) Do it with your clothes on like the characters in True Blood. See #3 above. If either your body has become hideous or you’ve become a vampire, apparently, clothing can help.

                                3) Do it dressed up as that girl from Sailor Moon.

By this point I was snickering and scaring the contingent of blond, attractive persons. That was satisfying in its own way, but, really, you have to admit, that is a pretty lame sex tip. I don’t think John would ever dress up as Sailor Moon, anyway. Happily, they called me to the exam room at this point.

                There was even less reading material in there, no Cosmo, no cancer magazines, not even a Golf Digest. There was nothing at all except brochures for the various kinds of plastic surgery you could get done around here. Well, those were educational.

                Have I mentioned I am from Montana, and from the wrong side of the tracks, at that? MoCo-style plastic surgery was never on my radar screen before. Hell, I am nearly 50 years old and I have never had a manicure or a pedicure. That stuff is for painted city women or persons from New Jersey. Of course, I have read about manicures and face lifts and liposuction. But arm lifts? I thought that was something you did at the gym. I am reading this brochure about arm lifts and thinking, damn, I didn’t have to do all those miserable bench presses and biceps curls and such. These painted city women might be onto something. I am wondering if I can talk my doctor into doing a couple of those arm lifts while she’s already got me knocked out in the operating room for my boob remodeling.

                No such luck. We are here to talk business. When I first met with the plastic surgeon, last spring, I was far too sick from the chemotherapy to even think about a boob job. Well, I’m not sick anymore and I am ready to do whatever it takes to make the boobs look presentable again. We have four major plastic-surgery objectives. Sadly, none of them involve arm lifts or liposuction:

                1) Swap out the “tissue expander” for a good old-fashioned breast implant on the robo-boob. It will feel more like a real boob and less like a curling stone after that happens.

                2) Make the poor old regular boob on the other side look like it belongs to the same human as the robo-boob. When we’re done, the robo-boob should be roughly the same size and shape and time zone as the other one. By the way, there is no good word for that “other” one.  “Real boob? “Remaining” boob?  “Surviving” boob? “Conventional” boob? (But the opposite of “conventional” is either “organic” or “nuclear,” depending on your age and mind frame. What is the opposite of “robotic?”)

                3) Detail the robo-boob.

                Specifically, we mean sticking a nipple on there. Well, that will require another, separate surgery. 

                “Why?” I ask. “Why can’t we do that all at once, while I’m already drugged up like a darted lion on some Animal Planet show?”

                Well, we theoretically could, but it turns out that whether you have a boob lift or a boob reduction on the conventional boob, in your effort to make it match the size of the nuclear boob, either way, it’s a little unpredictable where the nipple ends up. You want to let that conventional nipple settle down some, post-surgery, before you go monkeying around trying to install a nipple on the other side. Otherwise, those nipples could end up pointing two completely different directions, like they’d been put on there by Picasso in his Cubist period, or maybe by Salvador Dali. And we don’t want that!

                4) Get a tattoo! I get to have my own tattoo artist! Now my daughter is going to be jealous AND call me a hypocrite! There is a woman, in Rockville, bless her heart, who started out as a regular tattoo artist but has since specialized and now spends her days using the magic of tattoo ink to make the areola, or the front bull’s eye, of your synthetic boob, the same general color as the front of your conventional boob. Maybe I can I talk her into drawing something special, like a butterfly or a spider or a Harley, on there was well. She probably charges extra for that.

                

            One thing I am bummed about is that it is all going to take longer than I had thought. I had thought I would have all this boob remodeling done during the summer. But apparently we might not even start it until September. As it turns out, all the stupid cancer surgery and radiation causes your robo-boob to shrink, and mine is still shrinking. We don’t want to try to match the conventional boob to the nuclear one until it’s done shrinking, or we could end up with two different sized breasts, and that would look wonky.

                The other thing that is a mild bummer is, we don’t know if we are talking a boob lift or a boob reduction on the conventional side. How do we decide?  Not only do we need to see how much the nuclear boob shrinks; we also have to see how much weight I’ve lost by then. I am supposed to try to get myself to vaguely the weight I plan to stay at, BEFORE we do the plastic surgery. The reason is is, an implant doesn’t gain or lose weight, but a standard non-nuclear human boob does. So, if I plan on losing a bunch of weight—and my doctors have informed me I should plan on that, because the fatter I am the more likely the cancer is to return—I should lose the weight now. Otherwise, again, I might find myself with two different sized boobs, and that would be unacceptable.

                Damn.

                So not only do I need to lose a bunch of weight to get down to the weight that my doctors say will maximize my chance of not dying; I also have to do it before I get my boob upgrade, or the girls could turn out wonky.  Today I looked in the mirror and threw my shoulders back and inaugurated my newly-urgent weight-loss program by eating a big hunk of dark Godiva chocolate. It is heart-healthy! I am skipping the Buttered Nipple, for now. But when this whole drawn-out plastic surgery adventure is done, by maybe next Christmas, I swear, the Buttered Nipples are on me.

               

Bitterroots and checkups

This is a bitterroot. It was one of the staple foods of a lot of Native Americans, and it was eaten by Lewis & Clark. It is the state flower of Montana, and my nominee for new symbol for Easter, death and rebirth, and such. 

I bought this plant, and one other, at a farmer's market last July in my hometown, Missoula, Montana, where I had gone to visit my mom. I had been looking for bitterroot plants for years, and had never found any until that day. Years ago, I had ordered some online from a grower in Oregon, but they all died. Anyway, the guy at the farmers' market in Missoula had two plants left, and I bought them both. It was only the second time I'd ever seen live bitterroots in person. The first time was a million years ago, in high school, when my church youth group went on a hayride in the North Hills and we caught the bitterroot bloom. They were everywhere. The ground was pink. I suspect the spot where we saw them that day has now been plowed up and turned into a housing development. But I know they still find bitterroots in the wild and some people are propagating them, because you can find vendors at powwows who sell the roots for throat medicine for the singers. 

Well, I carefully packed my two little plants in a big plastic container, cuddled them in bubble wrap, and nestled them carefully in the overhead bin on my flight back from Montana to Maryland. They made it through the flight, and bloomed happily on my kitchen counter for a couple weeks. Then they absolutely withered. They just crumbled and disappeared. I don't know if it was too much water, or too much air conditioning, or too much humidity, or what. They rotted away. August in Washington, DC, is nothing like August in Montana. Something was not to their liking, that's for sure. I felt awful for murdering the only two living bitterroots I had seen in thirty-five years. I could not bear to throw them out, so I just put the pots in the garage. At least I had photographed them while they were blooming.

Well. I went out to the garage the other day to look for something, and hunting among the junk on the shelves out there, I came across the pots of the two poor dead bitterroots. But they weren't dead!   They completely had come back. They have lots of new little bitterroot leaves. I hadn't killed them. They had just died back temporarily because that's what bitterroots do.  That's how they get through winter.

I now have two very happy little bitterroot plants on my front step. I do believe they are fixing to bloom again. I am renewed.

Why did I go through that whole long story? Because they remind me of me.

I saw a photo of myself a couple days ago that was taken that same week in July. I looked God-awful. My whole self was red and swollen, no hair, no eyelashes, puffy face, the whole deal. I looked like death warmed over. I must have scared my mom:

That was pretty close to rock bottom for me. I wish I could express how much better I am feeling now. Here's what I look like these days:

Today, Ground Hog Day, I had my first big post-cancer checkup with my surgeon, Dr. Colette Magnant. She is the person in charge of the team of doctors who are saving my life. She is also the director of than the Breast Cancer Program at Sibley Memorial Hospital in Washington, DC.

I aced my exam. Dr. Magnant proclaimed my non-robo-boob “Perfect!” (In the medical sense, of course; in the aesthetic sense, this breast is a whole different size, shape, texture, and latitude than the robo-boob. But we will be fixing those issues next summer, God willing, via the magic of plastic surgery). For now, we are just grateful to have one functional, healthy breast and no sign of cancer anywhere. John was there, too, and we both thought that Dr. Magnant seemed genuinely happy with how it’s going.

And she does think my hair will come back.  Right now, it is disappointingly sparse and sketchy. It looks okay in front, but there are big bald patches in back, like a newborn baby who was born with a lot of hair but wore it off the back of the head by too much sleeping. Yes, I’m still pretty funny-looking. And my eyebrows, which were so dark and bushy that I was teased about it for oh, thirty-five years, also have bald patches that I have to color in with an eyebrow pencil.

 I have been afraid that this patchy hair I’ve got now is as much as I’m going to get, and that my hair would never look normal again. After all, it’s almost seven months since I finished chemotherapy. I had been told not to expect to feel normal until maybe January. But Dr. Magnant says it can take a year to get over the effects of chemo, which could take us to the middle of next July or August, before things really get back to normal. Ouch. I was hoping to look better much sooner than July! This baldness thing was funny for a while. It’s not so funny anymore.

So it goes. She also says my eyes, which have been very dry and irritated, will also continue to gradually get better. I should have asked her if the brain cells would continue to gradually get better, too, but I forgot.

 Overall, Dr. Magnant seemed very pleased by the progress I’ve made. She asked me how I’m feeling, and I told her I am feeling so good I’m scaring people. Which is true. I am now to the point where I’m doing five miles on the treadmill or the elliptical machine, several times a week, and nasty workouts with my relentless trainer, too. I am pestering people to go dancing with me. I said aloud, in front of witnesses, that I might run a 10k, which is something I’ve never done, even when I was young and healthy. I’ve begun dragging John to concerts and such. We went to see Steve Earle in Annapolis last week. He was awesome. We had a couple drinks. We stayed out until nearly midnight. On a school night! If I keep improving from now until July, I am going to be feeling better than a girl probably should.

It's nice to be a happy cancer statistic for a change. It's been a roller-coaster week for cancer among my family and friends. My neighbor's mom died of cancer on Monday. On Tuesday, a friend learned she has a probable recurrence of ovarian cancer. On Wednesday, my brother, a colon cancer survivor, spent the whole day having tests which turned out, happily, to show that he is not having a recurrence right now. Great news! And then there was my good report today. While I am glad for my brother and me, I know some of you out there are coping with much worse news. We are thinking of you, hoping that like us, even if you die back, you live to bloom again.

Dr. Magnant and me

 

"Fighting" cancer "bravely"

                Whenever anyone famous dies of cancer, it seems to me, there is always a headline or a newsreader who says the person “lost their battle with cancer” or died “after a brave battle with cancer.” This week, I saw at least one such headline on a news website about Joe Paterno, who died of lung cancer at the age of 85. Some days this type of battle metaphor for having cancer truly rubs me the wrong way. I am certainly not the first person to have this type of annoyance reaction. My daughter tells me that this very topic came up in a novel she just finished reading. But this week, the cancer-related battle language was annoying me so badly that I had to sit down and think about why it bugged me so much.

                Granted, there are times when the “warfare” language seems appropriate. Having cancer, at least the kind I’ve got, and the treatments that go with it, is a physical endurance challenge of a depth I’ve never experienced before. Maybe it is like warfare. I’ve never been in the military. I’ve never trained for a marathon or a prizefight. The only thing I can liken it to, from my own experience, is pregnancy.  I’ve been nine months pregnant. I’ve given birth. I would put the physical exertion of having cancer in that range of magnitude.

Maybe fighting in a war is like that. Or maybe fighting in a war is much worse. I would like to talk with a war veteran about this. I can see parallels. For sure, there is survivor guilt when you have had cancer and then you are told you are in remission, and you know there are friends of yours who aren’t. I am sure there are other psychological parallels, including post-traumatic stress disorder. (Also, I would like to ask if using too much of the “warfare” language for cancer annoys military veterans, for other reasons? Perhaps it cheapens the language for them?)

I’ve certainly used the warfare language right here in this blog. I’ve talked about tracking down cancer cells the way we’d like to track down Al Qaeda terrorists. I’ve told myself how “tough” I am. Thinking of myself as a tough little Montanan helped me get through chemo. I loved it when a friend nicknamed me “Captain Badass.” At my remission party, my daughter wore a pink shirt that read, “MY MOM KICKED CANCER’S ASS.”  Battle language, all of this.

My daughter enjoyed that shirt, and it was a proper moment for giddiness and celebration. But in the back of my mind, I doubted whether cancer felt as if its ass had been kicked.

Recently, at a cocktail party, a friend introduced me to someone as his “hero.” This made me very uncomfortable. Hero?  I hadn’t pulled anyone out of a burning house, or run through a firefight to save a platoon mate. I hadn’t even chosen the “fight.” It chose me. All I had done was not die yet. Okay, I have also tried to be honest and not whine a lot. I don’t think that staying alive and not whining a lot measure up to the criteria of “heroism.” I am not sure what he means by “hero.”

Is everyone who has cancer automatically “brave” and a “fighter?” Or do we just get credit for bravery because we happen to be in a situation that sucks? Or are we truly making some sort of distinction, here, when we say someone is fighting cancer “bravely,” and what we really mean is just that they aren’t whining a lot?

Several months ago, after I was first diagnosed with cancer, I crossed paths with a friend, who also has cancer. He had not seen me since my diagnosis. He gave me a big bear hug and said, “But we’re warriors, aren’t we?  We’re fighters, aren’t we?” and I hesitated. I was considering whether he and I are any more “fighters” than the next person with cancer is. He looked at me anxiously, wondering where my resolve had gone to, and I stammered that, just the day before, I had been called a “warrior princess.” He seemed comforted by that.

Here is my first big quibble with the military language:  If my friend and I are “fighters,” does that mean some people aren’t?  I have known a bunch of people with all different types of rotten cancer. Each of them was a fighter in their own way. Each of them tried, to the best of his or her ability, to stay alive.  I can’t think of a single person who just threw in the towel. But a bunch of them died anyway.

One reason I hate the warfare metaphor is that it encourages the idea that if only a person “fights” harder, more “bravely,” they won’t die. This is a lie. I know folks who were plenty brave who died anyway. I know people who absolutely used themselves up trying not to die, and they died anyway. Were they failures? Lousy soldiers?

A niece of a friend of mine died this summer of breast cancer. She was in her thirties. She left two preschool-aged children. She didn’t live near here, but I read her blog until I couldn’t bear to read it any more. Nobody I know wanted to be alive more than she did, because of her kids. Nobody I’ve ever heard of had more faith; she expected a miracle almost until the week she died. Nobody was braver. She went through treatments I don’t think I would have agreed to, trying to earn more time. All that, and she died anyway. Did she somehow fail? Come up short in the effort department, or in not wanting it enough? Surely not.

There’s a fallacy you often see in badly written TV shows on the Disney channel and such places. In these shows, children hear that they can be anything they want to be, if they want it badly enough and believe it hard enough.

Unfortunately, that’s not true.

It’s not true with cancer, either. And criticizing some cancer patients for not “fighting hard enough” strikes me as nonsense, except in unusual circumstances. It is the worst sort of blaming the victim. It really gets on my nerves when I see it in the news.

Another thing: having a “battle” implies there is someone on the other side you are battling with. But we aren’t talking about an evil force here, a demon or a malignant being. We are just talking about some of my own stupid cells dividing too fast. It’s like saying a diabetic person is having an argument with their pancreas. It’s silly, when you think about it.

In his novel, Little Big Man, Thomas Berger writes of a Cheyenne village that had been infected with cholera. “Those that wasn’t yet dying,” the narrator recalled, “got into battle dress, mounted their war ponies and challenged the invisible disease to come out and fight like a man.”

This image moves me. It seems so tragically misguided. But we do it all the time when we personify, or monsterify, cancer. I would have loved to challenge cancer to come out and fight like a man. After all, my kids wanted to see me kick its ass. That would have been pretty satisfying. But we’re only really talking about one of my own cellular-level bodily processes here, so the metaphor doesn’t really work, does it?

And then there’s a related problem: The idea of dying as “losing” a battle implies that somebody, somewhere, wins, or at least that winning is possible. But, in this life, every single one of us dies in the end. Nobody wins, ultimately. Nobody is supposed to.  Nobody has ever been so good at living that they didn’t die. Dying is part of the package. Dying is not failure at living. It’s just who we are. Battle language, on the other hand, implies there’s a winner. You win a war, or you lose it, or you draw, but it never just “is.”

And theoretically, on the field of military battle, most soldiers will make it through alive. There is some skill involved. Preparedness and hard work do count. That’s why soldiers train so hard: so they won’t die. And some of the soldiers who die do so because they or somebody else didn’t do their job well, because somebody was stupid, or careless, or cowardly.

It seems to me that dying of cancer in America these days usually isn’t like that. I am sure there are exceptions, when a doctor screws up or a patient ignores doctors’ orders. The skill of doctors and nurses, of course, makes a huge difference. And patients can manage their risks to the best of their ability, eat the right things and get the right amounts of exercise and sleep and take their meds properly. But a lot of those patients will die anyway. Usually, there is not a big medical screw-up or a failure of the patient to do what they’re told. Sometimes, you know, it is just not possible to live through cancer. Human bodies are inherently fragile and temporary. Death isn’t a moral failure. Maybe it’s a design flaw.

The problems of language surrounding death and cancer are part of our culture’s whole discomfort with the idea of death. We don’t accept it. We don’t plan for it well, some of us, anyway. We ignore it. We don’t talk about it well. Our rituals for dealing with it are not always the most satisfying. And we don’t like the randomness of illness and death. Wouldn’t it be nice if disciplined, “brave” people could fight off illness and death? We could then protect ourselves by just having a good attitude. If people died we would know why. It would be less random and less scary if we could demonstrate that it was your own fault if you died of cancer.

I suspect other cultures may handle the subject of death better than we do.

An illustration of what I mean can again be found in the novel Little Big Man, by Thomas Berger. The novel is the story of a white boy who was adopted by a Cheyenne man in the mid-1800s. At one point, there is going to be a battle between the Cheyenne and the whites, and the adoptive father takes his son aside and gives him a chance to excuse himself honorably from the fight, if he feels it is the wrong thing for him to be involved. The boy responds, “I think it is a good day to die.”

And explaining this statement, the narrator says,

“You tell that to an Indian, and he don’t immediately begin soothing you or telling you you’re wrong, that everything’s going to be swell, etc., for it ain’t the hollow speech it would be among whites. Nor is it suicidal, like somebody who takes the attitude that life has gone stale for him, so he’s going to throw it over. What it means is you will fight until you’re all used up. Far from being sour, life is so sweet you will live it to the hilt and be consumed by it.”

In that culture, death isn’t considered a personal failure, or unspeakably bad, or even the worst possible thing that could happen.

                If we in modern America could accept death as an inevitable part of life, not a moral failure or the worst thing in the world, it would have implications for day-to-day life. For a person like me, with cancer, it would have implications for questions such as when certain treatments might be not worth the damage to one’s quality of life, or when assisted suicide might be morally acceptable. Right now, it’s hard to even have those conversations; even the words we use, such as “assisted suicide,” are already loaded with so much baggage that we’d almost have to start from scratch, choosing a whole new set of terms that don’t come pre-filled with negative connotations. Is it still “suicide,” for example, if you are already dying?

                It would also have implications for how we talk to each other about death. I have friends who have been amazed that I would say out loud that I had thought I might be dying, and also that I would say this in front of my children. Mind you, I had already been so visibly sick that my children had begun wondering, for themselves, if I was dying. So to me, talking about it didn’t make the situation worse, and it potentially made it a lot better. But to some of my friends, talking about the possibility of dying was the worst thing I could do, short of dying itself. I was (very nicely) chastised by one person for saying I might not survive this illness. She seemed to think I was either being “negative” or melodramatic. I was merely trying to be honest. In any case, if it is this hard for us to even talk to each other about the possibility of approaching death—how do we figure out how to help each other through it, or ask for that help, if we can’t even say the words?

                So, friends: if I die of cancer, and if the death notice in the paper says she “Lost her battle with cancer,” I want you all to complain to the editor. And I don’t want anyone at my funeral saying, “She fought bravely.” Because really, who doesn’t?