A Rough Year

This year has been a rough one to say the least. I'm using this post as sort of therapy for myself. Like a diary or just to get "this" off my chest. On April 28th my husband went to the Emergency Room because he had breathing problems. I had just flown back to Tennessee the day before to care for my 99 year old Grandmother (who lives with my folks) while they were on vacation--otherwise I would have been with him. The Docs discovered a "mass" blocking his airway and they life flighted him by helicopter to a larger hospital an hour away. Doctors there did an emergency tracheostomy because the mass was very close to blocking his entire airway completely. After 4 days and 2 biopsies, they discovered he had an extremely rare benign tumor in his larynx. A tumor so rare that he is the 29th documented case in the WORLD. My healthy, active, non-smoking, husband. So random. So strange and so surreal. It turned our lives upside down. It also brought us closer as a couple. Strengthening our bond to each other. It opened our eyes to our own shortcomings and failures within ourselves and in our relationship. We have overcome these things and have tackled this tumor with freight train force. Together. And we won... After he left the hospital, tumor still in tow and new trache to breathe from, we began our quest and research to find a Doctor to tackle this demon. We went to Huntsman Cancer Center in Salt Lake City (even though it wasn't cancer they also treat tumors). The arrogant Doctor at Huntsman who barely had time to visit with us (a whopping 10 minutes on two different occasions) wanted to treat Matt with a full Laryngectomy with possible radiation. A full laryngectomy means Matt would go from 39 years old to an 89 years old lifestyle, overnight. He would be left with a permanent trache for the rest of his life which means, no skiing, swimming, snorkeling/diving, backpacking, hiking, cardio of any kind, and no showering without a lampshade thing over his neck, in addition to people looking at him like he got that way from being a heavy smoker. After feeling deflated from this diagnosis we didn't know where to turn other than researching the web--which is impossible when a tumor is so rare because there is little to no information out there on it. Luckily, the initial Doctor who first saw Matt in the ER here called him (I answered because Matt had no voice) out of sheer curiosity in how his treatment was coming along after discovering this tumor. I told him we were devastated after learning about his treatment options at Huntsman. Matt asked me to ask him if we could come in to the hospital here and speak to him. I explained he'd have to read Matt's lips since he had no voice. When we arrived he had printed out several articals on the web from medical journals about this particular rare tumor and the treatment that few doctors had provided. There was ONE case in the United States where the patient had been treated by having a partial laryngectomy by a doctor in Arizona at the Mayo Clinic over 10 years ago. This gave us hope. On Monday morning I called the Mayo Clinic, got him registered as a patient and explained our dire situation. After all, the tumor was still growing and threatening more damage. The secretary expedited our appointment after receiving all of the faxes and oncology reports from Huntsman and the two hospitals here. She asked if we could be there by Wednesday to see the doctor. After hanging up the phone I told Matt to pack his bags we're leaving in 2 hours to drive 16.5 hours to AZ. We drove, we saw the doctor and made the appointment for the removal. We spent nearly an hour with this doctor. He was wonderful. He couldn't believe there was "another case." Three weeks later Matt had the tumor removed by having a partial laryngectomy. He is nearly three months after surgery and is healing beautifully. He still has a trache in his neck to breathe through during the healing time. And yes, he is still healing and dealing with swelling on the inside. We hope the trache comes out next week when he flies to AZ for his 2nd post op visit. Fingers crossed. While viewing pictures on my blog you'll probably notice the trache on his neck. It's almost over. He's been amazing. His spirits have remained ridiculously high during this whole ordeal. The only time they were low was after seeing the doctor at Huntsman. I think I carry the emotions for both of us. I'm just looking at this as a mere speed bump in life.