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).
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: