Posted 3/7/2021 10:25 AM (GMT -6)
It looks like I stopped posting after my last update in March 2020. It’s been a long, strange, tough year since then. Of course there was(is) the worldwide pandemic. My daughter was doing a college semester abroad in Spain. We hustled to get her home to the Midwest US and she tested positive for the virus just days after returning. Luckily, we had the sense to keep her isolated just in case. Even more lucky was that no one else in our home tested positive.
Anyway, I was thinking about posting an update for another year of survival as of January and I just haven’t been feeling up to it. Then I remembered when I was first diagnosed and how I searched for success stories for people with poor initial prognosis, like myself. So, for you guys who are searching for that kind of information, I’m here and have survived another year. I am told I still pass the “ does he look healthy?” test.
After my biopsies in my sternum and in the lymph nodes near my windpipe in March 2020 I left for a guys weekend and spent 4 days golfing in Arizona. When I returned I found out that the results were garden variety adenocarcinoma. I was thrilled with that info since we were worried about the cancer morphing to something worse and harder to contain. We developed a plan and in early May I started Jevtana chemotherapy. Jevtana had been successful for me before and we were hoping for positive results again. We got what we wished for and the results were quick and positive at first and then slowly getting better after about 5 months of infusions. Then, this strong and healthy body that had always responded so well to most treatments started to show that 7+ years of continuous treatments have a cost. I began to bleed each time I passed urine. A lot. I went in to Urgent care and was checked into the hospital. I left the hospital with a nephrostomy tube. After a couple weeks with the tube in my kidney and coming out of my back the bleeding began to clot in my bladder so that I was unable to pass urine (or blood) at all. Another trip to Urgent Care was fruitful - I had relief but it was short lived as I left with a Foley Catheter. It seems that radiation cystitis was the cause of the bleeding and the chemo infusions were making the cystitis flare up and bleed. So Jevtana, which was working, became an option that we unfortunately had to discontinue. I started Zytiga, which I had been on before with positive effect and of course confined on my regular 3 month shots of Lupron.
I was very uncomfortable and frustrated to say the least. I was in my favorite time of the year, fall, and unable to do many of the favorite activities that I enjoy because I was carrying around and managing 2 different tubes coming out of my body to 2 different bags that were constant reminders of the wear and tear a body takes with constant treatments. I felt my quality of life took a drastic turn for the worse. So, I did what I felt was in my control - I tried to remain active (walking) and hydrated. Keeping enough fluids down helped to manage the radiation cystitis. Even though I had a catheter, I had a few trips to urgent care to get it flushed when it was clotting too bad to drain. I don’t know whether it was through my efforts or sheer luck but I hydrated more than usual and began to self flush my catheter until it appeared that I didn’t need it anymore. I think stopping the chemo also helped the bladder walls to heal enough that I was able to get the Foley catheter removed just 2 days before a scheduled road trip through Montana and Wyoming to view and hike the beautiful national parks, mountains and forests there. The wildlife we saw in Yellowstone and Teton National Forests were abundant and amazing to see. We caught a week of unusually warm weather in early October. The hikes we went on were very difficult for me as I still had a nephrostomy tube and bag to manage in addition to the fatigue that came with nearly a half year of chemo. I survived driving through 6 states without having to make a single stop for medical care due to bladder blockages or anything else. Being packed into a SUV for 20+ hours each way from home was a gamble but in hindsight it was such a beautiful trip and well worth the risk, especially after escaping without any emergencies.
When we returned I was due for scans, which we completed in November. The scans were not good, so we met with the radiologist that radiated my retro peritoneal lymph nodes about a year earlier. We got mapped and set up with a mask to keep my head still. I needed radiation to my vertebrae, my neck and shoulder. We completed that radiation in December. But there was some good news. A look at my kidneys appeared to show normal function so I was able to get the nephrostomy tube removed. So gaining the mobility of not having a Foley catheter and a nephrostomy tube brought my quality of life back up about 3 notches! The discomfort alone is worth about 2 of those clicks. I fully understand how blessed I am to be this far along on this cancer journey and have setbacks like these and not have them be permanent. I do not take for granted this gift. It’s probably another reason that it’s important for me to share my latest updates. Don’t get down with the setbacks! Work through them, manage them to the best of your ability, and maybe there’s a possibility that some things turn out to be temporary rather than permanent.
In late January, early February, I was feeling ill again. I knew we had scans set up for mid March and I was also experiencing side effects and fatigue related to the aggressive radiation doses I received just a few weeks earlier. But something just didn’t seem right so my dear wife called my oncologist to set me up with a consult. By working with my oncology team and the people at Mayo we were able to find a time in early February for a C-11 Choline Pet Scan. My PSA had increased to 1.8 after an initial steady reading a couple weeks after the radiation of 0.70.
My PSA is usually uncharacteristically low compared to the “ hot spots” on my scans. This proved true again when my manubrium (upper sternum) showed up as raging on my February scan as well as lymph node activity deeper in my chest. Even though I was still recovering from the most recent radiation that was completed barely 2 months earlier, we scheduled more. I am happy to say that I just rang the bell this week and completed these latest rounds of radiation to my chest and lymph node.
So... that’s a lot more going on than a normal annual update for me. It’s almost unfathomable to consider going through all this while under the stress of lockdowns/quarantines and 3 active adult children in my home with many friends, but that’s what has happened and I’m here to tell you about it. I am thrilled to have come out of my last 2 scans with a plan for treatment. I know too many guys that heard at their 7 or 8 year mark that they didn’t have any more options that were considered feasible. I guess I expected to hear something similar. I am so thankful for family, friends, and access to medical care that supports my needs.
I like to think that we have a say in how our story goes. I believe in activity. I believe that staying hydrated is very important as well. Chemo, radiation, these treatments we receive dry us out and we need to flush them through our system. In addition I have needed higher doses of fentanyl and hydromorohone for pain. These things can cause constipation. I have been encouraged for years to take stool softeners or other pills to manage this. I try to take as few pills as possible so I have always managed constipation with walking and water. Another reason to continue both.
I believe motion creates momentum. I fall into ruts just like anyone can. I started tracking my daily steps in late December of 2020 and I was surprised and almost disgusted at the result. It appears that even after an active fall while I was enduring uncomfortable procedures and daily reminders of a reduced quality of life that I slowly reduced my activity as well. By the time December was ending I discovered that I was very sedentary. I decided 2021 was going to be different and I started tracking my steps. Large increases in activity are difficult to maintain long term so my goal every week is to increase my daily average steps or other activity by 10 % every week. The first couple weeks were easy. When you are very sedentary, the increases can accumulate fast. But I’ve found that the small increases are achievable and habit forming if you build them slowly.
I was surprised to hear from my lymphedema rehabilitation sessions a few years ago that the staff at that clinic wanted me at 10,000 steps a day. That’s the number of steps recommended for my healthy friends that don’t have cancer as well. I guess having cancer is no excuse for letting go of your fitness. Anyway, I made my fitness goals for 2021 and I’m happy to say that so far even though the disappointing bad news of my scans, more radiation and the fatigue and side effects that come with it, I still have found time to get my step count in. I still have a ways to go to get back to 10,000 steps. But i work on maintaining my current level and I work on it every day. Some days I don’t get there. That means I need to get started earlier the next day or add some time on the treadmill to make up for the down days. By the way, our body needs down days. It’s ok to take them. But OWN them. Know you’re taking them because you need them. You can use it as incentive to take the next couple of days to make up for it.
I wrote a lot about fitness. Why? Because that is something we can control. And there is so much that is out of our control when dealing with stage 4 metastatic prostate cancer. We need our strength to battle some of these treatments. The drugs, the chemo, radiation, surgeries, and the emotional toll wears us down. We need to continually reclaim our strength to be ready for the next curve ball. Staying active gives us a tool - strength. Willpower is something that is important in our battle as well. When we back up our willpower with strength and fitness, who knows, that might just be the difference between being able to endure just enough treatments to make it to another durable remission.
Keep on fighting guys.
And keep the faith!