MIKE'S STORY
On December 29, 2015, the biopsy results had come back. Verdict: Stage 4 colon cancer. I'll never forget lying in my hospital bed as the oncologist gave me the news. "We don't use the word 'cure' for someone in your position," she said, "however, we will do everything we can to prolong life." These may not have been the exact words, but that was the message. You see, I had so many tumors in so many different parts of my liver that surgery was not an option so it was either palliative care leading to hospice or try chemotherapy and see if it might help. I remained silent while the oncologist spoke and I tried to process what she was telling me. I could hear my mother in-law starting to sob and the overall mood was grim to say the least. I decided that, well, if my next few months were going to be all I had left, at least I could say that I had a pretty good run. I lot of great experiences in life, made some great friends and experienced great joy from my marriage and children. Still, I was hoping for more, so I had surgery right away to get a port installed and rang in New Year's Day 2016 on chemotherapy while still in the hospital. I continued chemo for roughly the first half of 2016. Initially going in every two weeks until my platelet counts started to get iffy, then we'd wait for them to come back up. On infusion days, I'd arrive at the cancer treatment center and get the infusions over about 5 or 6 hours. That plus the prep time and waiting for blood tests to come back meant it was a full day. After that, they'd send me home wearing a pump with the final infusion going into my body over approximately 48 hours, at which point I'd head back and have them disconnect everything. Eventually the platelet counts weren't coming back because one of the side effects of chemo can result in the spleen becoming enlarged, which tends to suppress the platelet count. So, I had to take a break from chemo while I had more procedures to reduce the size of my spleen, then I went back on the various chemo cocktails. I was typically on a combination of two or three drugs at the same time. These drugs were harsh. So harsh that my doctors told me more than once that being in good physical condition prior to being diagnosed was the only reason they even attempted some of the therapies. Chemo completely sucked for me. I was tired all the time, my feet and fingers felt like little needles were poking into them almost all the time and I couldn't drink or hold anything cold. I was also nauseous a lot. I puked only once, but wasn't too far away from that on a daily basis. I was also losing weight due to the difficulties I was having with eating. To try to combat this and not lose too much muscle, I continued to work out regularly at CrossFit Leverage, especially early in the morning before an infusion. This no only helped physically, but also mentally. Lifting weights, getting my heart rate up and being around the other athletes in our little community helped me forget about cancer, at least for a little while and remind me that I still had a lot of fight left in me. Eventually, we started seeing encouraging signs and, in the summer of 2016, a scan showed that it actually might be possible for me to have surgery to remove the remaining tumors! Chemo was doing its job and all the little ones had basically melted away! I then had two rounds of liver tumor removal surgery in 2017. I've been cancer-free ever since then and, as of December 29, 2020, became an official member of the 5-year survival club. Really amazing considering the fact that only about 14% of the people who are diagnosed with what I had are still alive 5 years later. It's also important to remember that, although I have survived far longer than the statistics suggest I would have, anyone who finds out they have cancer is already a cancer survivor, regardless of whether or not they live another 5 minutes, 5 years or some other length of time. I am also reminded of those who had more difficult battles than I have had and/or were much tougher than me. There is no making sense of that as far as I can tell, so I just chalk it up to luck and have tried to enjoy all the "bonus time," I was granted every moment after I was diagnosed. When I tell my story, I often say that CrossFit and chemotherapy saved my life. Being in overall good health prior to being attacked by cancer was definitely a factor, as I mentioned earlier. Well, that stuff plus the expertise, dedication, compassion and extreme skill of the health care professionals who, in conjunction with other privileges I enjoy, conspired to save me. I am eternally grateful to still be around and for every expression of support anyone ever offered for me and eternally sad for everyone who didn't make it because one or more of those ingredients were lacking. My survival has led me to my latest health battle. My liver was assaulted, first with cancer, then with chemotherapy and, finally, with various surgical interventions. I have liver disease and it's not going to get better. It will get worse, we just don't know how quickly. That is why this page has been started.
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TRANSPLANT LIST
The transplant team at Northwestern Medicine evaluated my case this year and determined that my best option is to get a liver transplant and I was officially added to the transplant waiting list in late April, 2020.
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LIVER DONORS
There are two sources of liver donations:
1) Deceased donor
2) Living donor (because a healthy liver can regenerate and regrow!!!)
In either case, there are rules about the blood types, although the positive or negative designation on the blood type does NOT matter. I am blood type O. This means I can receive a liver ONLY from another person with type O blood. The other blood types (A, B, AB) have more options. Also, anyone can receive from type O.
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WHY IT'S BEST FOR MIKE TO HAVE A LIVING DONOR
The transplant team has also told me that my best chance would be to receive from a living donor. There are three main reasons for this:
1) My MELD score is not extremely high. The transplant list is sorted by MELD score, which stands for "model of end stage liver disease." I'm definitely not well and my liver is definitely failing, but those most in need are ahead of me on the list as their MELD scores are much, much higher than mine.
2) Since anyone can receive from blood type O, chances are I would never have a shot unless absolutely everyone ahead of me on the transplant list refuses or is unable to accept a type O donor liver or I get a lot sicker and my MELD score increases dramatically.
3) Because of all the surgeries and procedures I've had, it will take the surgeon a lot longer to remove my current liver. With a deceased donor, they do not even start the surgery on the recipient until after verifying that the donor liver is good/viable. The longer it has to sit around, the more likely the chance of complications. With a living donor, all of the screening and testing would have already been done and they can time it so that there is very little gap.
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HOW YOU CAN HELP / ADDITIONAL DONOR INFORMATION
Potential donors should call the donor transplant nurse coordinator to discuss living donation as part of the initial step towards being considered. After the phone interview with the coordinator, if the potential donor meets the criteria, a health questionnaire will be sent for completion and a medical evaluation will be scheduled. The donors will have a blood test done to check their blood type. If they are of a compatible blood type, they will have more testing to make sure that they are medically able to donate. The transplant team is very thorough in making sure it is safe for the donor and the recipient, both at the time of surgery and in the future. In addition, every donor is assigned an Independent Donor Advocate. This person is concerned ONLY with the well-being of the donor. Potentially interested donors, please call the transplant nurse coordinator at the Northwestern Medicine donor hotline at 312-695-0340 with any questions and/or to begin the process. The transplant procedures will take place at the Northwestern Medicine Organ Transplant Center:
https://www.nm.org/locations/organ-transplant-center
If you would like to reach out to Mike and his team directly, please send a message or email LiverForMike@gmail.com
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SUMMARY THOUGHTS
Just wanted to share a few things I've learned throughout all of these health struggles:
One of the things I realized during the times of not knowing how much time I had left among the living was that, even the healthiest among us also don’t know how much time they have left. You feel fine until you don't. You're here until you're not. Even if you do everything right. So, whenever possible, be present. Find your people and then I encourage you to follow the advice of Kurt Vonnegut, who said “I urge you to please notice when you are happy, and exclaim or murmur or think at some point, 'If this isn’t nice, I don’t know what is.’"
Spend as much time as possible with the people you care about and do things together that make you happy. It's worth the effort and if you can find any way to combine doing fun things with people you love with helping others and making even the smallest difference to make the world a better place, that’s a recipe for some great life moments. That will continue to be my plan if someone out there is willing and able to help save my life.
