The Birthday Gifts Blog

Birthday Blog Prologue: I haven’t blogged much in the past ten months because I’ve been struggling with things that I couldn’t bring myself to put on the page. I learned a lot this week, including how fortunate I am. And so for whatever reason, I’m ready to put the words on the page.

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It’s Cam’s birthday, but he’s the one who’s giving me gifts.

We spent this week at the Mesothelioma Applied Research Foundation’s annual symposium in Washington, DC. MARF is the leading organization committed to both funding research and supporting patients with mesothelioma.

We spent Wednesday on Capitol Hill, running from office to office to meet with our congressional representatives (well, mostly their staff) to raise awareness for desperately needed research and support for veterans, who make up about a third of meso patients.

We spent Thursday and Friday in a hotel conference center, listening to hours of researchers reporting findings, doctors sharing their observations, and patients, caregivers and the bereaved swapping stories and information. It’s a remarkable conference because we all sit in one big audience together: doctors and researchers report to colleagues and patients alike, and patients and their families get to interact with the medical professionals in a non-clinical setting. It encourages the scientists to see the people who benefit from their research. And it strengthens us to hear from the people who are in the labs and operating rooms, grappling on the other end of this evil disease.

It’s not how I’d want to spend a birthday week, but I’m glad Cam initiated our trip this year.

            To appreciate the gifts Cam gave me, you need more context: you need to know how much I needed what he gave.

            One of the last breakout sessions of the symposium was for caregivers. I had been delayed by another patient, so by the time I entered the meeting, most of the twenty caregivers sitting in the circle had already shared their stories.

            Two people introduced themselves before it was my turn. The one who spoke right before me explained that he’d been torn—his wife was at the end, and he thought maybe he should have attended the bereaved session across the hall. He was envious of the rest of us still providing hopeful care.

Then it was my turn, and everyone was looking at me. And something small—or maybe not so small—just kind of snapped inside. The sticky glue that had bound my vocal cords shut for months melted away.

            “My husband has peritoneal mesothelioma. He had HIPEC in December 2012, and the hot chemo wash during surgery caused kidney failure. He didn’t respond well to dialysis, so thankfully his kidneys got to the point after a couple months that he didn’t have to continue it.”

            I didn’t stop talking, even though I kind of wish I had. I spilled what had been stewing inside since last June when Cam had his six-month follow-up CT scan. See, everyone wants to hear from their doctors that they’re “NED,” that the scans show “No Evidence of Disease.” And that’s what we got on his scan in June and again in December. Yet I could no longer hold back the outrage I have for this monster disease that eludes and hides and haunts.

            As I continued to talk, I could feel that I was in that place my brothers call “dramatic”: My hands found their way up the side of my head, pushing through my hair; my already big eyes opened wider; deep emotion punctuated the frustrated words I heard coming out of my head, as I threw them down into the middle of the circle of caregivers:

            “N . . . E . . . D . . . makes . . . me . . . CRAZY!

And my mouth was off and running.

“We found the cancer because my husband had his appendix out, and the good pathologist who examined the tiny slide of appendix tissue found the mesothelioma. No one in L.A. treats peritoneal meso. Our oncologist said, ‘I know what it is, but that’s about all.’ We spent four months searching the country for an expert. Cam had no symptoms, and he felt great after the appendectomy. And NONE of his CT scans before surgery EVER showed ANY disease.”

I paused. People blinked at that part about the clear scans.

“We went with the doctor we found in North Carolina. The others wanted exploratory surgery. The North Carolina doctor was the only one who said, ‘I guarantee you there’s more disease in you than just what’s on that slide. You need to treat it.’ And he was right. When Dr. Levine sliced Cam open for debulking and HIPEC, it took him six hours to cut and scrape out all the visible cancer that ran from the bottom of Cam’s abdomen up to his diaphragm.”

I kept talking. Words were falling out very fast.

            “Cam never complained, but when his kidneys totally shut down after the HIPEC and he gained thirty pounds of water weight in the four days after the surgery, he told Dr. Levine that he felt he was going to burst out of his skin. Normally Mr. Positive, Dr. Levine, who had now performed 515 of these invasive HIPEC surgeries, looked down at my bloated husband, covered in wires and tubes that tethered him to a hospital bed, and he minced no words: ‘With the amount of cancer I found in you, if I hadn’t done what I did, you maybe would’ve had a year.’”

            And I didn’t stop talking then, either. I had slowly been awakening during the course of the conference to the realization that Cam’s experience with clear scans but lots of cancer wasn’t as typical as I had once thought for a mesothelioma patient.

            “So he was FULL of cancer, but it didn’t show up on any scans. And yet, scans are all anyone has to track this? IT’S CRAZY-MAKING! I’m afraid I’ll wake up one day and suddenly be in the exact position of this dear man sitting next to me—the cancer will be on the scans because it’s taken over.”

            And to purge months of loneliness, I dumped one more final burden on my caregiver friends: “Last week I saw a family member and told her, ‘With this disease, it isn’t if it comes back, but when.’ And I'm pretty sure she just thinks I’m pessimistic.”

            There. It was out.

            Ten more minutes of other people speaking, and the group session—the tiny community of people who understand—would not meet again in real life for another year. As it ended, the group leaders didn’t run to the people in the circle whose spouses would be entering clinical trials or who were in the midst of their sixth round of chemo; instead, they swooped in to offer comfort to me.

            I felt bad about it immediately. Others were in a worse place. I shouldn’t make people worry about me. And yet I was amazed that there was so much goodness among those caretakers that they had room in their hearts to support me with the uncertainty I was grappling with.

            Cam asked me several times that night if I was okay. I didn’t want to tell him about the caregivers’ session. I didn’t want him to worry, but I also thought it might get back to him anyway.

            So while we were getting ready for the symposium’s closing dinner, I looked at our reflections in the mirror and recounted my diatribe to the caregivers. I even revealed the “it’s not if but when” part, the unspoken thing that has been needling me most.

            And that’s when he gave his first birthday gift to me. He looked at me with total love and said, “It’s okay. Everything you said is okay, and everything you feel is okay. It’s okay to feel what you feel.”

            The words sunk into my skin and soothed. It’s not the first time he’s said it during our cancer journey, but the fact that he can say it when I need it is everything.

            “But how do you do it, Cam? There’s no chink, no crack in your attitude. I worry that you’re keeping it inside but molding it into something positive when you speak.”

            “I just keep remembering what you named our blog.” He paused and looked at me a moment. “We have today.”

Then he kissed me and hugged me tight. My first gift of healing. Off we went to dinner, where Cam made the rounds like I’d never seen any introvert do: shaking hands, patting backs, embracing hugs, giving thanks for others’ inspiring fight, and making as many new friends as he could.

            The second gift came Saturday morning.

            There we were, getting ready for the day, looking at each other’s reflection in the mirror again. I couldn’t stop thinking about Cam the night before at dinner, and one particular conversation played through my head: I’d made a new friend, a bubbly caregiver whom I introduced to Cam when he circled back around to our table. My new friend greeted Cam and made a harmless joke about me needing to improve my attitude—clearly referencing my outburst at the caregivers’ session.

            Cam was immediately at my defense. He put his hands on my shoulders and said sincerely, “She has a great attitude.”

            Standing in the mirror Saturday morning, I questioned his defense of me: “Dr. Levine said that the way to handle not being able to find things on a scan is to develop nerves of steel. How will I know if I have nerves of steel? What if I’m actually a crazy person without nerves of steel?”

“That's the beauty. You decide. You determine. You declare what you will be.”

“And is that enough? If I decide, does that make it reality? Will God see it that way? Will other people see it that way?”

“Some people will see you as faithful; some people will see you as crazy. That's part of the lesson, too. But if you're concerned about what you're putting out to other people, you can cultivate what you put out.”

That was gift number two.

Gift number three was this morning.

Being in DC, we wanted to take in some sights on our one day before heading home. We’d made it to the Library of Congress yesterday afternoon, but Cam wants to see every. possible. thing. when. he. travels. I had commented yesterday that together time was actually what I needed.

So gift number three was extra time in bed after we woke up. We’ll be apart for some weeks for his work, and I needed to soak up the smell of his skin. He dozed while I stroked his back for an hour and memorized him. He’d wanted to rush over and take in the Folger Shakespeare Library, but he gave me quiet time together instead.

Gift number four came as we settled into our plane seats. I pulled out the book for this month’s book group, The Fault in Our Stars, by John Green. “It’s about cancer,” I rolled my eyes. “Two teenagers with cancer. Not exactly what I want to read this week after the conference and while we’ll be apart.”

And with all the serenity in the world, he said, “Don’t be afraid of cancer.”

My eyes were immediately welling. “Don’t be afraid of cancer?” Incredible.

“It can’t take anything important.”

“It can take everything! I know in the eternal perspective we have each other, but I have a finite, human mind that can’t grasp that.”

Again he spoke evenly, with as perfect a love as I’ve ever received from anyone, “Don’t be afraid of the book. You love books. Don’t be afraid of cancer. You love people with cancer. Don’t be afraid of the teenagers. You love teenagers. Don’t be afraid of cancer. Don’t be afraid of anything.”

Gift number four. The most perfect gift I’ll ever receive. And Cam gave it to me on the birthday he fought to have.