Archive | September, 2011

The Best Offenses

22 Sep

It was evident last week that I may be unofficially starting a different kind of donor drive – this time for my hair. Redheads and their companions alike came out in droves in response to my last post, offering to grow extra long locks for me to weave into a makeshift wig. In fact, last week after I spoke at a Be The Match Donor Coordinator Conference, a redhead from the audience offered a rainbow of reds options, ranging from her vibrant red to her sister’s auburn and her brother’s strawberry blonde. I may hold auditions.

Lisa's audition for my red hair

Beyond the post-presentation hair offers, speaking to Be The Match donor coordinators who had gathered from around the country yielded so much positive. Talk about a rewarding job. These are the people who, after a doctor identifies potential matches through the Be The Match Registry, call each prospective donor, notify them that they’re a possible match and coordinate additional tests. I know a lot of you are waiting for their call.

But I was surprised to learn that the job isnt always so gratifying. A hefty portion of would-be donors – maybe as high as 4 in 10 – reply that they’re not interested in donating when Be The Match calls. Why? Some people just didn’t think the decision through when they swabbed their cheek and filled out a six-page document to join; others have misconceptions about the procedure, thinking it’s painful or expensive for them; still others say “now is not a good time,” citing a new job, family issues, or no reason at all.

While there are legit reasons a person can’t donate, many explanations are based on misconceptions or perhaps narrow consideration of the impact of their decision. What would have happened had my donor said “maybe next time”? I was lucky to have a backup donor, but what if that donor had not been as perfect? Moreover, what if I was of Pakistani descent, and my chances of finding that one donor were 1 in 20,000?

These statistics put donor coordinators in a tough spot. They don’t – nor should they – pressure a potential donor into anything they’re not comfortable with. At the same time, if a donor cites a misconception as the reason they won’t donate, shouldn’t the coordinator clear things up? Moreover, if a potential donor responds, “I can’t right now – I’m in a wedding next week,” shouldn’t the donor coordinator at least try to put the events in perspective? I think so, and Be The Match increasingly thinks so, too. They’re not subverting to coercion or anything, but they’re shifting towards a policy of “It’s also our job to make sure the would-be donor fully understands their decision.” I think that’s a good move.

Because donor coordinators are just that – people who work with donors – they often don’t hear about the patient experience. I used to jump at opportunities to “share my story” at events like these, eager to chronicle my litany of hardships and make people cry. I actually thought tears were the measure of a successful speech.

So when I was asked again to “share my story” – now a story more than doubled in litany – I instead wanted to laugh, to express emotions not dictated by the usual cancer dramatics. And you know what? It felt good. I think I still mothered a few tears, but you’ve always got a few “I cried at the end of last year’s Glee season”s in the audience (and I mean that with the utmost love, because I think I cried too).  

The whole time  I was thinking, “Is the person who made my calls in this room?” They almost certainly had to be. I had always wanted to meet them. And if you remember, my mom, dad and me really wanted to be them after we found out my brother Jack’s marrow wasn’t “my shit.” When I got impatient waiting for the test kit to arrive for him, I drove to the U, plucked him from class and drove him to Mayo to get the tests moving. When we had to turn over that sovereignty to a stranger Be The Match donor coordinator, we felt defenseless in the fight for my life. After meeting many of these coordinators last week, I can tell you that there are no better people that patients and their families would want on their offense.

I don’t quite know how to transition into this next experience, so I’m just going to say it.

I had another TRL moment on Tuesday. Except this time it was a different acronym’s fault – the GRE. During Christmas break of my freshman year of college, I went – still at a loss for locks – to NYC with a few friends. A live taping of TRL (a music video countdown show on MTV for all you non-millenials) was a must-do in Times Square. We were able to get tickets because there weren’t any big celeb appearances; our episode’s big deal was the premiere of a J.Lo. video that never rose to the acclaim of My Love Don’t Cost A Thing. Before we took our studio places, the producers informed me that hats weren’t permitted and I’d have to bare my bald head. This was the first time I had gone hatless in public – on national TV.

Again, on Tuesday, because of all the area=½bh and slope = mx+b equations I had scratched on my hat, I couldn’t wear it. I went with bare gusto into the 4-hour test, this time on unglamorous closed-circuited TV. I checked – it’s frowned upon to scream and wave TRL-style into the cameras in the corners of the GRE test room. Not even fun.

In other acronym news, I spent five hours at the PITC (Pediatric Infusion and Transfusion Center) yesterday to get my IVIG (immune system in a bottle). After meeting with Julia, we decided not to take my hickman out just yet since I still have not turned a negative copy level on by EBV virus, but thankfully my CMV virus is still on the DL (here’s Urban Dictionary for that one).

And now to spell that out: while we’re still propping up my immune system and bone marrow with helpful infusions, it’s holding its own in kicking some virus booty. I can almost feel my donor throwing the punches.

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Fuzz

14 Sep

I should have known not to title my blog The Redhead Report. Those kinds of declarations always tend to bite me in the butt. My high school friends remember us making fun of the word “tuuuumor” a week before I was diagnosed with osteosarcoma; I teased my dad for his shoddy hearing before my Cisplatin-induced tinnitus left me more in need of a megaphone than he; I immaturely satirized the Red Cross poster in the hallway across from the gym – the one with the little girl saying, “Are You The One Who Saved My Life?” – until I needed dozens of blood transfusions myself.

But my hair, really? I’ve never made fun of my hair. No, I was always defending it from “fire-this” and “ginger-that.” I had to overcome Carrot Top and Lindsay Lohan as my only contemporaries. I’ve earned my redhead badge of honor. This cancer is going to give it to me where it really hurts.

I’ve grown a paltry 2×2 square inch patch of puce-ish fuzz on the left upper quadrant of my head. That’s it – besides leg hair, of course. We’re talking about the need for a seriously creative multi-comb-over here. I won’t even call it hair because it’s clearly not. I suspect if I slept differently, I’d have this fuzz growing on the back of my head too, but any fuzz that falls out just by rubbing on a pillow doesn’t even deserve a hairy appellation.

I’m sure many of you are sending encouragement: “Just give it time – it will grow back!” Well, I have given it time. It’s been four months since chemo. I’ve consulted the pictures, and chemo the first time around only kept my red hair away for a month before it was resurrected. Yes, I realize this round of chemo was more severe, but it’s not looking promising.

You know it’s bad when you ask your doctors if some people’s hair doesn’t grow back and they respond with some version of, “What are you talking about? Your hair is growing back! I see it!”

If this is what I have to look forward to, we have a problem. A freckle face doesn’t go with anything else.

If you care more about my health more than my vanity, you’re in for fairish news. I have some newfangled virus but this time my immune system is trying to kill it to some avail. The virus’ copy levels (measure of how it’s replicating in my blood) are going down routinely, but they’re not zero yet. My doctors are monitoring it closely, sending me on all sorts of merry road trips to Mayo.

Let’s just hope my probably blonde- or brown-haired donor’s immune system isn’t mistaking redheadism for a virus to be rid of too.

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Them’s Fightin’ Words

7 Sep

Now a safe(r) 115 days away from my transplant, I’ve allowed my mind to wander a bit from the protected doldrums of counting down the days until the illusive “all clear.”

When I was in the hospital I wouldn’t listen to music – not even the music Jimmy gave me. I didn’t want to wreck it. I ruined so many songs during my high school hospital days because I came to correlate the beats of Michelle Branch (she was cool, okay?) with my vexing anti-seizure bed pads and the early darkness that was that winter. So many negative associations were made during that time. I even almost hated Steinbeck for a while; East of Eden took me to Rochester, MN instead of Salinas, CA. The 600+ pages seemed to turn as slowly as my progress. Writing became repositioning bad news as semi-positive news, promising people for months that I would valiantly keep up the fight.

I’ve been “fighting” cancer almost as long as the first bombs dropped in Shock and Awe. Like the real wars of my generation, our individual battles against cancer are increasingly chronic, less acute. We’re less likely to sign a treaty and say our osteosarcoma is cured because we live longer, giving rise to cancer treatment-related MDS rebels.

Often when I write about cancer I use the combative language that is cancer. You know – the cancer jargon that is heroic if you’re on the winning side (“that girl’s a real fighter”), victimizing if you’re on the losing side (“after a fierce fight she lost her battle with cancer”). There’s been a lot of talk about it in the news lately. Some cancer patients and authors have criticized this lingo because it connotes winners and losers. Those who “beat” cancer are immortalized as war heroes, people about whom those of us at home say “I don’t know how she does it” as they hear stories of valor and fighting to the end.

Like soldiers coming home from war, some cancer survivors come home and tell their magnificent war stories. For some, the goal is to top the stories of their compatriots. “I underwent 40 regimens of the most brutal radiation they could muster, but I didn’t end up in the hospital like most other people.” Others like to astound those unfamiliar with cancer – they’re easier to impress.

Those who “lost their battle” are casualties in the war on cancer, immortalized, sure, but often not celebrated like a cancer survivor. No pink tiara to lead laps with. They may deserve a purple heart, but they don’t get a beating one.

Susan Sontag, a cultural critic who actually died of MDS, also her third cancer, (read her son’s account of her real “fight” in NY Times Magazine) famously argued, “As long as a particular disease is treated as an evil, invincible predator, not just a disease, most people with cancer will indeed be demoralized by learning what disease they have.” (Sontag, Illness As Metaphor, 1978)

But I often use them fightin’ words when I write about cancer not because I mean to make it sound dreadful, but simply because I’m at a loss for other words. To me, the offensive a patient wages against cancer is inseparable from the vocabulary itself. I checked my worn thesaurus, and there aren’t many verbs that seem like suitable replacements for “fighting” cancer. To say “I’m being treated for cancer” or “I’m suffering from cancer” feels passive; to say “I’m dealing with cancer” makes it sound like a bad headache. Nor are there nouns that assume the duality of the individual and universal “fight against cancer.”

But as was recently pointed out by Daniel Menaker in a New York Times op-ed, it may be more productive to think of cancer as a problem, not an enemy.  I think this is a good way to approach it. Doing so takes some of the burden out of cancer, removing the pressure to be a courageous soldier who will carry on no matter the situation in the trenches. Instead of these warlike words that forsake humanness for “bravery” no matter the cost, we remember that quality of life matters a lot. In fact, I think some of the best cancer “problem solvers” have been those “fallen heroes” who chose quality of life over expensive, unsure, invasive treatment. Going out with a fight isn’t typically the most peaceful.

So as Menaker suggests, perhaps the different languages of fighting/dealing with/being treated for/looking for the bright side in cancer each have their place. At times we must be rational problem solvers, and at other times we need the “take no prisoners” passionate talk to boost morale.

As Dana Jennings said about his prostate cancer, it’s hard to articulate how being seriously ill feels. Sometimes words are just inadequate. So we make do.

Oh yes, my health…

My blood counts are back on the upswing. They’re not where a normal 114-Day girl should be because I had that plunge around Day 60, but they’re good for me where I am. I’m hoping that my hemoglobin goes up so I can sleep away only 14 hours of my day instead of 15. The biggest news is that if I can stay out of trouble in the next few weeks, they’ll schedule surgery to remove my hickman (or my hickey, as my Aunt Ann fondly calls it). That will lengthen my leash quite a bit.

I’m taking the GRE in two weeks because it’s half off if you take it before September 30. The frugal me said, Why not? I’ve started studying and am angry at my 10th grade-self who deliberately forgot the Pythagorean Theorem after my geometry final. Mr. Mertz, I’m sorry to admit it, but I forgot those equations when I left high school, and I’ll forget them again. (Except maybe FOIL. That one stuck.) So I’ve decided that if I do badly, I’ll blame it on chemobrain. If I do well, I’ll attribute it to genius DESPITE chemobrain.

I’ve also become quite the saleswoman. We’re trying to sell my brother’s old car, and what better venue than KNUJ Radio’s Tradio? If you’re unfamiliar, New Ulm-area KNUJ loyalists call in religiously every Saturday morning with select prized possessions for sale or gems they’re in search of. I think my sales pitch followed the lady who “would take three dollars” for her plastic Easter Lilly and right before the guy looking to buy mannequin heads. Then they cut out for a report live from the farmer’s market in the Runnings Fleet & Farm parking lot. “We’ve got potatoes, tomatoes, onions and fresh-baked apfelkuchens.” That’s one word we all know around here.

I "surprised" Jimmy by visiting for his birthday. His surprise birthday party somehow turned into a Day 100 party (notice the balloon ratio). Thanks, Margeaux and Kyle, for hosting!

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