Steven’s Story

Site created on October 19, 2019

Welcome!. This site is to make it more efficient for me to keep people updated about my C3 vertebra replacement neurosurgery, its aftereffects, and my recovery. As of Thursday 2020-01-14:

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 is enclosed by rods 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. After that, they flipped me over and screwed in rods from the back.
At some point during or after the surgery, a clot or plaque was dislodged and triggered a sizable stroke in an occipital lobe of my brain a day or so later. This has given me a partial hemianopsia, or “visual field cut:” my brain no longer sees or recognizes all objects in the left half 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 occurred in a part of the brain mostly concerned with processing vision, not  in an area affecting my language or cognition. Apparently my brain has a lot of “neuroplasticity” --  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.

After surgery I was transferred to an in-patient rehab facility in Los Gatos for a week of physical and occupational therapy before being discharged home on Thursday 2019-11-14.

The in-patient occupational therapies involved retraining my attention (a dicey prospect even before the stroke) to adjust for the decreased ability of my brain to notice some visual interruptions etc. without effort. I will not be able to drive until I retrain my skills and pass a DMV test to verify I can do so safely. The in-patient physical therapies mostly focused on post-stroke issues like balance and core stability. I tested normal for cognition and language.

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 revealing lesions at other points on my spinal cord. Myeloma is an incurable cancer, but it is currently manageable to the point where patients routinely have pretty reasonable quality of life for 10 years or more. I started under the care of a hematologist-oncologist in California, who outlined the general course of treatment, and supported a referral for consultation at the Mayo Clinic in Rochester, Minnesota. (I am originally from Minnesota and a brother still lives there.)

Not all of the tumor was surgically removable, given that it was impinging on the spinal cord and major blood vessels in the spinal column. I completed ten radiation treatments on Monday 2019-12-16, focused on the C3 vertebra area, to wipe out the tumor remnants in anticipation of starting the myeloma treatment itself.

I had the Mayo consultation Monday 2019-12-23. The Mayo doctor confirmed the standard treatment course recommended by my CA hematologist. (No zippy new clinical trials happened to be available now.) The treatment starts with 3-4 months of “induction” chemotherapy, which I’m going to handle in California,  currently scheduled to begin on Friday 2020-01-24. The chemo drugs for this stage have very few of the “traditional” chemo side-effects like hair loss, nausea, vomiting… The regimen consists of a daily pille of lenalidomide (yes, a cousin of the notorious thalidomide), a weekly injection, and a host of other pills to combat various infections that can creep in because the chemo drug also damages the immune system while it’s wiping out the cancer... The goal is to reduce the myeloma below measurable levels.

After the induction chemo, I’ve decided to pursue Autologous Stem Cell Transplant (as opposed to continued traditional chemotherapy). The “transplant” begins by injecting something that causes the marrow to manufacture extra stem cells in the bloodstream. About a week later they harvest enough of my minimally-cancerous stem cells for several future transfusions. After the harvest, I would have 3-4 weeks of “good old fashioned chemo,” the aggressive kind that wipes out as much of the cancer as possible while causing possible nausea, hair loss, etc.

With the myeloma reduced to minimal levels, they give me a transfusion of my own previously-harvested stem cells. And here’s where the combination of modern medical technology and our biology gets magical: the minimally-cancerous stem cells put back into my bloodstream start replacing my bone marrow with minimally-cancerous cells, essentially putting the cancer into remission and allowing me to start low impact “maintenance chemo” that affords a pretty normal quality of life. The cancer typically stays in remission for around 2-4 years at a time, but it will flare up and require re-treatment. But myeloma is subject to a lot of ongoing research, so a silver lining is that the treatment of each recurrence can benefit from the most recent treatment discoveries.

I returned to California on Wednesday 2020-01-06. My hematologist here said that during the induction chemo I can resume whatever normal activity I feel strong enough for. I’m planning to return to work for this stage, but I’ll need to go back on leave for the Transplant itself. I’m also hoping to find ways to be a little more social.

My voice has been much affected by this whole process. It was initially 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. But the trauma from the surgery (where the larynx was shoved aside for the vertebra removal) combined with radiation near the larynx making various tissues brittle have combined to give me absolutely NO upper register -- I literally can’t sing much above a middle C at this point. I’m trying to be patient, do the swallowing exercises recommended by the speech pathologist (which I have not, in truth, been doing very regularly), and give it time to recover. But at the moment it’s pretty disheartening. I’m also starting to resume some gentle, low-register vocalizing -- for some reason I keep thinking I have to put that off until I can feel it’s “better…”

I’m in… okay spirits about all of this. It has gotten genuinely overwhelming at times, and I’ve been in stronger denial about it than I originally hoped. But all of your kind well wishes and comments are appreciated more than I currently have the time or energy 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 Steven Knight

Hello again!
So you all don’t have to read through the entire latest updated “Steven’s Story” and spot the changes yourself (although read there for details):
The key recent event is that I returned to California last week to start the 3-4 months of low-side-effect “induction chemo” next week, under the direction of my hematologist-oncologist here.
The hematologist said that, at this point, returning to “normal” levels of activity is up to me and how I’m feeling. I’m currently planning to return to work for this stage of the treatment, after my current approval for short-term disability terminates next week. I’ll have to see, though, how my coming off the surgery and a stroke affect my overall stamina, and my have to adjust accordingly.
After the induction chemo period, I’ll be undertaking an Autologous Stem Cell Transplant, most likely back at the Mayo clinic (where I’m already in their system). This will be another… four months or so of treatment, including a month of “good old-fashioned chemo” to really zap the cancer to minimal levels, with classic side effects like nausea, potential hair loss, etc. 
I’m still not driving, but last year I moved into a townhouse in Santa Clara that is incredibly tailor-made for this situation: I can actually walk to just about everything I need for daily living, including being right by my company shuttle for getting to and from work, and a manageable hike down El Camino Real to a clinic where I can get my weekly blood draw the day before each injection…!
California friends:
1) I’m going to set up the planner here at Caring Bridge for times that I could still assistance. Right now this can include some medical appointments (the weekly injection, plus the every-three-week consultations where another pair of ears is helpful…), and a handful of shows I’m interested in seeing to cheer on friends… Let me know if I can tag along with you!
2) If you’re available for a social visit, let me know! I’m planning to keep my socializing to manageable amounts of time (based on my energy), but it’s a real pick-me-up to see people and catch up…
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