Journal

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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Journal entry by Steven Knight

So… it looks like I’m updating this site quarterly now… :-/


...and of course, my first instinct is to apologize for not posting timely updates. To be honest, it’s just been easier to distract myself with… oh, anything else but writing about my health.


I want my life to be normal again, and… it just isn’t. Yeah, yeah, I know everyone’s dealing with the threat of COVID-19 and staying at home, and that’s not to be minimized… but… I’m coming to terms with having to live with myeloma for the rest of my life, and I don’t get to keep it at bay by having a well-stocked refrigerator and keeping the crazy away by occupying my time with cat videos.


It feels like every decision I make now has life-impacting consequences. My first glass of wine after the stroke -- will that kill too many brain cells? Should I just teetotal the rest of my life? Dare I indulge in my favorite evening vice of a root beer float? Will the sugar feed the myeloma and impair my ability to get into remission and shorten my life span? 


Sigh.


The feeling that I had to live up to the precedent I set for myself in writing these updates -- a long explanation, and boy does he have a good attitude! -- has been getting in my way. So I’m going to overcome the writer’s block by following my sister’s good advice and do it in bullet points...


  • I’m alive. (Apparently the fact there are other people with my name who are not has sown some confusion.)

  • I’m in my home in California.

  • I’m still not driving. The hemianopsia is still interfering with the vision in the left half of my brain.

  • A scary fact about my vertebra tumor that I have forgotten to mention in the past dispatches: according to my surgeon, had I not had the surgery, I was probably a month or two away from becoming completely paralyzed by the tumor’s growth cutting off my spinal cord completely.

  • I’ve been back at work by day since 2020-01-24.

    • I had already been given support for working from home as much as needed before SARS-CoV2 forced that on everyone. 

  • I’ve now been through four three-week cycles of “induction chemo:”

    • Each cycle is two weeks on Revlimid (a cousin of thalidomide) followed by a week off.

    • I take additional meds throughout to fend off secondary infections: pills at home, plus a weekly injection.

      • They don’t seem to be able to give me the injection in a Zoom or other video visit. Technology needs to catch up.

    • This chemo treatment generally has “low side effects.”

    • “Low side effects” does not mean “NO side effects.” I experience a mild rash and neuropathy (numbness and tingling) when exposed to sunlight.

    • The treatment has been manageable, but compromises my immune system and leaves me with less stamina than I’m used to.

  • A bone marrow biopsy last week showed no measurable myeloma in my bone marrow.

    • This shows I’m responding well to the treatment and is “excellent news” (my hematologist-oncologist’s words).

    • This doesn’t mean I’m cured. Myeloma is incurable, and If I were to just stop treatment, it would eventually come back. It just means the tests aren’t sensitive enough to measure the miniscule amount that’s there.

    • This does mean I can proceed to the next stage of treatment, the Autologous Stem Cell Transplant (ASCT).

  • I’m going to stay in California for the ASCT, not travel to Minnesota.

    • Traveling with my compromised immune system while SARS-CoV2 is rampant doesn’t make sense.

    • I’m consulting with Stanford and UCSF about the ASCT and will need to decide between the two.

    • Best case, this is still two or three months away, very possibly longer, since there are some recommendations out there that patients postpone ASCT until the effects of SARS-CoV2 on the treatment environment are better known.

    • I will likely be going back on the Revlimid treatment (pending discussion with my hematologist-oncologist) while waiting for the ASCT to begin. There are concerns that too many cycles interfere with my body’s ability to produce enough stem cells, but there is a newer drug that helps with that. 

    • When it occurs, the ASCT treatment will involve a big initial chemo dose with hair loss, nausea, vomiting, etc. Not looking forward to that.

    • A big uncertainty is securing necessary caregiving for during and after the ASCT, since I’m living alone.

  • I’ve been mostly at home for several months now, and really don’t venture out at all.

    • Exceptions:

      • Medical appointments. (Duh!)

      • I’ll walk to the local pharmacy for my prescriptions, or to a grocery store for a crucial item or two.

      • I mask up, wear a cap and hoodie to keep the sun away, and bathe in Purell when I return home.

    • I’m very grateful to have been able to ask friends over the last few weeks for help with larger grocery runs, to keep my immune system out of the public sphere.

      • If this is something you can help with to spread the workload, please let me know. I’d love to not have to worry about wearing out my welcome with anyone.

  • I generally take Lyft to medical appointments that aren’t now being handled by video (the weekly injections and last week’s biopsy).

    • I mask up and scrub when I get home.

    • Exception: I have fainted in the past around invasive medical procedures, so try to get transportation help from friends for more significant medical procedures (like last week’s bone marrow biopsy -- thank you Diana Garrett!).

  •  I’ve started getting involved with online play readings to keep in contact with people:

    • A group at work has started rehearsing and “staging” readings for other Googlers, for which I’ve played:

      • John in “Cost of Living” by Martyna Najok.

      • D. Gene in “Farce of Habits” by Jones-Hope-Wooten.

    • SBMT’s Thursday Night group has become a mainstay for staying connected with that community of wonderful people.

      • I made it part-way through John Proctor in Act I of The Crucible before my LAPTOP DIED ON ME. Argh!

  • My voice has been coming back, once I stopped being so damned careful with it and started actually singing in order to give it some gentle exercise… (I will have more to say about this particular blind spot in a future update.)

    • The top range isn’t all there, and my overall technique and breath support still under-practiced and suspect, but I’m grateful nevertheless.

    • I gave my first public performance after the surgery this past Friday 2020-04-24 in Becky Owens’ online Quarantined Cabaret Live! Facebook group.

      • I sang and accompanied myself on “Staying Young” from Take Me Along (1959), music and lyrics by Bob Merrill.

      • This was the first time -- ever -- that I accompanied myself.

      • I struggle with independence between voice and hands, and long ago decided singing while playing was a talent I just “didn’t have.” It’s taken me this long in life to start looking at it as a skill that can, oh, be practiced and learned… (Sheesh. Nice boy, but he’s a little thick…)

  • I’ve also been using the long hours at home to try to resurrect my piano skills.

    • Not widely known here in California, but piano was my principal performing medium up through my senior recital in college. I sadly let my skills atrophy during the intervening years.

    • That said, I’ve set myself a challenge of tackling my first Rachmaninov -- the famous C# minor prelude op. 3 no. 2, since with my age and health, I figure I might as well go for the greatest hits with what time I have left. I’m making my way through it pretty well now, although I don’t have the chops after all this time to take the middle agitato section up to a “real” performance tempo. But I’m really enjoying working on it.

  • I feel extremely lucky to have the friends I do (yes, including you!), and the communication media to stay in touch more easily these days.

    • If you’re ever interested in a video chat or phone call to catch up, PLEASE feel free to reach out!


Whew. That’s the accumulated news. If you’re curious about anything I’ve left out, please let me know.

Love and best wishes to you all,

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…
 

Journal entry by Kim Lund

Hello loves! Sorry to be out of communication but chaos still reigns pretty consistently, somehow... :)

Deep thanks to Steve's friend David and brother Eric for coming in like the cavalry and spending several days each with Steve, nurturing him and getting him where he needed to go. Much gratitude as well to our friend Harold who stayed with us in early December, bringing laughter, nurture and some excellent couple's therapy. (Not his actual day job, but he's got a real knack. :)

Steve finished his 10-day course of radiation on 12/16 ("feels kind of sunburn-y"). We headed to MN later in the week and had our first appointment at Mayo on 12/23, ostensibly there for 2-4 days of tests and appointments, but ended up being done by Monday noon. We were kind of stunned. The hematology oncology doc was great...Steve calls him the Greek Doogie Howser. 

We were so grateful to have Steve's MN brother Eric with us at Mayo. He met us there and brought his sharp and welcome wit and awesome thorough note-taking skills. Many thanks, Eric! The upshot of the meeting was that there are currently no clinical trials for Steve to participate in, and Dr. Kourelis was confident that his medical care would be equally good in CA or MN, both significant because...

thinking about packing up and moving had become increasingly stressful for him, so he is going back to CA this week to start his chemo there, sometime in early January. We have a lot of confidence in his oncology team, and they will be communicating with his new Mayo doc as well. 

One excellent thing we learned was that the stem cell transplant tends to double the length of remission. Steve is young and strong and vibrant (and just ornery enough? :) that I'm confident he'll fare well in the coming years of treatment and recovery. (Though to be fair, a friend did just post that he was "the sweetest man I ever shared a stage with...")

If you'd like more detail, Steve has added to his intro story today. He may be taking over the postings here when he leaves. I will stay in MN for the time being as he discerns how and where he wants his treatment to happen.

Much love to you all! You have been a treasured lifeline.

Journal entry by Kim Lund

While it is true that I have wanted to stay upbeat in my postings here, Steve and I are moving into the reality of the bone-tired exhaustion and ongoing stress of this endeavor. We’ve realized, especially with the diagnosis of myeloma and many months of treatment and recovery still ahead, that we will need an extensive community of care.

We both have a deep pool of support of family and friends in Minnesota and have decided to move back there for his post-radiation treatment. (Some of you may not know that Steve is from there originally.) The Mayo myeloma program is considered the strongest in the country. His CA chemo doc is fully in support of this move and sent an urgent referral, and thus we are due for our first appointment there in mid to late December. We are hoping to do his chemo in Minneapolis where my home is, and then do the bone marrow transplant at Mayo. 

Many thanks to Grace who has begun coordinating meals for us, and the friends in Santa Clara who are stepping up with meals and visits when we need support! You are godsends. 

In addition, my daughter has just had a health emergency so I flew back to MN yesterday to help with that. Fortunately we have his friend David and brother Eric coming to be with him this week, and other folks are on deck to come if needed. 

Radiation starts in a week! His prep appointment was fascinating. 

 

Journal entry by Kim Lund

Thanks for all of your sweet and hilarious responses! And Pete for the heads up...I think we might not have found that post for awhile and it was lovely. 
 
Steve was looking at the calendar, did a double take and said - wait, that was only two weeks? Because it felt like a couple lifetimes, all that he’d lived through. 
 
Then - on our last night in rehab we were talking to someone who asked what the recovery process was going to look like when we got home. Steve launched into how we get to go home tomorrow and relax and take time to recover from the surgery and stroke...and I realized with a start that he believed that. I moved closer to him and said as gently as I could - you have cancer. As it registered, his face changed and he shifted easily into “oh yeah, I forgot. Radiation treatments and maybe chemo...yep, there’s more.”
 
Our friend Harold said it well. It has been so much easier to focus on the battle that has clear lines, obvious objectives and little chance of fatality. 

The good news is that there has been significant progress in multiple myeloma treatment and bone marrow replacement in the last few years. We saw his hematology oncologist on Friday and will see the radiation oncologist tomorrow. The news is very hopeful so far - the first doc finds no bone marrow failure in the blood, and probably not a lot of bone involvement either. This surprised him. The last test is a full body PET scan  for any other tumors. 
 
(Heads up, shameless run-on sentence ahead.)

It looks like he will 1) do some radiation first to get rid of the remaining small lesions on several other cervical vertebrae and then launch into 2) a pretty good-sized blast of chemo to induce remission (where the cancer still exists but is immeasurable), and  this high level of chemo is made possible by 3) an autologous stem cell transplant (his own healthy cells are taken out and then re-introduced by injection after the chemo, re-booting his immune system) and careful observation for a month and then 5) maintenance chemo. 

With the help of friends and his doc we are now considering oncology programs across the country and are making final decisions about where the best myeloma care for him will be. 

Sweet news - my friend Polly got worried about us and flew in from Minnesota last night like the cavalry! She’s been a godsend...bringing lots more help and wisdom and fun into the mix. 

And on the lighter side...I still need to walk with him up and down stairs, for his safety. And he was told by a rehab docthat, in terms of best outcomes for his recovery, he should not drink alcohol for some months. I asked if it was okay if I still imbibe now and again and he says...”oh yeah, I can hear you now...honey, can you hold my martini while I spot you?”
Rude. 

Much love to you all!

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.  :)

 

Journal entry by Kim Lund

Journal entry by Kim Lund

Alrighty! Settled into rehab and leaping into therapies...as we say in the heartland, oh geez, what a ride. We lose track of days a bit but here are low and highlights. 

He had a rough night on Monday and Tuesday morning had a sharp rise in blood pressure which frightened both of us considerably, but he was able to resolve the stress and settle himself down and the BP dropped finally. So much is being required of him in this complex situation but his spirit is strong. I think he’s learning again how powerful he can be. (Dreamy. I’m thinking about asking him to go steady. :)

A couple days ago he said “you know, so much is happening that I forgot I had cancer...”  Such a moment.

Versai and Leanne left and were tag teamed by brother Geof Tuesday morning, just in time to ride our ambulance to rehab. I stayed the first night with him, and once we got our boy settled in, I went home and slept six hours in a row. :)
Geof is a lifesaver and will stay over with Steve until Saturday morning.

Steve’s medical team will discuss his discharge date on Tuesday. I would so love to get him home, but he’s learning a ton in every session so it’s good to be here. We’ve been surprised at how complex it is to live without peripheral vision. Not something most of us need to consider. Lots of balance issues. Re-learning basic things. I think he may do the next post himself and I’ll let him tell you his continuing adventures.

The sweetest rehab chapter so far...I walked him down to the social room where I had discovered a piano, and he played. It was, of course, of insufficient quality to him...but to watch his beautiful hands move like that after so many days of weakness and tremors was deeply moving. 

To your questions: yep, I’ll post more photos soon and thanks for asking. Regarding visits, he’s wanting to settle in and breathe and sleep right now between therapies, but we’ll check back when he’s built up a reserve of energy. We’ll definitely be taking you up on all the sweet offers of food and assistance  It’s a great comfort to have you all surrounding us with your love. 

 

Journal entry by Steven Knight

STEVEN'S STORY as of 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.
 
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,

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