Stepping into Treatment

Yesterday was my first round of chemo. I’m starting with taxol, herceptin (both of which I’ve done before), and perzutamab (which I’ve never done). Herceptin and perzutamab theoretically have no bad side effects, but I’ve always called taxol “Hollywood chemo” — it’s what movies represent when they represent chemo. You lose your hair, weight, appetite, skin color, and other internal bodily integrity. There’s two sides to this — I’ll look very sick, very soon, but I’ll also be super thin and muscular (thanks to climbing) during bikini season. It’s a mixed bag.

But side effects don’t really bother me. Now that I’ve started treatment, I’m beginning to feel a bit better about the journey I’m starting. I know we’re managing the cancer, and I know the side effects that are coming. I feel more solid about the process itself, even if everything around that process — and the eventuality it gestures toward — is anything but solid.

I think that’s what’s bothering me now — the uncertainty of everything else. Here’s what’s certain: I will be in and out of treatment for the rest of my life. There is a slim chance I’ll go into remission, but more than likely it will be a momentary or incomplete remission — like the first time. And I’ve accepted this, and I can live with it.

But what I’m not quite sure how to live with is this: the tenuousness of my future. The unease I never felt before but feel now about my life going forward. What shape is my career supposed to take? Can I even go on the job market — in Boston, a national search is out of the question — when I’m evidently sick, or bald, or in some stage of partial recovery? How do I explain that yes, I need special treatment, yes, I need compensation, but yes, you can still rely on me? How do I go forward productively in a relatively new relationship when everything feels anything but normal? Do I push aside the pervasive, low frequency grief or anger or sadness to try to build something happy and normal? Is that being false, or denying the truth? Is that denial? How long can I keep it up?

To be diagnosed so young means being at least partially barred from the securities of youth and energy. I have so much energy, and so much time, but that time will always now be inflected with grief and uncertainty. I am immensely happy for the time I have left, and enjoy every minute of it — there’s so much laughter, so much joy, so much happiness left in my future — but the simple fact of time and its newfound limitation shifts the way I’m thinking about that happiness. I have limited time — I need to do certain things before I’m too sick to enjoy them. And because we’re starting chemo now, because I’m already in this process and, as my oncologist admits, I’ll likely be on some kind of treatment forever (some that have bad side effects and some that don’t), there’s things that I’ll enjoy, but with caveats. I’ll be bald and on chemo for my friends’ wedding in July. This summer I’ll kayak and hike when I’m tired and out of energy. My boyfriend and I have a vacation planned for August that I’ll likely spend much of resting. I’ll rest more often than I want to when I climb, ride less aggressively. I’ll have trouble remembering all of it.

I am okay with these things — I need to be. I wish my life were more secure right now, so that entering this very insecure, very uncertain phase felt less like floating alone in the midst of a wide sea, or a barren ocean. But it’s not, and I need to find some of my own security in the middle of that uncertainty.

I think what this adds up to — though I’m not certain — is that I need to locate more stability in myself. I spoke to a friend of mine this afternoon and she confirmed for me what I know to be true — that no matter how many people I have around me, moving through this with me, I am ultimately doing this alone. It’s frightening — being in a loving, strong, consistent community and surrounded by wonderful people but knowing that, in the end, this is my journey. I love my family, friends, and boyfriend with all my heart, and I know they will always be here to support me, but so much of this process is mine alone. So much of the anger, fear, grief, anxiety, and panic that I’ve been courting these past two weeks is not something I could or even want to replicate for them, because taken at face value it is crushing.

But I can live with and process that uncertainty and its accompanying emotions somehow, even if they are painful. If nothing else, I know this — it’s my fear, my uncertainty. And I can rely on myself to be there every step of the way.



2 thoughts on “Stepping into Treatment

  1. Kiara, your posts here are already touching people. I shared this link with another stage IV woman, and she has shared it with others. Keep posting, and if worse comes to worse on the job front, you are a lovely writer (must be in the genes). I just love this, it is a comfort to me also, going through a potentially different cancer (and far more aggressive) with my father. So, all I can say now is, Thank You From the Bottom of My Heart for your talents and your willingness to share. I love you, darling.

  2. “Future” is a touchy subject for anyone with cancer. My husband has had cancer on and off for over 10 years, so I have seen this experience from many angles (although not from the hospital bed itself).
    I think a dangerous pitfall is to put your life on hold while you wait for your “fill in the blank”. Wether it’s a cure, a good day, more energy… This is your life and you get to choose how you are going to live it. That part is under your control.
    It sounds like you are doing great with the internal struggle surrounding how to live, but I wanted to share from our experience.

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