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 Sunday 2020-07-05:

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 destroyed it from the inside and was impinging on my spinal cord. The specific symptom that took me in was neuropathy (numbness and tingling) in both my arms and hands. The neurosurgeon said that had I not had the surgery when I did, I was probably a month or two away from the tumor completely cutting off my spinal cord and leaving me fully paralyzed.

The plastic substitute for my C3 vertebra  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 and screw in rods from the front. After that, they flipped me over and opened me up from the back to screw in those rods.

At some point during or after the surgery, a clot or plaque was dislodged and triggered a sizable stroke in the right 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 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 allow 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 e.g. notice some visual interruptions etc. without effort. My condition was reported to the DMV, and I will not be able to drive until I retrain my skills and pass a 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 that affects the marrow. This diagnosis was hinted at by pre-surgery scans revealing lesions at other points on my spinal cord. Myeloma is a treatable but incurable cancer, and is currently manageable to the point where patients routinely have pretty reasonable quality of life for 10 years or more. I have been under the care of a hematologist-oncologist in California, who outlined the general courseof treatment.

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, which is pretty standard now.

The chemo treatment started in California on Friday 2020-01-24 with multiple three-week cycles of at-home “induction” chemotherapy, that go by the initials VRd:

* a weekly subcutaneous injection of Velcade;
* a daily pill of Revlimid (generic name lenalidomide -- yes, a cousin of the notorious thalidomide), two weeks on and one week off;
* a weekly dose of dexamethasone, a corticosteroid.

These are accompanied by a number of other pills daily, to combat various secondary infections that can creep in because the chemo drug also damages the immune system while it’s wiping out the cancer…

I had a bone marrow biopsy on Wednesday 2020-04-22 that confirmed I was responding well to the VRd treatment --  the biopsy detected NO measurable myeloma in my bone marrow. In the words of my hematologist-oncologist, that was “excellent news” and meant I’m ready to proceed to the next stage of treatment.

I’ll be choosing to have an Autologous Stem Cell Transplant (ASCT), 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 will then have a single large dose of “good old fashioned chemo,”  the aggressive kind that will wipe out as much of the cancer as possible. while severely compromising my immune system for 3-4 weeks, and causing hair loss, nausea, vomiting, etc.

With the myeloma reduced to absolutely levels, and after a few weeks to let my immune system recover and build strength,  they will then give me a transfusion of my own previously-harvested stem cells. And here’s where the combination of modern medical technology and human biology gets magical: the minimally-cancerous stem cells put back into my bloodstream start replacing my bone marrow with minimally-cancerous cells, 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 3-6 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 had been planning to have the ASCT at the Mayo Clinic in Rochester, Minnesota. (I am originally from Minnesota and a brother still lives there.) I had a consultation at Mayo on 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 presence of SARS-CoV2 threw a wrench into that plan, since traveling while my immune system is compromised seems like a REALLY bad idea right now. I’m planning to have the treatment at UCSF, where the procedure will be managed in-patient. The treatment has not yet been scheduled, but I currently expect it to start some time in the next few months. There may be another cycle or two of VRd in the offing if I can’t be scheduled soon enough.

My voice was 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 originally combined to give me absolutely NO upper register -- I was literally unable to sing above a middle C even after several months had passed. HOWEVER, that seemed to start getting better once I stopped being so afraid of damaging my voice and instead started, you know, singing to exercise it. It’s not fully “back,” especially at the top end, and I suspect the quality of my voice may have been affected, but it has felt good enough that I have been actively contributing performances to some online cabarets.

SARS-CoV-2 quarantining has both changed and not changed things for me. I went back to work on 2019-01-24, and they were very supportive about my working from home as much as I needed even before the quarantine was extended to everyone, so shelter-in-place didn’t directly change things for me as much as it has others. But the background concern, combined with my cancer, has taken an emotional toll -- I find it hard to not get more concerned than I should about every change in temperature, or sleepless night, or shortness of breath...

I’m in… okay spirits about all of this. It has gotten genuinely overwhelming at times. 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

(Note: if you're joining this story in-progress, you can check out "Steven's Story" at the "Home" link above for an up-to-date overview.)

Okay, this time it's been a little over two months since the last update, instead of three months last time… Progress!

Bullet points seemed to work really well last time (although they're a challenge to format in CaringBridge's text widget). Let’s get right to it, shall we?

  • I’m still here. (Yes, you should hear Elaine Stritch singing that.)

  • It’s getting harder to stay in denial as things get more real. I keep telling myself this is a good thing.

  • I’m planning to have my Autologous Stem Cell Transplant at UCSF.

    • I’m still waiting to hear from UCSF about when they can actually schedule this.
    • Key decision factor: UCSF does this in-patient, Stanford out-patient.
    • In-patient requires less at-home caregiving: 2+ weeks after discharge from the hospital, as opposed to many more weeks of shuttling me back and forth to procedures.
    • Out-patient would also have required making my home environment suitable to keep infection away from a Hickman catheter in my chest, via rules like:
      • No open windows.

      • AC and furnace filters changed by someone else before anything gets started.

      • No being in a room that’s been vacuumed or dusted for at least 45 minutes afterwards.

      • No take-out food.

      • Low microbial diet: no yogurt, no berries, etc.

      • Mouth care at least five times a day but no flossing. (What?! I am fastidiously addicted to flossing…)

  • My “at-home” chemo regimen (VRd: Velcade-Revlimid-dexamethasone) is on hold after six three-week cycles.
    Another cycle or two may be in the offing, depending on when they can schedule me for the transplant.
  • My mom sent me Tom Brokaw’s book, A Lucky Life Interrupted, covering Brokaw’s journey from being diagnosed with multiple myeloma in 2013 to its publication in 2015.
    • The book has been infuriating, because:
      • It has a lot of digressive anecdotes about amazing news stories he’s covered, amazing people he’s met. (In fairness, this makes sense to try to sell the book to people who are interested in Brokaw, not just his medical condition.)

      • It has “advice” that’s hard for mortals to follow, like: everyone should have a doctor like his daughter who can help interpret what your medical care doctors are saying, advise you about terminology, etc.
    • The book has also been really valuable, because: 
      • Brokaw’s taking two-a-day naps while on his Revlimid normalized the fatigue I feel. I was worrying that the fatigue meant I perhaps wasn’t responding well to the VRd. Turns out that at least part of the fatigue is likely because my body is trying to deal with the fact that it has cancer. (And even if that’s just an amateur explanation, hey, it makes me feel better about getting the rest I need…)
      • The book helped me realize how really lucky I am. Brokaw had severe crawl-from-the-bed-to-the-bathroom pain from the damage the myeloma was doing to his spine and bones. I’m walking around and singing and playing piano. (So far.)
      • The book opened my eyes to how much myeloma treatment really has progressed in just the last five years. Brokaw describes Velcade as “heavy artillery” that they introduced to “carpet bomb” the cancerous plasma cells after he didn’t respond to the Revlimid like they hoped. Velcade is now a part of the standard VRd treatment which I was put on right away.
      • Similarly, Brokaw describes the Stem Cell Transplant as something that he felt fortunate to be able to avoid by using traditional chemo, whereas it’s similarly become a very standard course of treatment.
  • I’m still working (from home) by day.

    • I’m extremely fortunate that they’re being very supportive about tailoring my projects and demands to what I have capacity for.

  • I’m continuing to perform and participate in online cabarets:

    • Becky Owens’ Quarantined Cabaret Live! Facebook group has become an amazingly supportive “home” and I’m really enjoying the friends I’m making there. Performances (with links for the curious):

      • 2020-03-24: Staying Young from “Take Me Along” by Bob Merrill.

      • 2020-05-20: Heigh-Diddle-Dee-Dee with parody lyrics by Jenni Chapman, an ad for Disney week at Quarantined Cabaret Live!

      • 2020-06-26: Pastime Rag No. 5 by Artie Matthews.

      • 2020-07-17: UPCOMING!

    • I’m on deck to start participating in Lisa Falls’ Long Island Virtual Cabaret:
      • 2020-07-11: UPCOMING!
    • Both of these groups are on Facebook, let me know if you’d like an invite so you can catch the performances live. (There are a lot of really talented performers participating!)

  • I’m… managing at home.

    • I’ve had some amazing steady-end friends who have helpd with my grocery and transportation needs over the past few months.

    • I do still have a list of people who have volunteered in the past that I may still have occasion to reach out.

    • We’re all getting our social outlet over the Internet these days, so I can’t say I get any more overwhelmed by the loneliness than anyone else likely does these days…

If I’ve left out anything you’re curious about, don’t hesitate to ask.

Much love to you all,

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