Fluid on the Brain

I’m not sure where I’ve been these past few months. I know I have been in and out of the hospital, swallowing pills and receiving chemotherapy and blood infusions. Since March, I have endured three neurosurgeries (one to place the Ommaya Reservoir (my off-centered unicorn horn), one surgery to biopsy the inflammation and surrounding cerebral edema (to make sure it wasn’t more cancer or an infection) and finally, a third surgery to have the reservoir removed.

Edema can cause an array of problems, including making one’s memories blurry. It slows thought, creativity and speech. It has also affected my mobility. I am relearning how to walk again. Living like this has been incredibly frustrating and humbling. The activities that I once found joy in are now difficult (writing does not come easily anymore).

This summer, so far, has consisted of rain and more rain. I feel like my cancer treatment has followed the same pattern. Am I grateful that I have a cancer that has an established treatment plan? Yes. But I still have quite the distance to travel: a few more weeks of chemotherapy; radiation; the bone marrow transplant, and a whole year of being sequestered while my borrowed marrow makes itself at home in my bones.

To be completely honest, I have met my pain threshold. I can’t stand the idea of any more needles or surgeries. I am ultimately afraid of going to Boston and having the bone marrow transplant. I have been told that with transplants of this nature you can lose your allergies and gain your donor’s. I am grateful for her—whoever she is—but am scared that she might be allergic to cats. I’m not sure how I will get by without writing and without my cats. Time will certainly tell what changes lie ahead, but for now, the boys are wandering around the dining room, sticking their noses to the patio door.

I am not sure what life after treatment will bring. I didn’t the know last time that I had cancer either. When treatment, the first time wrapped up my care team, family and friends would say things like, “now you can get back to living your life”. To this, I would think to myself, “and what life would that be?” I didn’t have a job at the time, didn’t have a sense of purpose. I didn’t have a life to go back to. Fortunately, this time, I have a wonderful fiancé to take the journey with. I am more aware of what I like and dislike for work, and what my purpose in this life could be. I have dreams of owning a home, of adopting children since biological children will be out of the question (largely due to the transplant).

When I was first diagnosed with a relapse of Acute Lymphoblastic Leukemia in March, I gave all of my houseplants to my mother because a low immune system and plants don’t mix. She inherited my orchid. It sits on a shelf in her dining room now and is starting to flower again. Just as I will in the near future.

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2 thoughts on “Fluid on the Brain

  1. As always Laura, a beautiful, honest, poignant reflection. Sending you and Seth all the courage, strength, grace and grit you need to meet the challenges and celebrate the milestones. ❤ Catherine

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  2. Dear Laura, I am very happy to see you post again. You write from the heart, so beautifully. I am in awe of your courage and strength while dealing with all of this. I hope you have many friends and relatives close to you. I am sending light and love and I hope to see you here again soon.
    Peace 🌻
    Susan

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