Journal

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. 

 

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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.
 

Journal entry by Kim Lund

Lots of good things are happening. Steve’s movement continues to improve, which is expected but still exciting. And some beautiful news - his vision has improved slightly but unmistakably. We’re SO heartened by this development. 

It’s pretty wild here still. We get visits all day from PT, OT, his neurologist, his surgeon, his surgeon’s PA, several kinds of nurses, new nurses needing new evaluations every 8 hours, a case worker for the move to inpatient rehab (tomorrow!), blood draw-ers (yeah I know, there’s a real name for that), speech pathologists, housekeeping, food service...ct scan and MRI transporters...a head-spinning abundance of personnel. 

He just now had a joy-filled meeting with a speech pathologist. 
During the surgery the larynx and laryngeal nerve are pulled aside and clamped in order to allow access to the vertebra, and it takes time for them to recover. (Turns out nerves don’t like to be bumped around. :) She said his vocal range will return as the swelling decreases and the nerve calms down, and that he can go ahead and sing as much as he wants right now without impacting that healing process. He was BEAMING. omg it was so sweet. 

He had been walking up a two step practice stair the past three days but summited a full set of stairs today - “Ooh I get to do the big boy stairs!” Ya, I have photos.  :)

 

As I read your comments to him he sniffles throughout, so do know that your messages are a deep blessing to him. 



Journal entry by Kim Lund

And..we’re back. Thanks for all the sweet messages! Steve has been so touched by your caring words. Balm to his soul, truly. 

The staff are monitoring him closely to make sure that there’s no more clotting and that the brain swelling is decreasing appropriately. His morning ct scan was clear so he should be ready to leave tomorrow or Tuesday when a room opens up in an inpatient rehab facility where he’ll be for a week or so.

He’s getting his basic functions back slowly. He says “ the amazing thing about our brains is how much they do for us without us having to pay attention”. He’s not taking that for granted anymore. He walked without a walker for the first time yesterday which was surprisingly moving. And he pooped! The nursing staff were absolutely giddy. 

When he got up to walk one day I suggested that we tie his gown so he didn’t recreate that Jack Nicholson hospital scene (what movie was that?) and he said “modesty doesn’t have a big place to play in recovery”. It’s true that this has brought us down to the real essentials. And of course there’s that nice breeze rustling through...  :)

He is kind of naturally choosing to experience the peripheral vision loss as an engineering challenge. (Surprise.) It’s been fascinating to experience this perspective shift. He keeps getting surprised by things that are right there. Or by a hallway that magically appears when he turns his head a little farther. He says it’s like his brain has erased objects from the left side of his field of vision. 

We’re pretty worn out but I’ll try to write more tomorrow. Much love to you all. 

 

Journal entry by Kim Lund

Hello loves...sorry we haven’t posted, it’s been a little rough. (And every time I write two paragraphs, we meet with someone else and the story shifts again :) We’ve been trying to get the pain meds figured out, and then nausea issues, etc. As a result he’s eaten very little and has been exhausted. Things had been progressing well on Wednesday but he was struggling all day on Thursday, hardly able to stay awake and very uncomfortable. By last night he’d improved and was sitting up by himself and eating a bit. But by then we had gotten some complicated news. 

He’d been having trouble with his vision and upon testing was discovered to have lost his left side peripheral vision due to damage to a blood vessel, probably during surgery. It’s called partial hemianopsia or a visual field cut. Technically it was a stroke, which was frightening to hear, but they were pretty sure that the damage was contained to that incident. They had already done two more CT scans of his head and neck and then he had an MRI late last night to determine if there was further damage. The surgeon told us this morning that the vessels are all open, excellent news. His neurosurgeon also brought in a neurologist who says the damage may be permanent - though we will hold out hope on that front - and that Steve will need to do some rehab to re-network the brain for everyday activities.

His surgeon is working to get him into an inpatient program immediately upon discharge, which will probably be Monday after they monitor him over the weekend to be certain he is stabilized with regard to the brain swelling, and do a few more tests.

 There will be some things he will no longer be able to do. There is a fair chance he will not be able to drive again, but he is an unusual human so we’re not giving up on that yet  

And - things are sad and serious but there is still plenty of joy and creativity in this room. Versai the awesome idea wizard is suggesting that he get on the Tesla waiting list. :) 

The other news is from the newly received path report, a diagnosis of multiple myeloma, a blood cancer. We are getting appointments with an oncologist regarding chemotherapy as well as with a radiation oncologist and will be starting those treatments asap, once incisions are healed. Versai will be working with his current docs to get second opinions and/or collaboration with programs at UCSF or Stanford in case more needs to be accomplished after his initial series of radiation treatments. There is a lot of expertise and success in this area and we remain hopeful for very good outcomes.

Having his sister Leanne in the room adds lots of badass to the mix as she helps her big brother keep perspective. For example, when I tell him how handsome he’s looking, she’ll invariably refute it in some very...colorful manner.

And my most recent fave stunt was when she watched Steve being wheeled down the hall to a CT scan, in his bed, and called out to the driver “Go really fast! He likes that.” (For the record, he does not.)

By far the happiest moment just occurred. He’s gotten his energy back, which is such a relief to us, and I suggested that this would be an excellent time for the brain song, and he launched into it with unselfconscious delight! His first post-surgery song. I’ll let him tell the very oddly in sync story of the musical song that he almost got to perform, in his next post. 

 

Journal entry by Kim Lund

When we last saw our hero, he had just received an AWESOME new plastic vertebra!
Alright you circle full of creative brains, what’s the reframe on why plastic is SO much cooler than titanium?  :)

1) You can see through it in an MRI
     (Slightly boring, yet arguably significant. Source: surgeon Shirzadi)

2) I’m pretty sure there’s a cloaking device implant in it. We had requested either that or some sort of propulsion system. (I mean, you’re already in there, you might as well get the Platinum Nerd package.)

3) ???
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.

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