My story begins while being self-employed. I was a computer technician for small offices and home offices. I repaired, maintained and installed new computers and networks for my clients when I was diagnosed with cancer in 2006. That was seven years before my amputation.
I had to undergo two operations. The first kept me in the hospital for a few hours before my wife put me in the car and drove me home. The doctor had cut an odd lump out of my leg and I convalesced for three or four days before returning to my normal work schedule. When the pathology report came back, the doctor reported to me that the odd lump was a cancer. Its specific name is Leiomyosarcoma.
I underwent all the mental stages of a crisis. Shock, anger, denial, frustration and, finally, acceptance. If I am to be completely honest with myself, there was another stage, too: fear. Cancer can be very scary when it is applied to oneself. Between the two surgeries, I had a doctor’s appointment at St. Raphael’s Hospital, the Father McGivney Cancer Center in New Haven (subsequently renamed St. Raphael Campus of Yale New Haven Hospital). Shock and fear still dominated my thoughts as I walked down a long hallway decorated with stained glass windows and passed the kindly portrait of Father McGivney. But once in the doctor’s office, my mind snapped back to reality. It was bright and noisy. Everyone, from the receptionist to the doctor, was relaxed and friendly. Nobody ran up to me with a sad face trying to reassure me or to hold my hand in sympathy. It felt more like walking into the dentist’s office. One saw lots of white teeth. The feeling of despair gradually lifted.
The second surgery took a bigger chunk out of my leg, but I still went home the same day, with crutches. Recovery was a full five days and then I returned to work again. However, there was follow-up work to be done. I underwent radiation for seven full weeks. At the end, it felt like I had a really bad sunburn and I walked with a limp for about a month longer. It slowed me down, but didn’t stop me.
When diagnosed with any type of cancer, doctors will monitor you with MRIs and CT scans for a period of five years. If the cancer is not detected after that time, the doctors declare you as cured and wish you a happy life. I had that experience and promptly forgot that I ever had the nasty thing. But this cancer was not finished with me yet. It returned in the sixth year, 2012. The new team of doctors was convinced that they could repeat the process with the same results. Unfortunately for me, my life was to become altered far more than the first time. In fact, the 10 months before my amputation were far more difficult than after.
Within two weeks after radiation, my wound became infected. I was readmitted to the hospital via the emergency room. I underwent multiple surgeries over the next three weeks, first to continue cleaning out the infected area, and then plastic surgery to close the open wound. The latter procedure failed. When I left the hospital, I had a gadget called a wound vac attached to me and had to undergo an additional three-week course of antibiotics to kill the infection. But I still could not go home yet. I was sent to a rehabilitation (rehab) hospital for three full weeks to prepare me to return home. When I did go home, it was with crutches and a wound vac. A few months later, the plastic surgeon tried again to close my wound. It failed again, but in the meantime, I spent another three weeks in the hospital, followed by an additional three weeks in rehab before finally returning home with my sick leg still attached to me.
The plastic surgeon then sent me to undergo a treatment known as hyperbaric oxygen therapy. The hope was that the wound would heal if soaked in pressurized oxygen repeatedly over a six-week period. It didn’t.
In March 2013, my surgeon scheduled a new MRI to determine if my sarcoma had reoccurred. It had. More surgery was required, except this time the leg needed to be amputated above the knee. As crazy as it sounds, it was a relief. I was sick and tired of having limited mobility, dragging around a sick leg with a wound vac attached for nine months and being visited three times a week by a nurse to change its dressing. During the previous 10 months, I did return to work part-time, but it was difficult to manage continuity. I didn’t know what my quality of life would be post-amputation, but I knew it was pretty lousy dragging around a sick leg. So it was back to the hospital. This time it was a three-day visit, followed by another three-week stay in a rehab hospital.
After May 2013, my two new best friends were my prosthetist and my outpatient PT. Together, they taught me how to use my new prosthesis and to improve my walking gait. About six months later, I was exposed to Gaylord Hospital’s Sports Association. This group is dedicated to teaching people with various disabilities to enjoy recreational sports activities, or more correctly, adaptive sports activities. I participated in indoor rock climbing (wall climbing) and bike riding. My desire to ride was so great, I bought a new road bike, which was adapted to my needs. It included a clip for my right prosthetic foot to be held firmly on the petal and an adjustable seat. With those two adaptations, I was able to ride a normal bike again. And with practice – over time – I got better and stronger at riding.
I also joined a health club and began working out three to four times a week. It took a while, but my pre-sickness strength slowly returned. Improved strength, stamina and balance translated into improved safety when walking.
Around the first anniversary of my amputation, I noticed my progress leveling off. Once again I was faced with a decision: Do I accept this level as my new normal or do I continue to strive for improvement? I chose the latter, returned to PT, drove my prosthetist crazy, worked harder at the health club and accepted that progress would be harder to come by, but I was unwilling to quit.
At my three-year anniversary, post amputation, I finally reached a point where I was satisfied with my walking gait when using a cane. However, I still need a cane when walking about outside the home. At the age of 69, I am no spring chicken but I am constantly surprised at continued improvement in strength, balance, stamina and, most importantly, gait. It seems to be true that it is never too late to improve one’s health and fitness. In the health club, I am constantly surprised by how many individuals with two sound legs, but poor knees and/or hips, walk worse than me.
It is true that I was motivated to help myself. One cannot simply talk the talk. You must also walk the walk. The desire to work again, walk again, dance again, ride a bike again or whatever your desire is, must be there and there must be effort expended every day to regain your quality of life. However, it is also important to recognize that I didn’t undertake this journey alone. I had a virtual army of professionals prepared to help me overcome my challenges. I wondered what their motivation was to offer this help. The answer I received was quite simple: Every time they see a person they were helping get better, it gives them a buzz. It lifts them up and they go home feeling a great sense of accomplishment. Your success becomes their success.
The Support Group(s)
Attending support groups was also key to my successful healing process. At first, I was trying to learn as much as possible from others’ experiences as ex-patients. But it didn’t take long for the roles to reverse before I became the provider of calming reassurance to new amputees and useful lessons I have learned along the way. Helping others actually helps with your own healing process.
My primary insurance carrier became Medicare in August 2013. That was just in time for the invoicing process of my first prosthetic leg. I didn’t have to struggle with private insurance coverage for my C-Leg. I am very thankful for that because Medicare provides coverage of advanced prosthetic devices, provided that the doctor’s notes include the necessary wording to prove medical necessity and that I, the patient, am at the proper K-Level to qualify for it. All of this happened for me smoothly and in the background because my doctor and prosthetist worked together as a team. My prosthetist wrote the notes, and my doctor inserted them into his notes to satisfy the Medicare administrators.
My Life After Amputation
Life has been good. I returned to work. I went on vacations, including one to the Grand Canyon and other natural wonders in the great Southwest. The latter was on a bus tour, where many on the tour (not just me) complained about weariness due to the rapid pace. I was relieved to know that I wasn’t the only one gasping for air more than one mile above sea level. I also took multiple tours in Europe and the Middle East. As before, I run errands to stores. I drive my car, unmodified, using my left foot. I go to theater, movies and family visits. In other words, I ADAPTED! Please trust me when I say to you that I am an average Joe. And if I could do it, so can you. But first, you must want to, and second, you must ask for help.