While I’d certainly like to think I’m more than Stage IV melanoma diagnosis, here’s a brief overview of my story related to cancer. It’s my skin cancer creds, my skeels, my resume in bulletized, abbreviated format and phraseology. That’s code word for crappy English.
During the winter of 2011 is when the disease could have been stopped. Suspicious lesion was “missed” by my dermatologist. The disease is known to be 95% curable/treatable if caught in early stages. In hindsight the Doc seemed too distracted by his Mercedes convertible, surgically perfected facial features, and enhanced sense of self-importance to do his job. As Jerry S would say, “Not that there is anything wrong with that (eg convertibles or Botox),” but to miss the classic ABCDEs of melanoma is, well, a shame. In hindsight, my part in this is that I could have been more assertive in the Dr.’s office. I think in general in our culture we should give doctors a lot of credit while not putting them on a pedestal and not at the expense of our critical thinking skills. All kinds of morals to this story.
By March 2012 we got a second opinion. The thing biopsied by different dermatologist from Dr. Nice Brow’s office. But the new guy distanced himself as soon as the melanoma was confirmed. I have long suspected that he got advised by the practice’s lawyer (probably with equally nice convertible, facial improvements, and elevated ego) to quit returning my calls (he had graciously provided his personal cell number) before the practice got their collective butt and nose jobs sued clean off. BTW I have forgiven them and did not go after Dr. Nice Brow and Dr. Hightail despite Mr. Litigious counsel (though I’m continually remind myself that forgiveness is a practice).
In late April 2012 I had my first surgery – wide scalpel incision (big chunk of head and hair removed) on right posterior (back of) scalp, along with partial neck dissection revealed Clark’s level 5 primary tumor, Breslow depth 13mm, ulceration present with lymphatic, vascular invasion along with 2 of 4 lymph nodes in neck containing metastatic melanoma. In other words diagnosis confirmed: Stage IIIc Malignant Melanoma. Time to panic and do epic long, eye squinting internet searches on subject into the wee hours of the morning.
Between May – June 2012 I freaked out a lot, did a lot of internet research and beat the crap out of…toilets. Took some trips to naturopathic doctors for a tower of supplements. Changed diet (juicing, pretty much meat free and veggies only) generally leading to violent bathroom abuse around Colorado. Received full course of radiation treatment to neck and head. Lost hair. Got tired and red. Unleashed frustrations on more, poor defenseless banos.
By July 2012 I had my second surgery…complete dissection (@ twenty lymph nodes cut out) on right side of neck…thought the word “dissection” should be reserved for sopping, formaldehyde soaked sharks, frogs and cats in high school biology class but was wrong.
Then in August 2012 I had my third surgery when 2 new “satellite” lesions on head popped up. After subsequent scans, I graduated to Stage IV (terminal) melanoma with tumors in stomach, lungs and liver. We were all so proud! All I could think about were my wife and two boys.
Fall of 2012 is when I started looking for clinical trials. Faced with abysmal survival rates started searching for clinical trials with trips to Denver, Pittsburgh, and LA. Also spoke with fellow melanoma patient Susan Steele, of Skin of Steel Foundation, whose advice probably saved my bacon (although with my new all veggie diet I really should say fakcon). Went with sublime services of Dr. Omid Hamid at The Angeles Clinic in Los Angeles. Also went back to work full time, cuz you know I was bored.
September 2012 I started Phase I clinical trial of immunotherapy featuring dynamic duo of PD-L1 Antibody and BRAF inhibitor. God bless my brother Martin McDermott (if you need commercial real estate in LA call him), his wife Cherie and their two boys. They performed recurring mitzvahs hauling my weary self from airport to Dr.’s office, as well as righteous eateries around LA, during my day trips once a week from Colorado to LA.
By October 2012 I experienced all manner of exciting side effects: Crazy low/high liver and kidney counts; scratch your face off hives the size of bowling balls (slight exaggeration) on 90 percent of my body; fevers; insomnia (literally slept @ 10 hours, total, in a week); exhaustion; facial swelling…good thing I kept a sterling, positive attitude through it all (ha!). Was told another guy in trial had been hospitalized due to immune related side effects. Wondered if I was next.
Thanksgiving of 2012 is when the proverbial you-know-what hit the fan. An MRI the week before Thanksgiving (yeah!) showed a series of suspicious lesions in brain. We were talking 43 tumors at the time. 3-5 brain lesions carry a very poor prognosis (6 weeks to 6 months survival) but 44… Dr. Hamid held my hand while we reviewed the imagery with radiologist, gave me a hug, and cried with me. The guy seriously doctored me that day and I am grateful for his compassion.
In December 2012 started ramping up new way of eating while Hamid kept me in trial for time being. Foray into brave new meatless and sugarless universe and The Budwig Diet. Results were interesting. Blood work came back normal after first week. Hamid questioned whether I was taking meds. Will mention in future posts. Also thought about doing video diary for my boys, telling them everything I could think of that I wanted them to know about me. Decided to wait on this and put energy and belief in getting through first, then see what happens/if needed.
During January through February 2013 got booted from clinical trial, started Yervoy and Gamma Knife treatments. After slight worsening of tumors in brain, removed from trial. Fought with insurance company over gamma knife treatment versus whole brain treatment. Started first course of ipilimumab (dare you say that ten times), known by commercial name “yervoy.” Befriended anti-histamines after battles with hives and swollen facial features, hands, and feet. Received first of eight gamma knife sessions with Dr. Breeze at University of Colorado. He used a Dewalt screw gun to drill four into head and my transformation into Modern Prometheus /Frankenstein nearly realized.
Between June-August 2013 I had my second three month cycle of Yervoy. Friendship with anti-histamines blossomed into full blown love affair. Developed treatment induced ulcers and blew thyroid to smithereens, started Proton Pump Inhibitor (PPI) Nexium and Synthroid. Had first upper gastrointestinal endoscopy but results all clear despite ongoing pain and other issues. Also started 2 week on/off injections in stomach of Leukine as compliment to immunotherapy. Go white blood cells go. Scans of brain/body stable. Emotional/mental state questionable, as usual.
The fall of 2013 is when they realized I had 98 brain tumors instead of 44. Neurologists initially thought “seeding event” had occurred during fourth and supposed to be last gamma knife treatment. The news was shocking to say the least – I had 98 lesions instead of original 44. After review, the “good news” was that these were existing but missed in previous MRIs. They don’t refer to tough jobs as “brain surgery” for nothing I guess. Despite the positives it was hard to get back on my feet and go back in the ring after this one. My one request was we step up the number of lesions treated per session. Was told we set record for longest time in gamma knife machine (4.5 hours playing dead trying not to be dead). Would also set North American and European record for number of lesions treated by gamma. Bruce Banner/Incredible Hulk ain’t got nothing man, not a thing.
October 2013 – April 2014 is when I started my first treatments with new immunotherapy, keytruda…as well as completed brain treatments. Head/body continued stability. Went back to Dr. H in LA to get on “humanitarian doses” of soon-to-be-FDA-approved, PD-1 (Keytruda), administered every 3 weeks. I have been on that infusion schedule ever since.
June 2014 I went back to Colorado/Denver form California for treatment: University of Colorado/Dr. Gonzalez now offering Keytruda so transferred from LA to Denver for treatment. Missed tri-weekly LA food fix and checking out freaks at Venice Beach. Hopefully could live with that, literally.
During September – October 2014 one lesion in brain demonstrated an increase in size. This gets me to 99 Gamma Knife treatments. Nevertheless, according to Dr. Robert Breeze, it was a medical miracle that brain remained so relatively stable. He retreated lesion with his million dollar laser gun. If The Thing continues to grow, will have to go under the knife. FDA approves Keytruda so I started three week infusions in Colorado Springs. First trip to ER in September with severe abdominal pain. After blood work, ultrasound, x-rays, and ct/pet scans, I went from hospital with a mystery. No concrete answers about the cause. Suspect treatment related side effects.
By December 2014 the lesion in brain has stabilized/exhibits no growth. Large exhalation of deep breaths. Despite Breeze’s assertion that brain surgery would be “easy” in right frontal lobe, I’m not completely sold. More heavy breathing. Scored a second trip to ER with mysterious severe abdominal pain on, of all days, my 44 birthday, Christmas day. My boys spent their Christmas in the ER with their Dad writhing in abject pain for hours. That sucked. Still no answers even after another endoscopy a few weeks later.
Between April 2015 MRI showed that Brain lesion has grown again. Surgery is recommended and agreed to…I guess this was getting a little serious. (-; On the upside, thought I figured out cause of abdominal “attacks” – severe reactions to lactose (which later provided to be wrong). Went cold turkey on the PPPIs (was never sure they were good long term anyways) and started lactaid and hydrochloric acid for digestion. Much to medical community’s chagrine and befuddlement this relieves symptoms.
Spring of 2015 is when Dr. Robert Breeze performed brain surgery on my right frontal lobe. Realized University of Colorado Hospital pretty much rocks. Food was good. Service was excellent. They even darned by socks (kidding). All you can take drug smorgasburg equally righteous (though they got me so high stopped breathing a bit in the MRI machine). I returned to life of leisure during six weeks of convalescence. Developed pretty mean cases of anemia (low red blood cell count) and vitiligo – think Michael Jackson without the gloves, mask, holding baby over railing etc. You know I’m bad – I’m bad – you know it.
May 2016 – Surgery #6 or 7, I can’t remember now they have all been such a great time, to remove plumb sized tumor in small intestine that had been there for last 3 years and caused ‘this pain goes to 11’ distress
Present – I’m still here but definitely not necessarily all there, in other words, status quo. Boring and uneventful is good. Hey man amen.
THANK YOU for all your support, prayers, good thoughts and well wishes. 6 weeks prognosis has somehow morphed into almost five years. We could have not have done it without you.
Please comment or let me know if there are any further details or experiences I can share with you. Peez.