Today’s post is written by Maggie’s Brightside Executive Director Jane Feustel Bensimhon and brought to you in partnership with our Unbelievably Generous Sponsor Iyengar Yoga Center of Vermont.

Rabbit Holes & Resolutions:

I wanted to start this new year off with lots of good resolutions. Eat healthier meals. Exercise more. Be more patient with my daughter. But instead of having the zeal and optimism of a person who had cancer and now has a second lease on life, I was feeling antsy, irritable, and unsettled. That quickly turned into anger at myself for not being happier and more grateful for my life. Sometimes I still find myself looking at other people who have had cancer and wondering why can’t I “do it like them.” At least at that point in my thought process I was able to stop and remind myself not to play the cancer olympics–it’s not a competition or how I can do it “better” and there is no “right” or “wrong” way to have cancer and live in its aftermath.

 

Yet I still wasn’t able to summon the positive energy toward making happy resolutions for the coming year. It wasn’t until I sat down to write this blog that I realized it was almost exactly four years ago I was in the midst of a pretty shitty time. It was right around new years when I had already received my cancer diagnosis, completed a PET scan showing no mets, but was in an epic battle to get my radiation treatment covered by insurance. The repeated denials were causing a delay in getting the treatment scheduled and I feared each passing day meant more time for any active cells to grow and circulate throughout my body. And at the same time, my then four-month-old daughter had to be hospitalized due to severe RSV. Thankfully she got better and my treatment plan was finally approved.

But this is all a good reminder that even after four years, I still carry the trauma of this time, of this particular season, with me. That is ok. But it is an important opportunity for me for mindfulness and re-centering myself in the present moment. 

 

So it makes sense that this angsty undercurrent of seasonal bad cancer memories wouldn’t be the most fruitful climate for cheery aspirations, but instead be a ripe time for my mind to go down a cancer rabbit hole. Getting pulled down rabbit holes is a fairly common byproduct of having cancer. It is easy to slip into- “Am I doing enough to keep cancer away?” “Did they really get all of it?” “Why did I get cancer?” “Are they missing something?”. Sometimes these rabbit holes are great motivators for us as patients to ask our medical team hard or necessary questions that can improve our outcomes. They may drive us to find a new practitioner who takes our concerns more seriously. Sometimes though, they are just an exhausting mental whirlwind that kicks up the dust of all our uncertainty and fear. And it is certainly difficult to tell which kind of rabbit hole it will be when you are still stuck in it. 

 

For me this time, this particular rabbit hole is about wondering (as I have ever since my treatment finished) what role hormones might have played with my cancer. I had synovial sarcoma though, not one that is ever really talked about in relation to hormones (like breast or gynecological cancers might be). Immediately post-treatment, I struggled to get anyone in the oncology world to engage in a meaningful conversation about what sorts of hormonal birth control options, if any, would be safe for me given my complex cancer situation. This is not surprising given young adults with cancer can often face unique challenges during and after treatment that their medical providers may not discuss with them–preserving or managing fertility being just one of those topics. 

 

So when a dear friend asked me recently if my tumor had been stained four years ago for ER (estrogen) or PR (progesterone) receptors and if that would give me some insight into the tumor’s relationship with hormones, I went into a full-on tailspin of questioning and concern. I feverishly tracked down both my pathology reports (first and second opinions) and neither said anything about those stains. This was followed by equally feverish googling of “sarcoma + ER positive” to see what literature I could get my hands on. Then I managed to take a breath, think through my options, and send a mychart message to my oncologist to get her opinion. So now I’m waiting patiently for a response, reminding myself of the long-game here and trying to stay present. 

 

Nothing might come of this particular rabbit hole. This draining exercise in frenetic, mind-racing, worst-case-scenario wondering is a hazard of having cancer. Even four years out. So this is my shout-out to all my cancer family who may also be tied up in rabbit holes rather than committing to new years resolutions. May we all find our way back to our breath, to the present moment. Don’t forget to lean on loved ones around you when you feel a rabbit hole coming on- or once you realize you are deep down in one and need some help getting pulled out or finding your way to the other side of it. And better yet, write out all those feelings. The writing helps, I can testify to that 😉

rabbit in hole

Photo of Jane as a rabbit in a hole 🙂