Rocky Terrain and Chemo-brain

hanaI woke too early today, too much on my mind, envious of my sleeping husband. I read an article on the health and cancer-treatment benefits of intermittent fasting, thought about it for a little while, and found myself responding contrarily. When isn’t intermittent fasting an unavoidable, built-in, and unpleasant feature of cancer treatment? Besides, endorphins and pleasure, essential to healing, can be hard to come by when you’re in cancer treatment, and food has always been a reliable stand-by for me on that front, so I doubt I’ll be voluntarily restricting intake anytime soon.

So I make myself a piece of toast with butter and soft mild Gouda, and feel a little less contrary. But you’ll forgive me if this post is all over the place? Attribute it to the rocky terrain I’m on, or chemo-brain? To chipping a tooth yesterday, on a piece of toast of all things? To noticing I’m losing my very, very short hair yet again?

It’s Day Four of this round, going better than last, and the one before. Fresh morning air is coming in through the open door. I feel a moment of gratitude. One can be contrary and thankful in the same breath, right?

I got out on a bike ride on the weekend, and out to eat, and to the Heritage Amphitheatre at Hawrelak Park for the Father John Misty show, thanks to my sister for the last minute nudge. Got a very warm welcome from friends, another endorphin rush. I felt good, very, very pleasantly surprised, almost normal.

I’m not normal anymore though, and I never really forget. Even when I think I have, even when I’m having a great week.

I really did have the loveliest birthday week. Family and friends were beyond generous and kind. I even had all three kids here with me, including the far-away California one, which was a lovely, lovely birthday gift. But here’s the thing—treatment is difficult even when it’s going as well as it is for me this time around. And what happened back in February—when treatment definitely did not go well—has lodged itself in deeply in some part of my brain, from where it occasionally rears its roaring head, as it did the day before my most recent chemo last week.

I’d calmly headed out for my usual pre-treatment blood work and consultation at the Cross Cancer Institute, seeing no clouds of any sort on the horizon. This is routine and straightforward. But what should have been a brief and uneventful visit stretched to three hours, and submerged memory, like an angry volcano, had time to erupt.

The lab took five minutes. A consultation with a new resident took six. The consultation with my oncologist took another six. Ninety-five percent of my morning was spent waiting, seeing so many sick people come and go. This, if you need help imagining the problem, is a lot of time to absorb the treatment fatigue in the air, the oceans of grief and fear in worn-out bodies and fear-filled faces waiting with me, waiting, waiting.

I’m finally finished, leave, and see immediately that I planned poorly. I need to talk to someone, vent a little tension, but it’s a workday, and nobody is available on short notice. One dear friend is enduring her own Cross Misery at this moment. Nothing is wrong, but everything is. I can feel the surge of a powerful wave of regret and need. Today may well have been my last chance for a couple weeks to milk feeling well, to eat out, to have fun, and it’s quickly slipping away. And I need to put into words all the hope, courage, fear, grief, denial—and in some cases, relief and joy—carried in the halls of the Cross.

No problem, I tell myself, I’m an adult. I’m hungry, I’ll lunch alone and run some errands, and talk later. I do this, but did not anticipate lunch would feed the powerful wave of emotion that had hit me. It did. The house was empty when I returned, and when my husband eventually did get home from his meeting, I no longer trusted myself to talk much. I filled in the broad strokes, but they were slate gray and brown and not terribly pretty.

I get on my new birthday bike, which has been the best gift ever. I won’t go hard, I promise my sore muscles. But I do go hard, and further than I planned. On the way home I stop at the grocery store and fill my pack. I think I have my bearings. I get home and remember—chemo tomorrow. And the wave crests. The limbic part of my brain now fully trumps the logical. I wanted today to be a party. I want not to be on the sidelines most of the time when others get to enjoy wine and a bounce in their step and easy untroubled nights. I’m teary and angry and self-pitying.

My husband was patient, and alongside my fear and anger, I felt much empathy for his listening ears. And in the night, his arm around me, I know that though my experience is mine alone, I’m not at all alone.

I finally step back a little from the ambush and see a bigger picture again. It’s been a lovely, lovely ten days, no chemo, so many moments of joy. At my mom’s sunny dining table, I’d eaten my first big plate of food in five days, and it was so good. I left with a satisfied tummy and a giant bag filled with leftover goulash and mashed potatoes, mashed yams, homemade apple sauce, bread, broth, oatmeal cookies and honey cheesecake (for my bones, I tell myself). Have I mentioned that my mother is 80?

A wide river of birthday pleasures is where I was camped for ten days. We ordered in giant platters of amazing Greek food on my daughter’s birthday. And on a perfect, velvety summer evening the night before my own birthday, in the backyard of some very gracious friends, we all ate mountains of divine BBQ’d chicken and couscous, and the most decadent chocolate caramel cheesecake ever. I was high on love and a giant glass of Sangria, last week’s chemo finally taking a proper back seat to my life. On Sunday we enjoyed another made-to-order evening in my sister’s backyard, complete with yet another luscious homemade cake—this one a creamy nutty layer one that is my mom’s signature cake. Birthday kindnesses and lovely, lovely words—words like drops of sweet cream—kept falling on me. A yellow rose and a box of chocolates, a cream-coloured rose from a roommate from 40 years ago, a giant bouquet of chrysanthemums. I felt ridiculously spoiled.

Then I say a bittersweet good-bye to my son, and with it comes an acute awareness that my children have quietly slipped by me in the passing lane. They are smarter, stronger, braver, more honest, and more talented and accomplished than I will ever be. This brings me great pleasure.

I wake early on the day of my treatment. I take care of appointment scheduling puzzles and housekeeping details and pay some bills, and I steel myself. I’m greeted by yet another nurse, who hooks up a juicy deep vein, and, after grimacing for a second, I smile and thank her, and settle in to watch and wait: A slow, clear, silently toxic drip that will beat up my cancer. I focus my mind. Allow the drug to do its work, exhale unwanted effects, and resolve to tolerate what I must with grace.

We finish, and pay today’s slightly smaller but sill giant parking fee. (Do they really have to charge cancer patients these rates?) We leave the dark parking lot and drive into skies turned very dark over the last hour. Hard, hard rain and hail fall, and then, just as suddenly, the sky is blue again, the air fresh. At home, on the balcony, the sun on my legs is warm and soothing. I fall asleep instantly. I sleep again after a little supper, and then most of the night.

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12 thoughts on “Rocky Terrain and Chemo-brain

  1. Four out of five doctors recommend honey cheesecake for bone health. More seriously, thank you for this, you inspire me…your soul and spirit and creative flourish inspire me.

  2. Thank you, Connie.
    You’ve been on my mind a lot this past while – – Praying for the BEST for you.
    And Happy (belated) Birthday wishes!!!!

  3. I so enjoy your posts even though I can feel your pain and anxiety in your words…. these words of yours make me feel as though I am (and only me) experiencing your emotions on such a personal level… I am an extension of your thoughts. Pretty selfish of me… I want so much to wish away your cancer,. I want so much to know what to say to you to make it all better. I want you to know how much you are loved. I want you to know how special you are to those who love you you. I want to take away the doubt and sadness. I want you to live a happy fun filled exsistence every day. I want all this because you are a very special soul who deserves not what you have been dealt. I’m not religious, so I cannot say I pray for you. All I can tell is you are in my thoughts and I try to send you positive energy. Hugs!

    • More drops of sweet cream!! Thanks Kathi, this was so, so lovely, anything but selfish!! It was the sweetest of kindnesses and love, the best kind of prayer, and truly the only kind I know how to do myself. Just honesty and love and goodwill, and as valuable as any proper or formal kind of prayer that is ever uttered. Much love to you! xoxo

  4. Hi Connie,

    I read your latest post earlier this week and have returned to it a few times since. The whole post was deeply moving, touching, painful, beautiful… (as always) and there were a couple pieces that really jumped out at me. I loved the “one can be contrary and thankful in the same breath, right?”. I too have been observing myself having the capacity to “be with” a variety of emotions and thoughts simultaneously which is quite new for me and I am grateful.. I also was struck by your line about your children slipping by you on the passing lane AND that this brings you great pleasure. Again, this one resonates deeply with me – I relate.

    It was also painful to read that you are back in treatment (even if it is going better), as that is not what I want for you (or anyone I love and care about). At the same time, you bring me back to a bigger truth (that life doesn’t always give us what we want 😦 and that is okay too). So as always Connie, I feel like you have taken me into your journey in a “sideline” kind of way. You make me think about things that up until now I have had no reason to think about AND I so appreciate that too.

    Thank you for all your posts give to me AND I am sending back to you my love, prayers, energy and anything I think might support you on this journey.

    Hugs and love…. Liz

    >

  5. The positive vibe of a quick, hopefully respectful consult completely turned upside backwards by the interminable and grinding waiting, wondering, ever wondering, in the absence of any reassurance, whether one has been forgotten. Ugh! The only thing I question in this remarkable piece of writing, understandably so full of doubt, is your observation that your children have left you, even quietly, in the dust. I know I still have much to learn from your brave, honest, articulate and insightful awarenesses Connie, so please keep on keeping on until the end of your journey, whenever and wherever that might be.

  6. Hello Connie, it’s been a long while since we have had a visit. I think of you often through Kathi’s forwarding of your blog posts and news of her visits with you. I find your blog touches me deeply, gets me thinking about so many different things, bubbles me up with emotions and memories of my own chemo experiences at the Cross. You have an amazing way with words, I admire your writing and hope that it brings you strength while it brings enlightenment to those that read it. I send you positive thoughts and hugs, stay strong and keep writing.
    ❤️ Dresda

    • Thanks so much for this Dresda. You’re a cancer-land graduate, but I don’t think our sojourn there ever fully leaves our memories, does it? So nice to hear from you! ❤️

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