As I said in last year’s letter, mom got sick with what they suspected was pneumonia last winter. A chest x-ray showed a mass, so we went to a cardiologist. After several tests, they suspected that it was a pericardial cyst. It was decided that we’d keep an eye on it for a year to see if there were any changes.
Fast forward to early summer 2019. After I had a Basal Cell carcinoma removed from my head, complete with huge flaps to repair the wound, Mom announced that she had had something on her head for quite a while. She had never shown it to a dermatologist. I pushed her to go get it checked out. The dermatologist did a biopsy and the report came back that it was invasive Melanoma. He referred us to a doctor in Oklahoma City. We were having trouble getting an appointment in a timely manner with that surgeon. We finally decided that we didn’t want to waste time. Mom had always said if she ever had cancer, she’d go to MD Anderson in Houston, so we called down there and made an appointment. We decided after the initial surgery, we could start seeing another doctor in Oklahoma if we wanted.
In July Amy, Mom and I made the first trip to Houston. Because the pathology report showed it was of an invasive size, the doctors in Houston did a bunch of tests to see if they could find signs that the cancer had spread. They became concerned that the pericardial cyst might actually be cancer. The next step was to do a routine biopsy of the cyst. Unfortunately, it was not routine. In recovery, her blood pressure dropped, and she started having trouble breathing. We ended up in recovery for hours, and then she was admitted to the hospital. Apparently, when they poked the cyst to get the biopsy, it started to bleed and inflated from a golf ball to the size of a baseball. They had to remove two liters of blood from her chest. Because the mass had grown so large, it was impairing her breathing.
The surgeons decided that they needed to remove it. While they had her out for the chest surgery, they would go ahead and remove the Melanoma from her head. Two groups (a thoracic surgeon and a head/neck Melanoma surgeon) would tag team during her surgery. David came down from Ft. Worth to sit with me on July 26th during the surgery. The surgery took six hours. It was successful. The first team removed what they told us was a rare thymoma in her chest. These are usually removed by a surgery that is like open heart surgery. Because of Mom’s age, they didn’t want to cut her bones, so they went in her back and spread her ribs to get to the site. The removed another two liters of blood from her chest. The thymoma was precancerous. Then the next team took over. They removed the Melanoma from her head and placed a synthetic skin patch into place. The wound was about the size of a half dollar. With time the skin would grow across the synthetic patch leaving a small bald spot, but without needing the flap that I had to have. They also removed several lymph nodes from her neck. The pathology report came back that the lymph nodes were clear. No chemo or radiation would be required. They declared her cancer free. David was an angel and stayed with Mom that first night so I could get some rest. I was so stressed at that point. Amy and I had planned to just be in Houston a few short days. Instead we were there for days. We ran out of clean clothes, lost our hotel room, had to pack up and move across town to another hotel. Amy and I finally returned to Norman on July 29th when my brother took our place.
Mom and Robert came home with oxygen and a walker on July 31st. They warned us that it would take several weeks for her to recover because it was major surgery and she’d been under anesthetic for so long. Mom lives a few blocks from us, so we got home health care to provide visiting nurses, OT and PT. They also provided help with bathing a couple of times a week. I checked in several times a day and brought meals. For a while, things seemed to be going well. The only real problem seemed to be that Mom didn’t have much of an appetite.
Then on August 11th Mom started feeling ill. The next day the nurse visited, and she suggested going to the ER. Mom was very queasy and couldn’t eat. I took her to Norman Regional. They did some sort of scan, (I think it was a CT) and they feared she was going into pneumonia. They decided to transfer her to the Norman Healthplex, to a thoracic unit. The doctor there was a complete ass. He was mad that we had been put on his floor. He said he was going to discharge her, because she was fine. He declared that she did not have pneumonia. I said we hadn’t chosen to be assigned to his floor, and she was still having nausea and couldn’t eat. The reason we’d come to the ER to begin with hadn’t been dealt with. He countered that she’d had fluids and wasn’t sick anymore. Mom immediately threw up all over her bed, so he backtracked. He said he’d keep her there for observation, but HE wouldn’t be back to see her. Three days later, she was discharged, still vomiting, to Brookhaven Extensive Care facility.
She was at Brookhaven for several weeks. Mom loved her therapists but wasn’t so enthused with the food. She still was struggling to eat and often gagged after a few bites. She was able to go off oxygen while at Brookhaven. The night before they intended to discharge her, she fell in the night. We still don’t know if she passed out on the way to the bathroom or if she fell and hit her head. They called me and said they were sending her by ambulance to the hospital. This was early in the morning of August 30th. After my previous Norman Hospital experience, I requested they send her to the OU Med Center.
I rushed to Oklahoma City to find her in the trauma unit. They did another CT scan without contrast and then sent a chaplain in to talk to me. They told me that an oncologist had looked at Mom’s scan and her cancer was back. I asked them to please call MDA and talk to her doctors there. I even gave them the phone numbers of her teams, but they refused. They said they wanted to just give her palliative care, because she needed to go on hospice. Our time there was horrible. She was still vomiting, not wanting food, and the doctors were doing nothing to help get to the bottom of the problem. Finally, they released her, too. Back home with all the same issues.
On the 9th of September, we went to see Mom’s PCP. She had also been told that Mom was going on hospice. I told her that I had visited with Mom’s doctors in Houston and they did not agree. We had her on two kinds of anti-nausea meds, and she was still struggling. She decided that maybe mom was just depressed, that it happens a lot with people who have major surgery. She put Mom on antidepressants and Mom immediately started eating again. She had been not eating for about a month, so she didn’t have much appetite, but at least we could get her to eat a little. I had to take her to Mercy one night to get her rehydrated, but then they let her go home.
A couple of weeks later, my cousin took Mom back to Houston. I couldn’t go because Amy had committed to speaking at the capitol. They saw all her doctors, who confirmed that she didn’t have cancer and was slowly healing.
October 8th, I took Mom back to her PCP. She did another chest x-ray. Fluid was building up again and she was having trouble breathing. She sent us back to Mercy ER, because they could see her x-ray online. They decided to admit her to the Oklahoma Heart Hospital because her pericardial sack had fluid buildup. The next day she had a successful surgery and stayed there several days.
November 7th, we made another trip to Houston, where they found another spot on Mom’s head. They did another biopsy. This one was NOT Melanoma. We will be returning to Houston in January to get this new spot removed. We could have had Mohs surgery here in Oklahoma, but since they don’t do the synthetic patch, Mom said she’d prefer to go back to her surgeon.
Mom continues to improve. Recently, she was told that she could forgo her walker unless she was planning to do a lot of walking. She still doesn’t have much of an appetite. She’s not driving yet, so I’m still her taxi driver. Her right hand and shoulder are not working well. The doctors wonder if she might have had a slight stroke. She is scheduled for a scan of her head before the end of December. Next year, she’ll probably be sent to PT to see what we progress they can make. She can’t go for intensive therapy if she’s got home health care. I’m still getting meals, because she’s not up to preparing them. The church is starting to provide some meals for her which is awesome.
We’ve been in four hospitals, had four trips to the ER, had three different surgeries (with another scheduled next month), and more scans and x-rays than I could begin to count. We are all ready for some improved health in the New Year.
Schones Family Website 