Hemangioendothelioma is a dry, unpronounceable word you will forget before you are done reading this. The thing it describes is living in my back, a knotted collection of blood vessels feeding off the blood supply that runs along my ribs, an organ serving no function, except to swell slowly and push my real tissue away. Is it part of me, this lump I discovered protruding from my back 3 years ago? Growing larger so slowly that the change is nearly impossible to see with the bare eye, that it could has been growing for over 10 years?
When I had my biopsy on Tuesday the 16th of January, they promised me a result in around 24 hours. The biopsy itself wasn't that much of a big deal, it was essentially a redo of the first CT scan with the discomfort of having a needle showed into the lump. That discomfort might have been mitigated by the fantastic combination of Versed and Fentanyl that led me to happily tell the nurse that "I love pharmaceuticals". Afterwards the lump felt a bit more sore than usual, though it is hard to say because the ache has increased gradually over time around it. When I frantically gave up waiting for the doctor's call at 1600 the next day and called him, I was told no results had arrived yet and that the doctor was busy operating. Thursday slowly crept over me. As the phone remained silent, my anxiety increased. In an afternoon appointment with my therapist I excused myself and asked if I could keep the phone on, because I was waiting for the result of the biopsy. This result would tell me if it is malignant or benign. My therapist, DE, was very understanding. She smiled, and said she had hardly heard a better reason for keeping a cellphone on.
It was Dr JS, with good news and bad. I was nervous and wanted to hear something that would answer the question, but instead he could only give me ambiguity. The good news was that they hadn't found any clear sign of malignancy, the bad news was that it didn't really look benign. It turns out that the distinction of malignant versus benign wasn't as clear as I thought. Soft tissue tumours have a sliding scale of how cancerous they can be.
Pathology had no idea what it was. This was advanced medicine in one of the better hospitals in a nation of good hospitals, and I had something they couldn't identify. At least I had lost my bet about it being an alveolar soft part sarcoma to Quinn. The bet came up after my research had led me into angiosarcomas, which are tumours made out of blood vessels, and then on to a tumour that was described as following,
"Most ASPS cases occur in patients during their second and third decade of life with a slight female predilection. Most commonly, it involves the muscles and deep soft tissue of the pelvis and the extremities. ASPS is a slow growing tumor and is highly vascular (rich in blood vessels). ASPS tumor may exist for a long time before being diagnosed. It can grow large and push aside surrounding tissues long before causing discomfort. Therefore ASPS symptoms may either be a painless swelling or a soreness caused by compressed nerves or muscles affecting the range of motion in the affected area. "
Considering that it had been growing a long time, it looked highly vascular on the CT scan and I am in my third decade of my life, the only thing that didn't really match up was the location.
So it didn't look like either an hemangiosarcoma or an hemangioma, both are tumours of the cells that line the blood vessels, with the sarcoma being malignant version of the hemangioma. However, on Tuesday Pathology would know more.
I crashed, deep into an emotional space I was unfamiliar with, full of panic and anxiety. DE tried to talk to me, but my body was in shock, I couldn't really focus on what she was saying. A feeling of fear paralyzed my entire being, like time around me was moving so fast that anything I did wasn't registering.
After the therapist appointment DL drove me home. I changed into a suit and went with Quinn and the Simon Brothers to the French Laundry. This was a booking made just before christmas for their first opening after the holidays, to celebrate Simon's birthday. This was my gift, dinner at this fabulous restaurant, one of the holy sites of the religion of gastronomy. It was a day late, but they only opened on the 18th. During the drive up I couldn't stop thinking about the tumour-- this unnatural thing that was transforming my body, feeding off my own blood supply. My back ached.
I had a mostly fantastic time, the food was great and so was the company. But at the back of my mind I couldn't really forget about the uninvited guest, except for brief periods of time when some of the finest dishes of my life where served. They where delicious in ways I did not think these basic ingredients could be, turnips and parsnips transformed into small explosions of flavour.
On the ride back the lump started hurting more, sharp jolts of pains every couple of minutes. I wasn't sure why, but the fear of bleeding to death made go to sleep that night without the trusty use of Lunesta, worried that I wouldn't wake up if it got worse.
As morning rolled around, I called for an emergency visit to Dr PG to get a prescription of Ativan. I've avoided benzo derivative drugs my entire life because of the addiction risk with them, but the anxiety keeping my body in a state of shock demanded something, and that turned out to be Ativan. My pulse and blood pressure were above normal. My experiment to use Lunesta to overcome the anxiety of the tumour had failed; the uncertainty of waiting until Tuesday, this failure of medical authority, was too much.
My current total drug count: Lexapro, Reboxetine, Provigil, Lunesta, Clarinex, Ativan. Every week it seems like I get closer to being replaced by my pharmaceuticals. I have to give it to Ativan though, it worked. I calmed down. I kept myself on Ativan, mostly 0.5-1.5mg a day until Tuesday. That was the big day, when CPMC would tell me what it was, when they would answer.
Sometime during the afternoon Dr JS called. It wasn't malignant. "Almost certainly benign," he said. They couldn't say it wasn't malignant somewhere else-- it was a big tumour and they'd taken a small needleful of it. He explained Pathology thought it was something called an hemangioendothelioma, which seems to be the medical term for not quite an hemangiosarcoma or an hemangioma. The suggested action would be to remove it as quickly as possibly and he referred me to an expert in thoracic surgery, Dr PA.