Celebrating my Six Month Cancerversary

Celebration cupcake with sparkler

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.

img_2875

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.

2309538-spider_sense_by_spideray_d4mzxm8

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.

foreshadow        slave-to-matrix-pills

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.

humvee

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…

whammies_of_halogenfree_pbfree_miniaturization

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!)

giphy

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.

Six Week Update — Three Hospital Sleepovers…

Six Week Update — Three Hospital Sleepovers…

Hello again. Remember me? Let’s get reacquainted.

It has been a few months since I’ve posted anything on my blog. Partially by design but mostly because I have been living life as normally as possible. The ten hours a day I used to be able to think about witty, cancer-related blog posts were replaced by ten hours of performing my job duties as a high school assistant principal and additional hours fulfilling my requirements as loving husband to my wife and living jungle gym/super hero (I’m the FLASH) to my daughters. There have been plenty of opportunities (and material) to write about the ups and downs of living with cancer over the last three months…but in retrospect, it’s probably best that I waited until this moment. I’ll do my best to recapture the events and emotions of the last six weeks of my life. I’ll ask for your forgiveness in advance because I’m going to jump around a lot…I don’t have a script and I’m not working off an outline — this is intended to be raw and truthful. In doing so,  I’m going to start with the day that I’m least proud of…just four days ago. Saturday, October 1.

“Cindy, for the first time in this journey I feel like I’m dying!”Steven Michael Rick

I actually said those words to my wife just four days ago. I said them to her with a crackling voice and under a raging river of tears. I said those words to her as I sat on the same recliner where she nursed both of our daughters. And unfortunately I said those words to her because I meant them — something was different that morning. My mindset had broken…despite thousands of supporters we have in our lives, endless prayers from people near and far, and the constant barrage of positive words and actions…my thoughts went to a deep, dark place.

Who the hell am I to say that to the woman who has put everything on hold so that I can concentrate on my battle? Why couldn’t I just keep that to myself…or wait to confide in my doctors or best friends? Well, Cindy is already both of those things…she’s been involved in every medical decision and she earned the best friend title years ago. She could have run away from me a long time ago but she has chosen to stay and fight…she’s stubborn like her father…and I couldn’t be more thankful for that trait!

(How many times am I going to regret stating that for the rest of my LONG, CANCER-FREE life?!? In fairness, probably as many times as I remind her of our “I Love You/Dead Snake” experience.)

Getting beyond what I said and whether or not I should have shared that with my wife, here’s a synopsis of why I said it. For those of you that have been following my blog you once read that September 30 was the date of my post IPI-NIVO scans…the date where I hoped to have science prove that I was on the road to being NED. As you could probably guess, those results did not reveal the best possible news. I knew it wasn’t realistic to expect a ‘cured’ status, especially since I just had a new large lymph node pop up high on my neck the day before my scans. However, what I didn’t expect was that my LDH level would more than double after declining steadily for a few months.

LDH levels are usually indicators of tissue damage, or in melanoma patients, determine if cancer has metastasized (moved) to other parts of the body. Normal ranges are from roughly 100-330 IU/L…my last blood test (three weeks ago?) revealed that I was down to about 402 IU/L. Last Friday my number was up to about 840 IU/L. (NOTE: LDH levels are not necessarily reliable for cancer detection…but the trend in my results was troublesome to say the least.) Dr. Richards dismisses the number entirely as I’ve sporadically had to jump between infusions, steroids, and targeted therapy pills. But still, it’s quantifiable data that I can evaluate every time I have a blood test. (Steady decline = good, huge jump = holy poop!)

On top of that, I woke up with an intense cough on Saturday that seemed to get worse throughout the weekend. I had been diagnosed with pneumonia six weeks earlier and ended up spending a night at Centegra Hospital in Woodstock. If you remember, I have a negative history/connotation with pneumonia. For three weeks in May, my local doctors thought I was suffering from pneumonia…with worsening symptoms, we pursued a lymph node biopsy and I was subsequently diagnosed with stage iv metastatic melanoma. I don’t think I even had pneumonia in May…I do think I had pneumonia in August. But in October, this cough felt different. And by different I meant it felt worse. And by worse, well, I meant it felt like for the first time in this journey I was dying.

Was I really dying? Well, technically everyone starts dying the moment they take their first breath…but no, there wasn’t a light at the end of the tunnel. I was just at the lowest physical/emotional point of my journey…and that was probably compounded by news of my negative CT scans and unattractive blood test results.

I fought through the cough and pain in my chest all weekend. Cindy took care of the kids and I laid in bed ALL DAY on Saturday and Sunday. We randomly decided to check my temperature Sunday night and it was up to about 103°. So we called the on-call oncologist (that should be a tongue twister, try saying that ten times as fast as you can) who convinced us to come to the Emergency Room at Lutheran General Hospital. After an x-ray, more blood tests, and yet another CT scan, they decided to admit me at around 11 pm. Dr. Richards saw me the next morning and eased our fears of pneumonitis (essentially having pneumonia everywhere in my lungs). Instead I just have large cancerous growths in my chest that push on my lungs and cause shortness of breath and coughing. Ummm, Hooray for me?!? That’s probably what was incorrectly diagnosed as pneumonia back in May. Dr. Richards wasn’t as worried about my cough (even though everyone else in the hospital felt they had to wear a mask around me for about 17 hours), but a bout of diarrhea caused him to think I may have colitis (dangerous condition for IPI-NIVO patients which is inflammation of the large intestine). Luckily, that’s easily tempered by high-dose steroids. Unluckily (didn’t realize that was a word until I googled it), more steroids mean additional delays in receiving my single Opdivo (just NIVO) immunotherapy treatments. In other words, we continue to juggle a reaction to my symptoms with treatment of my cancer. Which means my cancer continues to grow while I get treated for my ‘discomforts’. It’s a strange and cruel balancing act…

Since I haven’t been updating my blog with regularity, this marks my third hospital stay in the last six weeks. The pneumonia (referenced with Centegra Woodstock above) was about 6 weeks ago and my current stay at Lutheran General has been explained in detail…let me wrap this up with my Lutheran General stay four weeks ago (the day after my fourth and final IPI-NIVO treatment).

On September 9, I received my fourth and final double infusion of IPI-NIVO. I had dealt with different side effects with the previous three infusions, so I went in tentatively optimistic and curious as to what reaction my body would get this time. During the check-up meeting before getting my final double infusion, my life nurse (Ann McGreal…love her!) explained that only four of her ten current patients had made it to their fourth infusion, putting me in rare company. She even called me ELITE, which I of course reminded my wife of the honorary title every time she addressed me for the next few hours. I had not realized that I was responding so well to treatments. I thought every side effect was a sign of failure. But, by only having a one-week delay throughout the entire double infusion process, I was not a failure…in fact, I was better than most…I was ELITE! 😉 I learned that some patients only make it through one or two infusions, I made it through all four. Other patients needed three month breaks between infusions — I only needed a single week. Okay, if the shoe fits…ELITE seems applicable. 😉

Typically after double infusions I sleep for 16 hours and then wake up with a side effect (terrible skin rash, severe joint pain, flu-like symptoms, etc.). On Saturday, September 10 I had a new symptom…an unfamiliar bounce in my step. I felt great. I was so excited and optimistic about what that would mean about my scans in three weeks (play dumb, you already know the answer). I attended our school’s Homecoming dance that night and felt different than I had after any other double infusion. Dare I say it, I felt ELITE (okay, enough already).

It was great to see our students having fun at Homecoming and I didn’t intend to stay for the whole night. The music was a little too loud or I was a little too old, which in either case meant I would be going home early. I was sitting in an office saying goodbye to our dean and principal when all of a sudden I had some pain in my chest. I also had some discomfort in my lower back. Something was wrong…but I didn’t want to admit it because I was feeling so positive and had so much energy…oh, and ELITE people feel no pain. I was worried most about the chest pain, but that went away after about ten minutes. The back pain, well, that was another story.

I went home and told my wife about the chest pain and back discomfort. She was already in bed so I didn’t want to bother her with details. I went downstairs to catch up on the show Big Brother (see, I diversify my reality television interests…there’s more to me than just the Bachelor and Bachelor in Paradise). Halfway through the show my chest pain returned…and then more severe lower back pain. I had a feeling that if I woke up my wife to tell her about these symptoms, she’d assess them as karma — “see, you shouldn’t go around calling yourself ELITE!!!” (she never said that, but that thought is what kept me from waking her up that night). So for the next four hours I tossed and turned in bed, screaming and crying with every subtle movement. It turns out that it’s hard to swear quietly when you feel like ligaments are being torn from your spine. I had suffered from back spasms my senior year of high school and this pain was much more intense. I thought that maybe I had herniated discs in my lower back. The pain was worse than anything I had ever experienced (and to all the moms out there, I acknowledge that it was probably nothing compared to childbirth). But I needed some relief…or at least an epidural…or maybe even a c-section…STAT.

We called Dr. Richards and he told us to come into Lutheran General right away. They already had a hospital bed/room reserved for me. To end the suspense, I wasn’t pregnant..although that would have made for a much more interesting blog. I wasn’t even injured. The back pain was, in fact, another side effect of my final IPI-NIVO treatment. As good as I felt 24 hours after my final infusion, 36 hours after the infusion put me back in my place. Cancer is a sneaky snook (credit to Disney’s Jake and the Neverland Pirates) and it painfully reminded me that ELITE status was only a temporary designation. I didn’t have any new injuries. Spoiler Alert: I still had Cancer…duh.

After extensive MRI images of my spine and pelvis, it turns out that the pain I was feeling was my last infusion attacking the cancer cells in my spine. Dr. Richards explained that the reaction (albeit, pain) was a positive one that indicated the infusions were working. The problem is that it was working too well…causing way too much inflammation in my back, leading to the intense pain. The cure was prescribing some strong pain killers (morphine) and even stronger steroids to reduce the inflammation (and stop the positive effects of the last infusion).

Additionally, further investigations into my spine MRI brought up some other concerns. Was my spine strong enough to continue daily activities? Would I be allowed to pick up my girls or should I be confined to a wheelchair? We discussed the possibility of me having to wear a body shield or clam shell to prevent further damage. Or even worse, we explored the possibility that I would need surgery to put rods in my spine for functional strength. So, in 48 hours I went from considering myself ELITE to becoming Unbreakable’s Mr. Glass (that’s an M. Night Shyamalan movie reference…circa 2000 — sorry, I love movies).

unbreakable

Fortunately, the steroids worked to reduce the inflammation and I was even able to return work the next day. Additional medical opinions claimed that despite the extensive spread of cancer in my spine, there was no threat of structural damage so no supplemental back supports are needed (however, I’m still discouraged from carrying heavy objects, including my own children). Those steroids caused me to miss (delay) my first single NIVO (Opdivo) infusion, which was supposed to take place on September 30. My current hospital stay, and subsequent steroids, will delay the single infusion at least one additional week.

I’m being discharged from my second stay at Lutheran General Hospital in a few hours. My first two hospital stays (first at Centegra Woodstock, second at LG in Park Ridge) were both single overnight adventures. My third hospital stay lasted three nights (mostly as a precaution, not as a serious need). I cannot say enough positive words about my team of oncology doctors (Richards, Hallmeyer) and nurse (Ann McGreal)…and I’m extremely appreciative of the efforts of nurses and doctors on floor 8 at LG…but to be honest, I don’t intend to come back anytime soon. I need to be home for my wife and daughters. Or more honestly, I need my wife and daughters who just happen to be at home.

If you made it this far, let me summarize the last six weeks in six quick bullets:

  • Six weeks ago I spent the night at Centegra Hospital in Woodstock, diagnosed with Pneumonia. I don’t blame them for not knowing much about cancer. But if you have cancer, I suggest going to a more knowledgeable/experienced cancer hospital.
  • Four weeks ago I had my fourth and final IPI-NIVO infusion. I was labeled ELITE. I felt great and thought I had the upper hand against my metastatic melanoma.
  • Cancer is a better opponent than I thought. It ripped away my ELITE status and reminded me how small I am. Much respect, but realize this battle is far from over.
  • Four weeks ago I spent my first night at Lutheran General Hospital in Park Ridge. Great staff, outstanding experience. I would recommend this hospital to anyone.
  • Four days ago I earned my second stay at LG. My opinion of their staff and facilities has only been reinforced. But I no longer want to have sleepovers at hospitals.
  • Moments of Weakness. Five days ago I told my wife I felt like I was dying. I wasn’t lying…but that represented a significant mind shift from the positivity and optimism my wife and I display publicly. I’m leaving the hospital in a much better state of mind, body, and heart. I’m back to where I need to be in my battle vs. cancer. But I’m not ashamed of my negative thoughts…that had to happen for me to move forward. My wife and my doctor have helped me put things back in perspective…and everything happens for a reason, right?

There are so many more people to thank. My friends and family, obviously, have stepped up with positive messages or offered to watch the girls so that I could get back to this mindset. My coworkers have been incredible, as always, picking up my responsibilities at work so that I could concentrate on healing. Facebook nation has continued to surprise me with their care and support…and I’m thankful this experience has highlighted for many how amazing my wife is as a spouse, mother, and friend. And to those I haven’t mentioned, especially those fighting cancer alongside me, know that I couldn’t do this without you. I only hope that I listen and inspire as well as you do.

The countless donations, prayers, thoughts, and check-ins have not gone unnoticed. I haven’t been able to thank everyone individually or respond to every private message…just know that they keep me motivated and falling forward when I need it most.

And words of wisdom are plentiful from authors and poets. But sometimes the young people I work with on a daily basis have a tendency to say it best:

resilience

 

 

 

 

 

July of 2010 — the Summer of Melanoma Ignorance

July of 2010 — the Summer of Melanoma Ignorance

Six years ago today. Has it really only been six years? My wife posted the Dr. Seuss quote at the top of the page on Facebook exactly six years ago. That was the day I found out the biopsy results of a dime-sized mole on my lower back (which my life lovingly named ‘Freddie’). That was the day Steven Rick officially met Melanoma. Six years ago today.

It’s surprisingly funny how ignorant I was about melanoma back then.  I showed up to my initial surgery to remove my mole and surrounding tissue…with a pretty intense sunburn. Ahhhh, the irony…melanoma…sunburn…who knew they had a preexisting relationship?!?

To briefly update everyone on my summer of 2010, the initial surgery removed “Freddie” and about an inch of surrounding tissue in all directions. That mole was then biopsied and the results indicated the melanoma had grown beyond the ‘critical depth’, indicating a higher likelihood that the cancer would have spread to other places in my body. A second surgery was immediately scheduled to remove additional surrounding tissue and two sentinel lymph nodes (one in my groin and one in my armpit). A sentinel lymph node is the first (or closest) lymph node to which cancer cells are most likely to spread from a primary tumor (a.k.a. “Freddie”). Those lymph nodes were then biospied and in 2010 I was told that the lymph nodes showed no evidence of cancer.

Deep sigh of relief. Well, six years of ignorant bliss, at least.

My wife and I handled my 2010 diagnosis very differently. I don’t think it brought us closer together (unlike my 2016 version)…in fact, we kind of chose to dwell in our own sorrow and ignorance back then. My wife replaced every doorknob in the house, changing out the original (cheap) brass doorknobs for Venetian bronze. She also replaced (or repainted) all the light fixtures. She dealt with my melanoma by committing to home improvements, even putting her own life in jeopardy by climbing a ladder stacked on the dining room table. Not safe, honey. But to this day, the doorknobs and light fixtures do look better.

As for myself, I laid in bed for 14 hours a day and binge watched episodes of the television show Dexter. I somehow connected with the serial killer/blood spatter analyst played by actor Michael C. Hall. I had heard that he was recently diagnosed with cancer and for whatever reason that created a bond between us for a few weeks. Cancer has a way of connecting people in an instant…misery loves company, I guess. My wife and I dealt with my melanoma in two completely different ways and we didn’t communicate about what we were going through (physically, emotionally, spiritually). But that summer came and went…and for the next six years I was symptom free. Again, ignorant bliss.

poster-dexter-season-2

I truly shouldn’t have been surprised by my diagnosis six years ago. Research indicates that even fewer than five sunburns in your youth can increase your risk of melanoma by 80% — I think I probably exceeded that number of sunburns during each month of my childhood. Do you remember the 1980’s…before Nintendo? Well kiddos, here’s a brief history lesson: during that decade children actually went outside to play. Like, all the time. We rode our bikes to the baseball card shop, played basketball in our driveways for hours, and before sundown we mastered the intricacies of ‘ghost in the graveyard’. I spent the majority of my childhood outside, baking in the sun…and I don’t remember using sunscreen. Ever. And even had I known better, I still wouldn’t have reapplied sunscreen every few hours as directed. Reflecting on my childhood, I truly am not surprised by my diagnosis six years ago.

But my blog is not about reviewing the pros and cons of my “sunscreenless” childhood. My goal for this post is to give other people facing their first melanoma diagnosis a little advice. My wife and I were ignorant about melanoma in 2010. Based on what we know about my condition in 2016, we would have done a few things differently.

Get Expert Opinions. Nothing against my family care physician, but when the word melanoma was first used I should have met a new doctor: an oncologist. I trusted my family doctor because, well, I didn’t know any better. Everything happened so fast…too fast. I think I was receiving news of my clear lymph nodes before I was even able to process what was happening. My doctor gave me a false sense of security…the recommendation was to get check-ups from a dermatologist every six months. In hindsight, we wish we would’ve gone to an oncologist and pursued a more aggressive follow up treatment. Interferon treatments were available…if it’s possible that we could’ve been more aggressive in 2010 and avoid what is happening in 2016, we would’ve done that in a heartbeat. Hindsight is 20/20…shoulda woulda coulda!

Don’t Google Stuff! It’s funny because in my professional life I’m as pro-Google as they come. Both in 2010 and 2016, the minute after I heard the diagnosis “melanoma” I went to the internet to do research. Both times, the first link I read posted horrendous statistics about survival rates. In 2010, days after receiving my diagnosis I remember sitting with my wife on the edge of my parent-in-laws’ pool. I had the next six months figured out (again, based on my Google research) and through a teary confession explained to my wife my rest-of-life intentions. My plan was to quit my job, buy an RV, and we were going to travel around the United States visiting National Parks. And I was serious. I had accepted impending death based on the first internet site I saw. How stupid is that? Just wait until someone else finds and shares appropriate/positive sites that use an optimistic mindset…there’s no need to be the first person to click on melanoma links.

Live Life. It’s easy to get caught up in the negativity of a medical (cancer) diagnosis. I sat on the edge of that pool, thinking my life was over…and that served absolutely no purpose. My wife and I both cried and I felt sorry for myself. I understand and support the notion that it’s okay to cry (even for guys), but you can’t live in that space for long. The truth is that we experience the dangers of society every day. No one is promised tomorrow…and dwelling on the diagnosis just wastes the positive moments you could be experiencing.

I’ve had six years to forget about the summer of 2010. And besides a few random memories, I hadn’t thought about melanoma at all between 2010 and 2016. About two months after getting the ‘all clear’ from my 2010 lymph node biopsy, my wife found out she was pregnant with Evelyn. You could only imagine the roller coaster of emotions we went through…the worst days of my life (at that time) quickly switched to the happiest experience. We quickly moved on from melanoma. Maybe we moved on too quickly.

253510_10150199962437121_7521868_n 298167_10150324352657121_1223754437_n

But that quote at the top of the page summarizes a common mindset between 2010 and 2016. The problem for cancer is that my wife and I are on the same page. I have a lot more reasons to fight. And in the last six years science has developed much better bats.

Batter Up…I intend to swing for the fences!

 

Support and Publicity…a simple THANK YOU!

Support and Publicity…a simple THANK YOU!

Thank you.

For every card, Facebook post, private message, phone call, text, fruit salad, meal, donation, positive thought, and prayer. You (collective) have allowed me to attack my cancer with optimism and positivity. Most of this war’s battles are yet to come, but having your strength and encouragement behind me gives me the daily support I need.

And I’m not alone. I’m fighting a similar battle with numerous friends (some new, some old). Cancer doesn’t discriminate and almost everyone I’ve met has had their life impacted by cancer in some way, either directly or indirectly. But united we stand…and no one fights alone.

To Stephanie Price and the Woodstock Independent newspaper, thank you for the wonderful article on July 7, 2016 that highlights the support of the greater McHenry County community and acknowledges my hermano at Woodstock North High School, Miguel Rodriguez.

Woodstock Independent Article (July 7, 2016)

To Julie Maher, Krysta Ricker, and Courtney Gotsch, thank you for setting up a YouCaring.com page in our name. The financial support will allow us to fight cancer from multiple perspectives. And to those that have donated or otherwise left positive comments, we cannot thank you enough. We just started this journey, but cancer is expensive! Your words of encouragement and inspiration are just as meaningful.

YouCaring.Com Crowdfunding Site

It has been wonderful connecting with family members, friends, neighbors, colleagues, former teachers, former students, and even complete strangers. A simple ‘Thank You’ to all of those people isn’t enough. We pledge to defeat this cancer and pay it forward to others in need. Thanks for modeling compassion and creating a future of hope.

The Itch That Can’t Be Scratched…and Another Sleepless Night.

The Itch That Can’t Be Scratched…and Another Sleepless Night.

It’s 3 am.

I can’t sleep.

I’m three hours removed from my fifth Aveeno Oatmeal-Infused Soothing Bath Treatment of the week and I can’t stop scratching nearly every inch of my body. Yes, I’ve been taking baths…infused with oatmeal…but no worries, my Man Card was revoked long ago. If you need further evidence, just realize that I’m watching this week’s episode of the Bachelorette as I type this. Guilty as charged, but remember… *activate sad face and somber voice* “I have cancer”. And in case I had forgotten, I’ve been reminded that I have cancer 24 hours a day. Every. Single. Day.

This has been a very difficult week…and despite the patience and love of my wife, I’ve experienced very few positives this week. Most of my blog posts have a positive spin — I’ve adopted the positive mindset and believe in the power of staying optimistic. It’s 3 am, I can’t sleep, and I don’t feel like projecting a positive attitude to the rest of the universe. Let’s get real…let’s get raw. I’ll probably post a few pictures…if you don’t want to see images of what I’m talking about, close out this post now.

A week ago I was in a very different place. I had my first IPI-NIVO infusion and had been told that I shouldn’t experience side effects from the infusion for another six weeks. I felt good and had plenty of reasons to think positively. My children were going to be out of the house for a few days with the grandparents, meaning my wife and I would be reminded what it would be like to sleep in past 6:30 am (okay, truthfully my wife let’s me sleep in much later than she does — have I mentioned how awesome she is?!? I dead snake her…like a lot.). So, we slept in on Saturday and when I awoke I found myself physically sore (most likely from my bone strengthening injection of XGEVA). Simple side effect, no big deal — in fact it went away by the end of the weekend.

Fast forward to the 4th of July…with most people posting pictures on Facebook of parades and firework extravaganzas, I woke up with a rash. Pretty harmless at first, but bad enough to contact my oncologist that evening. It’s already frustrating that I’m hyper-sensitive to the sun and I’m not allowed to go outside during the daytime…but even worse when I get ‘sunburn’ type rashes on my body while staying inside all day. And to rub salt in the wound, prior to my cancer diagnosis a month ago my wife and I had planned on hiking in Colorado in celebration of our 10th-year wedding anniversary. Things change pretty quickly sometimes. I can only hope things change back just as quickly.

So, here are a few images from Independence Day:July 4

Subtle redness…ankle, neck, and hands. Not a big deal and I earned myself a prescription of a steroid dose pack. But keep in mind, I haven’t even really been out in the sun. I have prided myself on protecting myself from ultraviolet radiation…clothes with SPF protection, sunscreen, lip balm with SPF protection, and who could forget the floppy hat revolution:

de0bcc0c-abdc-42e3-bbb5-a9cb483a346d

So despite my best efforts to stay sun-free, I end up with a sunburn type rash on a few extremities. It’s painful, but definitely better than experiencing the symptoms of cancer.

But the week is far from over.

On Tuesday morning, the rash has started spreading. It has started crawling up the leg and down the arms…even appearing on my face a little. Again, it’s a side effect of medication…not a side effect of cancer. There’s a difference…and for those of us that suffer from cancer, we’ll always take the side effects induced by medicine. It sounds like I’m complaining…but on Tuesday morning I really had nothing to complain about. The morning is painful but I find a way to stop into work. I’m able to joke around with colleagues and project a happy face to the world…after all, I’m the super happy guy fighting cancer with positive energy and a smile, right? Well, let’s start peeling apart the layers.

Here’s where we are at as of Tuesday morning:

July 5am

I stop by my sister’s house in the hopes that her nursing background will offer me some comfort…a simple explanation…a promise that things will get better soon…maybe even a magic potion. No such luck. By that evening, the rash is looking even worse:

July 5pm

So, we schedule an appointment with my oncologist and he explains that this is common with the Zelboraf prescription. He claims that I must’ve somehow been exposed to the sun…and that answer seems to make sense, as the rash only seems to be in places where my skin would be uncovered. But again, it’s only Wednesday. On Thursday, I wake up with a rash on my entire back and chest (I’ll save you the discomfort of images, but I think you get the idea). We ramp up the steroid dosage and the oncology team is optimistic that the rash will start going away. No such luck. The rash is still spreading…and in places where the rash started, things are looking much worse:

photo (7)

Fast forward to Friday for another meeting with the oncology team. The rash spreading to areas not exposed to the sun leads to the conclusion that the rash is now a result of last week’s IPI-NIVO infusion…something supposedly rare to have someone show side effects so quickly. The good news is that the rash is an indication that the IPI-NIVO is doing it’s job…and it should be attacking my cancer cells as well as it’s attacking my skin pigment. The bad news is that my oncologist mentions in passing that I’ll probably end up with albino-like skin (and that’s not meant to be a shot at people that suffer from albinism…just not something I was expecting to hear). But again, side effects from medication are preferred to side effects from cancer. The oncology team gets me intravenous benadryl and intravenous steroids…and I feel quick relief. I take a nap and my rash looks better. And then, around midnight, everything seems to be back where it started.

So, after a long bath and 75 milligrams of Benadryl, I’m back at square one and confessing my frustrations through a blog post. It has been yet another sleepless night…and I’ve been wanting to itch EVERYWHERE while I’ve typed this entire post. I’m nervous. If the IPI-NIVO is working, that’s good news…right? The steroids I’m currently on will delay my second infusion…but what side effects will present themselves with round two? As far as the ‘itis’ options go, dermatitis is probably the least worrisome. I don’t like it, but I’ve learned I can deal with what it has to offer. Is this the worst side effect that will happen over the next ten weeks? Or will I be looking forward to colitis, pneumonitis, and hepatitis? Regardless, I’ll try to handle them with a smile and optimistic attitude.

But in this moment, don’t talk to me about revoking my Man Card…the Bachelorette just ended and I’m thinking of drawing myself another oatmeal-infused bath.

 

I’m officially a member of the X-Men…Phase I Treatment Begins!

I’m officially a member of the X-Men…Phase I Treatment Begins!

So, before you ask “why didn’t you use a picture of the actual X-Men…or at least a picture of Deadpool?” to help accentuate your title, please realize that I’m playing the odds due to my financial limitations. The chances are greater, despite breaking copyright laws by stealing pictures off Google images like any 14-year-old doing a PowerPoint presentation for every subject in school, that the creator of the Super Pill image is less likely to sue me than Stan Lee and Marvel Comics. In either case, I would hope the image creator would feel honored that I used their creation. And if that didn’t work, I guess I’d put my tail between my legs and ask forgiveness…because after all, *activate sad face and somber voice* “I have cancer”.

It’s amazing how much of an emotional response you get out of people the moment they hear that you have cancer. I’m still relatively new to the ‘cancer club’, but I don’t feel like any more or any less of a human being than I did two months ago prior to diagnosis. And yet, people look at me now with genuine concern…they talk to me with increased sincerity…and they offer to do crazy things like mow my lawn, cook and deliver great meals at dinner time, or walk my dog — simply because I have cancer.  I fully expect those interactions will go back to “normal” once I successfully beat cancer (spoiler alert, it’s going to happen!). I’ll still have a lawn that needs to be mowed…my stomach will still growl when hungry…and my dog will still want to urinate on every bush and shrub on Serenity Lane (sorry, neighbors). But I’ll be able to do those things for myself in my cancer-free body. People will treat me the way they did the first 39 years of my existence…and no one will care what I write in a blog. Enjoy this while it lasts, folks.

But since you’re still reading, let me tell you a story about how there are magical pills that reduce cancer (at least temporarily) for some people. I’ll try to keep this as general as possible, since most people reading this will not necessarily care about the science involved. Generally speaking, cancer cells multiply and grow by damaging the DNA within a cell’s nucleus. There are FDA-approved pills that disrupt the message that leads to a cancer cell’s nucleus, thus keeping the cancer cell from multiplying (growing) and sometimes leading to death of the cancer cell.

In order for these pills to work, the cancer-having participant must have a genetic mutation known as V600E BRAF. Roughly 50% of the population has this mutation…and I am in the lucky half. For theses “mutants” to which I belong, oncologists will generally prescribe two different types of pills for phase I (targeted therapy). The first pill, which disrupts the initial signal of the cancer receptor, is known as vemurafenib (Zelboraf). The second pill, which disrupts the second level of the protein pathway, is known as cobimetinib (Cotellic). Used in combination, these drugs have shown remarkable success in shrinking cancer for most people with the BRAF mutation. Unfortunately, cancer is a Sneaky Snook (can you tell I’ve watched too many episodes of Disney’s Jake and the Neverland Pirates with my daughters?) that eventually mutates around these inhibitors…and the cancer cells continue to grow/multiply. The pills are not a cure — but build a temporary bridge to more effective (and sometimes permanent) treatments known as immunotherapy (see my phase II blog post).

I saved the voicemail that was left for me from my oncologist Dr. Richards, and I listen to it once a week to give me strength: “I just wanted to let you know that the mutation analysis, I have been verbally informed, is positive!” He goes on to explain the next step would be to get Zelboraf and Cotellic in my possession as soon as possible, once insurance approves the final report on my mutation analysis. I’ve saved almost every message I’ve received from Dr. Richards and his team so far, because to date every voicemail message has contained positive news. But this message was the first one I saved and I easily recall why it has the most meaning to me. I remember missing his phone call in the first place because I was sleeping 16 hours a day and I was miserable…back pain, coughing, wheezing, shortness of breath…all symptoms of the cancerous tumors that had invaded my neck, lungs, and spine. I was at my lowest point (both physically and mentally) and I started to believe that cancer would take my life, possibly before I reached my next birthday.

Side note: Anyone that knows me knows how much I enjoy going to the movies. My next birthday, on February 19, 2017 will be my 40th trip around the sun. My wife has already been instructed that for my 40th I want one of those birthday parties where they rent a room in the movie theater and serve pizza/Coke, then go watch a movie. I’m not sure what will be showing eight months from now (probably one of the umpteen Star Wars spin-offs), but I can guarantee I will be smiling ear-to-ear throughout the entire movie…and orange sherBET will be served for dessert. And if anyone thinks that’s a stupid or immature party idea, please remember… *activate sad face and somber voice* “I have cancer”.

Back to the story. So, I receive the call that I’m a mutant on June 13 (11 days after diagnosis) and that’s the first spark of optimism I had since diagnosis. Unfortunately some insurance issues only made the first pill (Zelboraf) available the following day, but Dr. Richards wanted me to start with that until we could get the second pill approved. Now go back and look at the picture of the super pill at the top of the post — that’s what I took. Zelboraf (the SUPER PILL) had been in my system for about five days and I felt like a completely different person. No more coughing and wheezing. No more sleeping away most of my days and nights. I could stand up straight with no back pain. The lymph nodes sticking out of my neck were visibly smaller. I was, in essence, Steve again. We celebrated my wife’s (ahem) 29th birthday (again) that Saturday night (5 days after starting Zelboraf) and I was back to my usual self — smiling, laughing, walking with a spring in my step. Here’s a picture from that night:

13495319_10153514961912121_6559551796705589048_n

We had dinner at our favorite restaurant (Seasons 52 – Schaumburg) and celebrated the progress that had occurred in less than a week. We were excited about the second pill (Cotellic) which I had just started the day before. Things were looking up. Cancer wasn’t that bad. Did I just say that? Jinx.

The next day, I started to noticed a weakness in my feet. Nothing too extraordinary, but it would have impacted my Olympic bid as a world class sprinter. The day after that, the weakness in my feet turned into joint pain. Then the other side effects started to kick in: blurred vision, chills, fevers, night sweats, rash, blemishes (spots) all over my body…all completely normal and somewhat expected when taking toxic medications, according to my oncologist. I was instructed to immediately stop taking the second pill (Cotellic). Three days later when the symptoms had not disappeared yet, I was told to stop taking the first pill (Zelboraf). Evidently the pills that had offered me so much relief initially had pushed my body to the limit…the toxicity was too much…and my body wasn’t happy.

We were originally told that we would be in Phase I for 6-8 weeks before moving on to Phase II. Well, it turns out that Phase I was only going to last 2 weeks. The side effects of the pills — combined with the noticeable positive progress I had thus far — changed the timeline. Phase II was going to start 11 days. I was about to graduate to another cancer treatment…IPI-NIVO (see post on Phase II for more details). And I was, once again, terrified at the potential side effects of my new medication.

My wife and I have numerous discussions about how cancer has given my life a ‘new normal’. I will be on some type of medication (and/or supplements) for the rest of my life…that’s my new normal. There will be days when I feel great and other days when I’m experiencing painful set-backs…that’s my new normal. I will instantaneously make connections with other cancer sufferers/survivors (and their family members) everywhere I go…that’s my new normal. People will look at me and talk to me differently just because I have cancer…that’s my new normal. The truth is, it’s highly unlikely that I’ll ever truly ‘beat’ cancer. I will fight like hell and celebrate victories with family and friends. I will go through periods (hopefully years at a time) where I’m essentially cancer free (my cancer colleagues refer to that as being NED — no evidence of disease). But I will also wake up every morning and take inventory of every bump, bruise, thought, and feeling — wondering if it’s connected to my medication or the re-emergence of cancer cells…that’s my new normal.

On the flip side, every one of my daughters’ giggles has more meaning to me. Those moments when my wife looks into my eyes and tells me how much she loves me, carries more significance. My dog, Bauer, who used to annoy me by following me around the house all the time wanting to play fetch, now has moments of my undivided attention. I’m more aware of my surroundings and more appreciative of the tiny efforts that used to go unnoticed…those are also examples of my new normal.

People always only talk about the negative aspects of cancer. Don’t get me wrong…I’d rather not be diagnosed with Stage IV Metastatic Melanoma, but why not take advantage of my new normal. I’m 25 pounds lighter than I was prior to diagnosis — my clothes fit better and I have a lower BMI. I look forward to holidays and birthdays, even my own, instead of just going through the motions. I’m eating healthier than I ever have in my life…and trust me, my wife has been trying to convert me for years. Speaking of my wife, our marriage is stronger than ever and cancer has rejuvenated our friendship. Those are all ‘new normals’ that cancer has brought to the surface. Let’s celebrate those positives!

My BRAF mutation may not make me X-men eligible, but my hyper-awareness and analysis of life vs. death has made me appreciate life’s little moments much more. The day will come when I’ll have to return to walking my own dog around the block. Delicious meals will stop arriving at my door, randomly. I’ll be expected to do my own yard work. And no one will read this blog.

I’m not sure where the rest of this story is going to go, but I can assure you there will be ups and downs. And I will continue to document them in the hopes that this helps someone suffering through a life-threatening disease…or gain an understanding of what a loved one may be going through in their own battle with cancer. I’m no longer allowed to write this blog for solely my own benefit…that’s my new normal.

 

 

 

 

Immunotherapy…Starting Phase II of the Treatment Process

Immunotherapy…Starting Phase II of the Treatment Process

So it comes down to this. My life…my future…my existence…comes down to two very important words:

Ipilimumab and Nivolumab

Ah, it just rolls off the tongue, doesn’t it. I’ve lived 39 years on planet Earth and I’ve heard my share of health advice (“get 8 hours of sleep per day”, “get 150 minutes of moderate aerobic activity per week”, “better eat your Wheaties”) — but now, in order to live a “healthy” life moving forward, the advice I’m adhering to is “get your Ipilimumab and Nivolumab infusions”!

Admittedly, it’s easier to call my survival agents by their shortened nickname: IPI-NIVO. Those are the drugs that will be used in combination to “release the breaks” on my immune system, allowing my own body to attack the cancer cells within me. IPI-NIVO also makes for a better reference on a future tattoo…not sure where on my body I would fit “I responded to Ipilimumab and Nivolumab”! Cancer treatments, especially those used against advanced melanoma, have undergone a revolution of sorts in the last five years. Call me lucky…if there were ever a time to be diagnosed with stage iv metastatic melanoma, it’s now. The truth is that doctors have a better arsenal of weapons to fight melanoma than ever before…and the best weapon at the current time is IPI-NIVO. That’s not the only weapon available, but given my condition and my age, that’s probably the most aggressive treatment (not offered as a Clinical Trial) that has evidence of success — and so, I place my life in the hands of Ipilimumab and Nivolumab. In IPI-NIVO, I trust.

For those of you that just jumped to this post and you’re wondering how this is ‘phase II’, please refer back to my phase I blog (Introducing the Newest Member of the X-Men).

I received my first infusion yesterday, at my Oncologists’ office located in a strip mall. The ride to the office was unbearable. I tried to play it cool, but I was a nervous wreck. All I had done for the last week was look up the side effects of IPI-NIVO (or, if you’re playing at home, these drugs are often referred to by their Bristol-Myers Squibb birthnames: Yervoy® and Opdivo®). Wait, there are potential side effects to your life-saving treatment? Yes, of course. Would you like a rundown on my potential reality? I thought you’d never ask!

Here are the potential side effects of my IPI-NIVO treatments:

  • Fatigue – big deal, so I get to take more naps (sarcasm). This is probably a given.
  • Skin Issues – rashes, itching, new lesions, skin peeling (yuck!).
  • Colitis (intestinal problems) – diarrhea, blood/mucus is stool, abdominal cramping.
  • Pneumonitis (lung issues) – new/worsening cough, chest pain, shortness of breath.
  • Encephalitis (brain inflammation) – headache, fever, memory problems, seizures.
  • Hepatitis (liver problems) – yellowing of skin/eyes, nausea, vomiting, bleeding/bruising.
  • Hormone Gland Problems – thyroid, pituitary, and adrenal glands could stop working.

And then there’s the black box on the medical wallet card that simply states death as a potential side effect. Thanks for that one. Warm and fuzzy.

Of course, more likely is that I’m a lucky one…that my positive energy, genetic make-up, and prayers from friends/family result in only the most minor of side effects. Yeah, I’m going to go with that option. And I should note that my oncology team has been using these drugs for longer than they’ve been approved (they were part of the Clinical Trial that got these drugs FDA approved). They’ve seen all the symptoms and they know how to manage them…I’m in good hands.

Back to the car ride. I’m a nervous wreck and my wife is verbally abusing every driver on the road — no worries, they can’t hear her. And yet, she feels the need to critique their ability (or inability) to follow rules of common courtesy on the road. My wife and I have a running joke between us…that if for no other reason, I have to beat cancer because if she’s the one that teaches my daughters how to drive then humanity is screwed. For some reason, I don’t let things (like other drivers on the road or students that call me a Dick — for the record, it’s pronounced Rick) bother me. Somewhere between college and adulthood I lost that trigger mechanism that upsets me…it drives some people close to me nuts, but the truth is that I don’t sweat the small stuff. Well, except for my wife’s driving…

My wife and I get into a meaningless argument during the car ride about not answering a question I asked…and it reminds me of the first time I said “I love you” to her. We were taking a walk up in Green Bay, having a delightful conversation when something possessed me to say “I love you” for the first time. Unfortunately, at the exact time I said it we were stepping over a dead snake (it’s not uncommon to find dead animals on the road that leads to the in-laws house on the Bay). So, my next words that followed ‘I love you’ were ‘oh, shit’. Of course, I was referring to the dead snake that I almost stepped on…and not in reference to my declaration of love for my future wife. But she didn’t take it that way…so we walked in silence for another 30 minutes (she’ll claim it was only five minutes…but I’m the one with the blog so I get to tell the story the way I want). The point is, the argument in the car was stupid and was truly just a way for me to displace my fear and anger about my impending treatment. To this day, I have no problem telling my wife that “I dead snake her”…and she somehow finds that endearing.

If you can’t tell, cancer has a funny way of reminding you of random (meaningful) memories…that’s has happened a lot in the last four weeks. Wow, has it only been four weeks?!?

So, I sit down for my very first IPI-NIVO treatment. All the worries about side effects are placed on hold as my doctor describes that the majority of people don’t really feel the side effects of the medication until the third treatment — in other words, IPI-NIVO will hold my fears hostage for another six weeks. I’m scheduled for four infusions, as they are called…each one three weeks apart. Some people only get through two infusions before the side effects create a need for an alternate treatment plan…others can get through four treatments with no problems. Fingers crossed on four treatments with no side effects.

My wife and I strike up a conversation with two brothers sitting next to us. The one brother has a rare case of cancer and just got back from MD Anderson (TX). He’s involved in a clinical trial that pretty much involves blood transfusions where they inject your blood with healthy T-cells and then inject it back into your body — crap, is that what’s next for me? He explains that he was diagnosed five years ago and IPI-NIVO wasn’t even available when he was diagnosed…so I’m “lucky”. He and his brother are so kind…are my wife and I that nice? If we are not, we need to be. They share their story and ask about what I’ve gone through…I’m a newborn compared to his experiences.

Across the way we start up a conversation with another young man…my wife and I both think he’s in his twenties, but later on it’s revealed his in his mid-to-late 30s. According to him, he was the second person in the greater Chicagoland area to undergo the IPI-NIVO treatment. We find comfort in his experiences as he explains that IPI-NIVO was great, it essentially removed/shrunk 90% of his tumors and his only side effect was constipation. Ummmm, that sounds promising…I can learn to enjoy prune juice. Unfortunately, since his IPI-NIVO infusions he’s been unable to shrink the remaining 10% of tumors…leading to experimental injections directly into his remaining tumors. I hear the nurse talk to him about his pain and the need to reduce his dosage of morphine. This was my first realization that there’s probably still a long battle ahead after IPI-NIVO. Buckle up, it’s going to be a bumpy ride.

Betwixt (I always wanted to use that word..the blog seemed like a perfect opportunity) my IPI and NIVO treatments, I’m taken to a very cold room for another CT-Scan. I allow my claustrophobia to get the best of me, freaking out in the middle of my scans. Remind me next time to carry anti-anxiety pills on me any time I go to the doctor’s office. The purpose of the CT-Scans today is meant to provide baseline data so that they’ll be able to tell the effectiveness of the IPI-NIVO treatment. The technician is very patient with me as I eventually calm down and get the scans done. We are told that we won’t really know if IPI-NIVO worked until six weeks after my last treatment (my last treatment is scheduled for September 2…so for those of you good at math, I won’t know if IPI-NIVO was effective for me until October 14). That’s approximately 19 weeks after diagnosis.

Nineteen weeks. In nineteen weeks I will have gone from my entire world crashing in on me to possibly being cancer-free. Realistically they’ll never be able to call me cured. That’s not a word they are allowed to use in stage iv metastatic melanoma diagnosis. Instead, I hope I get to use some new terms and nicknames in my cancer status. If IPI-NIVO is successful, I’m referred to as a RESPONDER. That’s not sexy, but my wife is already making “I responded to IPI-NIVO” t-shirts. I call dibs on the first one. Another term/nickname that’s often used in the cancer world is NED…that’s the nickname I want. It stands for ‘No Evidence of Disease’. It may be a temporary diagnosis, as metastatic melanoma is known to resurface and rear its ugly head in other places, but if I can get to NED status I have given modern medicine time to develop new treatments…I will have created new memories with my daughters and gotten that much closer to walking them down the aisle.

Let’s end this on a positive note. As I finished my IPI-NIVO treatment, Dr. Richards came out to visit me. He had the results of my CT-scan…AND. THEY. WERE. POSITIVE. We knew anecdotally that stage I was successful…lymph nodes had visibly shrunk to the naked eye, no more coughing or shortness of breath, fatigue had subsided…but we didn’t have physical evidence. Dr. Richards said the results were positive. My wife, not accepting that as an answer, asked Dr. Richards for a more specific analysis. She asked, “if you had to put a percentage on how much Steve’s tumors have shrunk, by how much have they been reduced?”  His answer, without blinking, was 95%.

Come again?!?

Phase I had successfully reduced my tumors by approximately 95%. Now, that’s not an exact number as Dr. Richards was just put on the spot by my wife…but as approximations go, I’m not going to complain about a 95% reduction. Furthermore, he explained that the CT-scans showed no evidence of tumors in my lungs or liver anymore. And all of this was coming off the heels of my bone survey, in which the doctor examining my bones and comparing them to a PET-scan two weeks prior refused to believe it was the same person being tested. He said my bones showed no evidence of cancer anymore…and that it was “nearly impossible” for that to happen over a two-week period. Maybe those were magical pills in phase I. Maybe cancer truly does hate asparagus. Maybe there truly is power in prayer.

95%.

In my professional life, that’s a solid A. In my cancer life, that’s not good enough. I need to keep fighting until it’s 100%, an A+. And there’s no extra credit available, kiddos. I have three more IPI-NIVO infusions and an additional 6 weeks after that before I know my next percentage…Nothing less than 100% will do. Even if I’m at 100%, I’m facing a new reality…injections every other week for the next two years, scans every 6 weeks, an immune system that won’t shut off and as a result, will probably destroy my thyroid gland. A hyper-awareness of any symptom that needs to be reported to my oncology team for the rest of my life…the “sniffles” are no longer a symptom I can simply ignore.

I’m not a superhero. And I’m definitely not super-human. But I’ll settle for being a dad that walks both his daughters down the aisle. And it doesn’t do me any good to get 95% of the way to that goal. I’m still a slave to modern medicine. I’m still forced to eat asparagus every day (thanks Cindy, I dead snake you). And I’m still accepting of your positive thoughts and prayers…keep ’em coming. This war is far from over.