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.
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.
