After leaving the hand surgeon's office I drove home and called my wife and mom to tell them what I just heard. I was in complete shock. When I got home my wife and I began looking up my cancer.
Google is a cruel mistress. The results were terrifying. My cancer is an exceedingly rare and aggressive cancer. There are only a few hundred cases globally documented of my cancer. Testimonials we found were from people who had it spread to their lungs, and some who died from it. Others had parts of their hands or feet amputated.
A short while later the hand surgeon called. He apologized for missing my appointment. He said he was prepared to see me on my original appointment date. He told me he was somewhat familiar with the cancer, and that it would most likely require at least a partial amputation of my finger to get negative margins.
The next day I went to work. I was able to get intake paperwork faxed to Roswell Park Cancer Institute. I was frustrated because it was a Friday and I wasn't able to get an appointment booked before the weekend. I worked Saturday and Sunday because I figured I was going to need my leave in the near future, and work would distract me.
Sunday night after work, my wife went to bed and I sat on the couch Googling my cancer. I read too many websites, and looked at too many pictures of amputated fingers. I became so upset my stomach turned and I got up to vomit in the bathroom. I almost passed out. I had to lay on the floor with my feet on the couch to get blood back in my head. Eventually I made it to the bathroom. I then endured a nearly sleepless night.
Needless to say I would NOT recommend Googling serious illnesses. If you need info, go to the NIH site to get basic info and STOP! If you need more, get it from your doctor, or have a trusted and medically knowledgeable advocate read up and advise you. Going down the Google hole is not good for the already stressed out mind.
The next morning I dropped my daughter off at school and stopped at the coffee shop when my phone rang. I recognized the number as a Roswell Park number. When I answered a female voice told me she was calling from Roswell and confirmed my ID. She then asked how I was doing and I answered truthfully. I was terrible. She then told me that she was my friend's wife, that she came in and my file was on her desk. She said she would help me get registered and get an appointment. I was so happy and relieved I almost cried.
I had an appointment for that Friday with the head of Roswell Park's Soft Tissue department. Knowing I was in, and in good hands was a huge relief!
I then went to Lowe's to grab a few things. When I left I decided to stop by my personal physician's office to see if he could review my file and provide advise. He graciously did. He told me I was doing all the right stuff and gave me a script to help with sleep.
Next I called an advocate for 9/11 First Responders. She works for Mount Sinai and was very helpful getting my claim started. She advised me that first responders often are developing rare cancers and she strongly recommended that I file.
All in all I started that Monday a stressed out wreck. But by 10 or 11 am I had made a lot of progress and was feeling like I was taking control, or at least starting to. I then went home and installed a closet organizer for my wife, whose birthday it was that day.
I went to my first appointment at Roswell Park on Friday October 21. My wife and Aunt, who is a Hospice nurse, came with me. The doctor meet with us for over an hour. I have never seen a doctor give their time so freely, and with not a hint of impatience in my life. It was really remarkable. He answered every question we had and gave us a lot of information.
Unfortunately he said that the first doctor's diagnosis that the finger would need to be partially amputated was correct. Further he recommended removing a lymph node for biopsy to rule out spread to distant organs.
He told us that having the site treated with liquid nitrogen probably helped keep it small. The first surgery also probably removed all the cancer, but since the biopsy results showed positive margins, he felt the amputation was necessary.
He felt the recovery would be fairly straightforward, and that I probably wouldn't need therapy after. He scheduled my surgery for November 2.