Myxoinflammatory Fibroblastic Sarcoma

I was hauling boxes on June 1, 2015, when I noticed that the back of my right hand was sensitive as it would brush against door jams, van walls or packing material. Inspection that night revealed a small white dot near my knuckle. Spending most of my days typing, I know the back of my hand like the back of my hand. This was new, but not concerning.

A few days later and that dot was a bump. A wart, I decided, in my confident inexperience with anything related. I purchased one of those over-the-counter wart-burning ointments, with the instructions telling me to apply twice-per-day for up to nine weeks. In sadist-like adherence, I applied the scalding acid while watching my wart get bigger each day, seemingly feeding off the pain.

By the time San Diego Comic-Con rolled around in July, the bump was the diameter of a dime and the height of a smartphone. There was a gory split in the middle and I wore a Band-Aid® (the actual brand, not conflating the generic term) at all times to avoid scaring children. The acid was making a monster.

Upon returning home, I decided that medical attention was weeks past due… enough time gap to appease the part of my ego that refuses to seek help. After a few hours of waiting room sniffle-chorus, in what would prove to be the start of a theme, the on-shift doctor squinted at my hand in disgust. She couldn’t tell what was happening, but declared it infected. “Stop it!” was her advice, sending me home with a round of antibiotics.

It was during the antibiotics week that the pain started. The spectrum ranged from a dull throb in my hand to brain-overwhelming searing pulses. Like the xenomorphs who hunted Newt, the worst mostly came out at night… mostly.

Several clinic-level visits later, most involving a crowd of openly-baffled “you have to see this” doctors, it was determined that “let’s cut it out” was the sophisticated course of action. Perhaps the topic of a future post will be the get-what-you-pay-for aspects of free Canadian health care, which manifested early with scheduling my surgery-necessary scans two weeks after my scheduled surgery. American-learned persistence got me through.

My plastic surgery was on August 28. After seeing many more serious cases come through during my wait, I decided to try to keep it light for the medical team. With only local freezing, I watched whole procedure. The doctor carefully snipped out a ping-pong-ball sized white mass that had brain-like folds and appearance. He avoided tendons and veins. With the mass removed and the inner workings of my hand exposed, I amused the assisting resident by flexing and unflexing like the Terminator with his arm-flesh removed. Everyone was jovial. There wasn’t quite enough skin left to close the wound, but the skilled doctor made it work somehow. I was to come back in two weeks to have the metal stitches removed.

Two weeks passed.

I was ready to be done this final step into a life with my two-inch (5 cm) scar. But the previously-laughing surgeon walked into the op room a very different man. His steady hands were shaking as he tried to snip the stitches. His voice cracked as he told me that the biopsy came back as a “rare and aggressive cancer”. He did nothing for my confidence as he avoided answering any follow-up questions. Cancer was not in this plastic surgeon’s expertise and he was more afraid of mis-speaking than providing answers. He wouldn’t even name it for me. I don’t remember the drive home, but I remember my single thought opening my front door. “I have cancer.” (The words “rare” and “aggressive” naturally took up shop in my brain.)

The two-week wait for my cancer center consult was excruciating mental torture. Schrödinger’s cancer. Though I had seen it with my own eyes.

Alone in a room with a team of overly-fascinated cancer specialists, I finally got the name of my enemy — Myxoinflammatory Fibroblastic Sarcoma. It is serious, but as long as it stays in my extremities, common treatments are effective in curing this rare disease. It’s only a problem if it recurs or spreads. (Of course, it has since spread, but is avoiding critical systems.)

Yadda yadda a month of near-daily scans, tests, checks, optimistic news, horror stories and display as a medical curiousity.

Tomorrow I begin 72-straight-hours of chemotherapy. After that will be ten days of localized radiation. The purpose of this is to knock down my cancer before surgery. There isn’t much left in my hand to cut, so this strategy is to save as much as they can and keep me typing into my 90’s.

I will lose my hair. That much everyone agrees upon.

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(Peer-reviewed studies show that patients who are aware that they are being prayed for are the group least likely to have a positive outcome. If you feel compelled to pray, please don’t jeopardize me by letting me know.)

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4 thoughts on “Myxoinflammatory Fibroblastic Sarcoma

  1. So glad that you have decided to share your experience, Bro. None of us have had to walk the path that you are on, so we’ll learn from your story.

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  2. Wow- you have been on quite the journey already. I don’t know what to say other than stay strong, positive, humerus and reflective as you battle the physical cancer, as well as all of the non-physical cancers (you referenced above); that are all too real and can have just as much impact. You have always had a great mind with great insight, and terrible as this is, you have also been given the gift of time to let that allow the mind ponder things that our world otherwise distracts us from. You are an amazing person with diverse intelligence, and strong spirit. Get well soon, and know many are thinking of you as you walk forward each day.

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  3. Hi Paul. Thank you for sharing your story and we will certainly be thinking about you every day. This is an arduous trek you have been and will be on and it is good that you have invited others to walk with you. We are here for you and can help you with driving to appointments, visits, meals or whatever we can do to journey with you. Medical miracles happen every day so let the professionals quide you and the treatments do their work. When it’s rough, let others be there with their strength and you will come through to a place of renewal! Love always, Linda and Rob

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