Fungible Convictions

I made my first submission to urbandictionary.com today after I noticed the single definition for “cancer card” was grossly inadequate, as it focused on the whinyness of cancer patients rather than the AWESOMENESS of being able to play the card, despite the circumstances that got you there.

So here’s my definition, which was approved today and should be posted here tomorrow:

Cancer card

The unassailable excuse of cancer patients and their immediate family that gets them out of events and responsibilities as needed.

Example:
John didn’t want to go to his cousin’s wedding. So at the last minute, he played the cancer card and told his aunt he didn’t feel well enough to make it. While his aunt fretted about what his absence meant for John’s health, John watched college football all afternoon in his underwear.

Today marks two years since I went to the hospital suffering from complete short-term memory loss, only to find out that it was caused by Hodgkin’s lymphoma. I covered all the fun in a post last year.

I would simply like to say thank you again to all friends and family who helped during the first rather helpless weeks and the six months of chemo that followed. But especially, on this particular July 16th, I offer a special thanks to Patrick Winter, a good friend since just before seventh grade, who, despite having just moved to a new city, Chicago, this week two years ago, turned around and came to my hospital in Boston. It’s also when he mentioned that the friend he was staying with in Boston had a sister in Chicago he liked. So my thanks and congratulations to Patrick, for tonight I get to lose some short-term memory again during Patrick’s “menfolk party” ahead of his wedding in two days to that friend’s sister, the lovely Rachel. Way to go , Paddy!

From the Onion: I Was Going to Succumb To Cancer, But Then I Got This Mylar Balloon:

Suddenly I feel, like, 10,000 times better.

Just in the knick of time, too. I was about to rely on the loving support of family in combination with several rounds of targeted chemotherapy advised by my oncologist in order to fight the spread of the disease. But now, well, just look at that balloon floating around. Wheeee!

Comedians have a short list of things that are absolute comedy death. Cancer’s #1.

But once you deal with cancer, whether as a patient or as a family, jokes about it are hilarious. There’s all sorts of irony, gross-out stories, a need to top someone else’s cancer stories. However, you need the knowledge and comic ammunition…

The main reason there’s a disconnect between the way survivors/families and others perceive cancer humor isn’t because it’s a taboo subject, but rather because cancer is so complicated, and complicated humor is tough to pull off. In the average person’s mind, cancer = suffering + 1,000 medical mystery stories from the local news. But people who’ve been through it know that you can make jokes about glow sticks, “lifetime” guarantees, and my current favorite—because my Hodgkin’s took out my short-term memory for a couple months—one that combines cancer and memory loss:

Doctor: I’ve got your test results and some bad news. You have cancer and Alzheimer’s.
Man: Boy, am I lucky! I was afraid I had cancer!

So why does The Onion article work? I’d say it’s because despite its unfamiliar details about cancer treatment, it’s focused outwardly on the numnuts who gave such a crappy gift. That focus keeps things simple. It’s relatable. It could just as easily been written about a bad joint birthday or Christmas gift.

But then it’s ramped up by the fury that only comes in the unfairness of illness. That’s where anyone who’s been through cancer laughs extra hard. Most cancer patients would want you, as their friend, to try out a joke, even a terrible one, because you’d be doing it in person and acknowledging exactly what’s in front of you.

And heck. It’s a lot better than a card signed by the whole office, attached to a Mylar balloon.

i.e., a bunch of slides about my case. Here’s a link to the full presentation. But I have some favorite slides. . . .

Page 11 is the first time I saw images of my tumor. See below the piece labeled “mass”:

Page 14 is the first time I saw my own histopathology, with cancerous cells circled:

And, what’s extraordinarily humbling and makes me thankful that Marc and Dr. Abend were so damn good at their jobs, is how bad things look in a PET scan when Hodgkin’s reaches stage IV:

While sneaking down to Cape Cod again this past weekend, Lindsay and I finally got to meet our doppelgangers, Scott and David. Scott (at right in the photo) is the only other person we’ve come across who suffered the same side effects of Hodgkin’s as me, and even though we had a fantastic weekend staying with a friend of mine from study abroad, whom I hadn’t seen in years, having tea with these two was the highlight—Lindsay still gets a little weepy.

They’re just great men, and we can’t wait until the next A.P.L.E.H.A. convention (membership, however, is full).

It’s pretty despicable when large news outlets argue that minor hiccups at Apple might have something to do with the CEO’s health. Their argument is that Apple is misleading investors by not releasing Steve Jobs’ health record (Jobs is a survivor of pancreatic cancer) after Jobs looked “dramatically thinner” at recent appearances.

There’s a visceral disgust at covering a company this way. Then there’s this from the Wall Street Journal:

The dearth of information has led investors to do their own digging over the years. In 2004, one hedge fund hired private investigators to tail Mr. Jobs to hospital appointments in the hopes of figuring out how sick he was, said a portfolio manager at the fund. Eventually, he said, Mr. Jobs “seemed to catch on,” and became harder to track.

Why is it disgusting? . . .

Because the privacy of one’s own health status is sacrosanct. Just ask Americans who lived under Roosevelt.

And practically speaking, what difference does a non-disclosed health condition have on a company’s performance? If that’s what investors are focusing on, doesn’t it mean they haven’t properly valued the company’s succession plan for any hardship that might hit a company’s leadership? For an investor to demand that Jobs make his health record publicly available is admitting that that investor has no idea what the company is actually worth should something unexpected happen. Countering that stalking Jobs to his doctors appointments is therefore good business sense turns every CEO into a means to an end. That might make sense in the short term, but to convince every CEO that their own humanity is worthless is a bad long bet.

Man, it makes me wish actuaries invested my money.

Nothing has had Lindsay and me reevaluate my experience with cancer quite like the conference we attended yesterday. While the morning session, Couples and Cancer, reinforced everything we thought we knew—what chemo was like, how cancer can bring couples together, even couples that have been couples for only a month before diagnosis—the afternoon session, Intimacy After Cancer, was right out disturbing. This wasn’t because of the content, as the moderator was an outstanding counselor from Dana Farber, but because Lindsay and I had thought we had it rough. We moved through the process of mourning our old lives pretty quickly, in part because we knew our new normal would be a life influenced by but not defined by cancer. But the people in the afternoon session put our experience in such a radically different perspective, given that they couldn’t get away from cancer no matter how hard they tried. We went in thinking “Intimacy After Cancer” would be another session for couples, but it turned out we were the only couple there. The others were mostly young singles who’d had mastectomies, ovaries removed, or who hadn’t dated because they had no idea how to introduce the fact that they’d had stage 4 cancer or a kind that would never fully go away.

Then there was the competitiveness—akin to parents of high school seniors bragging about where their kids had been accepted. “I had Hodgkin’s.” “Well, I had a brain tumor.” “Well, I was given a week to live, fell in love with another patient, somehow got better, and then the guy I fell in love with died.” And the competitiveness—it shut me up. I can’t begrudge the other attendees their need to tell their stories, even if they need to top each other. But I’d been so caught up in my version of cancer and the cancer stories you see on TV (i.e., stories of conquering cancer or killed by it), that it had never occurred to me that some young people develop cancer, get treated but not cured, and live with outwardly different bodies with no easy way to explain to someone they like what has happened. It scared Lindsay a bit more, for the opposite reason, because she’d seen me at my worst, when my neurologist had to sit her and my family down and tell them I may never live again without constant assistance.

But then there was the show-stopper of the session: a guy I won’t name who looked for every chance to talk about the lesions he’d had removed from his penis, a kind of skin cancer-plus-STD caused by having sex with a woman with the human papilloma virus. He literally asked all of the women in the room if they had cervical cancer or tested positive for HPV and if so, had they told their sexual partners they had HPV and if would they apologize. He wanted strangers to apologize for another woman’s cancer, which he had in essence “caught”. His backstory was a sad, complicated, and lonely one, but I doubt if even the moderator had ever seen a man blame a woman, in proxy, for his cancer.

Had a PET scan yesterday. Results came back today, and though it was expected–I had surgery and chemo after all–I’m 100% done with cancer. At least in my body. Cancer is done with me but we’re not done with cancer: Lindsay and I will be at the I’m Too Young for This symposium in Boston this Saturday.

Economics are a bitch. Seventy thousand adolescents and young adults are diagnosed with cancer every year, but because more children and older adults get cancer, these latter age groups are the focus of research, treatment, and advice. From the perspective of funders and researchers, it’s justifiable economics. I can’t disagree with the logic. But it also means that over the last twenty years, survival rates for teens and young adults hit with cancer have improved only marginally, if at all. So from the perspective of people like me, seventyk.org’s effort to push an Adolescent and Young Adult Patient Bill of Rights is more than welcome. Thanks, again, to the organizers of I’m Too Young for This! for identifying another great partner.

Before I quote the video and the Bill of Rights, I should list a few things from my experience to offer some context.

My cancer was originally misdiagnosed as unexplained insomnia, thought to be the cause of my memory loss.

Despite having excellent health insurance, I would have been helpless without my fiancee and family at my side—not every young person is so lucky to have such aggressive and capable advocates.

My employer was awesomely supportive as well, but coming back to work from a challenging illness is not something an employer is used to dealing with. It took at least two months back at work before I was good at my job again, everything from how to handle the first day back after chemo to stupid things like remember where the good printing paper is kept. Every young employee needs professional support in learning how to excel at their job after a trauma. My employer offers that, I didn’t take advantage of it, and I wish I had realized earlier how much it would have helped.

And you’ll notice there are several points below that deal with starting a family. Infertility is probably the least known potential side effect of chemo. Hair grows back. You put the weight back on. But if your little duders get wiped out, they’re not coming back. So for any young men reading this, suck it up and make a deposit before treatment starts. I had to do it twice. It wasn’t bad at all. Although I did have to get in the car with my dad afterwards.

So view the clip, read the Bill of Rights, and go to www.seventyk.org to sign your name to the Bill, even if you’re a libertarian.

Adolescent and Young Adult Cancer Bill of Rights

We are neither pediatrics nor geriatrics,
we have unique needs- medically, socially, and economically.

However, the rights and dignity of adolescent and young adults are
equal and vital to all individuals.

We deserve to have our beliefs, privacy,
and personal values respected.

Access to care is a right,
not a privilege.

Our rights, as we perceive them to be and intend to preserve them, are:

1. The right to be taken seriously when seeking medical attention to avoid late diagnosis or misdiagnosis, and entitlement to separate and confidential discussions regarding our own care.
2. The right to affordable health insurance, as well as early detection tests unhindered by insurance or socioeconomic status.
3. The right to be offered fertility preservation as well as current information and research regarding ongoing and potentially lifelong effects of cancer treatment that would affect our fertility.
4. The right to be informed about available clinical trials and given reasonable access to them.
5. The right to untethered access to adolescent and young adult cancer specialists and, when requested, a second opinion regardless of insurance or geographic location.
6. The right to access a social worker or caseworker who is well-versed in adolescent and young adult cancer specifics.
7. The right to “generationally applicable” psychosocial support.
8. The right to have our insurance and position as a student or employee protected by law while dealing with our cancer in order to minimize discrimination.
9. The right to clear explanations regarding the long-term side effects of our disease and its treatment, and to be offered all available and applicable physical reconstruction and rehabilitation options.
10. The right to have all of our treatment options explained to us in full detail, to have our questions answered, and to receive clarification when requested so that we can be an active part of our own care.

Preserve our potential.

So I’ve got some sort of condition where my short-term memory doesn’t function as it should. The doctors say I have a tumor in my thymus gland (in my chest) coupled with/related to paraneoplastic syndrome, which is what affects my memory. I’ve been in the hospital since Monday, July 16th. I’m surrounded by family and curious doctors–there’s nothing all that common about my condition, so there’s a lot to learn by both sides.

I’m surprised I haven’t already started posting to FC about this, since each day I could read it and maybe recall more about what’s going on.

Either Monday or Tuesday, they’re going to take out the tumor, so I’ve got more to do and more to forget in the meantime. I’m told that a byproduct of my immune system’s fighting the tumor is that it’s also attacking the part of my brain set for memory. The theory is that by removing the tumor, my memory will return to normal, but that’s only the supposition—it’s not guaranteed, so only time will tell.