Darling, We Are Growing Old

One still and strange night

DeRay and I both happened to be awake at 4 AM.

“You know,” this voice from the darkness says,

“Everything happens to you.

Nothing happens to me.

I always wanted you to take care of me.

Sometimes I’m jealous of you.” 

At last. we now know,

what has caused the tension

the past three years while I’ve been in battle. 

A few days later, he got even.

He stole the show.

Oh, yes!

Another massive cold sweat.

Groans and dreadful sounds

High and loud.

I call Amy.

Amy calls 911.

Brooke came.

And when DeRay gained consciousness

after they gave him a shot of glucose

(blood sugar was 40 – should have been around 100)

surrounding his bed were ten uniformed paramedics –

five from Layton; five from Kaysville,

as well as Brooke and Amy,

plus two fire trucks and an ambulance.

A diabetic coma.

Impressive, DeRay. Impressive!

I concede.

Cancer during Pandemic - Part 1 of 5

THE LONG AND PAINFUL HIATUS

No words can adequately express my heartfelt thanks
to the millions of you from all over the world

who have joined me in home-isolation.

For over a year now,

I haven’t left the house much except for medical care.

Now that I know you are staying home from church with me,

not holding club or eating out,

I feel your strength and benevolence.

What?

You’re staying home because of the pandemic, you say?

That’s actually smart.

I got tested for the virus

before I could have surgery Wednesday April 22.
So did Verla before her surgery on April 27.
Count us in the polls.
Negative.

PANDEMIC

Quoting Brooke from his weekly letter: Covid-19, our friend the Coronavirus.  It’s literally all anyone has been able to talk about for weeks and weeks.  Crazies and not crazies have been flooding the grocery stores, the big box stores, the Costcos and Sam’s Clubs to buy toilet paper, flour, sugar, paper products, meat, fruit, vegetables, medical supplies, bread, and everything else.  I’ve never seen shelves so empty throughout every store I’ve been to.

     It all happened so quickly last week, I couldn’t possibly recall the facts accurately but the main thing was that Monday and Tuesday we were still feeling pretty optimistic but it was declared a world pandemic on Wednesday.  That was the day that members of the Utah Jazz were diagnosed with the virus and the NBA shut down.  The next day universities across the state closed and moved to online instruction.  4 PM on Friday brought the news conference that confirmed that schools would close for at least 2 weeks leading up to spring break.  That means at least 3 weeks without classes and the promise of online classes and somehow helping students continue to learn while keeping them at home

     News along the way changed nearly by the hour.  Temples closed, missions closing.  Missionaries being sent home early.  Missionaries from the Philippines being shipped out of the country.  Today missionaries in Africa are being shipped out.  European travel was restricted and on and on.  We were very glad that Isaak didn’t end up going to London last week.  That would have been even more stressful.
    The other day of note was Ed's Birthday. Wednesday March 11. Elizabeth was preparing all day and even for days. She made the most delicious Russian honey cake  and enchalautas that were just for the family dinner after the main event. She also made cupcakes and other treats for the neighbors. We invited them all to come over for a quick party for Ed and almost all of them came and brought greetings and gifts. Ed had a good day.

     Our last contact with people was the openhouse for Ed’s birthday. Schools closed on Friday March 15.

     March 18, we woke up to a magnitude 5.7 earthquake that messed with all our heads and our plans.  (end of Brooke)

APRIL 1 THROUGH APRIL 21 – Since schools closed on March 13 – Friday the 13th! –all days seem the same. You can’t tell one from another.  Every day feels like Sunday to me. Why I don’t know, except that maybe it’s because I don’t do anything.  Just keeping the Sabbath Holy every day. Ed is getting a little more used to entertaining himself in his room. He and Amy generally go on a trike/bike ride each day.  He’s becoming an introvert again. I talked to Carol and Verla every day that Carol was up to Verla’s. Verla said she couldn’t have done it without Carol.  The Shepherds brought Shepherd Pie, jello salad w/fruit and chocolate chip cookies for dinner one night. Alan and RaJean brought chicken soup, fresh green salad, cookies made without flour, a fresh fruit bowl and a fresh loaf of sour dough bread. Nearly everything is closed: gyms, restaurants, theaters, schools, library, churches, beauty salons, parks, including State and National. Grocery stores are open. Gnocchi languished. Amy thought everyday was his last day for a couple of weeks. Then on a Saturday, Pancake suddenly took ill. She groaned from that moment on. On Monday, Amy took both of them to the vet (separate vets). Both were full of cancer. So Tuesday, she took them both in and watched them die in peace. Gnocchi and Pancake: April 14, 2020. We were in mourning the next day and longer. They were a big part of our lives and we will miss them. Then Thursday, Amy came home with a 7-month old kitty that is so beautiful. She has fox ears so we’re wondering what her pedigree is.  Amy and I have about settled on Sola. The trouble is, we can’t remember it.  Last Thursday, April 16, I went to my doctor’s appointment. They wouldn’t let DeRay come in. The doctor wants to put me on a different chemo because he says this one isn’t working. Brooke definitely doesn’t think I should.  I hate to give up but I don’t want to prolong suffering either. I needed my people there to help me ask the right questions and make the right decisions.
     It seems I have abnormal cancer cells. All cancer cells are abnormal; mine are abnormal abnormal.  Rarely, if ever, do breast cancel cells go to the uterus or cervix or to the bones. Nothing we have tried has worked. Cancer just keeps spreading. Since the kyphoplasty relieved me of a lot of pain, the doctor has decided to try a new non-chemo drug "Piqray". So far, from the meds all I've got is side-effects. No help. Not even radiation has helped relieve pain or spreading. Nothing.


Ed's comments in March after the shut-down:.
“Somebody got the garbage can in, Mom.  It burns me up. It’s a long time until next week.” “I can’t believe someone is doing my job. They know it is my job, not theirs.”
“You’ve got appointments this week, Mom. I’m jealous.”
“I miss my friends.”
“I miss our swim.”
“I’m getting nowhere because you’re here. I don’t like to be lonesome.”
“I hope everyone gets feeling better, Mom. I don’t want to be stuck here.”


To Brooke, Elizabeth and Klarissa:  I guess you told Eddy that Isaak and Klarissa were driving to San Diego and back.

He comes whining to me:  "I don’t know why Klarissa can’t stay home. What does she use for brains? She knows there is a stay-home policy." 

Part 2 of 5

CANCER TREATMENT – SURGERY DELAY

I don’t know when it happened

but the pain got worse each day

and by the end of February, I had had all I could take.

My appointment with Dr. Vaklavas and infusion

was on March 5.

Pathological fracture of Vertebra 11 and 12.

They were going to take care of everything:

Cancel the chemo (over $80 co-pay)

Make appointments for radiation and

other procedures with the SOS team.

I’m calling the pain at times unbearable,

Excruciating.

They do nothing so

I contact Dr. Burt, my radiation oncologist.

By some miracle she gets me an appointment

for an MRI at the University Hospital

7 AM Friday 13.

DeRay drives. 

By some miracle she gets the mapping for the radiation

at 9 AM

And around 3, I had two strong radiation treatments.

I couldn’t tell much difference in the pain level.

Dr. Burt arranged for me to meet with Dr. Jill Sindt

I had virtual visit with Jaclyn SOS in Farmington.

Amy and I drove to Salt Lake in about 4” of snow

beautifying the trees, houses and yards.

Especially beautiful around the capitol building and the avenues.

Appointment with Dr. Brogan at 10:20 AM

“Free valet parking, Amy, you won’t have to do a thing.”

Ha! What a mess!

No valet service;

we had to park in the parking garage and walk.

It’s still snowing.

We asked for a wheelchair

but somehow he couldn’t find us.

Then when we got to the front doors,

they wouldn’t let Amy in.

“I need her.”

“She can’t hear.”

Too bad.

So she could either go to the tent

or sit in her car for 3 hours in the cold.

The nurse took my vitals then a play-doctor came in.

I was talking to Amy and hung up when he came in.

I was supposed to leave the phone on

so she could participate in the discussion.

Dumb me.

So when Dr. Brogan came in, I turned my cell phone on speaker

and she could hear everything and talk with us.

He had on a mask and didn’t shake hands and stayed 6 feet away.

He decided that the cement procedure could help alleviate the pain;

also they would shoot radiation into the tumors growing and around it

and eradicate some of them.

He usually operates on Wednesday but he would do it Monday.

I joked that I didn’t eat or drink so they could do it today.

We just caught the window.

How lucky we are.

Amy somehow sprained her ankle

while waiting in the car so she’s a cripple now.

The next two days, nurses called with instructions for surgery

on what to eat and take and all.

Then Friday afternoon, after Amy, Eddy and Carol left

to take Carol to Logan to stay with Verla,

who had recently been released from the hospital after an emergency visit,

the doctor called himself and said the surgery had to be cancelled.

No one over 70 allowed in hospital.

No elective surgery.

Governor’s mandate.

Ouch!

Amy posted this on Facebook:
I'd like to know when we became a society that values one life over another. When we discriminate and decide who gets care and who does not. Who suffers and who gets care. If your over 70, then just suffer and die, there are no other options, you cannot get treatment of any kind no matter how urgent necessary or in pain you are in. It's illegal, immoral, and heartbreaking. All because we can't order some damn gloves and masks."

To Dr. Brogan (who, by the way, is an Irish Citizen): If I talk to you when I'm not hurting so much at the moment, I understand the situation (of the cancellation). If I were to talk to you when I'm in 10 pain, I would not claim to understand. Now seems like the best time. It's might be a year or more before I get help.

SUPPORTIVE ONCOLOGY AND SURVIVORSHIP

CANCER PAIN SERVICE (SOS-PAIN)

Lindsay M Burt, MD

Date received:
03/20/2020 03:46 PM
RE: Medication Question
You should call Dr.Sindt's office. They should not have cancelled your appointment. They must get permission first. Call them and request that you must be seen.
I don’t think you necessarily have new disease in your spine. It is sometimes hard to compare CT to a MRI. Some of the lesions were not noted on prior scan but were seen and then some are now seen but that is likely just due to differences in imaging. Although it is hard to know for sure.
Thanks, Lindsay

Part 3 of 5

MEDICAL MARIJUANA

Since I found out I have thyroid cancer in 2012,

I have insisted that medical marijuana is going to become legal

in Utah just when I need it for pain.

I even told my Bishop this.

Is this why he hasn’t been back?

Oh no, it’s the pandemic.

I frequently checked with my oncologists and they

showed no interest in helping me procure it.

As the pain increased, Brooke decided to jump in and help

By coincidence, his x-neighbor is one of the few doctors

in Utah certified to order medical marijuana for patients.

Brooke jumped through all the hoops and filled in all the paperwork

Even paid the fees,

And in two days I had the medical marijuana card in my hand.

On April 1, Brooke, Elizabeth, DeRay and I drove to the

Dragonfly Wellness in Salt Lake

Elizabeth and I spent $200 on drops and cream.

Whoever thought it would be that much?

Opioids are practically free.

Things are not exactly up and running,

When these drops were running dangerously low,

Thursday after our video appointment with the neurosurgeons,

Brooke and Amy set out for Ogden to buy some.

That store wasn’t open yet

so they drove onto North Logan to the new one.

They got stuff that is 4 times stronger

for the same amount of money.

Before our video appointment,

we went to Farmington Clinic to have x-rays on my legs

and another bone scan.

Does the medical marijuana help with the pain?

I don't know.

Part 4 of 5

KYPHOPLASTY

     Kyphoplasty is a procedure in which medical cement is injected into the painful spinal compression fracture. It often helps to reduce pain level and get you moving again.  Kyphoplasty is usually performed in the operating room under general anesthesia. Live x-rays are used to guide a needle to the location of the fracture in the spine. A special balloon is then inflated to create a small space near the fracture. Then the medical cement is inserted and hardens quickly. The pain relief from kyphoplasty is usually immediate because it lifts the vertebra off the nerves.
     I had to have two vertebrae repaired plus they shot radiation droplets into several of the tumors, using the same needles. It's an undaunting thing to have surgery during the pandemic. Someone drops you off at this big cold building with strangers waiting inside with drugs, knives, and needles. You are completely at their mercy as in the early morning dawn you walk alone into the abyss. 

Brooke journaled: I guess the biggest thing we had going on this week was mom’s surgery/procedure.  It was interesting because we were further away but in some ways felt like we knew more because we were able to be a part of the Zoom meeting with her doctors. We got to see the scans and images and hear exactly what they were going to do and the warnings about fragments of the spine possibly pushing against the spinal cord and causing more pain or the small possibility that it could lead to paralysis weren’t that encouraging but mom decided to go through with it anyway. Even though it turned out to be a long day for her (she had to be in SLC at 7 and didn’t get home until 3) when we talked to her later that day it was the best day she had had in several months.  She later called it a gift because she could walk and move and sit without pain.  She was smiling and laughing and feeling really good.  It was nice to see. We got some great pictures of her and Verla laughing as we talked over FaceTime.  Verla has a procedure next week and we were trying to see if we could help. The next day she was just a little worse but she still felt better.  I think it was a reminder that she needs to stay ahead of the pain so she can function but we also hope that the glue or cement they pumped into her spine will have a longer lasting effect and much of the pain she has been experiencing.  

Part 5 of 5

Note from the Doctor

     My intention is to keep you as comfortable as possible and for as long as possible.  Thankfully, the cancer is nowhere close to claiming your Iife, but quite clearly is making life miserable in terms of pain.  The pain comes from the cancer progressing.  The cancer has found a way around capecitabine and it is growing despite you taking this medication.  Right now the top priority is to limit your pain.  Kyphoplasty holds a very good promise to mitigate pain.
     After the kyphoplasty, we need to maintain the disease in remission.  The treatment that I have in mind is a medicine called paclitaxel.  There are many ways to give the paclitaxel but the least intrusive, least burdensome in terms of side effects, and the most efficacious is to receive this medication once weekly.  Unfortunately the medication is IV, only capecitabine is oral chemotherapy.  Paclitaxel especially weekly, is very well-tolerated.  Side effects include tingling and numbness in your fingertips and the tips of her toes, as well as diffuse muscle aches and pains on day 2 or day 3 following the administration of paclitaxel.  My intention is not to burn you with this chemotherapy but with this chemotherapy tried to keep the cancer in remission as long as possible without compromising your quality of life.  Dr. Vaklavas

I LOVE MY BODY

When I first got cancer, I felt my body had betrayed me. Then I realized that cancer betrayed both my body and me. My body has been rather heroic, shielding me from pain until the fracture in my back. I am so thankful for a strong resilient body, parts and passions.

Hummmmmm

I remember hearing as a child, that hair and fingernails keep growing after you die.  My hair got thicker and my fingernails grew longer than they ever have.

Am I dead?