In 1997 when I was 43, I began snoring heavily. My wife thought that it was an annoying habit. I went to my doctor. He assured me that it was nothing unusual and suggested the usual remedies. He even thought it might be allergies. After a variety of treatments and medications, nothing worked. I finally went to a specialist who referred me to MD Anderson Cancer Center in Houston. They removed my tonsils, and performed biopsies. I was diagnosed with squamous cell carcinoma in my tonsils. The tumors were large and had begun affecting my breathing, which is why I was snoring. They also determined that the cancer had spread to several lymph nodes. I was staged at a critical T4N4 and my prognosis was not good.
My doctor, Helmut Goepfert was the department head for MD Anderson Cancer Center's Head & Neck Department. He assured me that he would treat it aggressively and put together a great team of doctors. Two weeks later, I met with the team. They laid out a treatment strategy that gave me a 10% chance of surviving five years. Those are not very good odds, but certainly better than the alternative. After many more tests, CT scans and blood work, I started my radiation treatments in July. They put me into a custom built plastic mask that was clamped to a table to position me properly. Nine weeks later, I finished my treatments. About a third of the way through, my throat was so sore that I couldn't swallow, breathing was difficult, eating and drinking were almost impossible. I lost almost 100 pounds and withered to nothing. I had IV fluids and nourishment to keep me alive. It wasn't pretty. After treatments stopped, the radiation continued to work, causing me about six more weeks of misery. My throat was raw, my skin was raw and peeling, I couldn't eat, constipation was a daily battle and pain meds were routine. My radiation oncologist warned me that if my cancer ever returned, that treating it would be almost impossible with radiation.
During my treatment, I had a great support network, continued to work almost every day, was surrounded by people that loved me and took care of my needs. A year later, my wife told me that even when I thought I was doing OK, I had gray skin, looked like a shadow of myself and worried everyone; except me. I was determined. I had a wife that loved me, an 11 year old daughter that loved me, many friends and colleagues that loved and cared about me. Without them and the motivation of my work, I might not have made it. I was, and still am blessed.
I survived, and have been in remission for 16 years. I took great care to follow-up with my medical staff vigorously over the next five years. I was poked, prodded and tested until just thinking about treatments made me upset. But, I beat my 5-year odds dramatically.
Today, my wife of 34 years is still beside me, supporting me and loving me. My daughter who was 11 then, is now 28. I've watched her grow up, become a college athlete, graduate, find the love of her life and get married. Both of them are the loves of my life. Two years ago my daughter married her husband. We're fortunate that they live nearby and we see them often. In September last year, they had my first granddaughter. She is the third love of my life. All my friends told me that grandkids were special. I had no way of knowing just how special. She's almost six months old and loves to spend some nights with her Nonie (my wife) and Papa Ace (me). We just love her to death. She's a happy baby and always inspires both love and laughter. She's a hoot! So, I've been blessed in my personal and professional life.
My new year hasn't started well. I have been having trouble swallowing and my speech has become difficult to understand. In early January, after much testing at MD Anderson Cancer Center, I found out that my squamous cell cancer has returned. It's not in the same area. This time is covers my entire larynx, epiglottis and oral cavity. Like I said, it's aggressive and this happened pretty quickly. The good news is that technology has advanced and it can be treated.
My surgeon, radiation oncologist and chemotherapy team at MD Anderson devised a treatment plan that involves both Proton Beam Radiation Therapy and Chemotherapy with Cisplatin. I'll still have a difficult seven week treatment plan, followed by months of recovery. I'll be very sick after only a couple of weeks, suffer through the swallowing problems, have potential damage to my jaw, breathing, and skin. I'll be nauseous from Chemotherapy and be toxic to my loved ones. Not a pleasant thought, but it's necessary to my survival.
Unlike standard radiation, proton radiation is different. This excerpt is from the MD Anderson Cancer Center, Proton Therapy website, "Imagine a 196-ton, cancer-killing machine that can target a patient's tumor with sub-millimeter precision while sparing nearby healthy tissues and minimizing side effects. In its most simple terms, that's proton therapy.
Standard radiation therapy has evolved and improved over the years and is effective in controlling many cancers. However, because X-ray beams are composed of primary photons and secondary electrons, they deposit their energy along the path of the beam, to the targeted tumor and beyond, and deliver radiation to healthy tissues before and after the tumor site. This radiation "exit dose" may cause health issues later because it can damage the normal tissue or organs near the tumor or area of concern.
The advantage of proton treatment is that the physician can control where the proton releases the bulk of its cancer-fighting energy. As the protons move through the body, they slow down and interact with electrons, and release energy. The point where the highest energy release occurs is the "Bragg peak." A physician can designate the Bragg peak's location, causing the most damage to the targeted tumor cells. A proton beam conforms to the shape and depth of a tumor, while sparing healthy tissues and organs."
That's critically important for me. In my treatment plan, standard radiation therapy would negatively impact my healthy tissues and previously radiated tissues. Without proton therapy's benefits, I would probably lose my jaw, suffer with extreme tissue damage, may lose my ability to swallow food and water, and may have a carotid artery "blow-out" followed by bleeding to death.
So, I'm all set to begin treatment tomorrow. Today, I received a call from the business office at MD Anderson Cancer Center. Rose told me that my insurance company, United HealthCare has declined to cover my Proton Radiation Therapy, saying they feel it is "Experimental." The insurance company told my doctors that they could treat me with standard radiation. But, as you've already read, that will decimate my quality of life and may kill me. We're appealing their decision. But, neither the hospital nor my employer are optimistic that they will reconsider. So, we are now fighting that battle too.
My doctors tell me that it's critical to get my treatment started now. Waiting would decrease my chances for success. I've found out that the gap in healthcare insurance payments will be about $73,000. We have most of that covered. I've given the hospital my guarantee and collateral. My treatment begins tomorrow. Here is the hard part for me. I'll be about $28,000 short when all is said and done. If there are complications it might be more. I want to see my granddaughter grow up. I want to be here for my family. I want to grow old with my wife. I'm a young, vibrant 60 years old! I won't let this defeat me. I will survive.
I need your prayers and financial help to survive. I would appreciate anything that you can do to help. Thank you for your consideration.
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