Update scmupdate

Many, many people showed up for me during my recent surgery, through messages, sharing joy, holding my hand, or sending love in various ways. Before I answer any nagging questions that tear at your gut or mine, I feel compelled to say thank you. From the very depths of my heart, so many have done so much for me, thank you for holding vigil with and for me during a time of challenges and of great uncertainty.

When people see me, especially those who I didn’t get to see during the holidays, they usually ask, “how did the surgery go?” Its a bit of a tough question to answer because it could be answered in a couple ways. 1) the surgery went well in that I survived it and though my pain is amplified, I expected that to be a part of this 8th craniotomy, as it was a part of all the others. 2) In the sense of fulfilling purpose, the surgery was a failure. The goal was to repair what has been a chronic CSF leak and upon returning home from the hospital and taking on some of the onus of my own general care, I noticed a drip from my nose. This drip is unmistakeable and marks the fact that there is a path from my brain to the outside world, increasing chances for potentially dangerous infections. All this, of course, is the result of a series of tumor resections and removals to take care of my old buddy Herbert, or as one doc called him, “ah, your little schwannoma you had going…”

I have found myself vacillating between pure disappointment at the failure of doctors to “do their job correctly” and the desire to have faith in their training and abilities. I went on subdued rants about how people ought to be better at what they do, afterall I work so hard at being good at what I do. I called my surgeon in Arizona, begging for a second opinion, crying as I sat on the ground of a shopping mall, too tired to make the most the few outings I had the energy to make. I told them all those craniotomies had taken their toll on me, I told them that I needed their help. The next days were a flurry of appointments and tracking down medical records and me trying desperately not to let my desire for wellness destroy the holidays for the people I love and who love me. After talking to the surgeon who performed the last surgery, I felt confident in his next steps. They are steps that help him learn why this CSF leak doesn’t make sense, and steps that empower me with information. I am hopeful that I can trust this surgeon, as we seem to be learning in this process together. That said, I am not going to proceed without the opinion of both surgeons, though they have diverged in the past, I am confident (or at least I tell myself I am) that one of them will come up with something.

So yesterday I made hospital history as I performed a test my surgeon and the radiology doc came up with to track the leak. They performed a lumbar puncture and injected a contrast dye, a not uncommon procedure. After the injection I was literally hung upside down in a hospital bed and made to lay there until the contrast could make it way into my head. As an anomaly to people passing by as I was wheeled from room to room to perform tests and wait, I joked with folks that saw me and felt happy enough to be the patient who carries joy around with them despite their world feeling upside-down (see what I did there?!). I quietly noted that when previously sitting in a hospital hallway, crying in a hospital gown, waiting for a CT, I was all but invisible to passersby, but as I hung there smiling, people stared, smiled, said hi. It was strangely satisfying and disappointing to see the way an anomaly gets attention, but also to see how sick bodies in a hospital are so common place they’re hardly seen. After a series of strange conversations in the hallway and many techs and nurses with kind eyes and genuine smiles letting me know I was a trooper, I was taken to a CT to see how far the dye had travelled. Then, once we had confirmed it had gone where it was meant to go, it was Flo’s (the name of my somewhat bitchy CSF leak) time to shine, to do something that even made the docs chuckle a bit. I was sent, dressed in a hospital gown and scrub pants, into a hallway and to the stair well. There I was instructed to run up and down the stairs, bend over between floors and shake my head vigorously, to force the leak. So I did. I fought the vertigo and the tight breath in my unexercised chest and ran 5 flights, over and over again. The lumbar puncture site ached. My leg tingled from the nerves that were tweaked. I felt ridiculous and embarrassed as I ran past professionals. I tried to give patience to my body as it tried to understand its circumstances. Finally, Flo showed her  bitch face and I stopped running, though not until the doctor accompanied me on one final sprint to ensure I was good and leaking!

After a tense, face-down CT scan I was informed that the test did what it was supposed to, they can see the leak and where it is going. So today I wait patiently by the phone for the docs to weigh in.

I spent the night in pain, a heating pad wrapped around my torso and an ice pack wrapped around my throbbing head and neck. I filled myself with anti-inflammatory medicines and muscle relaxers and hoped rest would come. I imagined my breath bringing healing to my pain and carrying the suffering away. And as I sit here, sore and tired, feeling so many points in my unruly body screaming out to me, I wait for my energy to return so I can conquer the list of tasks ahead so I can reenter my life and the things I love with at least a shadow of the gusto I feel for them.

So when people ask how the surgery went, I guess my answer is that I don’t know. And I’m okay with that, at least I am learning to be, and feel that way in this moment. I’m living in the uncertainty of a body that refuses to conform to the treatments its been given, a body that perhaps can’t easily be fixed. So right now, broken is OK with me.

Peace and love,

Samira

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3 thoughts on “Update scmupdate

  1. Samira,
    You are one of the courageous, informed, articulate individuals I know! What a battle you have waged with Herbert and Flo. Keep your sense of humor and fight up; we all love you and care about you. I hope someone got a photo of you hanging upside down in your bed and running real steps at the hospital.
    All our love,
    The Loeb family

  2. I’m supposed to be in your class tomorrow, and my dad had a non-cancerous heart tumor much like yours when he was your age. I can’t imagine the things you or him had/are having to go through, but I still felt some connection. I hope you’re doing well and I hope the next surgery is more fruitful than the last.

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