So I have moved on to hospice, and how did we get here?
Transition to Hospice
For those that haven’t heard yet - yes, it is true, I have recently transitioned to hospice care. The decision wasn’t taken lightly. And really it was only when I felt completely backed into a corner with no additional treatment options that Jarod and I conceded and halted plans for any additional treatment. It has been a great while since we have provided updates, so I suppose I’ll take a few steps back…
An update in waiting - static times
Since our last update, which was nearly two years ago, a lot has happened, but also we haven’t been able to do much.
In late 2019 and early 2020, we pursued quite a few interesting trials, wasting a lot of time and energy on things that would either end up being not worth pursuing, or I would be ineligible for one reason or another. Burned again by the clinical trials process, it wasn’t long before I had no choice but to get back into some kind of chemotherapy treatment. Then in March of 2020, I got a new oncologist who was specializing in colorectal cancer, and had a good approach with willingness to rechallenge my cancer with regimens already used in the past, but timed strategically to keep it guessing, rather than moving into 3rd line options.
Starting up treatment again right at the start of a pandemic
Since that time I have been on one combination or another of 5-FU, Oxaliplatin, Irinotecan and Bevacizumab throughout – cycle to cycle in a delicate balance of managing side effects and attacking the cancer more aggressively.
Mar 2020 - Oct 2020 - FOLFOX (Oxaliplatin, 5-FU, Bevacizumab)
Oct 2020 - Feb 2021 - FOLFOXIRI (Oxaliplatin, Irinotecan, 5-FU, Bevacizumab)
Feb 2021 - Jun 2021 - FOLFIRI (Irinotecan, 5-FU, Bevacizumab
CEA, or Carcinoembrionic Antigen can commonly be used as a measure of how well colorectal cancer is being treated, or if it seems to be growing in spite of treatment. I took out the exact values, because - well you don’t need to know that much detail about my CEA. But yeah, you get the idea. Prior to August 2019 my CEA was always in the normal range (<3). It proceeded to go way up in Fall of 2020 after staying on FOLFOX for too long, then down quite a bit with the FOLFOXIRI combination, then held steady for a while with FOLFIRI. Regorafenib seemed to just help the cancer grow.
Treatment changes occurred mostly when it looked like one regimen was no longer working, or when the side effects of a regimen became too much. So one scan might show mixed results, and then another scan months later shows mostly the same, with some tumors shrinking significantly and others growing slightly.
At the same time, my CEA measurements have been on a rollercoaster – rising from Fall of 2019, peaking in Fall of 2020, then being drastically reduced down to 10% of that amount by early to mid 2021, then back up again more recently.
Static - Steady State!?
For quite some time all of this has felt like a fairly static situation. Meaning that although things changed over time in terms of my treatment, how well it responded, there was always some kind of treatment coming on a pretty steady interval, and life at home became increasingly consistent with everyone, always at home for work and school due to COVID. It has felt like everything is always the same, and it was a source of comfort, but at the same time, it could feel too restricting and even claustrophobic.
To call all of this a static situation or a steady state really is downplaying the emotions we all went through, the pain and side effects I experienced, and the sacrifices required of the whole family just to try to keep going. But really that has been our lives from early 2020 through mid-2021. Yes, right along with a lovely COVID epidemic and the isolation and anxiety that has come with it. And yet, there were so many blessings during this time period. With so much time spent with family we were bound to either destroy each other, or come out stronger.
Sadly, the static reality came to an end in late June when it was clear that a combination of cancer progression and reduced tolerance to side effects meant that additional attempts to struggle through additional cycles of FOLFIRI just wasn’t feeling worth it. And those persistent issues with side effects in general from FOLFIRI meant that it likely didn’t make sense to rechallenge again with FOLFOX either, or repeating the combo FOLFOXIRI especially.
A new line of therapy & nagging shoulder pain
With the end of FOLFIRI rechallenge, it meant the start of another new therapy - regorafenib. But before I get too far with Regorafenib, a little more background why we felt like the switch was worth it.
Is it a rotator-cuff problem, or tendonitis?
I had been dealing with quite a bit of pain in my right shoulder for well over six months now, and really a couple of years, as my first shoulder pains that felt related started in the Fall of 2019 after completion of a liver ablation in New York. Earlier this year though, as the pain became more persistent, we perceived this to be tendonitis or some kind of issue with my rotator cuff. Worst case, we thought maybe it was referred pain from my liver, but that didn’t really make sense with how I was feeling.
Me and the kids on one the said ‘breaks’ at Luther Crest Bible Camp.
So, we got it checked out by an orthopedic doctor, and after reviewing x-rays and completing physical examination, I was indeed diagnosed with biceps tendonitis, and it was recommended that I get physical therapy. This made a lot of sense to us based on my symptoms, and which movements seemed to make it worse, but still we weren’t really sure what would have caused it.
Months went by, and the pain came and went. It seemed to get a little better each time I had chemo, which made some sense to us based on the idea that the dexamethasone that was given with chemo would reduce the inflammation that would accompany biceps tendonitis. Eventually I was setup with a physical therapist who would come to our home and help with various exercises and advice to address the tendonitis. Sometimes this seemed to help, but in general it kind of hurt, and it wasn’t resulting in significant reduction in pain or increased usability.
So this was frustrating, and coupled with side effects from chemo, I took multiple ‘breaks’ from treatment in May and June. It was all getting to be too much!
A recommended change
When my doctor recommended a switch to regorafenib in July, pain in my shoulder had steadily increased and it was getting to the point where it was truly impacting my day to day life. I could no longer hold a mouse all day at work without the pain flaring up. Combing my kids’ hair was no longer possible, now relegated to Jarod. Everything you take for granted to use your dominant hand, really I was no longer able to do. Just in case these pains were related to side effects from Irinotecan, we agreed it could be worth trying something else.
So on we went with regorafenib. We weren’t too excited about this drug. We’ve seen it coming on the horizon all along, and hoped it wouldn’t be needed, or that I’d get into a good trial before taking it. It’s nice in that it is taken orally, so there is no need to go into the infusion center, which is certainly a plus. Efficacy data shows that it has some effectiveness, but honestly it doesn’t seem to be a whole lot better than placebo. Side effects are kind of weird with this one. I certainly felt more tired, and faced some gastrointestinal issues, but generally it feels at face value to be more tolerated. Guess what though? My liver didn’t think so! Honestly it seemed to just ravage my liver, and also in hindsight it seemed to encourage tumors in my liver to grow like wild fire.
And that shoulder pain? Well that turned out to be metastases. Just lovely - and to think about all that time where we were just helping that tumor out with the heat, massage, and breaks from FOLFIRI treatment…
In late August I finished my second cycle of regorafenib, and then in early September new scans showed significant cancer progression, which suggested that regorafenib indeed did not help at all. Literally I might as well have taken a sugar pill… So my options from here seemed to be:
(1) TAS-102 - I wasn’t too confident with this option, as it is considered fairly equal in efficacy as regorafenib from what I can tell
(2) Rechallenge FOLFOX - the neuropathic side effects of oxaliplatin had settled from previous treatments, and it also had been effective in the past. So this was a better option.
(3) Clinical Trials - well we tried… again
Clinical Trials?
I won’t go too far into it today, because it obviously didn’t happen. But we really tried hard to get me into some very interesting and promising clinical trials, only to face roadblock after roadblock. It has hurt each time we failed to get me into a clinical trial - I suppose this time it might have hurt even more since it meant I was out of options. But also this hurt because these trials were truly very promising and potentially game-changing therapies.
In the end this process of requiring perfect timing for screening, requirements on previous treatment regimens, and other bureaucratic issues all contributed to my cancer progressing until my blood tests were bad enough that I was clearly not eligible to participate in any clinical trial at all.
We fought it until I was out of options, but now transitioned to hospice
Me with my family, outside of my childhood home, October, 2021 (Photo by Kelsey Carlson Photography)
With the clinical trial options fall by the wayside yet again, that left us with my old friend FOLFOX one more time as pretty much a final option. And of course insurance took an extra couple weeks to figure out if they would approve that (a rant for someone else on another day, I guess).
So in late September, an additional three weeks after finding out that regorafenib failed, I went ahead with one more FOLFOX treatment. The treatment went well enough, only to end up going to the ER two days later with low abdomen pain, where they found I had a kidney stone. Then again the next day I went to the ER as I was short of breath - where they did another scan and found an extreme amount of tumor growth, all throughout my liver, lungs, lymph nodes, and abdominal wall.
Here I was, truly backed into a corner with nowhere to go. With reluctance, and no shortage of sobbing, we were forced to acknowledge the reality of my situation and elected to move forward with a transition to hospice care. I fought this thing long and hard, but it is time for family and rest.
Home - a place for peace and comfort
In the weeks leading up to the hospice decision, our home which I love dearly, was becoming a place filled with fear and anxiety. This was driven by a few things:
(1) It is a two-story home, with difficult stairs that have only been getting harder and harder.
(2) There really wasn’t anywhere that I could get comfortable. The bed wasn’t working, my recliner only worked for a while. I needed a hospital bed.
(3) It was getting to be too much for Jarod to handle alone, supporting me and my increasing needs along with helping our kids. Although we have always had a lot of support from both of our parents, this was getting to be especially challenging during the overnight hours, where I was in too much pain, was too anxious, and Jarod and I were getting less and less sleep.
So when the time came to officially move into hospice, we decided to do so at my parents’ house, my childhood home. Something about going back to your childhood home can give you a profound sense of peace (for real, this has been true, my heart rate has been down ever since I have been home). Coming home also gives me the chance to be more readily surrounded by my family in my final days and weeks, and to make peace with what is to come.
Thank you for your support
Your support over the last five years of cancer treatment, and your support of Love Your Buns since 2018 has meant so much to me. I have great hope for the continuation of Love Your Buns’ mission going forward, and hope you will help me keep it going. Keep talking to your loved ones about the signs and symptoms of colorectal cancer! If you are eligible for a colonoscopy, get screened!