Well, the Sh*t’s hit the fan.
Let’s back up a little to see how we got here.Last time I posted (which seems like a 100 billion years ago now), I was going bald again. That plan definitely made my hair thin very dramatically, and I had to shave my head because it was untenemble. Couldn’t brush through it without gobs falling out, but it was fuzzy baby goose down pretty quickly. This is what I basically look like now (except less fully feathered. Just as lumpy):
I have a great wig, though. Here’s me in my last show as Joanne in Sondheim’s Company singing “It’s the Little Things” to the incomparable Bob Wendland, Early May, 2023.
Unfortunately, plan E-ribulin didn’t work at all. I lost all my hair for the 3rd time for nothing. Awesome. Time to do a show and just live with side-effects for a while. Let the team at Avera do their work.
“Just live with the side-effects.” Let’s restate that.
I was meanwhile, visiting with every department in and ouside the cancer center trying everything to relieve the persistant bone pain in my back. I used accupuncture, Intrared Therapy, Chiroproactic Care, Counseling, all the meds in and ouside the hospital (minus pot- haven’t gone there yet), OK, so Tylenol and Opioids, no N-SAIDS because I was a bleeding risk. But I WAS MISERABLE.
The best way I can describe the pain is this tattoo
(to be clear- I did NOT get another tattoo,
nor did I turn into a ripped dude)
but imagine all this black hurting,
but about 4 inches lower.
Then try laying flat on it.
Through the advice of the Palliative Care center at our hospital system, I visited the Pain Clinic to get a consultation on May 31 about getting a pain pump surgically implanted. I had just made an appointment to have one put in at my earliest convienience, on Thursday, June 15. BUT SUDDENLY, it was time to open my new studio, for Matt to have Annual Conference, and for my legs and brain to start behaving rather unpreditctably.
I started Plan F: Kisqali on Saturday, June 3. It was a hastle and an half to get insurance to approve the meds. We have amazing patient advocates at Avera, and I later found out my oncologist, Dr. Jones, actually called our state represpentative, Dusty Johnson to say, “People are dying out here. Can we please just let me do my job and prescribe the drugs they need to save their lives?!”
Anyway, the patient advocate got me a voucher from Big Pharma to have one round of this ridiculously heavily-guarded medicine, which maybe didn’t work as well as we had hoped, but it definitely revealed some other progression of the cancer throughout my body.
I started Kisqali on Saturday morning, (three weeks after Jones had prescribed it), and it gave me instant side-effects. All of them. It was 3 pills a day, 7 days a week, 3 weeks on, one week off. I started puking on day 1. It was not like normal nausea. It was weird reflux. The food just wouldn’t go down my esophogas, then I’d get these little hiccupy-burps and spontaneous unstoppable puke.
No graphics for this. You’re welcome.
Like I said, maybe it wasn’t the right drug for me at the moment, but BOY did it reveal some things that were going wrong elsewhere!
So I started Kisqali on Saturday, and the long- awaited (soft) opening of the EFFERVESCENT VOICE ACADEMY happened on Monday, June 5. Check it out at effmyvoice.com
You can find everything you need to know on that website about what we’re doing with effVA, but I can’t rabbit trail that direction right now. Just know, it’s been 3 solid years of hard work and determination to get me to this point, and I have an amazing team, and IT’S HAPPENING!!!! And I’m so excited about it.
As a late-minue substitution, my son-in-law, Vinny got to take on the role of Admin in our new business, and I DON’T KNOW WHAT I WOULD DO WITHOUT VINNY!!!! 🏳️⚧️🤍🫧💙💗💙🤍🦈
The Effervescent Voice Academy is a way for me to give back and continue to give to the next generation and the next and the next of singers in our lovely city. I am training some of my upper level students (and those who have studied with others) to learn the trade of voice teaching, so that we can help meet the demands for lesson in this town. It’s a whole thing, and it’s a way for me to recognize that my resources may be limited, but don’t need to be hoarded.
I feel very strongly that I should be the first face of the team that new clients meet when they come to the academy, so all new students and their parents if they’re under 18, have to do an Initial Fit Session with me, then they get placed with one of our younger teachers to start growing in the basics of healthy, free, joyous singing. I help mentor the teachers, we work together as a team. It’s all very harmonious and Kum-By-Yah. I’d love to have a conversation with you about it, but alas…
…back to dumb cancer stuff.
So, I took a few appointments on Monday and Tuesday (June 5-6), knowing I wasn’t feeling great, but intake appointments are not very physically taxing for me. What surprised me was that my brain wouldn’t come up with words. And by the end of the week, I couldn’t play the piano anymore. My brain was just mush.
I have had success with IV fluids for nausea in the past, so I called the infusion center Wednesday, June 7, and asked one of my nurse/besties up on the floor to see if I could get a bag of fluids on Wednesday morning, and just kept trucking along. With a barf bucket in tow, just in case (never threw up at work, FTR)
MEANWHILE... Matt Morrison had a HUGE week because it was the Annual Conference of the North and South Dakotas United Methodist Church (fortunately, hosted in Sioux Falls this year, not ND) and HE GOT ORDAINED!!!
I was asked to pop over and sing at one of the services on
Thursday, June 8 in the afternoon, and YOU GUYS. I did this:
I looked VULNERABLE. In front of PEOPLE. COMPASSIONATE PEOPLE… I had to use assistance walking up on stage, and needed a seat to sing a part of a hymn/trio that I’ve known for years. (For all my late 80’s/early 90’s Sheldon High School Grads out there, we sang “In this Very Room.” I guess it’s old enough to be in a hymnal somewhere now, but my weavy descants and countermelodies were straight Hal Leonard, baby. Thanks, Mr. Dighton for that lovely song in my memory forever.
Want to know the fastest way to get prayers? Look vulnerable in front of a room full of pastors who love your husband like a brother.
I rested as needed but kept working the rest of the day. While I was singing, Vinny texted Matt, not wanting to overstep his bounds or anything, but he was worried about me. Something was very wrong.
Friday, June 9 :
I had a regularly scheduled appointment with Dr. Jones the next morning, which typically includes labs first, then a meeting with the doc, and then to some kind of chemo treatment. (I have one infusion- Herceptin- I’ve been on every three weeks for YEARS.)
My mom opted to drive me over and go the the appointments with me, but quickly discovered that I needed to use a wheelchair and the valet parking to get me where I needed to be that day. When Jones came into the exam room and saw me, my first words were,
“This is bullshit!”
Jones knew from my labs that something was wrong, but seeing me face to face that morning was a jolt.
“When did you start this pill?”
“On Saturday morning. I got it at 5:30 on Friday night from some shifty pharmacy down by the docs or something. Have you been out there to the Specialty Pharmacy?! It’s sketchy.”“You’ve been feeling terrible ever since? Why did you keep taking it?”“YOU SAID IT WAS SUPPOSED TO SAVE MY LIFE!!! Besides, you worked really hard to get it. And I’m compliant.”“Well, it’s not working.”“I mean I feel like shit. Maybe it is.”
…“Your lab numbers are all messed up. I’m 95% sure the pill is not causing this, and it’s the cancer growing fast, but we need another scan, and the fastest way to get an MRI of your brain (*NEW ORGAN INVOLVED*) is to send you the Emergency Department. They’re going to make fun of me for sending you to the ER to get an MRI, but that’s the only way I can get you in on a Friday afternoon.” (For the Record, the ER department said, “We would NEVER make fun of him for this.”)
So Mom & I packed up and drove over to the ER around the corner, at 10 am, knowing that there was ONE OTHER THING on the calendar that day: MATT’S ORDINATION SERVICE AT 7PM. I was supposed to be at a luncheon at noon, but I had to miss it to go do dumb MRI tests instead.
Of course, others had actual appointments for MRIs and some people planned ahead for their illnesses, so I still had to wait. Meanwhile, they LOADED me up with IV fluids because the labs indicated that my Calcium had gone super-duper high for some reason, taking my creatinine with it, and causing some distress to my liver. This is what was causing my large muscles to misbehave, so the medical staff started just flushing my system with fluids to wash it out. I got 5 total bags of saline over the weekend. You should see my swollen ankes….
Oh, and meanwhile, my eyes started getting weird. I can’t find a good graphic on the interwebz, but sometimes the circles around my irises starting whirling like a game show. Kind of like this, but yellow. Open, closed. Didn’t matter. Also some mild hallucinations. Might be deyhdration, calcium or brain tumors. Wbo knows?
Eventually, it was my turn to get into the one working MRI machine left in the system. Originally, we were hoping for 1:00, but kept being pushed back. I eventually got in around 2:30 pm.
MRIs are not my favorite scan to have. They’re noisy, you feel like you’re getting hi-jacked in a 1950’s space aged movie of some sort, and you have to lay absolutely still. I had to have 3 in a row, 25 minutes each. One on my spine, one on my shoulders and one on my head.
Is it weird, that this is pretty much what
I think of when I think of an MRI experience?
I’m in the pod. Only, there’s more metal involved.
Now, lay absolutely still.
For all those who want me to Be Still. Here you freaking go.
I was a rock star at doing nothing for a couple hours Friday afternoon.
After all that being still in the midst of the noise, I went back to find my mom (who had found something to eat along the way, I hope), in the ER, and the results returned pretty quickly.
There is new cancer activity in my brain, and I have to be checked in as a patient for the first time since having cancer (not due to an operation).
Ooo-kay then.
Meanwhile, the clock is winding down. It’s now after 5 pm., which is when I wanted to be gone. But now I’m admitted to the hospital.
Oh, and I have cancer in my brain.
There were some behind the scenes string-pulling by my ER Doc, and Dr. Jones who knew, come hell or high water, I was going to be at that church service that night. They got me out by about 6 pm, which gave me a little time to pull myself together, put on some hair and makeup, grab something to eat (?) and get to the church with about 5 minutes to spare.
Yup. Just like that.
Matt was the last one up, and he had chosen me to be one of the people who would lay hands on him, along with two very influential mentors in Matt’s life, Pastors Kip Roozen and Steve Trevz.
(unseen: Steve making sure I never fell down the whole time)
Think of it as a conga line if you want.
It wasn’t, but sounds like more fun.
They did have robes on.
Mom & I sat down with the rest of the family to say we’re into a new chapter, and now the cancer is in my brain, and there’s going to be TOTAL BRAIN RADIATION soon, and that’s all we know.
Of course,
Total World Domination
comes next
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