Emerging into the Light (part 2 of “It’s All Hitting the Fan.”)

Well, to no one’s surprise, I made it through the weekend. Er.. week. Anyway, I’m still here.

Let’s review for a second how we got this far, shall we?

Here’s a quick review of the timeline:

I believe we left off here…

Friday, June 9: 10:30ish pm I go to the hospital with soft pajamas and bathrobe in tow, knowing it’s going to be a bit of a stay. (Pockets turn out to be especially important.)

Sleep overnight. You know how it is, it’s not a hotel. It’s a hospital. You need help to do everything, you can’t get out to go potty by yourself because you’re hooked to an IV pole, they’re measuring all your vitals all night and all day. You have to pee in a thing they call a hat, but they don’t want to touch your old pee after a while, just know you did it and how much. Oh, and are you pooping?

Blah, blah, blah. Get Amy better. 

Now it’s Saturday, June 10. Maia’s 19th Birthday. Maia has plans with their Significant Other, Michael, and the First Congregational Church downtown to be in the Pride Parade and go love people and enjoy being a colorful part of the rainbow of life. 

Yes, they’re basically twins. 

Vinny and Xander also had to check out all the fun at DTSF Pride. 

Dad hugs, methinks.

Xander was working with Molten Audio running sound for live events that day. It was a whole adventure unto itself. That’s his story to tell. 

I stayed at the hospital and had to make do with rainbow sherbert (which was frozen really hard when I got it, then I slept through until it was too sloppy to eat on Saturday. First World Problems) and rainbow frosted cupcakes on Sunday afternoon. 

Saturday, by early afternoon, Matt’s pastor friends from Annual Conference start showing upon their way out of town, as do gifts and a few flowers from the gift shop. Thank you to Pastor Eric Van Meter who brought Matt some Slim Chickens to eat for lunch, and all friends who sent snacks, flowers, candy, balloons, etc. 

Y’all, the POWER OF COMMUNITY hooked into full swing! 

Now if you’ve ever met me, you know I LOVE BEING AROUND PEOPLE. I am so extroverted that I tip the scale over when I take a test. But while I’m energized with my loved ones around me, I also feel a bit of responsibility to keep the conversation going, stay lively, make sure everyone is comfortable, etc. So others took on the Power Under gift of starting a GoFundMe to support our family during this time. 

Two super women, in particular deserve a special thanks here. I want to give SO MUCH THANKS TO EMILY WILSON AND MACIE LUPICA, two of my “Steel Magnolias” who have all become my besties for life, created a GoFundMe campaign for our family. 

UN. STOPPABLE.

If you are a GIVER and would like to contribute to our GoFundMe, feel free to stop by here and make a donation. Or if you’re more of a “Bring a Meal”- type person, you can do that here due to a Meal Train organized by the beautiful Rogene Brown and the good people at our church, Asbury United Methodist. Thank you for your giving heart. We see you and we appreciate you so VERY, VERY MUCH!!!

Please do not feel obligated in any way to give to us. I want you to know that we are so well-cared for! I am not worried about money for the business, for the house, for Maia’s sophomore year of college (well, a little… there’s gotta some kind of scholarship they can get, for having a mom like me, right?)

Right… back to cancer stuff. So, Saturday night. We’ve had a few guests at the hospital, and I’m starting to perk up. Go for a couple of short walks around the unit, the IV fluids are starting to work and help balance my calcium and liver or kidneys or whatever. (My mom has more detailed clinical stuff sprinkled throughout my FB comments. I’m a story-teller in this setting, not giving you my medical chart.) 

Matt hangs around for a few extra hours, hops into my fancy hospital recliner bed with me and we snuggle up and take a nap to pass the afternoon away as “normally” as possible.

The point is, I’m starting to feel better.

Sunday, June 11:

Matt doesn’t have to do church. 

I don’t have to do church. 

It feels weird. 

We hang out in the hospital room and watch Carly do church online instead because she has been leading the Confirmation Class and it’s confirmation Sunday. She brings her dog to church. Now I’m sad I missed church. 

Pastor Kip takes over everything else. 

Ok, when does Maia’s birthday party start? Well, they don’t want to bring dinner to the hospital, so they celebrate at Mom’s without me for a while. 

It’s fine.

When do I get to start seeing my people again? It’s 2:00 pm.

First, all of our theatre/community friends have to arrive. We had a room that looked like this for a while: 

(Not pictured: several other friends, and all the snacks)

Once people started arriving, they didn’t stop. The gift shop was like, “Oh, aren’t you the popular one?” and flowers started to arrive (I had been on a brief COVID restriction because I coughed once.). 

It was a long afternoon of healing, talking, resting, visiting, eating, walking, pooping, peeing, and staying alive. But I got cupcakes and finally got to celebrate Maia’s birthday. More hunkering down with Matt for the evening to watch a little streaming TV, then off to a not terribly restful hospital night.

Monday, June 12

Oh look! It’s a work day for the rest of the world! I am starting to see visits from doctors I know, and the one I’m most interested in is my Radiation Oncologist, Dr. Murphy. 

This is the guy I needed some answers from. 

So far, I’m in that awful place between “The cancer is in your brain” and “We don’t know how bad it is or what the plan is yet.”

So Dr. Murphy comes in, asks what I know from the ER doc and the Hospitalist who have given me some news but not enough. 

“Let’s start with your questions for me,” says the kindly, nerdy, tall man.

I said, “I’m worried about the term ‘Full-Brain Radiation.’ This sounds like it’s going to turn me into an idiot for a while, and I kind of need my brain. You know I opened a business 5 days ago.”

He said, “Who told you it’s going to turn you into an idiot?”

“Well, probably me. This is my interpretation: ‘Short-term 2-week idiot after treatment’ is what I got out of all of these conversations. There’s new cancer in my brain, this is why I feel mushy, can’t finish my sentences, my eyes are acting weird, my head is lumpy and I can’t play the piano -or write, or express myself in any way. From what I understand, you have to do a blanket layer of Napalm on my brain, then you can pinpoint what’s left. I won’t remember short-term stuff, but I’ll keep all the old memories. Aren’t brains important for other stuff?

I guess there’s more math involved than this.

So Dr. Murphy camly explained that there were far more details and science and TRIGONOMETRY involved in brain radiation than this, so now it feels more like this to me?

Look, I just make pretty music, man.

Well, I felt better about things after he left, somehow, and they sent me down to get my face mask made for radiation that afternoon. 

The mask is kind of like this, but mine is lavendar, which is a nice feminine touch, I guess. 

They bake this plastic sheet full of holes in a little EZ-Bake Oven to get it just warm enough to let it soften down over your face, while using a cool hair-dryer to keep your skin from melting at the same time. Overall, not an unpleasant experience. Now, doing Google searches though, I’m really disappointed that I didn’t get to go through this at a Children’s Hospital. Look at the options!

I asked where they stored all these masks? Like in a Game of Thrones-style Hall of Faces? 

seems like a wasted opportunity to me.

There are protective places in the mask that will keep the radiation from ruining the important parts of my brain, and I’m on some kind of medication that will protect the MYELIN (remembered that word) too. I don’t pretend to know how any of this works.

Dr. Murphy also gave me the great news that I would finally get to go home that day!!! (Monday evening, June 12)

My blood levels were steady enough to still have the pain port surgically implanted on Thursday, I hadn’t seen my main oncologist, Dr. Jones since Friday, but I was ready to get OUT OF THE HOSPITAL!

Tuesday, June 13

Now I have to adjust to life at home, try and figure out how to keep work running, and give myself a couple of days to recover before going back in for surgery on Thursday. When does brain radiation start? Tomorrow? 2 weeks? I don’t know.  

Vinny the rockstar drove me around on Tuesday. Came and picked me up for work, we did little a few little piddly things, went and bought office supplies, I did one intake session, then called it a day after about noon. 

The Magnolias invaded that evening. 

The 5 other women I shared the stage with in the SF Community Theatre production of “Steel Magnolias” are special to me in a way no other group of women has been ever before or since.

Like my OG movie poster knockoff?  

Love ya’ more than my luggage, girls!

This was us before we ever started at the Orpheum downtown. Then we went on tour together the next Fall. Meanwhile, we talk Every. Single. Day on text. It’s mostly Lisa Kutter’s fault. She has no filter.

Here we were back together in the same room last week:

Some of us look exactly the same.

Some of us have been through some really 

tough physical crap since those first days.

It was so nice to unpack our lives a little on a deeper than surface level. Plus they brought food and gave me a nice new soft jammy/robe set to celebrate NOT being in the hospital for a while. 

After they left, I went to sleep in my own bed, and slept all the blissful night long! 

Wednesday, June 14

My BFF since 2nd grade, Amy Lu Scheaffer drove to Sioux Falls (minus any of her own 6 children) to be my chauffeur for the day. Amy and I were always doing music and theatre things together as kids, and I like to say she always played the Sweetheart, and I always played the Dingbat on stage. 

Here’s an oldish picture. We’ve been friends for a long time.

I’ve always been the tall one. 

My brother, Casey also came over to SF just see me and we had a nice visit at the house for a bit that afternoon.  (I think Mom scared him a little) so I got to grab a picture with these two who happened to be the Best Man and Maiden of Honor at our Wedding in 1992.

 Amy came with me to the studio, saw how things are run there, took me to a surprise oncology visit that I found out about on that morning. I had labs too, so we grabbed lunch together at the Prairie Center between labs and meeting Mom & Matt at Dr. Jones’s office. 

Amy came with, and I’m glad she did (She’s wicked smart). Everyone is so worried, and we all feel better after Dr. Smarty pants talks to us for a while. He has assured us that there are still more tools in the kit.

So the next plan looks like this: 

Does anyone remember what this means?

Sacituzamb is the winner I think. Mom will clarify. 

The point is, cancer is hard to kill because it keeps mutating.  

I’m happy to be a voice teacher. Those problems are so much easier!

BUT FIRST- fight the insurance. 

Yup. Back to that again. Hooray for patient advocates!!! I don’t know how you can fight for your own coverage and survive. I would literally just quit and die. I think they count on that a lot.

“Luckily,” we can’t start the new chemo until we finish the brain radiation so they’ve got some time to do battle. Apparently, it takes a few days to figure out how the math works on all the radiation stuff, but we now know the timeline for radiation is:

Starting Radiation this Tuesday, June 20 in the afternoon, then every weekday at 8 am until July 3.

Whew. I’m going to call that post #2 on this topic. Next, we’ll talk about having pain pump surgery and only booking one gig the weekend afterward.