Steven’s Story

Site created on October 19, 2019

Welcome! I This site is to make it more efficient for me to keep people who want to stay updated... updated. As of Thursday 2019-11-07:

I had neurosurgery on Tuesday 2019-10-29 to replace the C3 vertebra in my neck with a plastic substitute, because a "marrow-replacing" tumor had basically destroyed it from the inside. The substitute was screwed to the C2 and C4 vertebrae above and below. The removal part of the surgery involved coming in from my throat and moving aside my larynx, blood vessels and nerves to get at the vertebra.

At some point, a clot or plaque was dislodged and triggered a sizable stroke in the parietal lobe of my brain a day or so later. This has given me a hemianopia, or “visual field cut:” my brain no longer sees or recognizes all objects in the left half of of my field of vision, independent of which eyeball is doing the seeing. (One easily-graspable effect is that I now have severely degraded peripheral vision to my left — I might not notice you if you stand there — but it’s more complicated than that.) The stroke thankfully did not occur in an area affecting my language or cognition, and apparently I have a very “plastic” brain with a lot of interconnected pathways that are allowing the brain to route around the damage and continue functioning — given the size of the damage, I am somewhat miraculously not “presenting” typical signs of stroke such as drooping facial muscles, slurred speech, etc.
I am currently at an in-patient rehab facility in Los Gatos with three+ hours a day of physical, occupational, and speech therapies. I will find out my likely release date afer the rehab team here next discusses my case this coming Tuesday 2019-11-12. I am told that because I am high-functioning, it’s pretty likely I’ll be discharged to return home  relatively soon thereafter for continued out-patient therapy to learn how to adapt my life to the after-effects of the stroke.
The post-surgery biopsy of the tumor confirmed that i have multiple myeloma, a cancer of the plasma cells in the blood. This diagnosis was hinted at by pre-surgery scans that revealed lesions at other points on my spinal cord. I’ll be consulting with oncology after release and will most likely require radiation therapy.
The therapies are starting to retrain my attention (always a dicey subject) to adjust for the decreased ability of my brain to notice some interruptions etc. without effort. I will not be able to drive until I retrain my skills and pass a DMV test to verify I could do so safely. Since this isn’t guaranteed, I may never be able to resume driving.
My voice will be potentially affected by this whole process. It’s encouraging that I did not wake up from surgery with a distinctly hoarse voice, which ordinarily suggests a very good chance of returning to full voice. However, if I require radiation treatments near the larynx, it is possible for parts of the anatomy there to become less supple. Fortunately, I am working with an awesome speech pathologist (a singer herself) who has provided me with throat exercises that, when performed prior to raditaion, have a track record of aiding post-treatment recovery. So time to get exercising those laryngeal elevators!
I’m in… okay spirits about all of this. It has gotten genuinely overhwelming at times, but then my practical engineer brain kicks in and reminds me that getting to work and trying to follow the instructions to heal and rehab as well as I can is going to do more good than letting an emotional collapse run wild.
All of your kind well wishes and comments are appreciated more than I have the time or energy now to let you all know individually. I’m literally brought to tears multiple times a day by something that reminds me of how lucky I am to be so well-regarded by so many wonderful people. Thank you. My love and best wishes to you all.

Newest Update

Journal entry by Kim Lund

Sorry for the reporting lag! Rehab has been another whirlwind of activity...still having meds and vitals and blood draws and lots of personnel in the room...and then several hours of PT + OT + speech therapy + swallowing therapy each day. He’s finding the therapists excellent and is learning a ton about his capacities and limitations. 

Turns out that it’s very common post-surgery to have issues with short term memory and cognitive capabilities, and that they are temporary. He was frightened by those changes at first (understandably so) but has finally been comforted by enough medical professionals that he is starting to relax into the limitations and accept more help from us re tracking tasks and problem-solving and communication. 

He has now passed enough functional tests to be discharged. Tomorrow. We are THRILLED. It has been two weeks camping out and I’m hoping we’ll finally be able to get him enough sleep without all of the night time interruptions. He’s exhausted and so strained, but recovering steadily. He still thinks he needs to solve issues taking place outside of the hospital and take care of others’ needs, even while trying to manage his own physical and emotional trauma. Anyone who believes that Steve deserves to rest and recover can weigh in now.  :)


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