Cancer is a nasty, painful thing, as the following pictures will attest. I was diagnosed with Malignant Melanoma in May of 1995. I have subsequently been operated on 26 times and the cancer has spread (metastasized) far from the initial primary site so I have now been a stage IV patient since 2000. Due to the severity of the initial diagnosis I am in a very high risk category and was actually told way back in 1995 that I had only a 4% chance of surviving past 5 years. Well, needless to say, I have FAR exceeded that prognosis!
My story began when I was only 36 years old. I discovered an irregular mole on my lower back that had been aggressively growing and growing until it finally began to itch really bad and then ulcerated and bled. I went to the doctor and as soon as he saw it he put me on the table and cut it right out that same day! I met with an Oncologist who gave me the heart-stopping news and then began getting 2nd and 3rd opinions on treatment options. I went as far as Shands in Gainesville to meet specialists in my melanoma. I finally settled on Moffitt for treatment due to them agreeing with Shands and being much closer.
Side story – the first oncologist wanted to perform aggressive chemo which the other 2 cautioned against as it had proven mostly ineffective on melanoma and was also a very hard ordeal for patients. It appears it was all about the Benjamin$ with that Doctor as the chemo companies are known to “compensate” treatment centers generously. Grrrr….So Moffitt was literally a life-saving decision.
After the initial tumor was found, Dr. Douglas Reintgen at Moffitt performed a Lymphoscintigraphy to track the probable spread of the cancer and subsequently found a lot of cancerous lymph nodes in my left armpit area. Subsequent operations removed additional tumors on my left side, under my armpit and again on my left side. They went in and pretty much cleaned all of that area out, leaving me with severely compromised arm movement (frozen shoulder) as well as chronic lymphedema (a swelling of the limb due to a build up of lymph fluid). I managed this by getting Manual Drainage Massage 3x week for months as well as wearing a special arm sleeve (resembling a super long chambered BP cuff), with a special pump that sequentially inflated the chambers and squeezed the excess lymph fluid from my arm to drain into the chest area… which subsequently bloated up and was painful to carry around. I also have a compromised immune system due to the removal of so much lymph system on that left side. Are we having fun yet?
In 1998 another tumor was found just below the surface on my left side midway between my armpit and my hip. Surgery removed that tumor with no major complication.
A PET scan in 2000 found that there was a tumor fused between my left lung and spine which was removed via Thorocotomy in August 2000 and it took 4 months to recover which was mostly spent bed-ridden. That was followed by a year of leukine therapy (a form of interferon), which consisted of painful injections every day for two weeks, then two weeks off, two weeks on, two off, etc. The side effects were very similar to having a bad case of the flu – for a YEAR! The pain of the thorocotomy, however, did not go away until five (5!!) years afterwards as the surgery involves sawing through a back rib and spreading you open to allow access to the lung. By far this was the most painful operation of them all. A couple of days before I was to go home they needed to get the lung-draining tubes out of my side (after letting me dope up on a heavy dose of morphine) and even though he jerked them fast to minimize the length of the process (supposedly making it less painful) I STILL jumped nearly 2 feet in the air due to the agonizingly intense pain. Morphine can only do so much – even heavy amounts. The shock set me back a bit but I was at least able to go home a few days later and begin the recovery at home.
Aside from a small sub-dermal tumor excised in 2002, I was mostly clean for the next 5 years (until right about the time the pain wore off, imagine that!) but another PET scan in July of 2005 found that I had a lemon-sized tumor fused around my Pancreas and in September of 2005 the doctors removed a bunch of lymph nodes as well as the tail of the pancreas, leaving me a Type I insulin-dependent diabetic. It took a team of doctors close to 6 hours to carefully remove the tumor without damaging the grand central terminal that is the solar plexus area – many many veins, arteries and other important things were involved. I am eternally grateful to Dr. Scott Kelly for taking the time to do that instead of just performing the ‘Whipple’ operation that they had first planned which would have left me in a very dependent state for the rest of my life. We’re having some fun now, eh kiddies?
I managed to make it a few more years with no sign of spreading but then in May of 2008 TWO fist-sized tumors were discovered within my liver and I subsequently had 70% of my liver resected in June of 2008. For the first time I actually felt the pain of a tumor as these were pressing on a nerve somewhere. Two nights before the surgery was scheduled I was rushed to the hospital in severe pain thinking that I was having appendicitis or something, but tests showed nothing out of the ordinary EXCEPT for the tumors in my liver! A little Morphine helped me thru the next 2 days until the surgery. Everything that COULD go wrong after the operation DID go wrong. I was released 7 days later and all looked good until suddenly the opening separated at the right end of the incision and I began to leak abdominal fluid at a rapid rate. I was sitting in a chair strumming my Les Paul when all of a sudden I felt a wetness and when I pulled my shirt back I immediately went into shock when I saw the gusher. I had my brother rush me back to Tampa (a 35 mile, 45 minute journey) and along the way I went deeper into shock as my right lung collapsed. My left lung was struggling since it was already compromised by the 2000 operation. They rushed me into surgery, fixed things up and put me back in a room to recover but the fun continued – I had a high fever that hit 103+ for 3 or 4 days, then I developed a MRSA infection, and finally a terrible itchy rash took over 80% of my skin due to an unknown food allergy. After 3 more weeks I was finally let go (after dropping 70 lbs!) and was able to finish my recovery at home with in-home nursing care daily for the next month or so. Recovery was surprisingly fast from that point on as I was back to work in less than 6 weeks. Amazingly I discovered that the body can continue to function normally with as much as 80% of the liver removed. It grows back somewhat but evidently is an organ that is supremely overbuilt and quite capable of doing its job with even a little bit remaining.
In July of 2009, another tumor was found. It was surrounding my right kidney, inferior vena cava, renal vein and spine. It was deemed inoperable due to the proximity to vitals and so I underwent an experimental radiation therapy consisting of massive doses of directed beam radiation (1000 rads/day for a total of 5 days) that was the equivalent of 5 WEEKS worth of radiation treatment. It worked as the growth was halted.
In August of 2010, another tumor was found again inside my liver. It was deemed inoperable due to the proximity to vitals and so I underwent TheraSphere injection where a seed is planted within the tumor to irradiate it from within. Typical dose is 150 units – I received close to 400 – equivalent to 7,000 rads, the largest single dose I ever received and it was quite awful – full body ache, fatigue and constant nausea and vomiting for about a month afterward. It too worked as the growth was halted.
Also found in the August 2010 scan was a small tumor on my left chest wall. It was left alone until the liver was healed up. In February of 2011 the tumor and part of my left pectoral muscle was removed surgically. It healed up very quickly and there is nothing wrong except a bit of a depression where my chest used to be. But this tumor had a tragic outcome – my younger brother had left home near Denver to travel to my house and help during my recovery. But he suffered a massive stroke near Pueblo, Colorado, slipped into a coma and died a week later. Our family was devastated and I am still suffering from great grief. It is hard to understand how I am still here and he is now gone.
In August of 2011 I was informed that I had a new tumor found (via PET scan) in my scrotum/taint area. It was removed via operation in October of 2011 and did not present a very serious threat, although they could not perform a wide excision and possibly left trace amounts of cancer cells in the periphery area. My subsequent scans have shown no confirmed new tumors although there are 5 masses that are being monitored including one in my liver that has been growing albeit slower than past tumors. In 2018 a large pre-cancerous mass was taken from between my shoulder blades on my back with no subsequent spread, I have also had numerous small squamous and basil cell areas frozen off of my hands and arms.
UPDATE APRIL 2021: For nearly 10 years now nothing “major” has happened and they feel that I am in a pretty well-off remission. If I pass all scans clean this Fall, they will stop annual scans completely until something new warrants a good look. I’m sure Humana will be pleased to save $50K/year. LOL! I will update this page if any new threats are found.
Well it’s now been over 25 years and I’m still alive and kicking, thanks to the wonderful staff at the H. Lee Moffitt Cancer Center in Tampa!
So how did I get Melanoma in the first place? I fell asleep on a floating lounge in our swimming pool back in Indiana when I was 15 and woke up 4 hours later with a bad sunburn on my back, complete with hundreds of water blisters. Melanoma Research indicates that blistering sunburns are the most probable “genesis event”. It took over 20 years for the melanoma to appear.
So if you are going to frolic in the sun, let the pictures below be all the encouragement you need to slather on the sunscreen (SPF 1,000,000 if you can get it!) and limit your exposure to no more than an hour or so, preferably before 10am or after 4pm as that is currently believed to be the safest hours. And if you are fair-skinnned, freckled, blonde or redhead and of the light-skinned persuasion, just avoid the sun altogether – why risk it? You won’t tan, you’ll just burn and you’re skin will look like leather by the time you’re middle aged. You have been warned!
Twin tangerine sized tumors inside my Liver. 70% of it was removed on June 19 2008:
The bulging and disfigurement of my abdominal area is due to widespread paralysis of the entire area that was caused by the Thorocotomy in 2000. When they cut through the back ribs to get at the lung they severed a large mass of nerves that fan around the front. I have no feeling across most of the surface of my belly.