Treasure what you have and who you spend your time with.
An old friend of mine from high school. “Ride In a Good Direction”
Hello. My name is Bret Hoefen and I’m 32 years old. In the picture above with me is my amazing wife Shannon. Until recently, my life has been mostly occupied by my work and school. I am a Senior Reactor Operator at R. E. Ginna Nuclear Power Plant in Ontario, NY. I’ve been going to school part-time at the Univesity of Rochester’s Simon School of Business to get my Masters in Business Administration.
My life took a very sudden and drastic turn this past June 2010 when I was diagnosed with Clear Cell Sarcoma. I’ve since learned that this is an extremely rare cancer that carries odds somewhere along the lines of winning the lottery. How the hell did I get this?
It all started for me a few years ago when I was playing kickball barefoot at a friends house. Kicking the ball barefoot made my foot a little sore, but it was the kind of pain that goes away quickly. Not this time; when I woke up the next morning my foot was swollen and I had this intense pain that made it difficult to walk. When the swelling finally went down a few days later, I still had a small bump on my right ankle.
My brother Ryan and his wife Makiko, both physicians, recommended that I see a doctor. I’ve always had excellent health and never needed to see a doctor for anything other than the rare but routine check-up. I reluctantly made an appointment, where I was told that I had a ganglion cyst. I was informed that ganglion cysts sometimes go away on their own, so I should just leave it alone, and if it became a problem I could have it removed. It did become a problem for me. Whenever I partook in a physical activity like snowboarding, it would get aggravated and become swollen and painful just like it had after playing kickball.
I decided that it was time to have the ganglion cyst removed. It is never easy to plan a surgery into your busy life, especially when it will keep you laid up for several weeks. However, no rush, it’s just an inconvenient ganglion cyst. I finally found the time in June of 2010 when I decided I would do it following a training seminar. In the middle of the training I went home to get an MRI prior to surgery. On the following Monday, during the second week of training I received an urgent phone call from my doctor notifying me that there was concern that the bump on my ankle may be cancerous. That same day I immediately went back to the clinic for a needle biopsy.
The following Wednesday, I received the phone call that changed my life in a way that is incomprehensible until you’re in that position. I was in the middle of a class when my phone started to vibrate. I let it go to message so I could check it on the next break. Then, it began to vibrate several more times. Without even listening to the messages, I knew the news was not good! When I finally had a moment on break, I returned my doctors call and he notified me that I had cancer: Clear Cell Sarcoma. Although rattled, I first shrugged it off assuming that cancer is very treatable these days. My concerns were with how disfigured my ankle would be after surgery. It was not until my doctor explained that my concern should not be with the appearance of my ankle, BUT LIVING, that I received the chilling shock that is imprinted in my mind.
Clear Cell Sarcoma is a particularly malignant cancer that is not very treatable. It is very resistant to radiation, and there is currently no effective chemotherapy. The best method of treatment is surgery, and you just have to hope that it has not metastasized. I had my surgery at the end of June. The large tumor in my ankle was removed along with a couple of lymph nodes in my groin that also tested positive on a PET scan. The surgery was intense; the tumor was so massive at this point that the area had to be filled back in with muscle tissue obtained by removing one of my abdominal muscles. Then, skin was shaved from my left thigh to graft over the muscle flap. (For the squeamish, sorry the pictures are so graphic!)
It took about 90 days before I could walk again without crutches. However, I slowly and optimistically recovered. Although, while recovering, it was soon time for another PET scan. These scans make for the most stressful and emotionally draining days you could ever imagine. The most intense part is after doing the scans, and waiting for the doctor and radiologist’s reports; it’s my “crystal ball.” This time the news was some good/some bad. The cancer still had not spread to my abdominal organs, but another tumor was found in my thigh. I then had a second surgery to remove the new tumor. This time the tumor was small enough the the surgery was an easy outpatient resection. My fear of surgery and needles is nothing compared to what it used to be. I can relate to Michael Jackson, I look forward to the anesthesia.
Along with the surgery I also received radiation. My understanding is that although not completely effective at eliminating Clear Cell Sarcoma, it does help to eliminate the undetectable cells spread around the area of the tumor. I received the maximum dose of exposure, 50 Gray, to my entire right leg in three rounds (ankle, calf, thigh) of five weeks. The individual radiation treatments are painless; very similar to getting an X-ray, except that it last about 15 minutes. However, it starts to have incremental effects through the course of treatment. After three weeks, my hair in the area of exposure started falling out. After four weeks, my skin turned red and in some areas broke down. My foot was the worst. I had severe blistering around my ankle that left the skin on my foot looking like a sock. However, this healed over time.
Well that long winded explanation more less takes me up to now. It is the Thanksgiving weekend of 2010. This past Wednesday I had another PET scan and it resulted in the news that I have been fearing, but expecting; the cancer has once again metastasized. This time there are numerous small tumors all throughout my right leg. Although not visible on my scans, they also suspect that the cancer has spread to my abdominal organs. My known effective treatment options have run out. Even though I’ve set myself up for this news, it’s an emotional blow!
I’ve been told that I have roughly two months before the tumors begin to block the lypmphatic system in my leg to the point that it swells and the pain is too much to walk. Ultimately the tumors will affect my organs in such a way that this will be fatal. I am already seeing some swelling and experiencing tolerable, but uncomfortable pain. Although maybe just paranoia, I also feel my body responding in ways that don’t feel normal. I have given my employer notification that I am no longer in a condition to work, and I am going on disability full time.
The way I see it, I have two choices: (1) fight this cancer to the end; explore every new drug on trial; seek out and try every known method of alternative healing; or (2) accept my condition; focus my remaining time on family and friends; do my best to line things up for my wife, who I love so much, for the time when I’m no longer around.
Some might disagree with my decision, or think that a combination of the two are possible, but I’ve chosen to focus on the second option. Shannon and I have had a dream of buying a Volvo Cross Country and taking a long trip across the US with no specific plans or agenda other than to do what sounds good that morning. Life is too busy and this has been put on the back burner of our lives. Now’s the time and Shannon, myself, and my parents are making this happen. Because it is less than the ideal time of year to travel our only plan is to head south, and our motorcycles are coming, and visit as many people along the way as we can until my leg becomes too painful to continue. Through this blog I plan to document our adventure. I don’t want this to be sappy and depressing, but I do want everyone to know how much they mean to me. I’ll do my best to keep it upbeat.
Cliffs: June 2010 diagnosed with Clear Cell Sarcoma that carries odds somewhere along the lines of winning the lottery. Two months before the tumors begin to block the lypmphatic system in his leg to the point that it swells and the pain is too much to walk. Ultimately the tumors will affect his organs in such a way that this will be fatal. Decides to stop treatment and live life to the fullest on a road trip with his family.
Pictures in the link
Please take the time to read the rest.
Edit: Link to the blog posts at each stop.