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.
* * *
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.
