Episode II: April 2023 Update
Coachella, My Cancer Timeline, and Remembering a family Matriarch
Welcome to the second edition of Mainwaring Monthly, a newsletter where I share my personal updates going on in my life. I found myself pleasantly surprised (and humbled) by some of you who opted into my newsletter, and I hope that I can live up to your expectations for insightful and inspirational content.
Life: Coachella
This month I had a carpe diem opportunity and joined my friends Ashley Rogow, Ryan Wallenstein, and Chris Jensen for Weekend 2 of the Coachella Valley Music and Arts Festival. Since we were flying 2,000 miles to attend the festival, camping wasn’t exactly a practical option, so we opted to lodge instead at the Renaissance Palm Springs Hotel in Palm Springs, California and traveled by shuttle bus each day to the festival. Over the weekend, we got to see performances from many different artists, including Gorillaz, Whyte Fang, Eric Prydz, Blink 182, Björk, and Skrillex/Four Tet/Fred Again.
While I won’t be incorporating Coachella as an annual routine, I was very grateful to cross this item off my bucket-list and attend such an iconic festival.
Cancer: A Timeline of Events
As mentioned in my March Update, I promised to share the backstory on my cancer journey, and this month I’m delivering on that promise. A lot of emotions were stirred up as I put words these words to paper; while I always presented myself as optimistic in conversation, this timeline depicts how grueling the journey has been. Admittedly, it’s a lot of information to consume, but I’ve broken this holistic account of my journey up by month to make it a bit more digestible.
December 2020: I first notice symptoms (constipation) that will eventually be diagnosed as Stage IV cancer while home for Christmas. I attempt to address the problem using over-the-counter options but by New Years Eve, I accept that I should go see the doctor.
January 2021: After two visits with my family doctor, I’m referred to a colorectal specialist with the AMITA Health Care Network. The earliest consult appointment with the specialist is for the end of February.
February 2021: Symptoms begin to impact my plans and daily routine. A previously planned trip to Mexico with my then-girlfriend is scaled back so we don’t venture beyond the resort, and the 2021 boys trip to Colorado was the tipping point where the symptoms progressed into physical pain. After a consult with the specialist, a colonoscopy is scheduled for the end of March.
Trying to enjoy life, but privately I was spending more and more time dealing with symptoms. March 2021: Physical pain sends me to the AMITA’s Emergency room twice at the beginning of the month. Neither visit produces a diagnosis of my problem, and the ER refuses to provide any kind of pain medication for my physical discomfort (opioids worsen constipation). One hour prior to my scheduled colonoscopy, I’m informed by the hospital that my procedure was cancelled due to a positive covid test. Because I showed no symptoms, I immediately seek a second test to validate if I’m asymptomatic. That second test returns negative and the hospital reschedules my colonoscopy… for the end of April 🤬.
My emotional state after having my Colonoscopy cancelled due to a false-positive COVID test April 2021: The only relief I have from the pain is to take hour-long hot baths, multiple times each day. At this point, symptoms have overtaken daily life and I’m unable to socialize or work in a meaningful way. My then-girlfriend convinces me to seek a second opinion with Northwestern Medicine, citing their status as a world-class health system. I arrive at Northwestern’s ER department on April 14 and they immediately discover a 13cm tumor blocking my digestive tract. I am transferred to inpatient care and begin a two-week stay at the hospital. My diet is restricted to chicken broth, Ensure, and water to avoid compounding the backlog of waste blocked by the tumor. I undergo a week of tests (Colonoscopy, MRI, etc) before my Colorectal surgeon Dr. Mohammad Abbass performs a diverting loop sigmoid colostomy, restoring my ability to eat normally.
May 2021: This was rock bottom on my journey. While the surgery is successful, it requires me to wear a bag to go to the bathroom, and I still have an uncontrolled tumor growing in my colon. Pain management requires a high volume of Oxycontin with medical marijuana to bridge the gap between doses. My romantic relationship ends shortly after being discharged from the hospital and I’m left alone at a time when I’m forced to contemplate my mortality. I make the choice to not focus on what I’ve lost, and instead focus on becoming 1% better every day. Once I’m sufficiently healed from surgery, I undergo two additional outpatient procedures to install a port in my chest and kidney stent.
June 2021: I’m served a reminder about the seriousness of my diagnosis when my Aunt Colleen passes away from her battle with cancer days before my first treatment. My Oncologist, Dr. Aparna Kalyan begins treating me with chemotherapy every two-weeks to attack the cancer in my body. The 48-hour IV treatment immediately addresses the pain I was experiencing, but the drugs themselves take a toll on my quality of life. I’m unable to drink liquids colder than room temperature, I experience a frequent & uncontrollable nausea, and develop nerve damage in both my hands and feet. In addition to my treatment plan, I begin participating in a clinical trial studying the benefits of Vitamin D on colon cancer.
July 2021: I receive a Medical Marijuana license from the state of Illinois. Marijuana had already been a part of my treatment plan, but as a qualified medical patient, my in-state dispensary expenses are now reduced by 40%. The cumulative impact that cancer has on my professional performance in 2021 forces me to forgo the annual raise I normally receive, impacting both my current and future earnings.
August 2021: I develop additional side effects from treatment, with hiccups so intense that I would suffocate for brief periods of time (incredibly scary). My best friends Evan Clough, Chris Bradley, and Tyler Probst come to Chicago for a long weekend to boost my spirits; we go to the S&I Museum & a Cubs game. The series of treatments takes its toll on my immune system and we’re eventually forced to pause for a round. I’m given an injection of Neupogen, which was very effective in rebounding my immune system, but also extremely painful in the days that followed.
September 2021: My lab results stabilize, and I find myself in a healthy enough position socialize more frequently. The kidney stent is removed.
October 2021: I feel healthy enough that I resume my gym membership and begin a physical therapy of-sorts to regain the fitness I had before the pandemic and cancer. I begin taking 1 class a week but am prone to rolling my ankle frequently due to the nerve damage in my feet. I am finally free of the fog from using so many opioids in the spring and my mental capacity returns to 100%.
November 2021: Dr. Kalyan delivers good news that the treatments have so far been successful and that we can start working towards reversing the colostomy surgery. I discontinue taking Oxaliplatin to stop the progression of nerve damage.
January 2022: I receive a reality check when asking Dr. Kalyan about my remaining treatment plan. Best case scenario, treatment is measured in years, but it’s possible I require treatment for the remainder of my life. The cancer test Signatera is added to my treatment plan within days of FDA approval, providing a new signal by measuring how many cancer cells I shed into my bloodstream.
March 2022: Dr. Abbass schedules me for a colonoscopy to evaluate if I’m ready to have the colostomy surgery reversed. The colonoscopy results show promise, but Dr. Abbass errs on the side of caution and recommends a second colonoscopy after a few cycles of treatments and scans. The nerve damage in my feet finally improves enough for me to exercise 4-5 days per week.
April 2022: My oncology team orders a new genetic test from Tempus, a Chicago-based health startup enabling more data-driven decision making with cancer treatments. Coolest thing about this test? My close friend/business partner Hunter Lane is the Senior Director of Product at Tempus, and contributed to bringing this test to market. Because of the work of Hunter (and all of Tempus), I now have an immunotherapy option should my cancer become resistant to chemotherapy.
May 2022: Hospital systems across America experience a shortage of contrast dye used for CT scans. My routine scan is delayed 1 month to prioritize those who are less healthy than myself. I end up being interviewed by the New York Times regarding the dye shortage, but my story does not make the published version of the article.
August 2022: Dr. Abbass performs a second colonoscopy towards the end of the month.
September 2022: Dr. Abbass schedules me for an colostomy reversal in November. To prep for surgery, the drug Avastin is removed from my chemotherapy treatment plan.
October 2022: I travel for the first time while actively receiving chemotherapy to be in attendance when my close friend Aaron Coney received the Haworth College of Business Emerging Leader Alumni Award from our alma mater. As a former student employee of WMU’s athletic department, I arrange all-access field passes for Aaron and myself to the football game that weekend. While on the sidelines, I run into Jim Culhane, formerly WMU’s hockey coach; now Senior Director of Athletics Advancement.
November 2022: I check-in to Hotel Northwestern a second time for a three-day stay to have my colostomy reversed. I declare victory with this milestone achievement as it restores the quality of life I had prior to the onset of symptoms. I’m also referred for acupuncture to help rehabilitate the nerve damage in my feet, but the treatments don’t produce the desired results after several weeks and I decide not to continue.
December 2022: Out of an abundance of caution, I check-in to Northwestern’s ER due to pain and unease with the look of my surgical wound. A CT scan verifies that the internal stitching is still intact, and the pain subsides a week later. I complete my recovery by the end of the month, and Dr. Abbass schedules a follow-up colonoscopy for mid 2023.
January 2023: With surgical recovery complete, Avastin is added back to my chemotherapy treatment plan. My routine CT scan returns a result showing a small, but measurable amount of cancer growth. Dr. Kalyan elects not to alter my treatment plan right away, instead waiting for my next CT scan to see if the observation is an outlier or a trend.
March 2023: My next CT scan validates the growth trend observed in January, and Dr. Kalyan alters my treatment plan. I’m taken off the clinical study after 24 months and Camptosar is added to my routine. I begin to experience challenging side effects again as a result of the changes (sans nerve damage).
April 2023: I enter my third year as a Stage IV Colon Cancer survivor, and celebrate all the hard work by spending a long weekend with friends attending the Coachella Music festival in Southern California. Side effects continue to be a challenge, but I manage.
Upcoming:
I’m still plotting my next international travel, but I am looking forward to what I have booked so far for escapes and entertainment.
June: Electric Forest ⚡️🌲. This will be my first return to the music festival since 2019.
October: I make my return to the iconic Red Rocks Amphitheatre for one of my EDM favorites - Black Tiger Sex Machine!
Remembering: Ann Russo
Genevieve Ann Russo (Grandma Russo) passed away on April 22, 2023 at the age of 84 in Muskegon Michigan. The Matriarch on my mom’s side of the family, Grandma Russo was frequently involved in my childhood. One of my most cherished memories with Grandma Russo was our trip to Niagara Falls in 1994. I accompanied her and my Uncle Tom on a roadtrip, traveling through Canada via Port Huron, MI. It was the first time I recall leaving the state of Michigan, and very much my first time leaving the United States.
Grandma and I didn’t stay as close after I moved away from the Muskegon area to start my undergraduate studies at Western Michigan University, but whenever I did see her, she would always tell me about how proud she was of the man I became and my accomplishments.
Rest in peace Grandma, hug my mother and Uncle Jose for me.
Other Highlights
Architecture Tour: Next time you’re looking for a touristy thing to do in Chicago, check out the Architecture tour from Shoreline Sightseeing. The 75 minute guided tour travels up and down Chicago’s river to tell the story of all the famous buildings and history leading to the Chicago we know today.
Super Mario Bros: Chris Pratt, Charley Day, and Jack Black do the iconic Nintendo property justice with their voice acting in a film that will become a hit classic. Strongly recommend catching this movie in theaters.
Glorious Cannabis: I never considered myself a brand loyalist with cannabis until I discovered this brand’s infused prerolls. Next time you’re picking up from a dispensary in Michigan or Massachusetts, grab yourself one of their products.
Copley’s Palm Springs: If you find yourself at the oasis in the SoCal desert, Copley’s makes for a stellar dinner. 10/10 would eat here again if I find myself back in Palm Springs.
That’s a wrap for this month’s update! Feel free to share your thoughts in the comments below, or email me at joe@mainwaring.dev if you have any questions or comments you’d like to discuss in a more private setting. Until next month!
Joe
