I remember Yvette, after I came to North Carolina, to help care for my terminally ill twin sister, asking me, “You’re not going to leave as soon as Deb dies, right?” I assured her that I would not and that I would be here for long as she needed or wanted me to be. The relief on her face was palpable.
Yvette was struggling with hip pain when I got here. She chalked it up to years of nursing and not always following the protocols for lifting and transporting patients. Toward the end of 2019, Yvette went to see an orthopedic surgeon who did an x-ray and said she needed a hip replacement.
Yvette’s plan was to have the surgery done after Deb died. But COVID restrictions were enforced within a week after Deb’s death on February 29, 2020, and that meant everything changed. Instead of having Deb’s memorial service and the church she and Yvette were members of, we had a small memorial service at home. Yvette’s hip surgery was considered an elective surgery. Elective surgeries were postponed indefinitely.
Yvette’s hip pain continued to worsen. In April 2020, Yvette also began to experience heavy bleeding. An early May appointment with her gynecologist confirmed fibroid tumors, but ruled out cervical cancer. The pain, though, was getting worse.
In mid-May, I took Yvette to the emergency department at a local hospital and they confirmed fibroid tumors as well, noting that one was the size of an orange. At that point, Yvette’s gynecologist referred her to a surgical gynecologist (what we did not know at the time was that the gynecologist, Dr. Janelle Fauci, was also an oncologist).
We had an appointment with Dr. Fauci in mid-June. She had seen the ultrasounds and recommended a hysterectomy. Dr. Fauci said she would try to save the ovaries, because that would protect Yvette’s heart health, but if she had any doubts, she would do a complete hysterectomy. The surgery was scheduled for July 16, 2020.
In the meantime, Yvette’s pain seemed to be increasing by the day. The worst pain was on her right lower back. We assumed it was related to her hip. We also tried everything possible to give Yvette some relief. Our efforts didn’t help much, and oftentimes she’d end up in tears and I’d sit near her and cry with her because I couldn’t do anything to make things better for her.
By the time we went in for the hysterectomy, Yvette’s pain had become almost unbearable. For two weeks before the surgery, the only pain medication she could take was over the counter Tylenol (we had gotten prescriptions for ibuprofen and Tylenol III, but they were stopped for the two weeks prior to surgery). Yvette was miserable.
On Thursday, July 16, 2020, we drove early in the morning to the main hospital where Dr. Fauci would do the hysterectomy. I was allowed to stay in the hospital in the surgical waiting room, but I basically had to deposit Yvette with a nurse almost as soon as we walked in.
I got coffee and went to wait. I had instructions from Yvette about who to keep informed about the surgery and the level of detail I should provide. Several hours passed. The waiting room attendant called my name. I got up and went over to the desk, and she ushered me into a small private room, told me that Dr. Fauci would be there shortly, and closed the door.
I knew the news was bad because I had watched other surgeons come into the waiting room to talk to the family member who was waiting. If what Dr. Fauci had to say to me needed to be said privately, it would not be something good.
Dr. Fauci came in the room a few minutes later. She sat directly across from me and said she had to do a total hysterectomy. She paused a second or too, then looked me in the eye, and said she’d found leiomyosarcoma during the hysterectomy. Dr. Fauci said it was a very rare and very aggressive form of cancer. She believed she’d gotten all of the cells in the cervical area during surgery, but she wanted to admit Yvette overnight to do a full body scan to see if it had spread anywhere else.
Dr. Fauci also recommended chemotherapy as soon as possible. She asked if I had any questions, and I said I didn’t, so she said as soon as Yvette was admitted to a room, the attendant would let me know and I could go and see her.
Yvette was still pretty sleepy when I got to the room, but I stayed a while and made sure the nurses kept up with her blood sugar and, as soon as she had awakened a little more, we talked about what Dr. Fauci had found. Yvette wasn’t upset.
I had already started doing a ton of research on leiomyosarcoma and knew the prognosis was bad. Sarcoma survival rates are very low and usually by the time the cancer is found, it has already spread distantly (to remote areas from the original source). I had also investigated Social Security Disability and found that disability is granted quickly when the diagnosis is sarcoma.
I stayed until Yvette started getting sleepy again, and I told her I’d be back first thing in the morning before she had the scan. When I arrived the next morning, Yvette was drinking the liquid for the scan with contrast. A short time later, she was taken for the scan.
A half hour or so later, Yvette came back to the room and we waited for Dr. Fauci. Dr. Fauci came in about 45 minutes after Yvette got back. She told us that the scan showed metastatic cancer on Yvette’s right lung, multiple tumors in her left lung, and tumors on her liver. She reiterated that Yvette should start chemotherapy as soon as possible.
The next week was pain-filled for Yvette. Dr. Fauci’s office called on Monday to give us the first date for chemotherapy – August 5 – and Yvette asked if anything could be done about the pain. The office scheduled an x-ray at a nearby hospital and we went to an afternoon appointment the next day. The x-ray showed fluid buildup around the lung, but the hospital said it was too dangerous for them to remove it.
On Thursday, Yvette called Dr. Fauci’s office again about pain. We got an afternoon appointment at a local hospital where they did an ultrasound. The ultrasound found a blood clot in Yvette’s IVC and surgery to remove it was scheduled at the main hospital for the next morning.
Once again, I got Yvette into the appointment, but this time I was not allowed to stay in the hospital. I spent the next six or seven hours rotating between walking and sitting in the car working. I knew Yvette would be there for several hours because I knew that groin procedures required a few hours of weighted pressure to stop bleeding and make sure blood clots weren’t thrown as a result of that.
However, as eight hours approached, I sensed that something must be wrong. At almost the same time, my phone rang and the doctor who had removed the blood clot said that everything went fine with that, but that Yvette had a bleed out from the groin entry point. It had been stopped and she was okay, but he didn’t feel comfortable sending her home, so he was going to admit her overnight. He told me that her nurse would call me once she’d been admitted and was in the room and I could go up.
When I got that call about 20 minutes later, I went up. Yvette was in good spirits, even though I could tell she was in pain, and she told me firsthand what had happened. Shortly after I got in the room, one of Dr. Fauci’s P.A.s came in the room and asked how she could help.
I said the biggest issue was Yvette’s pain, and she said she would get started on pain management right away. Yvette ended up staying in the hospital 12 days. During that time, she got some targeted radiation on her right lung, her pain was slowly getting manageable, and we had chemotherapy 101 training.
We also got an official diagnosis from Dr. Fauci: stage IV leiomyosarcoma. Dr. Fauci said she would “try to buy Yvette a year or two.”
Chemotherapy was hard on Yvette. Every single side effect that the nurse from Dr. Fauci’s office went over with us (really just me, because Yvette slept through most of the training), Yvette suffered with. Every off week from chemotherapy, Yvette ended up in the hospital for a week or more.
When Yvette started losing her hair in clumps, she asked me if I would just shave it all off. I did and we got some soft caps for her to wear so she wouldn’t be cold. When someone whom she thought was a close friend – and who was co-medical power of attorney with me – ghosted her early in her diagnosis, she was hurt, but she simply carried on, asking me who I would recommend as a co-medical power of attorney. When I gave her the answer, it was the same person she’d been thinking of, so we just moved forward from there.
Other than the ghosting, we did have some absolutely fabulous support. In a way I’ve never seen before, Yvette’s church family stepped up and stepped in. A meal train was set up so that we had three meals a week dropped off at the house. And they weren’t just meals for two, so we had plenty of leftovers.
Extra effort was made to make sure that Yvette had some diabetic-friendly treats and that I had a non-ending stash of cookies and cake. Meals were dropped off on holidays. People who were at the grocery store would text me to ask if we needed anything. No one would let me pay anything for what they bought.
People visited both at home and in the hospital. One elder almost exclusively relieved me around 4:30 pm during hospital stays so I could get home and take care of the animals. She would stay with Yvette until visiting hours were over at 7 p.m.
After Yvette suffered a particularly painful side effect of chemotherapy – hand and foot syndrome (chemical burns on the tops of her hands and the soles of her feet), Dr. Fauci decided to stop chemotherapy and see where we were.
The next contrast scan showed that chemotherapy had failed. The cancer was still spreading, and tumors were get larger and more numerous in the lungs and on the liver.
Yvette was disappointed, but no matter what happened or how bad things were, she was brave and courageous. Her faith remained intact. In fact, she usually sent out an email update once a week that included as part of Yvette’s signature:
Yvette’s emails were factual, but optimistic. She steadfastly believed that God had more for her to do here on earth.
But the hospitalizations weren’t done. A few days after the scan showing the cancer progressing, Yvette suddenly started have difficulty breathing. She’d been on oxygen since the very first hospitalization, but on a low setting. Now, her pulse oxygen was dropping into the 50’s. Another hospitalization for acute respiratory distress showed lung opacities (pulmonologists called it “shattered glass”). Chemotherapy had caused extensive lung damage.
A week on high doses of steroids (followed by another month at a lower dose at home) helped. During that hospitalization, though, both Yvette and I saw the extent of the cancer in her lungs and on her liver. It was sobering.
But Yvette didn’t give up. Even though she came home on a higher dose of oxygen, Yvette was determined to try chemotherapy again if her lungs responded to the steroids. One week after the steroid treatment ended, Yvette had another scan. The pulmonologist said her lungs had 99% recovered from the chemotherapy damage.
Yvette had an appointment with Dr. Fauci a week later on December 2, 2020. When Dr. Fauci came in, Yvette asked when she could resume chemotherapy. Dr. Fauci responded that if the cancer had not responded to the two big-gun drugs, it was unlikely, unless Yvette could get into a clinical trial, that there were any other options. Yvette began to cry and asked Dr. Fauci about another drug she’d suggested early on. It turned out that drug was only 15% effective and had a very serious side effect: sudden cardiac arrest.
Dr. Fauci told Yvette that she should very seriously consider hospice because there just wasn’t anything else that could be done. Yvette cried some more and asked if they would at least see if there were any clinical trials she could get into.
Dr. Fauci’s nurse called later that afternoon and broke the news to Yvette that her health was too poor to be considered for clinical trials. More tears. Yvette finally looked at Dr. Fauci’s notes from the morning visit and she asked me to read them as well. The size and number of tumors was increasing rapidly. What hit Yvette the hardest was Dr. Fauci’s observation that she looked “chronically ill,” but she said she wasn’t giving up.
The following Saturday Yvette was hospitalized again. This hospitalization was for swelling in her leg. The cause was a tumor in the iliac vein on her right leg (very rare; 99% are in the iliac vein on the left leg). It was during this hospitalization that it occurred to me that the sarcoma may have started in Yvette’s right hip (the problem was not joint-related, but instead tissue-related, which the orthopedist would not have been able to see on a standard x-ray). Yvette was started on IV diuretics to reduce the swelling.
On Monday, the hospital’s hospice coordinator came by. She gave her presentation, and although Yvette and I had not talked about it, I told the coordinator that if we were going to use a hospice group, we wanted the group that had taken care of Deb. She said she could arrange for their coordinator to stop by and see us.
Yvette said she wasn’t ready, and I told her that was okay. But she did tell me that she wanted the same hospice as Deb when the time came, and she wanted the same care team. I agreed and told her we’d make that happen. So, when the coordinator for Hospice and Palliative Care of Charlotte came by the next morning, Yvette told her she wasn’t ready to make the decision yet, but if she did, she wanted the same care team as Deb. The coordinator said she would make sure that’s what Yvette got.
On Wednesday, Dr. Fauci called the hospital room. She’d seen the latest scans and she advised Yvette to leave the hospital with hospice. I asked for a ballpark of how long Yvette had. Dr. Fauci said four to six weeks.
Yvette and I both cried. We knew this day was coming, but it didn’t make it any less hard. Yvette asked me to call the hospice coordinator. She came a few hours later and we reiterated exactly who we wanted on Yvette’s care team.
On December 11, 2020, Yvette was discharged from the hospital with the hospice and the care team she wanted. Stephanie, the P.A., and Natalie, the nurse, were just as phenomenal with Yvette as they were with Deb. Yvette and Stephanie had worked together at the same care facility several years before, so the bond between them was already established, and Natalie seemed to care for her patients just like I imagine she cares for her own family.
As December wore on, Yvette began sleeping more and more. Her appetite and her tastes changed. She would be most awake from about 5 pm – 9 pm, so I could usually get some food in her during that time. She stopped drinking coffee (it all tasted bad) and switched to hot tea during that month.
Toward the end of the month, I often had a to wake her for medication in the morning and in the middle of the day. At times, it would take a lot of effort, and when she would first awaken, she’d look very startled, and, it seemed, took her a bit of time to recognize me.
I knew that when the body shuts down, excessive sleep is common. It’s a systemic process that happens naturally and provides an orderly shutdown of the body.
Yvette’s sisters planned to fly in on January 18, 2021. Yvette was so excited that she was going to be able to see Mia and Angelique in person. We arranged for meals that could accommodate their dietary needs so the girls could maximize their time together.
Sunday, January 10, 2021 was very busy. Yvette had sold the camper to two good friends and they came to pick it up. Yvette wanted me to go with them to check for any sentimental things that we’d want to keep when they opened the camper. A neighbor came over. Debbie, one of the church elders who was a rock of support for us, stopped by.
When I got home, everybody left and Yvette said she was tired, but she was hungry and just wanted to eat and watch the last episode of Heartland with me. I fixed what Yvette said she wanted to eat, but she couldn’t eat the meat, just the mac and cheese. I asked if she wanted some mashed potatoes. She ate a decent serving of mashed potatoes.
Yvette ate the next day, but it was in dribs and drabs because she was having such a hard time staying awake. Usually, she would drink at least two protein drinks during the day, but she barely touched one. She did have some mashed potatoes for dinner, but she didn’t want anything else.
On Tuesday morning, I was already up when Yvette’s glucose monitor went off. I got some apple juice and Yvette drank a couple of cups over the next half hour to stabilize her blood sugar. Until Tuesday, I’d been to get Yvette up to use the bedside commode. That morning, though, she could not summon any energy to help me, and, although I got her up, it was very difficult.
When Natalie came for her visit, she saw the problem and suggested to Yvette that we get a hospital bed because it would be easier to get in and out of. Yvette got very upset, because she didn’t want a hospital bed. For her, that would mean admitting defeat and admitting that the end was near.
I texted both Mia and Angelique while we were waiting for the hospital bed to be delivered and I told them that things were changing fast, and they should put their plans to travel on hold. I told them to call me, and I’d put Yvette on the phone (Yvette hadn’t touched her phone since Monday). Both of them called and Yvette, in tears, was able to talk with both of them. They asked me what they could do. I asked them to write Yvette’s obituary.
When the hospital bed arrived late that afternoon, Debbie, Laura, and I got it made and ready for Yvette. Natalie helped Yvette into bed, and Yvette went to sleep and slept until I awakened her on Wednesday morning to take her medication.
We had a simple system for medication. I would take spoonfuls of yogurt, put medications on each spoonful, and then would flip the spoon over in Yvette’s mouth so she could swallow the yogurt and the pills. On Wednesday, though, Yvette was having trouble keeping the pills in her mouth and swallowing. But we managed to get them all down.
Natalie was stopping by, so Yvette wanted to sit up and wait for her. Yvette was agitated because Natalie wasn’t there (this is a common precursor to death: terminal restlessness) and I sat with her trying to comfort her until Natalie got there. I told Natalie about the swallowing issue, and she called Stephanie.
When she got off the phone, she told me we were going to stop all medications except for the pain medications, and she was going to order liquid versions of those and syringes and help me get the doses and schedule set up for when to give them to Yvette.
While we waited for the medications, Natalie and I gave Yvette a bath and got her back into bed. Natalie asked Yvette if it was okay to put a catheter in, so she wouldn’t have to get up and down to use the bathroom. Yvette agreed to that.
The medications arrived and Natalie showed me how to set up the doses and gave me a schedule to give them to Yvette. Once Yvette was back in bed, she fell asleep and didn’t wake up until 2:45 am on Thursday.
I had been sleeping on a mattress on the floor in the den since Yvette’s first hospitalization (she was sleeping in the recliner because it was more comfortable than the bed in the downstairs room that we had converted to a bedroom when it was clear that Deb could not get up the steps anymore.
I jolted awake when Yvette yelled, “Ice water! I need ice water now!” Yvette’s eyes were closed when I got up. But I filled a sippy cup (one of the side effects of methadone is myoclonus, which in Yvette’s case, resulted in an involuntary jerking of her hands) with ice and water and brought it over for Yvette to drink. I put the cup up to Yvette’s lips, but the water just dribbled out of her mouth.
I then got the mouth swabs and dipped them in the ice water and swabbed the inside of Yvette’s mouth. I repeated this every 15 minutes for the next several hours. When Natalie arrived, I told her what was going on, and she made changes to the medication doses and the schedule. Natalie spoke with Yvette (although Yvette was not awake), then left.
Later that day, Kristin, who plays the harp beautifully, FaceTimed with Yvette and played the harp for her (Yvette was still sleeping). Laura gave her a foot message during the harp concert. Laura left shortly after, with explicit instructions for me to call her if I needed anything, and Debbie and I watched Yvette sleep.
By now her oxygen level was permanently at 10 (the highest it could go) and Debbie happened to take her pulse oxygen and Yvette’s heart was racing at 165 beats a minute. I knew we were reaching the home stretch then. Debbie left a little later with the same instructions Laura had given me.
Mia called that evening and I told her what was going on. She wanted to talk with Yvette, so I put her on speaker and held the phone up to Yvette’s ear. Mia talked, but Yvette wasn’t responding at all (but I know she heard her). When I got back on the phone with me, she was crying, and I was crying because we both knew. I told her I’d keep Angelique and her in the loop every step of the way.
About 10:30 that night, I was so tired I could barely keep my eyes open. I decided to lie down on the couch beside the hospital bed so I could be close if Yvette needed anything. Before that, though, I put Alex on the bed beside Yvette, and I told Yvette that I loved her, I was proud of her, and I thanked her for letting me serve her and help with her care.
I got on the couch and closed my eyes. Suddenly, I sat straight up, wide awake. I looked at the time: 12:15 am, Friday, January 15. The first thing I noticed was everything sounded different. The oxygen concentrator was still on, but the room sounded different. I got up, turned on a light, and checked on Yvette.
Her last breath must have awakened me. She didn’t make any sounds, but I think I was so attuned that I instinctively must have heard when she exhaled for the last time. I called hospice and texted Debbie and Laura, who came right away.
The attending hospice nurse was the same one who had attended to Deb’s death. The funeral director whom we had worked with after Deb died – and with whom Yvette and I had both bonded – came himself to help pick Yvette up. I didn’t shed my first tears until he walked in the door at 4:15 am.
Yvette got six months, almost to the day, after her leiomyosarcoma diagnosis. Despite all the pain and all the suffering, she handled every step of it with strength. With grace. With faith.