Celebrating my Six Month Cancerversary…and accepting the news I really didn’t want to hear.
Milestones and calendar markers. It turns out that the last month has been quite eventful. December 2nd marked the six month anniversary since being diagnosed with Stage 4 Metastatic Melanoma. Wow, has it really only been six months?!? And January 1st was the six month anniversary of receiving immunotherapy infusions (you know, those pesky IPI-NIVO treatments I’ve been blogging about since July). The period of time between those two anniversaries provided moments of hope and a series of new symptoms – it turns out my war versus cancer is about take place on a brand new battlefield.
It’s ironic…the side effects (rash, back pain, colitis, vitiligo, etc.) of my immunotherapy infusions are actually good news. Despite the severe pain and the need for steroids to control inflammation, my side effects are an indication of a POSITIVE IMMUNE RESPONSE. In other words, those little Opdivo ninjas that enter my body every other week are doing ‘something’. That has to be good news, right?!? The first few weeks in the month of December seemed to provide reason for optimism at every turn. My blood results showed continued decreasing LDH levels (not quite in the ‘normal range’, but the lowest they had been since my diagnosis). My infusions also created predictable patterns of pain in my spine. By mid-December, my doctors and I were adjusting medications (anti-inflammatories and time-release pain meds) so that steroids wouldn’t be needed. Things were looking up…it was hard not to be optimistic.
And then, the nausea began. Combined with the taste associated with steroids and cancer meds, I was absolutely miserable. If I wasn’t kneeling in front of a toilet (you know, just in case), I was trying to sleep so that my conscious self wouldn’t feel so crappy. I was taking sedatives/anxiety drugs (Lorazepam) just to fool myself into sleep mode. The last two weeks of 2016 were not fun. I slept…like a lot. I slept during extended family Christmas present celebrations. I slept while my daughters and wife went sledding outside. I slept so much that it made me exhausted…and I would need to take a nap. Okay, I think you get the idea. I should have been renamed “Rick Van Winkle”. Turns out people don’t often tease those with cancer.
For a stage IV cancer patient, I consider myself lucky. Most people that run into me at work or out in public cannot tell that I’m battling stage IV cancer. For the most part I look healthy and can usually hide the discomfort/agony associated with my disease. In fact, I’ve gotten numerous compliments on how great I look. Three years ago when I started working at Woodstock North High School I weighed 260 pounds. As of this morning I’m down to 209 pounds. And since I don’t look sick people ask what my secret is…what diet am I on…what is my workout plan? My response is always “cancer…but I don’t recommend it” — usually followed by uncomfortable silence.
But late December brought other ‘gifts’ besides constant nausea and fatigue. There was one day when my eyes wouldn’t focus on far away objects. It didn’t hurt, but I knew it wasn’t normal. And that made my morning trip into work a lot more interesting. The following day I had pain behind my eyes when I tried to look side-to-side. It went away after a few hours, thankfully. The typical discomfort in my lower back started to show up as extreme pain all the way up my spine, sometimes into my shoulder blades. And then the week before New Years’ Eve my nausea resulted in actual vomit…on seven different occasions. Seemingly for no rhyme or reason – that started to scare me a little. I’ve had my share of side effects throughout the cancer treatment process, but these symptoms were all new to me. I was officially scared. Something was different.
And my spidey senses were tingling.
Those symptoms, in hindsight, could have been a blessing in disguise. My wife and I demanded that my oncologist order new scans. We hadn’t done a spine survey since September…so it made sense for a three-month check-up. More importantly, we hadn’t done a brain MRI since I was first diagnosed (early June). Those results showed absolutely no sign of cancer. The brain is the only place I never wanted to have cancer – treatment and survival outlooks get much more complicated when the disease enters the brain. I remember crying tears of joy when those results came back. So after seven months of targeted therapy (pills) and immunotherapy (intravenous infusions), I wanted my doctor to take another look.
I knew something wasn’t right.
My oncologist and ever-optimistic wife assured me that these were side effects of tinkering with my medications. That actually made sense to me…and yet, things still did not feel right.
So my brother-in-law takes me to the hospital for scans in a military Humvee – there is no better way to get focused on fighting cancer than riding in a vehicle designed for combat. I was ready. I was optimistic the scans would show limited growth or no change – not necessarily good news, but I’d happily accept stability rather than unrelenting growth. To get all the images they needed I was required to spend one night in the hospital. The first day they took CT-scans of my chest, abdomen, and pelvis. The second day offered me a full spinal survey and a MRI of the brain. Results would not be imminent…but I could expect to hear from my doctor by 3pm the following day.
My cell phone vibrated…it was Dr. Richards. No whammies, No whammies…STOP…
His voice soft and sensitive, he proceeded to tell me that the chest, abdomen, and pelvis scans showed that previous tumors had either shrunk or completely disappeared. I wasn’t surprised…I hadn’t had any pain in those areas for months. But when you are a stage IV cancer patient and your oncologist offers positive news, you take all that you can get! Great start…but I know my oncologist. I could tell in his voice that he had more information. And I could sense that he would take no pleasure in telling me the rest of my results.
“Unfortunately,” he said, “we now see metastatic lesions all the way up your spinal column.” To be honest, I didn’t even care about that and I wasn’t surprised. I knew my back was “jacked up”. It hurts, at least a little, every day…but it is pain I can LIVE with…and I will happily endure that pain for decades, if I’m fortunate. I have already lost the privilege of giving my daughters piggy-back rides. That actually hurts more than the physical pain of spinal cancer. My future employment as a MMA fighter is no longer realistic – not sure I understand the appeal of that ‘sport’, anyway. And if my spine gets too fragile, there are potential solutions that my doctor has already discussed with me (rods in the spine, clamshell braces, etc.). These are not methods that I envisioned I would need as I grow older, but given the alternative I would happily accept these modifications. And if you couldn’t tell, I’m rambling because I’m trying to delay the information that Dr. Richards presented to me next on the phone that day.
He quietly apologized and said “your scans also revealed small metastatic lesions in your brain”. Sorry Doc, I didn’t hear you. You were breaking up. Could you please repeat that? Was there a niner in there? Are you calling from a walkie talkie?
He regurgitated the same exact sentence. Tears started to well up in my eyes (see…even despite my fragile back, I wouldn’t be a very good MMA fighter). I explained that I knew what the terms metastatic and lesions meant, but believe it or not I needed him to define what he meant by ‘SMALL’. Was he saying they were tiny in size or that there were only two or three of them?!? He altered his original statement slightly: “there are multiple quarter-inch lesions in your brain”. Again, I consider myself highly educated (Master’s Degree, often binge watch the Discovery Channel), but I had no idea what he meant by ‘MULTIPLE’. I asked if that meant there were like five lesions or ten. Unfortunately, I hadn’t braced myself for his response…
He explained that in medical circles, ‘multiple’ is best defined as “too many to count”.
Holy Shit. Not only did I not want brain METS in the first place, it turns out I am the lucky recipient of a brain that had too many lesions for someone with a PhD to count. And I’m fairly certain that he could probably count into the trillions, if necessary. Luckily, I think I’m joking…I’m guessing that just means that it’s futile to actually count the lesions. There are too many to surgically remove what I have…and he has to treat the whole brain, anyway. Regardless, that was not the news I wanted to hear!
The results mean that I went from a shitty chance of five-year survival (~34%) to an even shittier chance (~15%). Brain METS suck. But I still think I’m a better candidate for survival than those percentages indicate. I have a positive mindset, an incredible support system, I’m still relatively young, and I have two daughters that I need to teach how to drive (TRUST ME, for society’s sake we do not want Cindy to handle that responsibility)! So, on one hand I can be depressed and whine about how my survival chances have decreased. Or, like Jim Carey’s character in Dumb and Dumber, I can remain optimistic despite the slightest of odds. (“So you’re telling me there’s a chance…YEAH!)
It sucks. But I actually feel great. My nausea and vomiting are gone. My back pain has been manageable. I haven’t had blurred vision or pain behind the eyeballs. I don’t feel like I have brain cancer…and yet, we’re going to fight this beast as aggressively as possible. My next post will be about my new treatment option, something called BIOCHEMOTHERAPY. I’m probably going to lose what little hair I still have and I’m going to drop an extra 20 pounds. After this treatment, people will probably instantly know by first sight of me that I’m a cancer patient. But I don’t care…bring me to the brink of death so that I can beat this disease. I’m looking at temporary pain for long-term gain. I don’t need a Humvee this time…my mind is my weapon…and there is enough positive thought artillery to last a lifetime…a long lifetime…my lifetime.