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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.

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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.

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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.

 

 

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