One of the amazing things about cancer blogging is the connectedness that we sometimes develop towards our fellow travelers, that unique sense of community.  It can be so strong that we are hesitant to give it up.  Years after the news of our remission we still identify with other survivors for we will forever be “survivors”.  Maybe it is partly because of the way cancer grabs hold of us, searing into our primal identity the brand of the Beast.

Lori Lee, whop writes as “Miss Mel” at her blogsite Miss Melanoma: The Official Site for the Fun Side of Cancer , looks back at the acute phase of her own illness, offering hope to those still mired in the struggle.

Ups and downs

I remember when my weeks were filled with a different doctor’s appointment every day, when my job was to do my treatment and to be at the right waiting room at the right time.  I remember the hours of sitting and thinking, too drugged to read or follow a tv show, too tired to care how the 30 minute fiasco ended.  I remember thinking how lucky I’d been just to be able to walk around at one point in my life NOT attached to an i.v. pole, and how mad I was at myself that I had not appreciated it.
I remember the exhaustion of just making the decision to get out of bed that day, the shooting pain in my heels as I walked to the bathroom each morning.  I remember the nausea and the fatigue and the hell I thought I’d never get through.  I remember a year of treatment turning into 3 years of recovery.

Five years later, I have a job that I (mostly) love, where I spend way too much time.  I work out almost every day again, have hobbies, stay too busy, paint, read, travel, see my friends often, and have cocktails over lots of laughs.  Daily, I am finding myself doing things I used to miss doing- running, dancing, shopping, playing, wearing awesome clothes, and going out with friends.

And so to see my friends with my same disease go through hell, retreat back to a life of endless scripts and pharmacies, tests, phone calls, exams and treatments, decisions about chemo and surgery and radiation and clinical trials- it’s sometimes too much to have to process.

And so I dedicate this to my peeps still going through it all and those that I don’t even know who are fighting the same battle, too.  I lift you up with waves of peaceful thoughts.  I send healing vibes your way.

And I cherish my seconds, my minutes, and my days of freedom in honor of you.

-MM

from:

I am going to be traveling for a while – out to Boston to see the twins.   They’re ten months old.  It’s also a big birthday for Tish so we’re staying at a B&B in Pennsylvania near the Allegheny National Forest.  I don’t want to lose momentum on the blog after my lazy summer.  So I am constructing posts in advance as I’ll not be near a computer.

For today (we’ll be in Ohio) I have chosen a guest post from Kirsten lists her occupation as a “homeless outreach worker” and describes her interests as “street ministry, universal health care, and finding grace in odd places“.  Her motto is “ain’t got time to die.”  Kirsten is a melanoma survivor and she writes at her blog, Barefoot and Laughing

What do you do, if you don’t mark your body?

I don’t want a tattoo. At least, I don’t think I do. But I’ve been thinking about the idea for awhile.

In the friends-I-never-get-to-see category, there’s someone here this weekend whose tattoo I’d only seen on Facebook. I asked to see it in real life. His wife jumped on it: “With what you’ve been through, you should totally get one.”

Wow. I wonder why that’s the go-to celebration? It absolutely is. When I had my cancer surgery two years ago, I thought of getting a cartilage piercing on my ear near the surgery site. I didn’t, because the scars are sacred enough. And I didn’t want to have to take metal jewelry out of sensitive places, for future scans.

K said, “Get a tattoo.” What she really meant was, “Hallow your body.” I get the connection; really I do. I’ve thought along those lines myself. But I have enough exposure to needles right now. And there isn’t a design I really want.

I called A this morning and we chatted about it. She doesn’t like the idea. But she said, “If there were a universal symbol for cancer survivor…” She nailed it. I’d mark my body in solidarity, in a New York second. I’d probably draw it on myself in Sharpie, and wear it around right now. But there isn’t one.

There’s the black ribbon for melanoma awareness, but I have no connection with that symbol at all. I’ve been thinking. If you have breast cancer, you can choose to be obvious or not afterwards, depending on how radical your surgery was and what you want to do. My scars are mostly where nobody will see. And for many of us, after the hair grows back (I’ve been leaving mine everywhere I go for two months, but it only looks thin even to me when it’s wet), there are no obvious physical signs.

What we have is community around the newly diagnosed. We have our stories. Two and a half years ago, shellshocked and disbelieving, I hung up the phone after my doctor called me. I turned to my community—seminarians, teachers and blog readers—and announced how terrified and helpless I felt. People were there for me in whatever ways they could be. And then I ran into a classmate in the parking lot. She said to me, “I had breast cancer eleven years ago.”

It was this:
“Oh, shit.”
“Been there. Let’s talk.”

I tell my own story all the time. Not because I either need help or am giving it, but because I’m living it right now. My friends imagine what I’m going through, and they care, so I tell them. I actually like it when people ask me questions. I get to talk about it. That also helps me process.

I can answer deeply, or not:
“I haven’t seen you in ages. I don’t write, but I read everything. How are you?”
“Fine right now. Treatment’s working. I get to be happy being alive.”

I don’t need mentoring through this, anymore. And I’m in the middle of it, so I can say to someone (or a group, like over my birthday weekend), “I know what this is like, and here’s what helps me through it.” I’m not yet cleanly on the other side.

If I live into normalcy long enough—by that I mean get up and go about my day, don’t throw up and don’t think about cancer—I will be like D when she met me that day in the parking lot. “You’re new. I know you’re scared. Let’s take a walk.” Or like Margaret, who met me online then and who still walks with me from the opposite coast. She said she doesn’t self-identify as a survivor very often anymore. But obviously she does, when people (like me) need her to. I’m at terms with what I’ve been through. I know what could be ahead of me—either health for a year or two or ten, or getting to be old. I’m more emotionally ready to be hit again with disease. I can do that moment in the doctor’s office. Long life is the great unknown to me.

Let me qualify what I said. I don’t need mentoring through crisis. I think I do, for finding my way back into life. But it’s not hard to find people. That’s just what happens. That’s what this community does. I tell my story; someone meets me with theirs.

If I live long enough, I’ll get to be one of them. And I think I’m figuring this out. If there were a physical, obvious sign that I could wear forever, I would do it. I want to be there for people when they’re looking for someone like me. But none of us ever do that. What D did in the parking lot was look perfectly normal, while she showed me her scrapbook from Mars.

Of course she came back different. But that was clear in the sacredness of what she did for me. Not in the shape of her chest. I’d have never known, except she told me.

If there were something like the pink triangle for cancer survivors, I’d get the ink. There isn’t. There’s no instant obviousness. We come out in relationship. We come out in story. It’s the way you wear it, on the inside.

I’m not done with this yet, but I’ve typed long enough. This is giving me a key, something to chew on for however long I get to. It’s another way of phrasing the question, “Who will I be now?”

I have questions along a side trail, about how to be in relationship with my post-cancer body itself—but I need to walk with them longer before I can get to the first beginning of that.

~ Barefoot and Laughing

Cumberland Falls

~ After age 30, exercising for more than an hour a week may help cut a woman’s chances of developing breast cancer, according to a study presented at the American College of Sports Medicine’s annual meeting in Seattle.

In the study, Lisa Sprod of University of Northern Colorado in Greeley and colleagues asked 4,296 women to recall their physical activity levels during four key stages of life: 10 to 15 years old, 15 to 30 years old, 30 to 50 years old, and 50 years old and older.

The odds of developing breast cancer did not appear to change in relation to exercise levels between ages 10 and 30, but women above age 30 significantly cut their chances of developing breast cancer if they were more active, the researchers found.

~ New research finds that people who had radiation treatments for cancer as children are less likely than the general public or even their healthy siblings to get recommended screening tests.

Doctors say that fewer than half of the cancer survivors in their study received mammograms, colonoscopies or other screenings as often as advised.

Some people may avoid screening tests because they want to put the scary experience of having had cancer behind them.

Cancer survivors are at higher risk of developing second cancers later in life, because treatments like radiation raise this chance, and because of genetic factors that led to the disease in the first place.

~ An experimental drug has shown promise as a treatment for advanced melanoma, one of the deadliest of cancers, according to preliminary results from a small trial presented on Monday.

The oral drug, known as PLX4032, is being developed by privately-held Plexxikon Inc. and Roche Holding AG.

The experimental compound is designed to block a genetic mutation in a cellular pathway, known as BRAF, that occurs in up to 60 percent of melanomas and about 8 percent of all solid tumors.

~ First there was surgery, then chemotherapy and radiation. Now, doctors have overcome 30 years of false starts and found success with a fourth way to fight cancer: using the body’s natural defender, the immune system.

The approach is called a cancer vaccine, although it treats the disease rather than prevents it.

At a cancer conference Sunday, researchers said one such vaccine kept a common form of lymphoma from worsening for more than a year. That’s huge in this field, where progress is glacial and success with a new treatment is often measured in weeks or even days.

Experimental vaccines against three other cancers — prostate, the deadly skin disease melanoma and an often fatal childhood tumor called neuroblastoma — also gave positive results in late-stage testing in recent weeks, after decades of struggles in the lab.

~ Breast cancer survivors risk having their disease come back if they use certain antidepressants while also taking the cancer prevention drug tamoxifen, worrisome new research shows.

About 500,000 women in the United States take tamoxifen, which cuts in half the chances of a breast cancer recurrence. Many of them also take antidepressants for hot flashes, because hormone pills aren’t considered safe after breast cancer.

Doctors have long known that some antidepressants and other medicines can lower the amount of tamoxifen’s active form in the bloodstream. But whether this affects cancer risk is unknown.

The new study, reported Saturday at a cancer conference in Florida, is the largest to look at the issue. It found that using these interfering drugs — including Prozac, Paxil or Zoloft — can virtually wipe out the benefit tamoxifen provides.

~ There’s more troubling news about hormone therapy for menopause symptoms: Lung cancer seems more likely to prove fatal in women who are taking estrogen-progestin pills, a study suggests.Hormone users who developed lung cancer were more than twice as likely to die from the disease as women who weren’t taking hormones,

However lung cancer proved fatal in 46 percent of hormone users who developed it versus 27 percent of those given dummy pills.

“It’s another piece of evidence to suggest that hormone replacement therapy should be used with great caution,” said Dr. Richard Schilsky, a cancer specialist at the University of Chicago and president of the American Society of Clinical Oncology.

Women who take hormones already are advised to use the lowest dose for the shortest time possible, doctors said. “Women almost certainly shouldn’t be using combined hormone therapy and tobacco at the same time,”

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