Howard originally shared his story with us in March 2018. This Father’s Day he provides an update to his journey with metastatic colon cancer, which includes a major milestone – seeing his daughter Emily graduate from high school in May 2019.
Update starting in Fall of 2017
After my colon cancer metastasized to my peritoneum, liver and bladder, I heard those terrifying words you all know: stage IV with 3-6 months to live. But I am not a statistic and we planned a course of action with second line chemotherapy called Irinotecan (known with patients as “I run to the can” due to one extreme side effect) and Avastin. In the fall of 2017 with 4 cycles completed, I had a CT scan and in a true miracle, my mets showed “regression” or what I like to call “shrinkage.” It was the first piece of good news for a positive response. My reward was 4 more cycles of 2nd line chemo and a CT scan after Thanksgiving 2017.
Thankfully that scan showed a little more “shrinkage.” I was directed to consider and start my research on a potential life extending surgery with added hot chemo called Cytoreductive Surgery (CRS), which involves massive debulking of seen cancer cells (dead or alive), and HIPEC (Hyperthermic Intraperitoneal Chemotherapy).
I found my way to COLONTOWN and a neighborhood called HIPEC HEIGHTS. In this secret Facebook group I was able to meet and find over 200 people around the world that had already had the procedure called the “Mother of All Surgeries,” since it can can take 10-25 hours to complete. I was educated by fellow patients, given guidance on how to select a surgical oncologist, and helped to understand new terminology like PCI (Peritoneal Cancer Index). The surgeon scores or rates your abdomen and pelvis in 13 regions for location and amount of cancer involved. Scores are 0-39, with the lower scores being a more preferred candidate. My PCI was 6, so more good news! The advice I received in HIPEC HEIGHTS was to choose a surgeon with the best outcomes. Dr. Sugarbaker, who invented the surgical technical of washing organs with chemotherapy, still does this surgery today, even in his 80s! I interviewed 5 surgeons, 2 in Boston, 1 in Baltimore, 1 in Pittsburgh, and 1 in Michigan. The surgeons in Boston, Baltimore, and Pittsburgh had all done between 500-1000 CRS HIPEC surgeries. I ended up choosing a surgeon in Michigan. I would be his 41st CRS HIPEC surgery. He had done 1000’s of other vital surgeries for liver, pancreas, and ovaries, and I felt confident in his skills and outcomes. It helped that the Rose Cancer Center at Beaumont Hospital in Royal Oak, Michigan was 5 miles from my home. The local choice did help the caregiving team of my wife Lisa, sister CJ, daughter Emily, and my mom Nancy, who would fly in from Boston on a one way ticket.
Preparing for CRS HIPEC
I had 2 more cycles of Irinotecan and Avastin, then stopped treatment 30 days before surgery schedule for March 13, 2019. As I prepared for the big date, I had a filter inserted into my vena cava since I had blood clotting issues in the past. I was mentally ready, and on March 13th at 6 a.m. in the morning I was taken into surgery. The debulking took 9.5 hours and the “hot chemo” took 2 hours. I woke up in the
Intensive Care Unit (ICU). I was alive and the morphine pump was my new friend! I was very weak and had issues with my kidneys waking up from such an intense surgery. I was in pain and had a stent place into my right kidney that got it going and me out of severe discomfort. I spent 10 days in the hospital and had to complete the 4 release tasks: eating, farting, pooping, and walking. I felt like a ghost upon returning home. I was weak and had lost 35 lbs. The road to recovery is slow and it took 7 weeks to hit the first milestone of feeling better. Protein shakes became my new best friend. After a very difficult recovery and a year later, and I am just starting to feel like my old self again. I detest the expression that I will find my “new normal” when I like, and choose to strive for my “old normal” when it comes to building back my strength, stamina, and energy.
In July of 2018 I started back on maintenance chemo after my 90 day CT scan from CRS HIPEC surgery. I had no issues with Avastin previously, but after my 2nd cycle developed chemo induced hypertension headaches. These were massive migraines that drove my blood pressure to 255/147 – a danger zone for strokes that landed me in the hospital twice for a week each. I was placed on heavy duty medications to bring my BP back to normal over the next 4 months, and had to limit my physical activity. It took time and patience, but by December of 2018 my BP was normal and I had no more massive migraine headaches.
I was off chemo treatment and it was time for another 90 day CT scan. Hoping to remain NED (no evidence of disease), a small 10mm progression was found on top of my stomach muscle under the laparoscopy scars. Damn! Surgery to remove the small lymph node happened in early January 2019. Happy New Year to me! The node was cancerous but the margins were clear and no lymph involvement. I had to take this rogue isolated tumor as good news. At my 90 day CT scan at the end of March 2019, the tumor board saw an “area of concern” (dreaded words) at one of my anastomosis sites on top of my colon. My original tumor was on the right side, and I had had 2 previous colon reconstruction surgeries. Now I have to hope that the area of concern is scar tissue or inflammation and not a progression. It’s been a long wait for my June CT scan to compare and see what is going on.
Get busy living – Father’s Day means something special
During treatment I try to focus on living for today. I do my best to eliminate negativity and have made amazing memories. I have been working hard in physical therapy since December to deal with the physical side effects of chemo treatments and multiple surgeries. PT is working and I am working hard at it. My little brother Ian got married in July of 2018 in Bend, Oregon, and I got to stand up as his best man. In September of 2018, I received Babson Colleges Alumni Volunteer Leadership highest honor – the Cruickshank Award. In March of 2019, I was selected at an American Association of Cancer Research (AACR) Scientist-Survivor program in Atlanta. In May 2019 I chaired a COLONTOWN Empowered Patient Leaders workshop in Boston, MA, and was recognized and awarded the Activist of the Year for the Detroit Jewish Community. Most importantly, I will live to see my daughter graduate high school leading into Father’s Day in June, and I will drop her off for her freshman year at the University of Michican. I am not sure how many Father’s Days I will have left (no one really does), but I plan to cherish this one and keep on fighting, inspiring others, and living – HBstrong!