Atypical

One in a million. A one off. An aberration. Rare. Atypical. Weird.

Since my diagnosis with synovial sarcoma of the left axilla (aka super rare armpit cancer), all of these descriptors have been used to describe me.

At the start of my treatment, one of my trusted doctor friends told me being so singular was a good thing: countless doctors discussed my case, which was made all the more complicated since I am left handed (10 percent of the population) and the offending mass was wrapped around some pretty significant left side nerves, veins, and arteries. What were the odds?

The many brilliant clinicians did the absolute best they could. They plotted my radiation treatment then replotted it when they realized the original plan would cause too much damage to my lungs. They planned my surgery, then changed course once I was on the table, hoping to preserve more of the functionality of my arm.

Using techniques similar to (but also very different from) what they would use during a mastectomy, I essentially got an armpit-ectomy. They carved out muscle and removed nerves, harvested lymph nodes, detached my lat muscle and reattached it under my arm and to my chest. They sewed me up with a thick swath of my own skin. I broke ground.

And then they sent me off. Six months later, I was diagnosed with lymphedema, which my radiation oncologist missed and dismissed as too rare a complication (10-30% chance) but my surgeon said with radiation, radical surgery, and missing nodes was almost to be expected. Unfortunate, but not rare.

For a moment it felt good knowing that there were other people who had gone through this. There were known strategies to help.

Then my breathing became affected. It started to feel like I was drowning and my sternum was being crushed, so they sent me to a pulmonologist. Oncology didn’t know what to do with me.

My lovely pulmonologist ran tests and tried every steroid, antibiotic, and inhaler in his arsenal. None of them helped and he admitted to not knowing what else to do. He had little experience with cancer patients and no experience with lymphedema. He sent me back to my oncologist.

My oncologist admitted to not knowing much about lymphedema or pulmonary complications, but he sent me to a physical therapist.

The physical therapist gave me MLD (manual lymph drainage) techniques, had me fitted for a wardrobe full of compression garments, and recommended that I look into programs designed for breast cancer patients. Which I look like. Sort of. A little.

For two years, I have been reminded by lymphedema nearly every day that cancer is the gift that keeps on giving. Some days are easier than others. On some days I feel relatively normal. I get tired more readily, my immune system sucks, and I have to take precautions against even little cuts or scrapes to my left hand or arm, but it’s okay.

And then there are the days that just aren’t okay. These are the days where I can breathe. Where my chest hurts so badly that I can’t stand up straight. When I’m so full of fluid that I weigh 10 extra pounds. When my immune system simply can’t keep up.

These are the days that sent me back to MSKCC, back to someone who knows the lymphatic system and is pioneering surgery to transplant healthy nodes to replace those that were removed. The hope of normalcy through surgery.

Dr. Mherara was funny, kind, and baffled.

“Synovial sarcoma of the left axilla is pretty rare. It’s actually pretty weird,” he laughed. But lymphedema wasn’t a surprise.

My left arm may have Stage 2 lymphedema, but it is healthy and not very swollen day to day. My left breast, which often bears the brunt of my visible swelling is “perfect” (Why thank you, doctor.).

I explained to him that my symptoms, while never silent, get ugly during the ramp up to my menstrual cycle.

“We know that there is a link between lymphedema and hormones,” he said, “but we don’t know what link is yet.”

“Could you get on that please?” He is the kind of doctor you can say that to.

“It’s part of the grant,” he smiled. “But the chest pressure, the phlegm-like fluid, the difficulty breathing... that’s atypical.”

He could run some tests, but they would come back inconclusive abnormal. And since I don’t look like his normal surgical patients, they wouldn’t give us information that would lead to a solution.

He asked about pulmonary function tests (low normal) and inhalers (tried them all) and quality time with doctors who do lungs and heart and symptoms that look and feel a lot like congestive heart failure.

I asked him if he knew any pulmonary oncologists. He did, he said, but none that would be familiar with a case like mine. Because I don’t have lung cancer. Because I’m atypical.

By his best guess, I have radiation complications. Maybe pulmonary fibrosis or pneumonitis. Or maybe it’s some kind of lymphedema that only one in a million people with lymphedema have, and because of that, there is no protocol.

My occasional torturer (or rather, the OT that made sure my my arm worked again) calls me a singular miracle. My one in a million cancer, lodged in a place where even people with weird cancers don’t get cancer, was found before it could kill me, which is rare. My mobility recovery is singular. My being here is a miracle.

However nice being a miracle is, this is one of those days where being an outlier, an atypical aberration, a person for whom there are no clear answers, does not feel so miraculous. I don’t want to be atypical. I would, for once, like a nice, clear, “normal” path with some bold print answers.

But that’s clearly not how this game works for me.

So here is to more digging, more research, more questions. And hopefully, someday, a new normal that feels less new and more normal.

Seasons of Love, or, Harmony Admist MRI Dissonance

“Hey, Broadway!” My favorite MRI tech knows me not by name, but by the Pandora station I choose to listen to while I’m stuck in a tube. My guess is not many people choose to rock out to Broadway show-stoppers during their body scan. Leave it to me to be the odd ball.

My sensory journey to Cancer Camp today was a strange one: 90 minutes shrouded almost entirely in dense autumn fog. For the majority of the drive, I had no companions on the road. Or if I did, they were just far enough ahead or behind me that I couldn’t make out their lights for the pea-soup thickness surrounding me. There would be no marveling at the landscape of Vermont changing from green to gold, no looking out over glistening lakes and rolling hills during the early September morning. It was literally freezing when I left Whitefield, so I turned on my blessed heated seats and allowed myself to be snuggled in warmth, as if I were still in bed. I left the music off, and after learning enough about Aleppo on NPR to make me thoroughly depressed, I silenced the radio, too. It was as if I was supposed to have the drive to contemplate this adventure in as distraction-free a way as possible. A time for my brain’s own music.

Once you enter Cancer Camp, the scan-land version, it is impossible to find silence. The  waiting areas ring out with the rote questions from intake, patients’ names being called across the large room, quiet couples talking, and lots of coughing. CT scans robotically remind you when to breathe and you’re asked your date of birth a dozen times. But MRIs, with their cacophony, are the most disruptive to zen. That’s why they offer you music to listen to while you’re trapped inside the scan.

In order to really get the music loud enough to be heard over the whir and buzz of giant magnets, I’m sure the volume would have to be cranked to a level that is not advisable or permissible in the healthcare world. So after they get you appropriately strapped in, covered up, and stuck with needles, they put headphones on you, with the volume just loud enough to give you the essence of sound. It’s best to pick music you’re pretty familiar with because you’re going to have to fill in a lot of the gaps. That’s why I pick Broadway.

In the quiet space before the scanning actually began, I got to listen to the entirety of “Seasons of Love,” from RENT. It’s a personal favorite of mine, a hopeful song, one that I love singing along to when I’m not stuck in a tube, although it inevitably makes me think of mortality, AIDS, lost friends, and also being 16. Somehow it worked as the foundation to accompany the day.

Many of the other songs were lost under the din of the machine. I caught bits and pieces from Frozen, Grease, Les Mis (always Les Mis), most of Bebe Neuwirth (I love her) and “All That Jazz.” But eventually I had to close my eyes and stop trying to reconcile the musical subtext with the avant garde time signatures of the machine. One scan maddenly staccatoed out a pattern of 14 eighth notes and an eighth note rest which did not at all go with whatever was trying valiantly to be heard beneath it. The magnets buzzed loudly, inserting percussive sounds like dot matrix printers and buzz saws in the keys of Maybe and Probably at the same time, clashing terribly with bright Broadway melodies. The machine created discord, the rhythms didn’t match up, and my inner musical ear started to scream STOP!

Sometimes there is no making sense of this journey, or at least parts of it. The words don’t match the music which doesn’t match the key signature which doesn’t match the time signatures. I hate chaos like I hate bad jazz. It all sounds wrong. But at the end of the day, when you feel like you might explode if you don’t cough and that last cc of fluid they pushed through that IV is going to make you burst, “Hallelujah” manages to make itself heard under the drone, and the key is somehow just about right. I have no idea if it’s from a Broadway show or how it made its way onto the Pandora playlist, but it’s a beautiful song regardless. In this season of love and this time of hope, when some things don’t make sense, close is close enough.