Steven’s Story

Site created on October 19, 2019

Welcome! This site is to keep people updated about my C3 vertebra replacement neurosurgery, its stroke and cancer aftereffects, and my recovery.

First-time visitors: the narrative below provides a detailed overview about what I’ve been going through. Ongoing dated progress reports are available in the “Journal” link.

As of Monday 2024-01-01:

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 original symptom was neuropathy (numbness and tingling) in both arms and hands. The neurosurgeon said that at the time of the surgery, I was probably a month or two away from the tumor cutting off my spinal cord and leaving me paralyzed.

The plastic vertebra substitute is enclosed by rods screwed to the C2 and C4 vertebrae above and below. They performed the surgery through a surprisingly small incision in my throat and a larger one in the back of the neck. They had to move aside my larynx, blood vessels and nerves to get at the vertebra, and to screw in the rods from both sides.

At some point during or shortly after the surgery, a clot or plaque was dislodged and triggered a sizable stroke in the right occipital lobe of my brain. This has given me partial quadrantanopia (https://en.wikipedia.org/wiki/Quadrantanopia), or a “visual field cut.” My brain no longer sees all objects in the upper left half of my field of vision, independent of which eyeball is doing the seeing. (One effect is that I now have degraded peripheral vision to my left — I might not notice everything there — but it’s more complicated than that.) The stroke thankfully occurred in a part of the brain concerned with processing vision, not  one affecting my language or cognition. Apparently my brain has a lot of “neuroplasticity” --  interconnected pathways that allow the brain to route around damage and continue functioning. Given the size of the stroke, 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 my brain’s decreased ability to notice e.g. visual interruptions without effort. The in-patient physical therapies focused on post-stroke issues like balance and core stability. My cognition and language tested normal.

I avoided driving for the first year after the stroke and only returned to driving after a positive assessment by a driving occupational therapist.

The post-surgery tumor biopsy confirmed that I have multiple myeloma (https://en.wikipedia.org/wiki/Multiple_myeloma), a cancer of the plasma cells in the blood that invades the marrow and damages bones. This diagnosis was previously indicated by my pre-surgery MRI showing “lesions” in my spine -- masses where the cancerous plasma cells are trying to “break out” into the bloodstream.

Myeloma is not a curable cancer. It is, however, currently treatable and manageable to the point where patients routinely have good quality of life for 10 years or more. I have been under the care of a hematologist-oncologist at my clinic in California, and also a myeloma specialist at UCSF.

Not all of the tumor was surgically removable, given its proximity to the spinal cord and major blood vessels in the spinal column. I completed ten radiation treatments on Monday 2019-12-16 to wipe out the tumor remnants near my vertebra, in anticipation of starting the myeloma treatment itself, which is pretty standard now.

The treatment started in California on Friday 2020-01-24 with multiple three-week cycles of vRD “induction” chemotherapy – Velcade, Revlimid, Dexamethasone, accompanied by other daily pills to combat secondary infections from the chemo drug damaging the immune system while it’s attacking the cancer.

A bone marrow biopsy on Wednesday 2020-04-22 detected NO measurable myeloma in my bone marrow and confirmed I was responding well to the VRd treatment. That meant I was ready to proceed to the next stage of treatment. Instead of traditional chemotherapy, I chose to have an Autologous Stem Cell Transplant (ASCT -- not a surgical transplant, keep reading).

I consulted at the Mayo Clinic in Rochester, Minnesota (I am originally from Minnesota and a brother still lives there) and Stanford University before choosing to have my ASCT at the University of California San Francisco (UCSF), where I wouldn’t have to travel while SARS-CoV2 was rampant, and where more of the process was handled in-patient rather than out-patient.

After schedule delays, the process began on 2020-08-14 with self-injections of Neupogen, a drug which causes the marrow to manufacture extra stem cells in the bloodstream. After four days of Neupogen injections, I underwent two days of “collection” at UCSF starting 2020-08-18. The collection process involved cycling my blood through a centrifuge that extracted the by-then minimally-cancerous stem cells my marrow was producing. (Check out the journal entries for August 18, 2020 and August 20, 2020 for details, as well as the Gallery for photos of the cool technology.)

I was admitted on Wednesday 2020-08-26 to the Malignant Hematology wing of UCSF’s Medical Center for the actual transplant process, which began that evening with a single large dose of Melphalan -- “good old-fashioned chemo” -- that wiped out as much of the remaining cancer as possible, as well as my marrow’s immune system.

With the chemo having reduced the myeloma to minimal levels, on Friday 2020-08-28 (two days after Melphalan), I received a transfusion of five bags of my own collected stem cells. The minimally-cancerous stem cells put back into my bloodstream then started magically replacing (“transplanting”) my bone marrow with minimally-cancerous marrow cells.

I was discharged two weeks later, on Thursday 2020-09-10, to continue recovery at home. My sister Leanne was my caregiver for the first week at home, followed by my brother Eric the second week. They both returned to their homes, and I started managing the rest of my recovery on my own.

A bone marrow biopsy on Monday 2020-11-23 confirmed that I AM IN REMISSION and that the cancer in my marrow is down below measurable levels (MRD-, or Minimal Residual Disease negative). A PET scan also confirmed that places in my body that previously had visible cancer (neck, marrow) now show none. HOORAY!

 (Technically, I’m in “stringent Complete Response”, not remission, because myeloma isn’t curable, but it’s kind of functionally equivalent at this point)

I have started low-dose “maintenance chemo” -- 10mg of Revlimid -- that affords normal quality of life. I was also given childhood vaccinations to restore my immune system’s “memory” of the vaccines it received, which had been wiped out by the chemo. 

Multiple myeloma treated by ASCT typically stays in remission for around 3-6 years at a time, although some people have gone twenty years or more without a relapse. (I’m planning to be one of those people!) Any periodic relapses will, of course, require re-treatment. Myeloma is, however, subject to a lot of ongoing research, so a silver lining is that the treatment of each recurrence can benefit from recent discoveries and new clinical trials.

Although my voice was initially affected by the surgery, I seem to have recovered my normal singing voice, although it feels different to me. Some of this may be simply an aging voice – it tires more easily, and I no longer have the clear high notes I previously had. Nevertheless, I started actively performing in some online cabarets during the pandemic (including accompanying myself in public for the first time in my life) and just completed a lead role in my first musical since before the diagnosis.

COVID quarantining didn’t change much for me. I was back at work from 2020-01-24 (the end of my first disability leave for the surgery) until I went back on leave for the transplant, starting 2020-08-14, and then returned to work again (from home) on 2020-11-16. They have been 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 did for others. I’ve just now started returning to the office, staying masked as much as possible to protect my immune system.

I’m in pretty okay spirits about all of this. It has gotten genuinely overwhelming at times. But all of your kind well wishes and comments are greatly, greatly appreciated. I am continually reminded that I am lucky not only to have survived so many complications and to be responding well to treatment, but also 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

To see what is in front of one's nose needs a constant struggle. – George Orwell

It has been more than a year since my last update. I had first thought to provide one on the third anniversary of my stem cell transplant “re-birthday” on August 28th, and then on the fourth anniversary of the diagnostic surgery on October 29th, and … well, here we are, at the start of a new year.

I expect many people have fallen away from paying attention to this site. Certainly the number of respondents to updates has dropped off, doubtless because Caring Bridge is bombarding everyone with requests for donations, and who needs to wade through those to be kept apprised of the infrequent updates of someone whose health is, generally, doing pretty well?

So … hello to those of you who are still here. (Or, just joining.) Welcome to this rather long latest installment of self-indulgence.

Let’s get the health synopsis out of the way: I am, generally, doing pretty well. I continue with my monthly cycle of low-dose maintenance chemotherapy, monitored by monthly blood draws and visits with my oncologist. The numbers continue to look good, although not quite as pristine as they once were: my electrophoresis protein tests, known informally as the “M-spike,” have started showing a “faint band” in my beta globulins. This is a possible precursor to a condition known as MGUS, an abbreviation for the mouthful,”Monoclonal Gammopathy of Undetermined Significance,” which is the presence of lower amounts of the abnormal proteins that signify myeloma, and which typically doesn’t exhibit symptoms. (There is also an intermediate stage between that and full-blown myeloma known as “smouldering myeloma.”)

Neither my regular oncologist nor my myeloma specialist at UCSF are very concerned, since these bands that (may) indicate low levels of abnormal proteins can come and go, and we’re monitoring my state regularly not only with the monthly blood draws, but with annual bone marrow biopsies and PET scans, alternating them every six months. So if the experts aren’t concerned, I’m not concerned! Well, mostly. The contrast with my previously spotless MRD- status, of which I was more proud than I had any right to be, takes some of the bravado out of my pronouncements that I’m going to be one of those people that just doesn’t relapse for twenty or more years.

Outside of health, things have also been good. My work is challenging and a bit stressful, but in a mostly good way – the high-profile projects I’m managing have had me more energized about work than I have been in quite a while. I’ve been very fortunate to have been in a terrific relationship with a wonderful woman during the past almost two years. My daughter Versai was cast in her first speaking role in a feature film – look for LaRoy in theaters and online in the spring – and I treasure our relationship.

Beyond all that, the big milestones for me this year involved my participation in theatre. And the significance of these milestones is, of course, best understood with a bit of sermonizing – er, I mean, history …

I did not grow up thinking of acting as something I could, or wanted, to do. My parents were not theatre-goers, so I only remember a handful of times we actually attended something in a theatre. I vaguely remember a touring production of Jesus Christ Superstar, and a local production of You’re a Good Man, Charlie Brown, and my sister Leanne stood with her hand held as a child member of an ensemble in the same local company’s production of The Music Man. But I wasn’t exposed to anything that would have let me identify with a desire to act on stage.

Looking back at what I’ve spent my avocational time on, though, you could say that I’ve been theatre-adjacent most of my life. I’ve had occasion recently, while weeding out my accumulated old papers, scores, scripts, and programs, to update a crowd-sourced database with all my theatre credits (both as a performer and as crew), and although it doesn’t hold a candle to those who recognized and started pursuing theatre as their passion from an early age, it ain’t a bad list for someone who really only started doing this more intentionaly over the past eleven years.

While I had previously confined thoughts of myself as a performer as “just” a person who could sing in choirs, my experience has been marked by a lot of things that seem to have fallen into my lap along the way (and which sometimes got me in way over my head). The more prominent ones:

As a junior in high school, I auditioned for the musical mostly to tag along with everyone else in choir who was participating. I got cast in a prominent minor speaking role (the head waiter Rudolf in Hello Dolly).

The next year I auditioned for the fall play – I don’t think it was as a lark, but I don’t remember my exact motivations. I got cast in a prominent supporting role (Senor Sanchez in Cactus Flower).

In the early 1990s, my love of early music got me associated with Ex Machina, a scrappy company performing authentic period stagings of baroque opera on shoestring budgets. I performed in three productions, and then was a crew member and stage manager for five years. I didn’t understand what a real stage manager actually did, though, since I hadn’t really participated in productions through which I would have learned about real real stagecraft. This caused me a fair amount of problems and embarrassment when we were hired by the Boston Early Music Festival to provide sets and costumes for their production of King Arthur in 1995, and I was brought along as a cheap “stage manager,” and I was supposed to be stage manager for a union crew and had no idea what I was doing.

When I got it in my head in 2012 to branch out from singing in choirs and auditioned for Anything Goes at Cabrillo Stage, I ended up in the ensemble with a small speaking role and having to learn to tap dance. At 50.

When I read that Pear Theatre here in Mountain View was staging An Enemy of the People by Henrik Ibsen, I auditioned, thinking I’d like to just participate as a townsperson or supporting character. I cold-read the callback well enough that I got offered the lead which I foolishly accepted, and was then “fired” partway through rehearsal when it was clear I did not have the background and training to tackle such a huge, difficult, rangy part. 

So … I’ve been remarkably lucky to have had really good opportunities, especially for someone who hasn’t been working at this for a long time, like many people do. Had I been smart enough to see what was in front of my nose, I’d perhaps have recognized these opportunities as signs that I seemed to have some aptitude for this sort of thing, and taken steps to develop that aptitude by pursuing some actual training, to explore whether this was a creative passion that I might have leaned into, or perhaps even chosen to make a profession. As it was, I’ve still considered myself basically a dilettante, and it’s the other people with training who are the real actors that really deserve the performance opportunities that I’m taking from them.

This, of course, directly parallels how I felt about my ability to sing as a soloist. I’ve already related in my entry last year (March 16, 2022 The Road You Didn’t Take) how I was finally addressing that particular aspect of my impostor syndrome, by entering a competition at the urging of my voice teacher, and taking first place in my category.

This past year saw me doing some similar things with acting.

First, I was cast by Santa Clara Players (a company with a small theater literally blocks from my house) as the cranky butler who provides the comic relief through-line in Tangled Webbs, a relatively anonymous farce. Based on training that I had gotten over the Internet during and shortly after the pandemic, as well as reading and online videos about acting, I was able to really think about and explore my process of bringing this character to life, to good results.

Second, I was cast as Grandpa Joe in Charlie and the Chocolate Factory at Children’s Musical Theatre San Jose, a highly-regarded organization with great production values, in one of their Marquee productions involving adult actors alongside (in this case) experienced high-school age performers and two younger performers double-cast as Charlie. As the third lead in the show (after Wllly Wonka and Charlie) this was, hands down, the largest role I had attempted since my debacle with Ibsen, with the added challenges of a solo song, the iconic Golden Ticket song from the movie (mostly sung by me), a bit of solo choreography as Grandpa Joe stumbled about after getting out of bed, and an on-stage costume change.

I’m really proud of how the work I did on this show turned out. I confirmed that I’m not the most instinctive actor and more in my head than I should be. Specifically, I start the rehearsal process with reasonable line readings that are somewhat like my cold readings – reasonably good line delivery on the surface that doesn’t present an instinctively compelling character straight away. But my brain gets to add things over the course of rehearsing that, at least in these cases, added up to good characterizations. Given that I still harbor some nagging self-doubt that I’m basically faking it in comparison to the “real actors” who have far more practice – and training, I’m obviously stuck on my lack of training – it’s pretty significant that I can say I liked what I did in this show.

That notwithstanding, the rehearsal process and performances were significant challenges. CMTSJ has a compressed, intense rehearsal schedule for their Marquee shows, and we performed over two weekends, six shows the first (yes, three days of double shows) and five the second. I’m honestly not quite sure how my stamina held up, except to marvel at what adrenaline can do for you. My aging brain is nowhere near as supple at retaining even straightforward choreography, which makes a musical require much more energy and precision than a straight play does. I honestly don’t know if I have it in me to continue doing musicals given my age and health. Plus, having successfully climbed this mountain, there are other things I’d rather spend time on. So although I’ve learned to never say never – who knows if the right role for an old man will pop up in the right show? – I suspect this may have been my last musical. If so, it will have been a very fitting one that I can look back on with satisfaction.

As always, my love and best wishes – including for a happy new year! –  to all of you who continue to check in on how I’m doing.

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