Last year, 2019, at the beginning of November, Chris came home from a rigorous tour on a corporate gig (with a great group of people). He had come down with a virus in France and a rock doc had set him up with antibiotics. He was doing better and we were heading out to celebrate my 50th with dear friends in the Smokies for the changing colors. A spectacular time had by all though Chris never shook the fatigue. On Thanksgiving eve, he became very ill, sweating and shaking for close to 3 weeks. An ecoli infection was revealed but the 'virus' was undetermined. He got better but never shook the night sweats and had lost 25 lbs over that time. His oncologist (he had a rare blood disorder) was on autopilot through all of this and his urologist was the one to order the ct scan. A 6" malignant mass was found on his left liver lobe. It took about a month of testing and switching oncology teams to find a diagnosis. We were lucky to find a woman doctor who had come from MD Anderson in Houston and a gastro oncology surgeon with whom Chris found a shared past at a Scorpians show in Beirut in 1996 (the doctor being a young fan at the time). Intrahepatic bile duct cancer was determined.
The first and second rounds of chemo cocktails failed through the summer of 2020 while covid rose and raged. Chris grew weaker and cancer metastasized to his right lobe. At that point, the option of surgery was off the table.
While finishing the 2nd round of chemo, we scoured and scouted for alternative therapies and started the process for a second opinion at Sloane-Kettering in NY. A place in Scottsdale offered the most interesting option of testing for toxins and genetically targeted chemo options. Four weeks after the testing process, we sat down with their doctor and went over the plan. It was 7 days a week of detoxing alongside rotating five targeted chemos, most of which Chris had already tried in the summer. At the end of the conversation, the doctor shared that he did not have a lot of faith that it would have a positive outcome. Mentally and emotionally invested for weeks in this treatment we carefully weighed the pros and cons and declined. Chris was in no shape to go through such a rigorous process and while more targeted this time, the chemo had already taken a toll on his body. We were deeply disappointed.
After speaking with some alternative specialists, we took the results of the testing and the protocol that was suggested and began a layering of different treatments to detox Chris while also boosting his immune system and his health in general. Though his dance card was full with all of these carefully orchestrated therapies, Chris maintained a positive and forward-moving mindset.
His oncologist suggested that we try to see his family after the second chemo scans while he was still in shape to do so. With covid restrictions in play and his brothers, sisters, and daughter in the UK and AU, this was an arduous task. We all worked for 2 weeks straight to get them here to quarantine and then spend time together. Sadly, his brother and sisters were unable to safely travel here because of restrictions, but his daughter, Dee, and her husband Leon left their Muay Thai training, clients, and gyms to come. After quarantining and testing, we headed to spend a few precious days in Sedona, Flagstaff, and the Grand Canyon. We had a special and sacred time together. We are so grateful for this gift that so many do not get during this time of the virus.
While we were in Flagstaff, we received a call from Chris's oncologist. She had conferred with her colleagues at Sloane Kettering in NY and MD Anderson. They came up with off-label immunotherapy that had had some success with liver cancers.
Chris scanned before starting in the middle of Oct. Cancer had spread to his hip and his rib. The edema that he had been struggling with in his legs started to grown upwards. Life as we knew it was changing quickly. He started the immunotherapy and we went on with our alternative therapies that would not interfere. Chris had no new side effects from the therapy. A relief. Though the immunotherapy would take a bit to take hold, it would take 3 months for scans to show progress. This would be in January 2021.
Chris was doing pretty well and then we had a setback. The Saturday night before Thanksgiving, after a good day and a nice meal, he walked into the kitchen with blood streaming out of his nose. He had had nose bleeds throughout this process but this was on a whole other level and was not stopping. We called 911 and the fire department showed up with masks and equipment. Five of them all circling Chris at the sink. They got the bleeding stopped and suggested that we take him to the ER for testing to make sure that he did not need a transfusion and his levels were low. It will not be lost on you all that during all of this, with an large amount of blood lost, Chris looked up at me from his head in the sink and started giving directions of what to do and bring. We had a good, relieving laugh as I shared with the men that he was a production manager. We got him to the ER and they abruptly sent me back to the car. Thank you, Covid. We spent the next 7 hours talking off and on as he went through 3 more bleeds and a series of rhino packs in his nose to try and stop it. Meanwhile, they transfused him and searched for an open bed at Banner to see an ENT. One opened the next morning and he was taken over. The next 3 days he had a few more bleeds The internal medicine doctor put on his case called to say the surgery was risky in his condition. After some paperwork shuffling, they let me in to spend some time with him the day of the surgery making it clear that I would not be able to come in again even if he took a turn for the worse. After delaying for 5 hours they took him to surgery to cauterize the main artery in his nose that night, the surgeon staying home from his trip to Ca to see his family for Thanksgiving. The surgeon was frank before the surgery that although they saw an old rugby injury in his deviated septum that could be the culprit, he had often seen cancer in the sinuses with bleeds like this. We waited. He made it through. No cancer is was seen in the sinus or resulting biopsies. He came home on Thanksgiving, incredibly weak from lack of any real sleep and the chaos but filled with gratitude to be alive and at home.
Meanwhile, after trying to get him around some nature trails in a regular wheelchair, we purchased a cheapy 'all-terrain' wheelchair and have had some good journeys on paved trails (I said cheapy) around the desert here in Tucson. Thankfully this time of year is why we live here. It is spectacular with plants and wildlife. A simple pleasure as Chris' respite has always been in mountain biking the more arduous trails.
He resumed the immunotherapy and continued the plight to get edema relief from a now 2 month-long wait for bandaging for his edema in his lower body and an appt with the only lymphedema pt in town. If anybody is looking for a new career..... He had a paracentesis to drain 3 liters of ascites off his abdomen on the 7th giving him some relief to his distended abdomen. The next day in the edema pt's office with supplies in hand, she scratched him and his swollen leg sprung an edema leak which ended the session.
Chris had a blood transfusion and a double immunotherapy in the past week. The next immunotherapy treatment will be at the beginning of January. Chris and I decided together that we would transfer him from palliative care to hospice for this time between treatments. His liver, now taxed with a 9" tumor and many other growing lesions is slowing its work. We also made the decision to risk bringing in some caregivers here and there for support and so I can get some sleep and he can get a break from my face. He went on hospice yesterday, the 12th of December. We will have an early Christmas turkey dinner this week with some mince pie and my first attempt at Yorkshire Pudding in our 16 years together. Bless.
If you are still reading, thank you to all of you for hanging in there and for all of the love that we have received throughout this process. We welcome all communications here. Some of you have been reaching out and he has not been able to respond because of sheer lack of energy. The same will happen here. He has less and less capacity to engage but wants you all to know that he appreciates and loves every single one of you. You are all incredibly special to him. We have had many moments over the summer of him sharing sparkling tales about his times with you; The prolific storyteller that I fell in love with on a bus ride or two many years ago. We wish you the warmest and safest holiday season and thank you deeply for all that you have shared. Each and every one of you has made this part of the journey a softer, sweeter one.
With peace, Christina Affholder writing with Chris Reynolds and cats close for inspection and approval;) The Production Manager.