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May 12-18

This Week

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There is nothing quite as calming for me as the sound of water burbling over rocks and branches. One of the greatest gifts of my friend’s cottage is the river that flows through the land; wrapping itself around vegetation, rocks, and abandoned docks, the water adjusts to an ever shifting landscape. And shift it must, for rigidity cannot exist in nature. The ability of a river to turn a rather substantial granite rock into an insignificant pebble is a reminder to be patient, “go with the flow”, and surrender to the journey that is ours to take.

Having spent the greater part of three weeks trying not to think about what journey the clinical trial would be taking me upon, I obtained my answer yesterday: I will be receiving immunotherapy for the next three years and no transplant at this time. This is great news, as it is the reason I signed on to the trial in the first place. Since the other arm of the trial receives the current standard of care (transplant), I am actually contributing to the arm of research that could change that standard. My stem cells were already collected and will be kept frozen for my lifetime, so should I need a transplant in the future, they can be used. Ultimately, the hope is that I either never need a transplant or that it can be deferred long enough that new, less toxic therapies are in use to treat or cure MCL.

Like the ocean which can be quite calm in one place and swirling with a colossal storm in another, I am hopeful and relieved while also overwhelmed, uncertain, and distressed. I trust that the universe has selected the right clinical trial path for me, but I am uncertain of what my future holds as far as cancer is concerned. I am grateful for the attention, love and support of others in the past five months, but I worry that all of that will abruptly disappear, leaving me feeling rather alone. I know that others are not as fortunate as I have been in fighting cancer, so I feel a sense of obligation to do more and be more.  I am happy to be physically rebuilding and strengthening, but I worry about my immune system, wonder at my still aching bones, and fear long term side effects of treatment. While my heart is accepting all these feelings, my brain is passing judgement and suggesting I need to get over myself. But just like it is important for us to hold space for others, it is also important that we hold space for ourselves—not only for our brave, resilient selves, but also for our anxious, insecure selves. Sometimes we have to stop judging, fixing, and dismissing and simply give ourselves permission to just be.

I’m fairly certain that one cause of my swirling emotions is I am not exactly sure how to “just be”.  After hearing the words “rapidly fatal if left untreated” last August from a leading MCL doctor (seriously, stay off the internet), my entire being went into fight or flight mode. Of course, while my singular focus was on treatment, the world kept right on spinning. Now I will be re-entering that world (at least the teaching world) next week and am not entirely sure how to “get back to normal”; even forging a new normal feels daunting.

My love of water, both the sound and the feel of it completely enveloping me, used to make me question how anyone could be afraid of it. Then I got swept up in a wave one spring break in Georgia, and I realized just how powerful and destructive water can be. Immediately panicking, I fought against the current, unable to break through the ocean’s surface. It wasn’t until I let go and allowed my body to naturally float to the top that I could finally breathe. As I struggle through the emotions of the past few days, I am reminded that letting go and surrendering to the path this river of life takes me upon is the only way to breathe— the only way to truly live. It’s okay to pause and give myself the space to let my body and mind soak it all in.     

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