Missy’s Story

Site created on May 29, 2021

These are the latest updates on Missy Shelton Belote.

Newest Update

Journal entry by Brad Belote

The last 90 days have been some of the roughest of this journey. I thought it was time to let you all know where we've been and where are.

HOW IT STARTED...

To get you caught up, Missy was diagnosed with ovarian cancer in October 2017. Surgery removed a lot of the cancerous tissue. Eighteen weeks of heavy duty chemotherapy was supposed to take care of the rest. She had a follow up surgery in June 2018. Then we enjoyed six of the best months ever: surprise road trips to New York and Washington, D.C. and our favorite beach in Florida.

Then just before her 42nd birthday in January 2019, the quarterly scan showed the cancer was back and meaner than ever. It wasn't entirely surprising - the bloodwork had been signaling that something was afoot. Having already played the best chemotherapy cards we could play, we had options. We explored clinical trials in Texas and New York. They were longshots and the toll and weight of the frequent travel was not something anyone looked forward to. 

As luck would have it, one of the trials could be conducted in Greenville, South Carolina. Missy could receive the treatment and not have to travel across the country. Greenville had become one of our favorite getaway locations - this seemed to be the ideal option. Before she could enroll, she would need to have the re-emerged cancer debulk or removed via surgery. In March 2019, we traveled to Greenville for what was supposed to be a four hour operation. The doctor returned in 30 minutes with grave news: the cancer was intertwined with her organs that full removal would have required slicing off significant portions of her organs, permanently transforming her lifestyle in a way they had not discussed pre-surgery. He got what he could but the cancer remained and the clinical trial in Greenville was off the table.

Never one to accept defeat, Missy kept digging and found a clinical trial in Dallas, Texas. Three months of commuting (often just to get bloodwork) and treatment found ourselves at another quarterly scan. Missy did not want a prognosis with details from the doctor; she simply wanted to know is this treatment and we keep going, or do we switch to something else. Privately, the doctor told me she had six months to live. That was nearly two years ago.

In that time, Missy has rotated through a series of varying protocols, each equally as ineffective at eradicating the cancer as the previous one. But she lived and lived well. She took on seminary courses no fully healthy person would tackle. She preached and grew in her faith. She drew the people she met closer to Christ. 

Even as the pandemic kept us at home, she used the modern marvels of Facebook to keep the ministry going, cultivating people through her words and her voice. We traveled to the beach three times in one year - something we'd never done before. She mentored our children during their remote learning. Life kept moving forward even the disease attempted to slow her down.

HOW IT'S GOING...

By the time 2021 arrived, we had been through every approved treatment option except one, a rotation of doxil and avastin. As with each previous new treatment, we prayed with hope that this would be the one that could sustain life.

The first sign of trouble was the nausea. It had been a long time since Missy had faced such intense prolonged belly aches as these. Doctors prescribed a synthetic form of THC, the active ingredient in marijuana. She took with lunch one day and the first hour was amazing. The Steve Miller Band had never sounded so good. Then the THC kicked in, her heart started racing, and off to the ER we went. Everything had checked out - she just wasn't ready for the "trip."

Then came the pain in her leg, a symptom of a blood clot. First, she needed a pill, then two injections in her belly every day, then a different pill, then one injection, then back to two. As we were preparing to go to Kentucky for three days of in-person learning at seminary, we noticed her foot swelling. Ten hours in the ER later, the clot was still there and the swelling accepted as a part of the clot breakup process.

Three months into this last round of treatment, the quarterly scan confirmed what we suspected: this treatment, this last option available, this last card glimmer of hope was doing nothing to fight the cancer and doing everything to diminish the quality of life she had. Now it was a time for a Hail Mary: immunotherapy, shown in some very limited cases to be effective against the kind of cancer Missy has. Insurance would have to sign off and if it passed, one last plea of clemency could be made to the pharmaceutical company itself to provide the treatment out of compassion. 

That brings us to the present. A recap:

Wednesday May 12: Missy visits the cancer center for bloodwork. She might get avastin, a maintenance drug. Bloodwork shows high white blood cell count, low blood pressure, and high calcium. Nurses suspect sepsis and send us to the hospital. She is given round the clock antibiotics to fight off the suspected sepsis, although doctors don't see any other evidence of that. She's also given an echocardiogram to monitor some fluid that is around her heart.

Thursday May 13: Missy is given a unit of blood and medicine to reduce her calcium. Scans now show a blood clot in the lungs. 

Friday May 14: The fluid around the heart has not increased - that's good. The clots are still there. She's never had a fever, so the sepsis is not a threat. Under normal circumstances with the things they were seeing, she should stay in the hospital. The attending physician, understanding the journey she's on, recognize that even if she stayed, there would not be much they could to improve her condition. Staying in the hospital has been miserable and she doesn't deserve more misery with little to gain. They give us the option to go home and be with our family.

Saturday May 15 - Monday May 17: Her appetite is very good in the days since we returned home. She is able to get upstairs and then down stairs and then up again. A home health nurse visits to begin getting physical therapy to us so Missy can remain mobile.

Tuesday May 25: I had seen some early warning signs, what I described as missed synapses, little blips in cognition. This morning, those blips manifest into delusions. We have reached a new threshold in this journey and she and I need help. It's time to call hospice.

Saturday May 29: As I am writing this, we have had multiple visits from the folks at hospice and they have all been tremendous. Each day is very intense. The previous chemo cycle has stripped Missy of her voice; even the act of listening to her requires enormous energy. She is still eating. Visitors give her a extra boost of energy. When they come in packs, it leaves her exhausted. Some days, she rests much of the day. 

WHAT YOU CAN DO

People ask what I can do support you all. The village has been very quick and generous in its response. I have more food than I know what to do with. Your prayers are always welcome. Let me offer this guidance:

> Pray.

> Her voice is shot. Calls, audio or video, are not going work. I recommend sending a voice message or a video through Facebook or to her phone.

> One of the very best things you can do is send a card. I read those to her each night. Our mailing address is: 

3835 Lake Valley Drive

Kingsport, TN 37664

> If you are local to Kingsport and want to visit, don't just show up for a visit. Please text me at 423-440-0721 first. This isn't a time for pop-ins. For whatever reason, people seem to cluster their visits together and it wipes her out. Even if we schedule a time in advance, text me before you leave. She rests a lot and my bias is to let her rest rather than disrupt her for a visit.

I will do my best to keep this space updated as the journey progresses.

Thank you all for your support during this challenging leg of the journey.

 

Brad

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