This year has been challenging for everyone. Apparently, I decided to take my own spin at that. I am writing to you 5 weeks out of brain tumor surgery. It was not cancer. I am walking, talking, and unlikely to have a recurrence.
What makes me want to share the story (besides the obvious talking about myself dramatically), is some of the more astonishing things that basically saved my life. People need to know there is still good in the world. Still people who are willing to go the extra mile, make the extra effort, all for the simple reason that they can help.
I am clear in the knowledge I’ve been blessed. Although why I’ve been so honored is obviously something I will need to take up with a higher power.
How It Started
I work at Barnes & Noble Bookstore in Reno where I am the Children’s Co-Lead bookseller. Back in April, during the shutdown, I was working at the store. Corporate decided that they had all these people and stores, why not do a redesign while we didn’t have customers. I was rearranging the Young Readers section and bending low, then moving books…. repeat all day.
And then the headache hit.
It was a bad one. A searing pounding bright flash with a lingering throb. I stood up and took a little walk. Rolled my shoulders. It was better. I went back to work, but in 10 minutes was in so much pain I thought about running to barf. I asked to go home.
No, I didn’t call the doctor or anything. I just thought I was over-stressed and a lot tired (I was that too).
I returned to work next shift and structured the book moves in a way so I wasn’t bending over and lifting. I also restricted the amount I was doing any task that involved bending over for 10 seconds or more. Not perfect, but I was OK.
There weren’t any more intense headaches. Although I had headaches all day, none were nearly as vicious.
In June, I had a small bowel blockage and was in the hospital for a week. In late July, I had some sort of major intestinal disruption and was out 2 weeks.
By September, I was back in all routines, but something wasn’t quite right. I was having random incidents where I would sort of tip over on people from time to time, but I was only mildly worried about this.
I drove up to Salt Lake City to buy a beagle puppy. Because of the wildfires, the smoke was difficult on my asthmatic husband. I drove both ways, about 500 miles.
The first week in October, I noticed I was feeling unsettled. It took me several days to realize that I was having intermittent nausea. I thought it was related to the intestinal thing in July. Took some anti-barf pills. Slogged on. I also had a couple of wild staggering incidents – staggering like a drunk in the middle of the day. I was home all 4 times it happened. I was concerned but obviously not enough to do something,
One day I was working and realized I wasn’t just nauseous for fun.
I was capital D-DIZZY.
I asked to go home. That was October 6, my last day of work.
I went to the doctor the next day (stubborn as a mule and possibly careless about my health, this felt like I needed a check in). The doctor thought it might be an inner-ear balance problem called benign paroxysmal positional vertigo (BPPV) and gave me some pills and exercises. He told me to take a week off. After a week, I went in using a cane, said I was still wobbly (and occasionally throwing up). He told me to take another few days.
A few days later, I went in to get my return to work letter. I told him I had fallen the day before – bang splat in the bathroom – and things didn’t seem to be improving much.
The doctor rescinded my back to work, ordered me home* and got me a referral to a local neurologist.
(*Driving was a mistake. It was really scary driving while dizzy.)
Meanwhile, the condition worsened. I wasn’t just dizzy. It was as if I were trying to walk on a funhouse floor where the very surface was moving beneath my feet**. Not nice. I graduated to a walker.
(**A doctor recently told me this is a classic Meningioma symptom and should have caused doctors to be concerned immediately.)
Got into neuro. They tested me for a couple of things and then gave me an additional pill (the combo works on seizures). The dizziness stopped after the first day’s full dose. But something was still wrong. I was a lot brain fuzzy and walking was uncoordinated. I was still falling, but not as disastrously. Still, my husband, Robin, was picking me off the floor at least once a day.
One morning I got up to use the bathroom. I just barely made it back into bed. Robin asked, “You OK?”
“No,” I said. “I’m pulling the fire alarm. I don’t think I can walk much longer.”
Went back to the neurologist, but they seemed like they weren’t too anxious about anything. The PA mentioned something she observed that in retrospect she could have diagnosed it in that moment. But she didn’t make that call. They ordered an MRI, argued with my husband if I should have contrast dye (they gave in and did it thankfully). But I couldn’t get into the machine until the following week.
It was an ugly wait. I felt myself slipping into a kind of shadow.
Robin quietly steeled himself to face losing me. He’d watched my condition worsen steadily, day by day, over 2 months. He felt I might survive another 2 weeks. And no one seemed to care beside him (and my family).
By the time of my MRI appointment, Robin had to rent a wheelchair to get me to the appointment. It was Wednesday before Thanksgiving. The medical office was pretty deserted but my appointment was met. They slipped me in the machine, turned on the doo-dad….
And a while later slid me out and said, “Get your ass to the ER STAT.”
All medicine is hurry up and wait, so I sat in the waiting room forever, wondering what the heck. Next thing I know, I was in Renown Hospital‘s ICU.
[Somewhere in there, Robin let them wheel me into a room. The nurse then removed the wheelchair and now it has joined the wandering hospital wheelchair herd, never to be seen again. Insurance arguments are ongoing.]
This part of the story is cobbled together from what people told me and brief flashes. Several specialists stepped in to talk to me and Robin. Thank god Robin’s been a patient advocate before, because he challenged all “well, this isn’t too bad” doctor reactions.
“What does the MRI show? Why were the techs alarmed?” he demanded.
In walked Dr. Michael Song, neurosurgeon. He showed the MRI image on the screen for Robin to see. “This is a right cerebellar meningioma [the ICU nurse cautioned me that with all the info there is on this, still not to believe 100% of it. This is a tricky tumor]. It’s not good to have a tumor, but this one seems to be in a not good place. In fact, it needs to come out right this minute. It’s causing a lot of pressure and is blocking fluid from draining. It’s basically strangling her brain. Unfortunately, my team is away for the holiday and I can’t get them to work until Tuesday.”
I cannot imagine how awful Robin must have felt at these words. I was in brain fog land.
Dr. Song said, “You know what? I happen to know the exact person to talk to. Hold on a minute.” He stepped out and was only gone for maybe 15 minutes. When he returned, he told Robin: “A good friend of mine is one of the top specialists on the entire West Coast for this. I’ve called him. He’s at UCSF and his team is there and ready to operate. We’ll fly her down and they’ll get her into surgery in 2 days.”
Did I mention I’m a retail worker? I don’t have a lot of money. I do have a paid-up health insurance plan and had met my deductible for the year, though. I couldn’t imagine that would cover this. Neither could Robin.
“You think you can get her insurance to do all this – the surgery, the flight there and transport back, the whatever’s needed? ‘Cause it seems unlikely. Or that a power-hitter San Francisco neurosurgeon would bother with the case on a holiday.”
“I will make it happen,” Dr. Song said. “I promise.”
Robin looked into the doctor’s eyes and took a leap of faith. “Let’s do this.”
About 2 hours later, I was on an air ambulance to San Fran (ambulance to Reno airport, small jet to San Francisco, to ambulance to the Parnassis UCSF hospital). Then I was installed in the ICU while they tried to keep the tumor from making mischief.
Because of our financial constraints, Robin was not able to travel down with me. He had to stay at home and work the phones, depending on Facetime, phone calls, and text to figure out who was doing what to me.
I ate a plate of turkey for Thanksgiving. Back home, Robin made the turkey dinner we’d planned for the day… what else ya gonna do? He told me I had to come back fine because it was his most successful stuffing recipe (Robin is an astonishing cook, so after 35 years of marriage, this definitely surprised me to hear) ever and I was going to love me some turkey casserole when I came back.
I met Dr. Edward Chang and his team (there are 5 in the team). Everyone carefully explained what they were going to do. I felt it was a lot like explicating quantum physics to a toddler, but tried to put up a good front (in retrospect, I have been doggedly pretending everything is fine for a year). I thanked them for making the time to do this.
Dr. Chang said, “Dr. Song is an old friend. When he called me and asked me to take care of this lovely bookseller from Barnes and Noble in Reno, I knew I could help!” (Dr. Chang told me this several times in the next few days.)
Friday, a young man shaved small patches of my hair (I told him to go ahead and shave it all off, but he wasn’t interested in doing that). Then he put some tree-sap-smelling goo in dots in the bare spots. He said it was to help the surgical team form a map of my skull.
There was a procedure they were going to do Saturday that I could make no sense of, and just said, “OK. If that’s what we need to do.”
What it was is a new kind of angioplasty procedure that only about 4 people in the whole country are doing – and certainly not on a holiday weekend. Dr. Chang decided nothing less would do, so he called in a favor from a friend (miracle again) for the one doctor in the area that does it.
Called tumor embolization, they ran a line up my groin vein, snaking a probe up to the tumor. Tracing the blood vessels, they injected a kind of glue into all the connecting vessels attached to the tumor. Then they sent me to a surgical recovery room where my sister-in-law Marty Simonds, who lives in Alameda (an island in San Francisco Bay, for those not familiar with the area), was waiting for me. “Hi. How are you?” she said.
I knew who she was. I had things to say to her. I didn’t feel completely brain fogged. The tumor was already relinquishing its hold on me.
When they wheeled me into the OR prep room next day, I expressed my admiration for this fantastic procedure. That I’d experienced a difference in my symptoms immediately. That I’d never heard of it, and it seemed like the hugest advance in tumor treatment. The team apparently had never talked to a patient who’d had it, so they took a few moments as I tried to explain the differences I was experiencing.
“Well, we’d better finish the job then,” Dr. Chang said.
I was not frightened. I knew how bad I felt. I knew if it didn’t work, I was basically going to be a radish in a nursing home and probably get snatched by the dark angel Covid there. So: improve or die. Simple choice really. Let’s do it.
What happened was that when they went into to excise the tumor, it jutted out of its brain cave as the doctor first cut it open. Later, Dr. Chang would say it was trying to get the heck out of me! Two of the other surgeons mentioned this in later interactions.
The tumor was 4 cm and happy to come out. It was basically starving and crumbling away. Dr. Chang removed 99.9% of it. Then they sewed me up.
Monday morning, I was sitting up, then taken for a walk down the hall. Yeah. Really. I was shaky and my left leg seemed uncertain about its part to play, but I did it.
I only experienced one night with pain enough to require medication. Since then, I have controlled the mild headache with Tylenol and ibuprophen. I’ve had major surgery before, so I expected a lot of pain and nasty pain meds. I’m stunned at how pain-free I’ve been.
The next day, me and my trusty walker started doing laps around the neurological recovery floor. I spent very little time in bed, preferring to sit in a chair (with a seatbelt and an alarm, LOL). At first, I was hopeful that I would just go home after a couple of days, but it was decided that a little rehab before I got home would be useful to make sure I was at the best possible recovery point.
The pathology report came back NOT CANCER. In fact, this was a mass, not a tumor: these things are grade 1 to 4 (4 being the worst); this was a 1. But where it had placed itself, right across the confluence of the brain sinus (called the confluens sinuum on the illustration below) had been dangerous as hell, because it had stopped all drainage in my brain, and was building up pressure. I have a scar on the lower right back of my head in the shape of a donkey hoof. Otherwise, I still have most of my hair (many thanks to my hairdresser for making this look less weird).
Sending me back home, there was a bit of a hiccup because the insurance company woke up and freaked at the bills. They decided late Thursday morning to send me home, but the medical transport company was overbooked for the day. I finally got out of there on Friday morning for a 4 hour ambulance ride back to Reno.
At Renown Rehab, I was in quarantine until Wednesday, confined to my room. They brought me food and did therapy here. Saturday, Robin came and knocked on my room window – the first time I had seen him since the diagnosis. My heart pounded so! Another day, he brought the puppy and held him up. Rocky-puppy did not understand what it was about.
My last physical therapy session, they took me outside for a walk (quarantine had been lifted). My therapist went to her car and brought back copies of my books that she had purchased the night before at Barnes and Noble for me to sign. That counts as the oddest sale I’ve made of my books to date!
Rehab went very well. I was able to improve in just a few short days. The day before I was discharged, the doctor told me they had worked with 4 other meningioma cases in the past year. None had made as speedy a recovery as I had.
I will be doing a few outpatient rehab appointments, but they don’t expect me to need much. Still, I am aware of the fact I am not quite OK. I am working every day to get stronger. In particular, I am aware my cognitive skills have some deficiencies. I figure at age 62, it does no harm to have a brain tune-up for the remaining time I have here on Earth. My speech/cognitive therapist posits that some of my remarkable mental recovery may be due to the fact that I am ambidextrous, and therefore, access more areas of my brain than most folks.
The bills have hit and continue coming in. It looks pretty clear I’m going to hit the $600,000 mark. So far, my deductible has rendered my contributions to $0. Good thing, too. Otherwise, hello bankruptcy.
I admit I have felt selfish and in the way during a pandemic using all this time and logistics when others need so much more. I hope I do something soon that will make me feel less guilty about being a resource pig. I am acutely conscious that if this had this happened today, I would not have had this surgery given the Covid-surge that has filled ICUs and stopped most non-emergency surgery.
It amazes me all this came together in the best way possible. I simply can’t get over how these doctors put themselves out for some 62-year-old woman who is…. well, hardly special. Yes, we expect doctors to “do their job.” But these doctors went further, tapping on favors and links and ways to badger an insurance company to get me to better.
It’s frankly something I am going to have to figure out how to live up to.
And that’s the story of a true Thanksgiving miracle.
Don’t forget to buy my books!
The Midsummer Wife (Book 1)
The Solstice Bride (Book 2)
The Priestess of Camelot (prequel)