Fleeting thoughts from the last 2 weeks after neurosurgery

Neurosurgery, hospitalization and coming home

  • In the operating room, the last thing I said to the neurosurgery before losing consciousness was, “What up, doc!”

  • Surgery was easy and I feel fine.

  • If you were hanging out with me right now you'd say, “Wow! You look great!”

  • Watch my video blog 36-hours after surgery:

  • I was told that if I had this surgery I would experience physical impairment to the right side of my body due to the close proximity of tumor to the brain’s sensory and motor strips. The severity of impairment could vary, but the worse case is paralysis.

  • My options were:

    • A.) Leave the new tumor growth in my brain, radiate it, hope the tumor doesn’t spread to healthy brain, hope radiation is enough for the size of the tumor, and hope radiation doesn't lead to cognitive impairment;

    • or B.) Surgically remove the new tumor growth leaving an unknown level of physical impairment, then prevent remaining bits of cancer cells from growing by following up with treatment.

  • I chose option B because there is no cure for cancer and the less tumor I have in my brain the longer it can be kept at bay. Every year advances are made for the treatment of cancer and the longer I stick around I get a chance to benefit from new research.

  • Was I scared about all this? No, because I thought of everyone I know who has been affected by cancer. I would gladly give an arm (or leg) if it could bring back, or save, people I love. Wouldn't you? In my mind this decision was a no-brainer (pun completely intended).

  • Guess what? I’m not paralyzed. Here are the MINOR things I acquired after surgery:

  • To help with the aforementioned quirks I get to participate in physical and occupational therapy. I’m using a cane outside of the house, but it’s mainly for looks (and balance). I don’t have to use the cane at home.

  • I get my head stitches out Mon., Feb. 23.

  • I know the pathology from the surgery but I’m not sharing until I see the neuro-oncologist in Redwood City on Wed., Feb. 25.

  • I have lots of loving friends and I can tell everyone wants to share a bit of information they’ve learned about cancer. You may have read about cancer research in a newspaper article, see a clip on the news, hear about something through a family member, read a book, or have a tip from dealing with your own cancer. Because there’s a lot of cancer information out there I often hear some of the same tips over and over. I like knowing you care and that you’re keeping an eye out for me, but I want to make you aware of a few things so we can stop doubling-up on the research efforts:

    • The treatment of brain cancer is totally different than that of almost every other cancer. Unfortunately, we can’t cut our brain out or get a new one if it gets cancer, and we try not to expose it to radiation willy-nilly.

    • Rest assured that I’m one of those pain-in-the-ass patients who talks to a few different doctors (even outside of Kaiser) and brings questions and research to the appointment. I find that doctors are willing to chat for a long time if you are prepared and you know what you’re talking about.

    • I could make this email really long by typing everything I’ve learned about health, healing, the central nervous system, neurology, neuro-plasticity, the vestibular system, diet, yoga, massage, meditation, etc. But I won’t do that.

Liz Salmi

Liz Salmi is Communications & Patient Initiatives Director for OpenNotes at Beth Israel Deaconess Medical Center in Boston. Over the last 15 years Liz has been: a research subject; an advisor in patient stakeholder groups; a leader in “patient engagement” research initiatives; and an innovator, educator and investigator in national educational and research projects. Today her work focuses on involving patients and care partners in the co-design of research and research dissemination. It is rumored Liz was the drummer in a punk rock band.

https://thelizarmy.com
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A notepad on proprioception: our sixth sense

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The jerk who takes the handicap spot