My Grief Observed - 5: Imagine…what if?
Hello my love,
I’m just going to casually chat some more with you here on a Sunday afternoon. I hope you don’t mind - this helps me feel closer to you —- and I’m hurting right now as I’m struggling with you slipping away from me more every day…
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I am working on designing a tattoo, and just had an initial consultation earlier this week. I’m pretty stoked about it, or at least as enthusiastic as I can be about something in a world that lacks your physical presence. The tattoo artist I met with had some concerns with my design, and the purpose of the tattoo - is it for me, and me only? Or is it also for others to see?
My design includes a portrait of you with a casual, pleasant, relaxed smile. A good example of how you would look in a random moment in a normal day, but is also stylized and beautiful. My idea was to have this image of you to be facing me, positioned on my inside forearm for me to see you. But I guess that is against tattooing best practices? It was advised that I would most likely regret it long term if I don’t flip it.
When discussed with other widows/widowers, the majority felt that the ‘for me’ perspective made sense for a memorial tattoo, and otherwise suggested that it’s my body and I should be able to choose - or get a new tattoo artist.
What do you think?
What if…
Over the last five years, I know we’ve talked about this - after all, we’ve grieved every time your cancer progressed or faced new challenging side effects. Yep, here I am again pondering the what ifs.
Like when you are talking to someone else who is grieving, it is really easy to say to that griever that they should not entertain the ‘what if’ questions that undoubtedly come along with just about any form of grief. At least the idea is that the griever should not get hung up and ruminate on these questions - for there aren’t any good answers. None that I can think of at any rate.
So I’ll go ahead and wholeheartedly agree with that in concept - but then I think about myself in the current state and I imagine all of the what ifs from your journey - and damnit there are just too many. I think I have to document at least a few of them here. I promise that I’ll try to not get hung up on them. Maybe by way of sharing in this letter here it will allow me to let them go. Maybe? Only time will tell.
Note: This right here is where Sara would probably have told me that I’m overthinking this. But hey - I’m the overthinker, so I think I need to process it like this.
That damned Celiac Disease
Your initiation into celiac disease was such a cluster of poorly handled medical care.
I have to start with a big one. What if you were diagnosed with celiac disease earlier on? Documented links between celiac disease (CD) and colorectal cancer (CRC) are limited, and when we asked any doctors about it at Sanford, Mayo, etc., they would always suggest that celiac disease causes increased risk for lymphoma, but not CRC. Some recent studies, however, are pretty convincing in showing that undiagnosed celiac is a potential risk factor for CRC. They posit that the longer you live with celiac but don’t stop eating gluten (or that you don’t know that you should stop eating gluten), the higher the relative risk is for CRC.
The studies that talk about this have some significant flaws - namely that it would be challenging to get the right population of participants who do not currently have diagnosed celiac disease that are later diagnosed, and then watching longer term for CRC diagnosis. Likely requires a long term large cohort type of study. Hopefully someone is working on that. For now I’ll try not to hang my hat or lose any sleep on this one. But, I still wonder…
By this point in summer 2005, you were suffering from the effects of celiac disease but wouldn’t be diagnosed for quite some time.
‘Going to the doctor won’t actually help solve this, it will just cost time and money, so I’ll just live with these symptoms for a while.’
Your initiation into celiac disease was such a cluster of poorly handled medical care. It first manifested for you as skin issues like dermatitis herpetiformis (DH) and in the end it took probably 10 or more doctors well over a year to finally do the right tests to identify that you indeed had celiac disease (DH has since been identified as a common symptom of undiagnosed celiac disease), and that was only after you went in there and said ‘I think I have celiac disease, can you please test me for this?’ And hey - when you stopped eating gluten - it helped a lot! In the end, I’d say you must have been living with undiagnosed celiac disease for at least two years after you started showing some kind of symptoms. Who knows if it really started long before?
Anyway, extreme frustration in the diagnosis process for sure, and I remember your experience with this set the tone for our mostly unspoken philosophy of ‘going to the doctor won’t actually help solve this, it will just cost time and money, so I’ll just live with these symptoms for a while.’
But probably the biggest issue I can think of with celiac disease was how it became an easy scapegoat for us when any new symptoms would come up. There was some logic to our thinking of course - as the symptoms related to celiac are most commonly in the intestinal and colon realm (as is CRC). Thus, I still wonder if some of the CRC symptoms that you eventually experienced were masked by celiac, in that they were easily explained away by us as maybe a dinner meal that had gluten cross-contamination, or that you ate something that had a lesser known gluten containing ingredient. And the way your celiac symptoms would express over time seemed to constantly evolve - making it even harder for us to pinpoint what was going on.
I don’t have any immediate consoling thoughts for myself on any of these. Other than we had no way of knowing any of this. We were essentially just kids not too far out of college when you finally got a celiac disease diagnosis.
Candida and the X-ray that was just a little too high
What about that time you had a blockage - which we now know is a key red flag for colorectal cancer. What if they would have x-rayed further down, just a little? I think this x-ray might have only been a few inches too high to include imaging of the rectum - ugh. Or what if they would have done a CT scan instead of an x-ray? In both cases, I suppose there were very valid reasons like limiting unnecessary radiation exposure.
But again - what are the damned odds that they were that close to having imaged the rectum at least two years before you were diagnosed, but just missed it? Maybe it wouldn’t have mattered? I don’t know. Maybe it would have been too small at that point to be seen by the x-ray?
Shortly after that blockage experience you completed a series of allergy tests that suggested that you had a candida overgrowth. I remember you attacked that problem with avengeance and for quite some time you were a zealous carb-free and calorie restricted eater. Like you had NO sugar - at all - for almost a year. Just crazy looking back. But that didn’t stop some of the weird symptoms from surfacing every once in a while anyway.
So my question here is - what if you never got that test that suggested the candida overgrowth? It was so easy to explain your later CRC symptoms away as related to either a new candida overgrowth or candida die-off, or again maybe a celiac issue. Either way, it’s tough to look back on that period and feel good about all the trouble you went through on an incredibly strict diet only for it to be addressing the wrong problem.
I know, I don’t see any consolation here either. Just yet another case of us having no way of knowing any different. So we acted based on what we knew at the time. Sucks that we keep being just a little too far behind the 8-ball.
We were taking our jobs too seriously
Looking back at our lives, especially between 2014 and 2016, there is no reason to believe that the jobs we held were so important that we should have ignored any bothersome symptoms. Yes, I know we had scapegoats to explain most of what you were experiencing. But we also did discuss it a number of times and would agree that you should go see another doctor, since the last one gave you no answers. And after agreeing, we’d both so easily just get caught up in our crap and forget again for a while as we toiled away in our day to day lives, including jobs that were surely challenging and enjoyable enough, but definitely not so important that we should have jeopardized your health.
Staying healthy was always important to us! I recall quite a few 5ks and 10ks done together.
Like so many things, it is just so easy to get caught up in the whirlwind of life - constantly feeling like you are trying to keep up with the demands that we face left and right. And with your work ethic, I’m not surprised that you would avoid leaving during the day to go to an appointment - maybe due to the impact to your team, or your clients.
What if we would have taken your health more seriously?
Super easy for me to ask now isn’t it? Certainly we thought we were doing our best to take care of ourselves. After all you had been on the most strict diet I’ve ever seen. We both were runners and would go biking when we could. We just let the hustle of life be just enough distraction to easily brush your symptoms off as candida overgrowth, or celiac exposure, or nothing so bad that it couldn’t wait until the next doctor failed to find anything wrong.
So much could have gone differently - maybe?
As I look back at your cancer therapy journey - there are countless examples of where we might have taken a wrong turn. I will say however, that all along the way we made these decisions to the best of our ability with the knowledge we had at the time. And often times the path even felt serendipitous. Like the liver resection, the timing of the SBRT and liver ablations, or the feeling we got from the first Mayo visit - it all felt meant to be. Well, except for that time that we sat in a waiting room in New York for nearly three hours and then proceeded to miss our flight. That one felt like garbage.
But here’s my not-so-short list of decision points that I can’t help but wonder or imagine... How different could the outcome have been?
Regarding your initial diagnosis and treatment…
What if we went to Mayo instead?
Or, what if instead of getting the second opinion at Mayo, we saved a few weeks and instead went ahead with chemoradiation right away in Fargo?
What if you would have signed up for a trial back at diagnosis in 2016? What was even available?
What if the waiting period after chemoradiation was 4 weeks, or 8 weeks, or longer, instead of 6 weeks before your surgery?
What if you would have skipped the adjuvant chemotherapy after surgery altogether and focused on immune supportive living instead?
What would have happened if you would have taken all of the stupid supplements and OTC meds I always tried to push on you?
What would have happened if you hadn’t taken any of them?
Regarding your treatment after metastases were found…
What if they had found it at the CT scan six months earlier? If we looked back at it, did that February CT scan have a tiny blip where there was eventually another tumor?
What if you had your liver resection surgery in Fargo instead of New York?
What if you would have started second line chemotherapy right after your liver resection?
What if you would have been accepted by that neoantigen trial? And would it have mattered if they had used the liver mets sample instead of the original sample?
What if you would have done lung ablations instead of SBRT to your lung mets? And even more so, what if you had lung ablations in late 2018 or earlier in 2019 either instead of, or in addition to chemo?
What if we could have got you setup for the Y90 treatment prior to COVID? Seemed like that was going to happen, and then… nothing.
Damned trials…
What if you were accepted into any of the dozens of trials we pursued in early 2020?
What if we would have tried that one viral therapy trial in Sioux Falls? At a minimum I wish we would have done that instead of regorafenib.
What if instead of starting regorafenib in July, we focused completely in getting you another trial? If not the viral one. Would it have mattered?
I just have also to ask, why is regorafenib so worthless?
What if you could have done the California trial we were so interested in? It seemed like it was like our last great hope. Really crushed our remaining spirit when they denied your participation.
Why didn’t I try harder to get you into a trial in the months before July? Your numbers in April, May and June were pretty good, and those trials might have accepted you at that point. Who am I kidding, they’d say “no, please fail your remaining lines of therapy first, thanks”
Why do they have to make it so hard to get into trials in general? Something seriously needs to be done about this.
F&*%ing Health Insurance…
What if prior approvals weren’t a thing? What if there wasn’t at least a week delay every time you had to change therapy regimens? Like it was already bad because the cancer progressed, so let’s give it even more time to grow before we switch? I would estimate that you faced at least two or three months worth of delays throughout the five years from insurance requiring prior approval.
In conclusion
There aren’t really any answers to these questions, since we aren’t omnipotent. And even if there were answers - would it help? No, I think it would only hurt - and it would hurt in an extremely significant way.
So hopefully now that they are listed here I can put them to rest, just knowing that we really did give it everything we had. We researched, we talked to multiple doctors, and followed what felt like the path that was meant to be.
I fondly recall many hours listening to you practicing Carl Maria von Weber’s Grand Duo Concertant. So much so, I am composing something of a new arrangement/derivative work. I can’t wait for you to hear it!
Lastly, I’d like to ponder a few more that might help me to realize that there have been some very good things in life that I am very thankful for. And what if I didn’t get to experience them?
What if I hadn’t suddenly fallen in love with you at our orchestra concert where we played my version of A Whiter Shade of Pale? I am thinking it was only a matter of time, haha.
What if either of us didn’t attend MSUM or what if we would have gone into different degree programs?
What if your family hated me?
What if I had asked you out too early?
What if we hadn’t become good friends first?
What if we didn’t have the opportunity to have three truly wonderful kids together?
What if I didn’t get to be married to you for 15 amazing years? I’ll forever thank God for our time together.
I will admit that I still have a lot to be thankful for - even in the midst of seemingly endless pain.
I love you Shakie, we’ll just keep moving forward, day by day.
Jerry