Long Live The Queen

“We live to dance another day,
It’s just now we have to dance for one more of us,
So stop looking so damn depressed,
And sing with all our hearts, long live the Queen”

Frank Turner, “Long Live The Queen”

On October 10th, 2020 Heather Stoker passed away after two years of living with Stage IV colon cancer. She had poured every ounce of her energy into living to see another day, but the cancer infecting her did not care. Her writing has been raw, and emotional, so I would be doing her a disservice if I didn’t write of her last few weeks alive with anything less than the painful truth.

On September 8th she had heard of a promising immunotherapy targeting her specific tumor mutation, the same mutation that had taken some SOC (Standard of Care) options away. This trial was at a hospital very far away, but she contacted the coordinator to see if there was a spot anyway. The trial was almost full, but the coordinator told her if she could find an oncologist closer who is willing to help there is a chance the drug company would open a spot for her. So she set about doing the dirty work of contacting local oncologists, and then oncologists from hospitals where she had surgery, and even the oncologist from her previous trial. She had contacted the drug company and began coordinating access to the trial as well. A noticeable confusion began to make brief appearances, and she took long naps during the day. Still she did not stop.

On September 22nd she was told that her bilirubin count was still not low enough, and that any further treatment would only cause her more harm. Her oncologist, the one she had stuck with and trusted, told her the words she had been dreading. “I am referring you to hospice.” She took the news with a slight intake of air, then responded “but if the counts come down you will be willing to start treatment?” He said yes, so she made an appointment for the following week. Even in the face of defeat, she did not stop.

The week of September 28th was back and forth emails between a trial coordinator in one state, and an oncologist in another state who had agreed to open a wing of the new immunotherapy trial as long as the drug company approved. All of this would happen if her bilirubin count came down. Her skin did not change from a yellowish hue, and she began to spend more time sleeping than awake. There was a very noticeable decrease in appetite, and was struggling walking to get the mail. Still she did not stop.

A friend had given us a wheelchair, and on September 29th I pushed her around the block to get some fresh air. She acknowledged that not having the strength to walk was a bad sign. On October 1st I wheeled her in to see the oncologist. Her bilirubin numbers did not change and when she asked him again “but if my numbers come down, you will start treatment?” He responded with “The numbers haven’t really changed in three weeks, and you have never needed a wheel chair in two years until today” For the first time ever with a doctor, she did not respond. She just quietly nodded her head.

On Friday October 2nd, she signed the papers for hospice care.

Just after she signed, she got an email from the trial coordinator. The immunotherapy trial had been approved, at a more local hospital, just for her. All her efforts and coordination had paid off, they just needed her current numbers to see if she could start treatment. She knew the numbers hadn’t come down, but she set about getting the necessary paperwork to the new trial coordinator anyway. She had the request all typed up in the online medical portal, but she blacked out for a bit and when she woke up again she had clicked away and the message was gone. I told her she could dictate it to me later, and she agreed to after she took a bit of a rest. That was the last real conversation I ever had with my wife, and she slept the rest of the night.

Saturday October 3rd she spend most of the day resting in her favorite recliner, and she had forgotten to even ask about dictation. By then I had contacted friends and family, and despite Covid, I asked people to mask up and come say goodbye. People stopped by to talk or sit with her. She didn’t say much, mostly smiled when she wasn’t asleep. I had to take over dispensing her medication.

The morning of Sunday October 4th I had to bath her in the shower, as she just couldn’t hold the soap without dropping it. She slept most of the day, and a few more visitors stopped by. That night I carried her up the stairs to our bed. I never carried her down again.

On the morning of October 5th I asked for a hospital bed to put into our bedroom, as I didn’t feel she was safe in our bed anymore. The bed was moved in, and I carried her to it. She slept most of the day in the new bed.

She stopped eating on Tuesday October 6th.

Wednesday October 7th she began to struggle to swallow pills, so I had the nurse order liquid pain medication that didn’t require ingesting. She was able to communicate, but it was a struggle. She would say one or two words in a whisper. I never left her side, except for short trips to sit with our kids, or talk with my parents, who by then were sleeping on our couch to help out.

On Thursday October 8th, she stopped being able to drink any liquid.

Throughout the week, our kids would take turns sitting with her. She would noticeably lean towards them, and spend a lot of energy to put her arms around them. She would not fail to kiss our son on the top of his head, like she had done so many times in the past.

On Friday October 9th, while I was helping her to the bedside commode, she said “Stop” as I was holding her. So I just held her in my arms. At her last weigh in, just 8 days before, she weighed 119 lbs. The woman I was holding was skin and bones and at most 100 lbs. I could feel her lay her head on my shoulder. I told her “I love you Heather” and she responded, in a whisper, with the most words I heard her use all day.

“I love you Abe”

Those are the last words she ever said to me.

She was only able to moan or a make grunting noise after that, and I tried my best to help her with what she needed. Saturday morning I crawled into the hospital bed with her, to lay next to her. I could tell it was close. I told her that it was ok to go, she had fought so hard but now was the time to stop fighting. I know this sounds horrible, but I had a very specific reason to say this to her.

The day was Saturday October 10th. It was my birthday. Our oldest daughter was born on October 11th. As much as it pained me to say those words to her, and as much as I knew what her passing on my birthday meant, if she held on on for one more day, it would mean that burden and memory would be on our daughter. So I told her, repeatedly, that it is ok to go, I can take it.

Her father stopped by around 4, and sat with her for a while. I left them alone for an hour, and after he left I noticed her breathing had become very long, but not labored. She had held on long enough to see her dad one more time. There was no look of pain on her face, nor in her body language. She wrote at length about her fears of this, and I had done everything I could to insure that the last week had been pain free.

At 7:02 pm on October 10th, Heather Stoker took her last breath.

Heather was buried in Glen Forest cemetery outside the town of Yellow Springs Ohio. The family laid all the flowers that had been sent to her, along with an entire box of fresh pine limbs from the Pacific Northwest, on her grave.

~Abe Stoker. Best friend, husband, and eternal dance partner of Heather Stoker.