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.