Tuesday, December 18, 2012

Mutant Genes

Despite the extra glass of wine from the night before, I was halfway finished and feeling pretty good.  It’s remarkable what happens to your thoughts when you’re on a long run.  I’m sure everyone’s mind wanders, but for me, after an hour or so, it’s like meditation or a waking dream. I forget I’m running, and rehearse speeches I’ll never make, compose letters I’ll never write, sing songs without music, thank my heroes for being so courageous, say things to my family and friends I’ll never ever speak of, and believe in things that are unbelievable. Yes, I run for my health and the hope of longevity, but I run to feel me. 

At mile 12, I stopped and found the water bottle left for me.  As a walked briskly, I struggled to eat an energy chewable, use my inhaler, and drink my Gatorade without choking.  Back into my run and with only 6 miles to go, I felt good, but there had been ominous sounds in the distance for miles.  I live in Maine, and this was October, so there’s usually gunfire.  The deer have no chance, unless the hunters are drunk and shot themselves or each other, which does happen on occasion.  The gunfire in Maine is nothing like the battles between gangs in Savannah or outside DC, or the random acts of violence that occurs in urban areas, but the sounds are startling nonetheless. It’s Sunday, don’t they know there’s no huntin’ allowed? 

Soon I was running alongside the gunfire.  Just as expected, there was a group of guys in a field a hundred yards away, shooting stuff.  Of course my mind raced to all the horrible things that could happen, but shouldn’t, and pick up the pace anyway, leaving the unnerving sounds in the background.  The end of the run couldn’t come soon enough.  I really don’t remember the last few miles, which is normal for me. Sometimes, I get loopy or dizzy, and because of the prior night’s activities, it’s entirely possible I crashed mentally. I finished with a flourish, as I usually do, then kept walking for a few minutes.  My time was as predicted, yet the pace was a bit fast.  I blame the gunfire.  I felt good though, and really alive after just running 18 miles.  

My sore feet need attention, so I soaked them in a cold bath of ice water for 15-20 minutes.  While my feet were tired, my ankle was tender as well, and that was strange. After a large snack, I lied down on my couch and took a nap for an hour or so.  Later that evening, with my foot elevated and my ankle wrapped in ice, I knew something was wrong.  After years of running, this injury felt different.  It wasn’t shin splints, probably not a sprained ankle, maybe it was a stress fracture, that seemed plausible, and my symptoms were similar.  There was nothing I could do about it tonight, except keep icing it, take Advil, and drink Vodka.  To make matters worse, the Patriots were getting beat by the Seahawks.   

Usually, on nights after a long run, I sleep like a baby on Benadryl, but not tonight.  Every 30 minutes or so, I woke from the discomfort.  I think from shear exhaustion, I feel asleep around 4am.  The next day, I took it easy.  I hadn’t volunteered to work so tried to stay off my feet and continued the usual regiment of rest, ice, compression, and elevation.  I became worried as this continued for several days and my symptoms were not showing signs of improvement.  It was time to call my doctor.   

After describing in detail how I felt to the nurse practitioner, she thought it might be a stress fracture as well and sent me for x-rays that day.  The results were inconclusive, so she ordered a bone scan.  While it sounded cool, its very expensive and the test take all day, involving injecting radioactive isotopes and allowing them to flow through my body and taking images. Those results too, were inconclusive.  I was then sent to see an orthopedic specialist.  Ten days had passed, and finally some answers.  The intern at the clinic was young and very thorough. He ruled out any bone, tendon, and ligament damage.  What’s left I thought.  It's a blood clot. 

After conferring with the head doctor at the Clinic, I think his name was Dr. Dreamy, he confirmed it was indeed a blood clot, but it was superficial and not a dangerous deep vein thrombosis.  An ultra sound was used to verify the extent of the blockage in my leg and ankle.  The treatment was simple, no blood thinners, and just warm compresses with Advil, and no marathon.  While the news of not running the New York Marathon was heartbreaking, I could handle it, but somehow I knew this wasn’t the end of the story. 
Getting a blood clot wasn’t a surprise.  I had been warned of the potential risks involved with taking estrogen, and I was more than willing to take my chances.  Upon hearing the news, my endocrinologist asked me to stop taking estrogen until further consultation.  Not the words a transwoman wants to hear.  Being on estrogen for the previous 16 months had changed my life, and I was afraid of loosing what I had gained.  After a meeting with the endocrinologist and his intern, I was scheduled for more complete blood tests and an appraisal from a hematologist.  The battery of blood test was extensive, at least 12 vials of blood were drawn and I would be contacted in a few weeks with the results.   

I couldn’t stay off estrogen that long, so I decided to slowly go back on hormones.  I know I was being arrogant, greedy, and stupid, for doing so, but I didn’t want to feel like I did before, not one bit.  In the meantime I met with my primary care physician and he gave me the green light to return to running.  It had been over a month since the injury, and I was excited to lace up my new shoes and return to training.  I wondered if I had the time to fit in another big race this winter. I had practically forgot about the blood tests; that was until I received a packet in the mail from Maine Center for Cancer Medicine.

My heart stopped.  No way, there has to be an explanation.  I opened the envelope and read everything inside and tried to relax.   The facility, while primarily a cancer center, does house other doctors.  That had to be it, I convinced myself.  I filled out the paperwork and readied myself for the appointment scheduled for tomorrow.  At the medical center the next day, I waited in the exam room and struggled to feel comfortable.  I’ve been in and out of hospitals and doctor’s offices since I was a child, and usually feel at ease, but today was different.  I also could overhear an intense private family conversation in the adjacent room. It was unsettling and I felt like I was in the room with them.  Finally a knock, and a young man entered, another intern; imagine that.     

He cautiously asked about my injury, and I tried my best to help him feel at ease.  I know that may sound like the opposite of what is expected, but I’ve learned that many people in Maine don’t have a great deal of experience with diversity, especially with transgender people.  I think I made him smile.  He reviewed my blood tests with me, and while most of the results seemed fine, there was one test that revealed I have a gene mutation called Factor V Leiden, not cancer. 

We talked about the clotting factors involved with Factor V, especially the heighten risks while on estrogen.  He was a little surprised I was still taking hormones.  With no more questions, he left and sent in the doctor.  Minutes later I met my hematologist.  She looked a different than the picture in the brochure, but still recognizable.  We reviewed the results of the blood tests and clotting risks associated with my mutation, and also the continued use of estrogen.  In most cases, she would have patients stop birth control or other estrogen treatment because of the potential dangers, but I think she knew that wasn’t going to work for me, and didn’t bother to ask.  She also brought to my attention that there may be potential complications during any future surgical procedures.  Like what, I asked.  Graciously, without being specific, any surgery, and that I might want to inform my family so they can get tested too.  I don’t think I grasped the scope of what she meant at that moment.  I didn’t have cancer.   

After some small talk about running marathons, she was off to her next patient.  In the walk back to my car, I felt the cold wind in my bones and shivered, then zipped up my winter coat.  I had no plans for the afternoon, so I went to have warm cup of coffee.  With my computer and Wi-Fi access, I did some research into Factor V and what it might mean for me.  After the initial searches, I was curious and typed in transgender and Factor V and read more.  I realized what the doctor was trying to tell me.  I packed up my things and returned to my car.  It was depressingly dark already and it wasn’t even 4pm yet.  Slowly the car’s interior warmed and I joined in with commuters leaving Portland for the day. As I crossed the bridge over the Fore River, Reap the Wild Wind by Ultravox played on the radio.  The road became blurry and I could barely see the other cars or the water below.  I didn’t have cancer, and flood of tears should have been tears of joy, but they weren’t. I was overcome with grief.  What if, after all the years of waiting, and finally finding the strength to be myself, this was the end?