No, No, No Hillary…

It’s taken me a long time to reach this point, and even longer before I was brave enough to say it out loud, but I will not be casting my vote for Hillary Clinton this election, even if she does become the party’s candidate. She is not my candidate. I find her views on war frightening and her allegiance to Israel’s right to bomb indiscriminately nauseating. Her financial plan offers more of the same old same old that got us here in the first place. I find her feminism unconvincing in light of the additional pain and suffering she has caused millions through her misguided support of “welfare reform,” and her willingness to “destroy” (again, her word) the women who called Bill Clinton on his sexual misdeeds. Finally I find her wooing of and pandering to the financial industry while offering full-throated support to regulation cynical and dishonest, to say the least. I find the financial industry’s allegiance to her even more worrying–they don’t support candidates unless they see a clear benefit for themselves in the relationship.

Most of all, I find her willingness to sacrifice ethics, morals, and values to political expediency absolutely terrifying. I’ve seen her run in two presidential elections now. Both times, she used tactics I found beneath contempt. Watching her misrepresent, distort, and lie about her record and Senator Sanders’ record has been a bad trip down memory lane.
It’s also been a timely reminder. I had forgotten much of what troubled me about her previous campaign. I had let the distasteful mess of the Lewinsky years slip from my mind. But she has encouraged us to recall those years, I presume because she thinks they’ll offer her credibility. Well, I have recalled those years now, and that gives me a timeline–I’ve seen her in action now for twenty years. When I look at her record over the long haul I am struck first by how very, very committed she has been to the pursuit of political power. She has been willing to sacrifice things that I think no one should sacrifice in pursuit of maintaining that power. Second I am struck by a pattern I see–she waffles and dodges and then, when an idea’s popularity becomes inevitable, she comes out in full-throated support–and claims she’s been there all along.
I know others see her differently–others are less bothered by what I see as her lapses–possibly legal lapses, although she most typically seems to achieve her ends by creatively stretching the law into shapes it was never intended to take–but even more by her ethical, moral, and judgment lapses. Why make up a story about running under fire when you know the landing was televised? Why take obscenely large payment for speeches to the financial sector when you must know you’re considering a presidential run (does anybody seriously think she wasn’t planning on running for this election from the day she conceded in 2008)? Why vote for a war that you have every reason to know is unjustified (others certainly knew–why did Hillary, that great international expert, not know)? Why create at least the strong appearance of impropriety by rewarding Clinton Foundation donors with State Department support and favors?
Even if we put the best possible construction on each of these issues, we have a choice between a Hillary who is criminally corrupt or a Hillary who is weak, venal, and terribly, terribly short-sighted, and certainly as poorly advised as ever Ethred the Unready was (look him up–it’s a funny story; I promise you).
I have a lot of reasons to not vote for Hillary. But why Bernie? I’m voting for him for three reasons:
1. First, because when I look at his record over the last thirty years, I see something very different from Hillary’s record: I see a principled man who has consistently fought for a set of core issues–the same core issues that have formed the basis of his campaign. Is he perfect? No. I differ with him on gun control, to mention just one thing. But here’s the thing: I know where he stands. He stands precisely where he has always stood–for social and economic justice for those of us who cannot afford to pay $225,000 for a house, let alone a speech. He fought for his ideals when they were unpopular. But now those ideals’ time has come–and Hillary, in true Hillary fashion, has suddenly discovered that she supported them all along. ($15 minimum wage, anyone?)
2. I am voting for Bernie Sanders  I’ve seen the way the two candidates have conducted themselves under the pressure of the campaign–in interviews, on the debate stage, and in rallies. And I find Sanders’ conduct infinitely more palatable.
3. Most important, I am voting for Bernie Sanders because Hillary Clinton’s message throughout the campaign has been,”Dreams are for suckers. Accept the status quo. You’ll never change anything. You might as well not try.”
I don’t accept that. I don’t accept that because for me, it’s just not true. My life has broken more often than anybody’s life should. Each time it broke I faced a decision: I could just try to get back to “normal”–to re-establish the status quo–or I could take a deep breath, look around, and use my broken life as an opportunity to ask myself, “What is it I really want to be? What do I really want to do with my future?” And then, somehow–maybe because things were so broken there really was nowhere to go but up–I took the leap into the unknown. I dreamed big. I took hold of those dreams and let them pull me to a better place.
Was that new place perfect? No. But that new place was built on dreams, not fear. And when the new place breaks–and it does–I know that I can dream big again.
I am not voting for Hillary because her pitch asks me to pipe down, get in line, accept the corruption in our political system, stop trying to be my best self. She’s asking me to kill a little bit of my soul. I am voting for Bernie for the same reason I voted for Barack Obama–because he’s challenging me to grow, to dream, to believe that though we are no great shakes as a nation right now, we can be better, if we work at it. Dreams don’t come easy. We’ve seen that.
Quite likely Bernie Sanders will lose the primary. I could argue about the shenanigans we’ve seen, but others could very rightly say that our politics have always had shenanigans. They would be right. But here’s the thing: Just because something’s always been there doesn’t make it right. And now that I have the opportunity to actually vote for a candidate with integrity, why on earth would I throw that opportunity away on “business as usual?”

About That Danged Button

So I came out of surgery probably like everybody else, gasping and flailing like I was drowning (a fact that mortifies me now–I would prefer to think I had awakened slowly and gracefully, my long, silken lashes sweeping up to reveal my violet blue–no, golden brown–no emerald green–oh, forget it. Instead I awoke flailing, with an IV sticking in my arm, a PICC line in my neck (“You have crappy veins–they’re all scarred up,” the nurse informed me), a tube down my throat, and a catheter up the old hoo ha.

My flailing was swiftly curtailed when a blast of fire ripped across my belly. I stopped moving and lay very, very still. And then I was out again. Repeat about a bazillion times as I waited in the recovery room for an ICU room to open up. Flash forward what the nurse said was seven hours, but you couldn’t have proved it by me.

“You ready to go?” the nurse asked, far more cheerfully than I felt was warranted. “They’ve got your room ready for you.” She hooked my IV and catheter on the bed (liquid in one end, liquid out the other–I hoped she didn’t get them mixed up), and so began my slow and stately procession down the hall, into an elevator, and down another hall. I assume I must have gotten into the ICU bed at some point, since that’s where I was the next time I woke up, but I don’t recall that part of things.

“You awake?” the ICU nurse asked.

“I think I’m going to throw up,” I said.

“We’ll get you a patch,” she said. “See this button? It’s right here. When you start hurting, just push the button. Give it a try.”

I pushed the button. Grogginess and nausea swept over me in equal amounts. “I really think I’m going to throw up now,” I said.

“We’ll get you something,” said the nurse. “Now just remember to push the button when you start to feel pain.”

But I was asleep again. I awoke to pain. I fumbled around and pushed the button. The nausea grew worse. I hadn’t thought that was possible. I went back to the “lying very, very still” technique I had developed in the recovery room. After a while I shifted slowly and carefully–and felt that damned button, under my shoulder blade. “Click” it went, and nausea flooded me again.

And that was my night. Every time I moved, the button was waiting, lurking in the shadows like a heel-biting dog, darting under my shoulder, behind my arm, under my hip. “Click. Click. Click.” And the flood of nausea. By morning I had gathered enough of my wits to take that blasted button and drop it over the side of the bed. When the nurse came in she said, “Oh, you’ve lost your button,” and carefully put it back in the bed, right beside me. “There, can you reach it?” she asked kindly. And she moved the button a little closer to my hand.

“Can we not do the button?” I asked, swallowing bile.

She looked worried. “We’ll have to go to pills to control the pain,” she said doubtfully.

“Fine,” I said, relieved.

She got me a pill. I took it. The nausea was there, but much less intense.

The next time I started hurting I said, “Can I take anything else? Something that won’t nauseate me?”

“We can try Tylenol,” my nurse said, but I could tell she didn’t suggest it.

But we tried it, anyway. And it worked.

Here’s the thing about pain: It’s important to control it not only for patient comfort, but so the patient can heal. Hurting people don’t do as well as people who aren’t hurting. That’s the thinking behind those buttons: They allow patients to regulate their medication, to keep them as comfortable as possible. And for most people, they work just fine. In my particular case, though, less was more when it came to pain medication. I took the heavy stuff about one dose in three; the other doses I took Tylenol. And I stayed comfortable. I had what I needed. My caregivers worked with me to figure out how to keep me comfortable without feeling like I was going to toss my cookies.

The downside for them was that I was alert enough to make their lives a living hell asking for drinks, and then help to the bathroom, in return for which they made me walk laps in the hallway, which in turn got me out of the hospital and their hair faster, but I was eager to go, too. Win/win.

Going to the hospital and undergoing surgery is an enormous act of trust. We who do that literally close our eyes and fall backwards, trusting that the surgeons, anesthesiologists, nurses, and doctors will hold us and keep us safe until we can keep ourselves safe again. They perform the most intimate of tasks, and if they are anything like my nurses they do it matter-of-factly, with no drama. I even learned not to apologize for needing their help.

Recovering from surgery reminds us that there are times when all of us need to rely on others. I was so very fortunate that when I had to close my eyes and trust, I was surrounded by people who kept me safe until I opened my eyes again. And by people who were willing to take away the button that made their lives easier, and substitute pills, which made me more comfortable.

In the end, my experience at Seattle Cancer Care Alliance and the University of Washington Medical Center felt more like I was a partner in my healthcare, rather than a patient, being “treated.” It became a conversation among all of us–my caregivers, my head–and my body. We all listened to my body. And it was good.

Sitting In

PrintWay back, oh, several years ago, I edited a book for Dr. Joseph Pinzone. The book’s title was Fireballs in my Eucharist: Fight Cancer Smarter, and it felt a bit personal. Most of the time working on somebody else’s book is delightful because I am exploring strange and virgin territory; in this case, though, Dr. Pinzone was providing a roadmap for a route I’d already traveled–the journey through a cancer diagnosis, written by a doctor who had known how to listen as well as talk to his patients. In my case, the diagnosis was my dad’s, and editing the book brought back a lot of memories. And then it went to press, and I forgot. Or almost.

When my doctor called with my initial diagnosis I remembered exactly one thing from Dr. P’s very excellent book: He advised designating someone to go with you to appointments, to take notes and serve as a second set of eyes and ears. My first decision was to ask my sister Sandy to help me with the medical stuff. This is because she’s worked in medical and research communications for years. She knows the lingo. She knows the systems. And she knows me well enough to know how those things apply to me, my diagnosis, and my life. I did a smart thing in asking her. Kudos to me.

What I hadn’t considered was that my surgeon and the head of my treatment team, Dr. Gray, would also find it helpful to bring others to our meetings. I hadn’t expected my treatment to be such a team effort. Before I arrived I had thought it would be Marilyn, Dr. Gray, Sandy, and me. And then I got there.

Here’s a little tidbit for those of you who are unfamiliar with gynecologic oncology: It’s a messy, messy discipline. In the years leading up to the last few months I had given up on the impossible goal of feeling clean, and settled for just not having blood visible on my clothing. I had grown used to slamming awake at night knowing that if I didn’t get out of bed and to the bathroom immediately I would be leaving a trail of blood in addition to having to change my sheets and pajamas. I had completely given up on scheduling pap smears because the bleeding never stopped, and the doctors I tentatively asked about it indicated that doing an accurate examination  around heavy bleeding wasn’t the textbook way to do it. I packed my purse with pads and extra underwear, got used to wearing four pads at a time and never getting too far from a bathroom. I gave up ever wearing light colors. I chose patterns that included splotches of red. I learned to sit on hard plastic chairs in public–never, ever, anything upholstered. And because this all crept up on me, I didn’t think too much about it. It was just the way my life was.

So then I got to SCCA for my pre-surgery appointment. The office nurse who went over my preliminary history with me had clearly read my records, but then she did something a little bit different. Instead of just reciting the facts, she told me my story–I think she called it a “narrative,” but I write stories, so I knew it for what it was. This was the story of me, and my lady parts, and how we had gotten from what amounted to an armed truce to open warfare.

In order to tell that story, she had to not only have my records at her fingertips–she had to know them. She had to understand the cause and effect relationships. And when she finished, I knew that I was more than just a collection of medical data–all those details could be arranged and understood in terms of story. It was a little flattering. This bright, intelligent person had made a story about me!

And then the hammer dropped. “Dr. Gray will be in to do an examination,” the nurse said. “Please take off your clothes and put this robe on.”

And there it was–the old problem. Because of course I was bleeding again. A lot. My doctor at home had put in an IUD a month before to try to stem the tide, and in the beginning it sort of had. But the week before my trip to Seattle my body had managed to override the IUD and we were back to business as usual. And now I was supposed to take off my clothes and bleed all over this beautiful office in front of beautiful, poised, professional Dr. Gray. I felt like a slug.

“Can we put something on the bench?” I asked shyly. “I’m bleeding.”

“It’ll be okay,” said the nurse.

“But I’m bleeding,” I said again.

“Honey, welcome to the world of ob/gyn,” she said kindly. She wasn’t going to cut me any slack. Bleeding or not, I was going to get examined.

I took off everything except for my underwear. Dr. Gray and her nurse came in, and I carefully, reluctantly, peeled away my last defense, hoping against hope that I wouldn’t get blood on the floor, and if there was blood, at least no massive clots.

It was not to be. By the time I had assumed the position I could feel the hot blood and gelatinous clots slipping free. “I’m so sorry,” I said, mortified.

“I can’t find the IUD string,” said Dr. Gray. She tried again. The IUD was nowhere to be found. “Maybe your body expelled it,” she said at last. “That would explain the bleeding. If it’s in there, I can’t find it.”

“I’m sorry,” I said again.

“It’s okay,” Dr. Gray said. “This is what we do here.”

Exam over, she pulled off her gloves and left me to get dressed again. The base of the examination table was smeared with blood, and clots lay on the floor. But by then it was too late to feel humiliated–Dr. Gray and her nurse had been right there in the thick of things, and they had both said that this was their world. I took a little comfort in that as I did my best to wipe up the worst of the mess.

And then we met for the post-exam, pre-surgical consult. As I said, I had known that Sandy, Dr. Gray, and I would be there. What I hadn’t expected was two of Dr. Gray’s nurses to be there, too. We sat around a table in a quiet, cozy little room, and Dr. Gray told me what she had found.

She explained that my diagnosis wasn’t quite as clear-cut as it had seemed back home, that there seemed to be a mixture of cancer types, and that there was some indication that things weren’t as advanced as they had at first appeared. She drew a picture of my lady parts (for a mad moment I thought of offering to do the honors, since I’d been making uterus pictures for the last month, but I managed to bite back the impulse).

And then she stopped, and one of her nurses took over, asking questions filling out forms, discussing nursing-related things in soft, gentle tones. I felt myself ease a bit.

Dr. Gray took over again. She explained the surgical procedure. She laid out risks and rewards. Sandy took careful notes. I heard her pencil scratching across her pad behind me and felt comforted–I could just listen and try to understand. Sandy would remember for later.

And so it went, each of the professionals on the SCCA team taking it in turns, managing the flow of information so I could absorb it, stopping to answer my questions. At the end of the meeting Dr. Gray and her nurses gathered up all of the papers, put them into a large manila envelope, and gave them to me to pass on at my appointment with the anesthesiologist. Thanks to Marilyn, I knew where and when that would be. I was ready.

I don’t often think of meetings being “scripted,” and even seldomer do I consider that a good thing. I don’t know if Dr. Gray and her associates had actually sat down and planned that meeting out, but I can say that as Sandy and I walked through the lobby on our way to the elevator I said, “Damn, that was well-scripted.” And it was.

Sh*t Got Real…

july22_blogphotoIt’s been a few weeks since I’ve posted. I’m sure those who are not my facebook friends were waiting with bated (I’m always tempted to write this “baited”) breath to learn if I survived (spoiler alert: I did).

I survived the trip to Seattle. I survived the pre-surgery consult. I survived the surgery, once the doctor realized that my lungs don’t LIKE IT WHEN I’M STANDING ON MY HEAD (more of this later). I survived that damned easy-access pain medication button, once I banished it from my bed (more of this later, too). I survived the trip home. I survived a couple weeks of healing. And now I’m surviving an infection that makes me look like a kangaroo.

My survival is something of a delightful surprise to me–like many people who find themselves flirting with the Big C, once I Left the Happy Land of Denial(this happened two days before I had to go to Seattle for surgery) I found myself confronting my mortality in all sorts of unexpected ways.

Because I’m a mom, my first worry was for how my son was going to survive without me. At times like this I tend to obsess. I know this because it first happened when I was pregnant. The pregnancy was unplanned and I was doing it solo, and let’s face it, at the time I was far from a sterling example of mental and emotional health. The doctor had yanked my anti-depressants as soon as the test came back positive (I was already three months pregnant–my recent trip to the Happy Land of Denial was not my first visit). I was dealing with the fallout from the vicious gossip being spread by one of my Nearest and Dearest–gossip specially crafted to undermine any emotional support others might want to provide. My relationship with my son’s dad had ended six weeks before I realized I was pregnant. Things were stressful at work. My counselor had about given up on me.

Looking back, there was too much–too much uncertainty, too much guilt, too  much shame, too much failure, too much loss. “Pick one thing,” some secret part of me advised, “and focus on that.” And so I did. In the midst of all the uncertainty and the variables (Where would he go for day care? How would I earn enough to keep us? How would I manage to keep him fed? What if I dropped him? What if I turned into the thing I most feared–an abusive mother?) Somehow my brain screened out all those very real concerns and gave me one manageable worry: How would I keep my baby warm?

I dug out my fabric reserves and visited the fabric stores. And then I started making baby blankets. I made quilts, mostly–lovely pieced quilts, full of fluffy batting. And then I bought my baby clothes–in sets. I bought onesies and sleepers, mostly, and receiving blankets that coordinated with everything, because I was planning not for a baby who was going to be making a public splash, but for a baby who was going to live his life in soft jammies, cocooned in color-coordinated quilts. I might not have formula. I might not have diapers. I might not have a car seat. I might have no idea about daycare, or juggling a baby and a career. But my baby’s clothes were going to match ALL of his blankets, and he was going to be by all gods warm. When he finally arrived I had a stack of baby quilts two feet high in the corner of my bedroom.

I realized how scared I was at the idea of cancer, and Seattle, and surgery, when I found myself blithely glossing over things like tests, my will, my advance directive, getting my records from my doctor here at home to the surgeon at Seattle Cancer Care Alliance, arranging the trip to Seattle, and tracking down the hotel once I got there in favor of one simple, manageable worry: Would The Boy have enough to eat?

I filled the freezer with healthy frozen meals. I bought bread and sandwich fixings. I bought breakfast stuff. I arranged with friends to play backup, should the freezer fail him. And every time we drove past Safeway, I found myself asking, “Is there anything we need to buy for the freezer? What are we missing?”

To which The Boy replied, “Mom, we can’t get anything else into the freezer. It’s full. I’ll be fine.”

And I knew he would be–if I could just remember that one magic thing, that one missing ingredient, that would spell the difference for his survival. Leaving someone you love, no matter how capable they may be of managing their lives, is hard, and it’s scary, particularly when you have no assurance of the outcome.

It was winter, and we were going to be driving through the mountains. What if we had a wreck? What if the passes closed and I was trapped in Seattle? What if once I got there everything fell apart, and I had to come home and start over, and all the while the cancer grew and grew? What if my sister–who was meeting me in Seattle so she could go with my to my appointments and see me through surgery–and I had a huge fight? I pictured us trapped in the hotel room, prisoners of the love we bear for each other, wounded by our sometimes-prickly personalities. What if I just plain got lost?

I pictured The Boy marooned at home, the freezer empty, the house freezing because the power bill hadn’t been paid (I’d paid a month ahead, but who knew how long I might be stuck in Seattle?) withering away, lonely, starving. And cold. Very, very, cold.

I think the hardest thing I had to do was drive him to school the morning before I left, say goodbye cheerfully–and then not stop by the school on the way out of town for one last look at the person who has made my life worthwhile. For his sake, I pretended that all those fears hadn’t even crossed my mind. I pretended that I was positive I’d get to Seattle, everything would go well, and I’d be home by the weekend. I pretended–but I left town fearing that I’d never see him again.

Lest you think harshly of me, let me explain. Seattle Cancer Care Alliance was not my first choice. My doctor recommended that I go to Oregon Health Sciences University, and since I feel my doctor generally has my best interests at heart I took her advice, way back when I first got the diagnosis. I went home and called OHSU’s Gynecological Cancer Intake number.

“What’s your diagnosis?” the woman on the phone asked.

“Serous Carcinoma,” I said.

“End-o-me-tri-al Can-cer,” she said to herself, presumably as she wrote.

“No,” I said, alarmed. “My doctor says it’s serous carcinoma.” Like about everybody in my position, I had immediately googled the term and learned that serous carcinoma sometimes appears in the uterus, but that it’s a different animal than the more common endometrial cancer.

“It’s easier to spell,” the woman said.

I have to admit that rocked me back on my heels a bit–was OHSU keeping patient records, prescribing medicine, and operating patients based on what they found easy to spell? I hoped not.

“You’ll have to get me your records,” the woman said. And she gave me a fax number.

I called my doctor’s office and arranged for the records to be sent.

The next day I called to check. This time I got a man on the line. “No, we don’t have your records,” he said. “What’s your diagnosis?”

And so we went through it all again. I got another fax number. “Do you think it might be possible to arrange my pre-surgical consult and my surgery within a few days of each other?” I asked. “I’ll be driving for several hours to get there, and hotel costs for an extended stay will be hard.”

“Do you have any idea how big an organization we are?” he inquired. “We can’t make special accommodations like that. We can’t schedule the surgery until you’ve had the consult.”

“Even though I’ve had a D&C and a CAT scan, and have a diagnosis?”

“We can’t schedule the surgery before you’ve had the consult,” he said implacably.

“Would it be possible to talk to the doctor, or her nurse? Maybe if she understands the situation we can figure something out.”

“No,” he said, and then did a quick reprise of  “Do-you-have-any-idea-how-big-an-organization-we are?”

I called the next day to inquire about my records, and got a third person, who had also not seen my records. She gave me a third fax number and assured me it was right next to her desk. I hoped so. I asked to speak to someone in billing, so I could be sure my health insurance was acceptable.

“We don’t do anything like that until we schedule the surgery,” the lady told me.

About then I started seriously wondering how this was going to work. They wouldn’t schedule the pre-surgical appointment until they had my records, which were apparently going to a fax somewhere in a yurt in Outer Mongolia. They couldn’t tell me if my health insurance was valid until the surgery was scheduled. They couldn’t schedule my surgery until I’d had the pre-surgery appointment. And all the while the cancer was growing.

And that was when my sister Sandy got serious about figuring out a way I could go to SCCA. I’d found it online. Its outcomes were good. It was ranked fifth in the nation. It turned out that Sandy had a former colleague and friend who had worked at the Hutch. She offered to show me around. Other staff members did the same. Before I ever called, I felt like they knew me there. I felt like I mattered to them.

Still, though, it was not without trepidation that I called the SCCA gynecologic oncology intake line. My experience with OHSU had made me wary.

“Hello, this is Marilyn,” said a lovely lady. “How can I help you?”

I told her my diagnosis, and asked if it might be possible to be accepted for treatment at SCCA.

“We’ll need to see your records,” she said, and my heart sank. “If you’ll give me your doctor’s phone number, I’ll arrange it,” she finished.

And that right there was the beginning of a beautiful friendship, because Marilyn became my friend–my smart, plugged-in friend at SCCA, the person I asked about everything–and she’d answer my questions, explain why the answer couldn’t yet be determined, and sometimes tell me who could give me the answers I needed. Marilyn was there for me. When I called, I talked to her. She knew my case. She knew my concerns. She got my damned records the first time. She told me who my doctor would be. She explained the relationship between the Fred Hutchinson Cancer Research Center, Seattle Cancer Care Alliance, and the University of Washington Medical Center (it’s a little bit complicated, but the benefits make it worthwhile). She sent me information on places to stay. She helped me work out a pre-surgical consult and a surgery date that were within a couple days of each other. I relied on Marilyn. I loved Marilyn. I still do. I’d have a baby for her, if that ship hadn’t sailed.

Leaving my son home alone while I went far away to a city I didn’t know for a surgery that either would or would not turn out well was hard. Marilyn made it easier. My good friends the Mulders, who drove me up and then waited to drive me home afterward made it easier. My friends Megan, and Marty and Morris, and Leatrice and Mike, and Amber, and Terrie, and Sylvia, all made it easier. My son’s professors made it easier. My sister Sandy made it easier. When I got home, my mom came and stayed and made it easier. Cancer is hard. Dealing with it requires finding a provider who offers the best science, and the best outcomes. But I was lucky. In the midst of the hard stuff, I found a whole world of people willing to carry a bit of the load.

And that’s important, because there’s more to cancer than a tumor. There’s also an intensely human side to the equation. I was a mom, worried about my kid. I was a sister. I was a professional woman worried about my clients. I had a long drive and not a lot of money. OHSU has excellent science. But based on my experience, they have forgotten they deal with people.

“Do you have any idea how big we are?” the man asked. Clearly they were too big to do something as simple as assign a single intake person to minimize confusion. They were too big to understand that some of us deal with tight budgets, and the uncertainty of a long hotel stay or multiple five-hour-one-way drives can become insurmountable obstacles at a time when we just can’t afford them. They were too big to keep track of my damned medical records. They were too big to write down my diagnosis using the most specific term, simply because the more generic term was “easier to spell.” I hung up thinking that perhaps OHSU was just too damned big, if it had come to see its patients as something other than human beings.

And that was why I found the sheer size of the Seattle Cancer Care Alliance startling, once I arrived for my pre-surgery consult. As my sister and I sat in the lobby waiting for my appointment I leaned over and whispered, “It’s a lot bigger than I thought it would be.”

My sister, who has a long and illustrious history doing media relations and communications for world-class medical centers, looked startled. “What were you expecting?” she asked.

“Oh, maybe a couple of rooms,” I said. “We’d come in and check in at a counter, and Marilyn would be in the back, and there’d be maybe a doctor’s office or two…”

Sandy snorted, but quietly–the SCCA lobby was quiet and serene; it didn’t encourage excessive personal expression in the way of snorts.

I never got to meet Marilyn while I was there–her job was to smooth the way, to guide me gently through the hard, complicated, terrifying business of preparing to deal with my cancer. Once I arrived at SCCA I became other people’s responsibility. But Marilyn was my first, and best, friend there, and much as I love her, I hope we never have to speak professionally again. Good luck, Marilyn, wherever you are.



Future Present

Photo on 12-24-15 at 12.10 PM #2aHere’s the thing–what with one thing and another in my life, I learned long ago that the future was uncertain. The corollary to that, of course, was that I had to take whatever immediate gratification was on offer. I have never had a substantial savings account. I have no 401k, or retirement savings. I can’t save for a vacation. I’ve always seen this as a disadvantage–and it has been. Not being able to believe in the future has meant that I have lived in the eternal “now,” and sometimes that was a nice place and sometimes it wasn’t. Moreover, my passage through “now” has been a bumpy road–lovely highs and terrifying lows, many of which might have been smoothed out by a little planning and foresight. And those are, regrettably, not within my skill set.

When I got the cancer diagnosis “now” was terrifying. I rushed around and did all the things that my “now” demanded–I made a will. I signed an advance directive. I signed a power of attorney. I added my son’s name to my bank accounts. I got the car ready for him to take his driver’s test. I paid the bills ahead. With the help of my amazing sisters I found a top-notch cancer treatment center and scheduled my surgery. With the help of my mom I found a ride up and back. With the help of local friends and some of my friends from back in my college days I’ve arranged for The Boy to get to school and back, and have company for the nights I’m gone, if he wishes it.

Then I was ready, and it wasn’t yet Christmas. And here’s where the gift of my “eternal now” comes in. Because I had done everything I could do, I was ready to go to the hospital. And because it had now been a couple weeks, the “now” of the diagnosis had faded into the past. The “now” in which I have lived the last two weeks has been great–we’ve had a lovely Christmas. We spent time together. I enjoy my work. I’ve been doing creative stuff (yet another uterus picture, since you ask–one that sent of of my son’s friends shying backward like a startled colt when he saw it yesterday, then provoked spasms of laughter). I like my clothes. My house is a mess, but that’s all right, sort of. I’m doing important things in my “eternal now.”

If I had the gift of foresight, this might be much, much harder. As it is, I know in theory that this might not turn out well–and so I’ve done whatever I can to hedge against that. Some of that creative writing I’m doing is stuff I want my son to have–stuff that I think he might find comforting and important if things go really, really badly. That’s the reason he’s now on the bank account, and the car’s ready as soon as he can take his driver’s test. That’s why we have a backup network of friends and family.

Things might go badly. I might die. But I’m not dying today, and chances are I won’t be dying for at least a few months–even if the very worst happens. So for me, in my “eternal now,” things are great, and I’m holding onto that.

I’m not stupid, even if I am shortsighted: I know things are going to be worse before they’re better. But for right now, they’re good. And I’m relishing that.


One day early in the Christmas break The Boy let out a wounded cry. “We already have a writing assignment for Writing 122,” he called from the living room. “I can’t believe it; we’re not even in the class yet, and we’ve already got an assignment.”

Upon further investigation it transpired that his professor had assigned his 122 students a project that might actually end up netting them some nice scholarship dollars, and as part of the assignment the students had to identify and write about a controversial issue in their communities.


Note: This picture is strictly for atmosphere. Our strip club may be named either The Red Zone or something else, since it has no sign. I maintain they could have just done the business-savvy thing and kept up the “Curves” sign, since that was the business in there before.

“I think I’m going to write about the strip club,” The Boy informed me a few days later. And that was the beginning. Ever since we’ve been reminiscing about the early days, when the strip club had only just moved into the old “Curves” exercise studio right next to the big Mexican Food! Pizza! Carnes Asadas! store along the highway.

When we first heard about the club we were fascinated, and also perplexed. How had such a controversial business managed to gain a toehold in our town, where the major source of entertainment is going to church? And how had we not noticed it?

We got directions. We cruised slowly along the highway, peering at signs and into windows. We finally identified the club not by what I had been expecting to see–large pink neon signs flashing Girls! Girls! Girls! (Editor’s note: See image above for a graphic representation of what we did not see)–but by the signs in the vacant store next door.

Jesus and Mary had shown up, full size and stiff with either cardboard or disapproval. Mary peered suspiciously at the darkened door of what we believed was the strip club. Jesus stood facing passersby: “Yeah, I’m here…what of it? Some of my best friends are strippers…”

On the way home I told The Boy the story of one of my favorite aunts, who had for a brief time been married to My Uncle the Child Molester. She had been a strong, serene, woman, a vigilant mother. She had beautiful red hair and, as her oldest daughter informed us, some beautiful pasties that she used for work. My aunt was a stripper. She left my uncle as soon as she discovered what he was up to and I lost touch with her, and I’ve always been a little sad about that. I liked and respected her a great deal. She was a good mom.

IMG_0351A few months later we drove by and realized the protesters had refined their message. Cardboard “you want to make somethin’ of it?”  Jesus had given way to Poster Jesus, who had been moved clear the hell and gone over to the vacant storefront door farthest away from the strip club, and out of the way of temptation. Mary  now stood between him and the Girls. She had been somewhat ambiguously surrounded by a flashy frame of metallic gold paper doilies. Whether this was to blind Jesus to what lay beyond or to bribe Mary into hanging around and keeping him out of the club was an open question.

pastiesThe Boy had another idea. “I think they’re her pasties,” he observed. We toyed with the idea of adding his graduation tassels to the middle of a couple golden doilies, just for the sake of completeness, but ultimately opted to just come home instead.

All of this, of course, is not getting his paper written. He has to Do It Right, and talk to people in our town from various walks of life and stripper-friendliness, and from this somehow explain how he sees the strip club.

Maria_de_Guadalupe__neuzeitlichI, of course, do not have to Do This Blog Right. I can do it any way I damned well please, and what pleases me right now is to ask myself the same question The Boy is having to ask himself in his paper: what do I think about having a strip club–any strip club, even one as low-profile and apologetic as ours seems to be–in town? Who works there? Because let’s face it, I know a lot of people in our town, and can’t think of any of them as Stripper Material. Many of my female townmates have souls they practically dunk in Clorox each week, and those who don’t seem to be more blue jeans and boots types of gals.

IMG_0348It might be that I just can’t tell the difference between strippers and other women–after all, one of my favorite aunts turned out to be a stripper, and when I was in California I looked in vain for Ladies of the Evening along Sunset Boulevard. Finally a co-worker took me firmly by the elbow, led me outside the office (in front of which Mr. Buttafuoco had been arrested for trying to get a nice lady to give him sex in exchange for his watch. It was a nice watch, but still…but I digress). My co-worker took me outside, and we stood on the porch, and he pointed. “There,” he said, “and there, and there.”

“But how can you tell?” I asked.

IMG_0350And he gave me a short tutorial on Recognizing Hookers. The basic points seemed to be that they just stood around in weather-inappropriate clothing and high, high heels, and waited for cars to pull up and stop for a little conversation.

I’m still not good at identifying hookers and strippers. What makes them so different from me? Many are like my aunt, doing a job because it pays better than some of the other alternatives available to her. Most are just trying to get by. And that’s like just about everybody else in this town.

And then there’s the question of bareness. It’s been in the news a lot lately–mostly GOP conservatives getting very, very exercised at the thoughts of tatas exposed so the Little Ones can eat. The conversation has gotten demeaning and ugly, including references to “titty twisters” as a suitable reaction to public breastfeeding (it’s not, my Grandpa actually ended up with breast cancer in one nipple, and he swore that it had resulted from one of his co-workers at the foundry giving him far more titty twisters than Grandpa would have liked). So, not a fan of yanking on breastfeeding moms boobies around here.

But the question remains: How is it that in America we regard exposed breasts and bodies as so threatening to our morality that we are happy for babies to be forced to nurse in filthy bathrooms rather than offend our delicate sensibilities? Because the rest of the world doesn’t feel that way. People sunbathe topless and even nude in European parks and on beaches, and it’s a non-issue. It’s been like that for years.

In other countries women are wrapped up to preserve their modesty, and their families’ honor–and sometimes forbidden an education, and killed if they have the misfortune to be raped. Might a stripper who exploits her body for others’ pleasure have a healthier self image than a woman who lives her life wrapped from head to toe, knowing that if she is raped, she might well be killed to expiate the shame to her male relatives? I don’t know, but it’s a good question. Body-shaming is a powerful thing, and it happens in all kinds of ways.

So how do I feel about the strip club coming to our town? I don’t know. It’s hard to have strong feelings about an organization that seems to be embarrassed more than anything. I think before I make up my mind I will have to know more about it.

Who works there? Who owns it? How well are the women paid? What sorts of extra services are they encouraged or required to provide? Do they have a decent health plan? Does the owner see them as professionals doing a job, or as assets to be exploited? How do the women see themselves? Who goes to the club? Why do they go there? How do they treat the women on the stage? Why is it that the women who work there are seen as Less, while the men who go there are given free passes (it was a bachelor’s party, it was business, my boss wanted to go there…)?

There’s a long and fairly honorable history of women in the “comfort” business in our part of the state. In the days before social services, town leaders in my hometown just thirty miles away used to send needy families to one of the town madams, who was famous for helping women find jobs–and not just on their backs. Neither working in a strip club nor as a prostitute disqualifies a woman, or man, from being human. And yet the industry is rife with exploitation and abuse.

I’m not done thinking about this yet. Arguing the big issue of Strip Clubs is very different from talking about the strip club in our town, where I most probably know both staff and customers. This is personal. And its effects, and how the town responds to the people who work there, are also personal. But in what ways?


The Amazing Patrick Dunphy

Meet The Amazing Patrick Dunphy

coverHe’s quiet. He’s kind. He plays a mean tuba. He’s almost got a girlfriend. He’s scary smart. He’s almost seven feet tall. He’s the center of his football team’s one play. He views the world through rose-colored glasses not because he’s an optimist, but because that his family’s eye prescription. He’s got a train car full of Dead Relatives living behind his house. His chemistry teacher’s a real monster. And nobody in his family—including Patrick himself—is quite who he thinks they are. And that’s about to matter, a lot.
So who is the Amazing Patrick Dunphy?
Take a ride on the Rosemont Car
and find out.

For those of you who are already tired of all the cancer stuff (and all gods know I am), here’s a fun break–I’ve just reached the “official first draft” stage of The Amazing Patrick Dunphy.


This book had its inception on one of our many, many car trips, way back when The Boy was in middle school, and unexpectedly discovered that he had become something of a local landmark. Partly this was because he was The Tuba Player. To my knowledge our town has produced exactly one in recent memory. Apparently whatever municipal gods determined that Milton Freewater needed a tuba player also decided that since there was just going to be the one, they’d better make him a good one, and so it was that Patrick became something of a fixture, marching through local parades in the back row, carrying a sousaphone. In high school he went on to place fourth in the state solo competitions, so there was that, as well.

The second part of his local fame came about because in seventh grade, I believe, he decided to play football. Actually, I think this was less an active decision than it was a gradual wearing away of his resistance by his classmates and the football coaches. I believe I have mentioned that Patrick is, and always has been, pretty much gigantic. I don’t think there was ever a time when he wasn’t the biggest kid in his class, and once he hit middle school that became the biggest kid in school. And that didn’t change, all through high school.


Snowflake Simpkins, victim of a raging case of dandruff, chemistry teacher, and school demon. Her big weapon is Detention, though she sometimes gets behind the wheel of her aging Bonneville and wreaks havoc that way.

So he went out on the field, blind as a bat because it didn’t occur to me to get him sports goggles, and earned his keep by pushing back against the two to four boys opposing teams stacked against him. It seemed unfair to me, but I am reliably informed that that’s How the Game is Played, so I kept quiet in the stands. I don’t think I ever saw him tackled and taken down, though I’m sure that must have happened. And that was the second thing.

Football is Big in our town. Friday nights are often community parties down at the football field, where we watch our gallant boys in crimson and black mostly go down to defeat. This is really to be expected. Many of our school children hail from Latin-American countries. For them, soccer is The Sport. And our soccer team kicks, well, butt. Our football team, composed of some big boys and lots of not so big boys, doesn’t fare so well. But they’re ours, and we love them, and comfort ourselves that learning to lose is an important part of sportsmanship.


Here’s Patrick and his mom, who is either cooking corn chowder (something I do) or chili (something I also do), or brewing up Babylon Candle wax for Patrick’s best friend Chimpie to snack on (something I don’t do, also, Patrick has no friend named “Chimpie.” Chimpie is Fiction, but very, very funny.)

So into this mix drop The Boy, a defensive coach’s dream. From his first game, our rival schools tried to recruit him. And he didn’t care. He approached football like he approached math: he went out on the field, turned in a workmanlike game, and went home. Football didn’t touch his soul–something he acknowledged at the beginning of his junior year.

But by then the die had been cast: Pretty much everybody in town knew him, and most everybody liked him. No one knew me–something that became painfully clear one day at lunch, when the nice lady preparing our food asked if I had been in town long. Several years, I admitted, and then I mentioned that I was Patrick’s mom.

“Oh,” she said. “We know Patrick. He’s such a nice kid.”


And here we have Principal Jones, who is of course called “Indiana Jonesie” because of his fondness for safari suits. He’s a meek little man who calls upon Patrick from time to time to get things down off the top shelves in his office.

On the way home I joked that I was the mother of The Amazing Patrick Dunphy. The name stuck. We began bragging to each other about things that were part of our amazingness. And then one day I said I was going to write a book about it. I was joking–I tend to shy away from writing stuff that can be too clearly tied to us here in our home town. But Patrick liked the idea. We started noodling around with ideas.

And the Amazing Patrick Dunphy and his mom were born on the page. They are not us, though many of the things in their lives are drawn from our own. They are exaggerations–bigger, better, in all ways more amazing, even magical (though not reliably so). It’s a fun book, a flight of fancy, a playing with ideas. It’s a written version of the kinds of conversations we sometimes have, where the sounds of the words and their interplay take over, and ideas attain lives of their own.

I’ve been working on this for quite a while, but the cancer diagnosis (you knew I’d get there sooner or later, didn’t you?) has stripped away the comfort of the word “someday.” “Someday” has become today. Instead of finishing this book “someday,” I need to work on it, every day. I need to Make Progress. And then I need to move on to the next book.


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