Moving

 

Hello! Long, long time no blogging. As usual, I’ve been busy living my life. And, to be fair to any intermittent readers who might be hanging around, I’ve decided to make this my last post on this blog. The reason I’m suspending this blog is not because cancer has ended for me; though I am still No Evidence of Disease (NED)- my spiritual and physical existence is still greatly affected by my bout with cancer. I don’t know that this part will ever end, honestly. It’s not so bad- I have mild lymphedema, which means my arm swells uncomfortably in heat and/or after over-activity, and I have a dysfunctional back muscle that causes me some pain from time to time. I have fatigue that’s improving all the time (I’m down to sleeping only like 10-12 hours per night instead of 13-15…Emily getting out of bed FTW!)

My goal with this blog was to report back from the cancer war zone I’d entered, for two reasons. First of all, I wished, myself, that someone had done this reporting for me in the way I wanted to read. I had read other blogs, but it seemed like they were mostly about the nuts and bolts of treatment. These are very helpful, but my interests always lie (lay? Goddamn useless English degree!) with how the physical interacts with the social, emotional, historical, cultural, and the spiritual. The second reason I made this blog was to communicate with those who cared specifically for my wellbeing, and who were interested in updates. I noticed that my blog was mostly read by people who knew me or members of my family, and who wanted to “know how we were really doing”. I tried to tell you honestly, and I am humbled by the positive response. I cannot thank you all enough for responding to this space, as your love and positivity FORCED me to consider the varied nature of existence, in that while it was true that I was suffering and in pain much of the time, it was also true, at those exact same moments, that I was very, very loved. How on earth is one supposed to make sense of any of that? The whole thing just makes me want to eat some chocolate and watch TV.

Speaking of which, the next phase of my cancer journey involves restoring my body to the condition it was in not only pre-cancer, but also pre-baby (and pre-multiple c-sections). THIS IS THE LONGEST ROAD OF ALL! Getting in shape after seven surgeries in five years, plus chemo and four staph infections, is no picnic. But, every time I become discouraged, I go for a walk or run on the Lakeshore Path in Madison. I can look up from there and see the hospital rooms where I spent my time. I vividly remember looking out the window, nearly immobile, watching women run along the path. I remembered how I had been that woman previously, and I silently promised myself and everyone who was counting on me to live, that I would be that woman again. And it is very easy to make those promises when you are physically unable to take steps to make good on them. It’s all good intentions when you can’t move. But now I can move a little bit, and so I’ve had to go look up at my hospital room to remind myself of the promises I’ve made.

So, this phase of cancer looks like appointments with therapists of all sorts: occupational, physical, psychological, massage, acupuncture, and homeopathic. I am trying to get my body to move internally and externally, to center my mind. I joked with my general practitioner, who oversees all of this, that I am in outpatient rehab, and he remarked, “Well, there’s definitely some rehabbing to be done!” So, that’s the main calculus now: what will make my body feel and do better, and how can I balance those needs with the needs of others? I’ll let you know when I figure it out completely. Do not hold your breath.

The last thing I do, which is fairly medical, but which has given me so, so much peace, is I participate in a clinical trial that does something called a liquid biopsy. Since my breast cancer subtype, triple negative, is the most likely of all subtypes to recur aggressively, a major area of research is developing screening for early detection of recurrence. So, every four months, I travel to Los Angeles to have my blood drawn. Then, scientists look for circulating tumor cells in my blood, which show up as mutated genes, presumably which would be sloughed off of any tumors that might be forming. I get results usually within a month or so of the blood draw, and so far, they have mostly been reassuring. There was one questionable draw, which we followed up with a PET scan and another blood draw, both of which showed no evidence of disease. So, in any case, this is progress for me, personally, and for my children, who will also need to confront this genetic reality in some way. Hopefully, though, trials like this one, and those involving gene therapy via CRISPR, will continue to make the immense progress they’ve been making, and my children will never get cancer at a young age.

Still, even with all of this amazing progress, with all of the wonderful things that we have in our corner, each advancement sits on stacks of lives which could not be saved in time. The dead are always present with this sort of progress, and for families like mine, they have names, faces, lives, memories, and even scents. My grandmother, Judy Herman, nee’ Brewer, died of ovarian cancer. My aunt Elena Pucciarelli, died of ovarian cancer. My great aunt Catherine Brewer, died of lung cancer, after a battle with breast cancer. That is nearly all the women on my mother’s side of the family, and is definitely all the women in her immediate family. And so our survival, our advancement, is never, ever free. The cost is nearly too dear to articulate.

I began this blog talking about the ways that events emerge through time and space, bringing with them contradictions we must bear, which we will have no way to resolve. Cancer is full of those situations: perhaps the epitaph of cancer is, “Things happen, and they are mostly bad, but can also be good.” These words are so simple to say and so painstaking to live. And they are real. As a result, my last report from the cancer war field is on how my scope of understanding has widened, and as such, so has my capacity for empathy, compassion, and fear. My expectations for my own life are fewer, though not less ambitious: love my children, love my husband, love those who love me, and do work that makes life more rich for others. That’s it, and nothing more. I hope to travel, but only if my loved ones come with. I hope to do ambitious things in my work, but only if it has direct, positive impact for people who are downtrodden. Cancer has taught me the value of my life, and it is modest, and that is it.

Thank you again for reading. I am happy, always, to be of service to anyone who might be struggling with a cancer diagnosis. I send you love.

Emily

 

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