Sunday, May 24, 2020
I woke up that morning and turned to face her as usual. She was wide awake.
“I didn’t want to wake you up, but I haven’t slept all night. I need you to take me to the hospital. Now . . .”
If you knew my wife, you would know that this was a major deal. She did not take hospital or doctor visits lightly, and to tell me that she needed to go to the hospital, now, was a serious matter.
I don’t remember if I even asked what was going on at that point. It was “Now.” The explanation would follow. I remember telling her only one thing, “You should have woken me.”
She had trouble getting her shoes on that morning. I had to help her. She also had trouble getting her legs into my car. She later admitted to me that she had been trying to hide the fact that she had pain in her lower legs. So, it wasn’t just the delay in diagnosing that was against her. Even knowing the things to do or avoid in her condition, she still hid important details from me.
A pulmonary embolism is a big deal, but it can be treated. We were assured that this one was small enough that it should only require a few days in the hospital, with a prescription for blood thinner, treatment could be finished at home.
A couple of days into her hospitalization, the routine morning blood test caught that she had had a severe drop of red cells overnight. This was remedied by the infusion of two units of blood.
A CT scan later that day showed no major issue that could explain the blood loss. I don’t remember if anyone officially explained this loss to us. My thought now is that it was caused by capillary leak syndrome, which could also explain the cough she had for months.
Capillary leak syndrome is not generally thought to be associated with the type of cancer she had and isn’t generally thought to be associated with the types of chemotherapy she received over the years. But there was one common factor in all of this that I realized could be a suspect in this case. Each one of her chemotherapy rounds ended with a shot of a drug to jumpstart her white blood cell production to boost her immune system which is severely depleted following any chemotherapy.
It was a commercial I saw on television for Neulasta. I recognized the name of the drug being advertised and listened to the possible side effects. This drug was linked to capillary leak syndrome.
Later that night, her pulmonary specialist called me to update her prognosis. He also told me of a conversation with her cancer doctor who had told him that her “numbers” following her first chemotherapy against lymphoma were not good and that he thought there was a chance the lymphoma had gone to her brain, which would require a spinal tap to verify. The bottom line was that they could not continue to treat her for the blood clot and that the odds were against being able to continue lymphoma treatment either, especially now that her embolism could not be treated.
After I hung up from that call, I cried.
I cried and then I screamed. And I cried some more. It was not to be a night for sleep.
Instead, I emailed a good friend who I had been sharing my wife’s updates with, and later, reading her response to this particular update, I cried some more.
In the end it was over very quickly.
She did make it home again, at least long enough to see our cat one last time and for me to clean up her hair which had become matted during her hospital stay. I remember that her hair was the thing she was most worried about regarding her chemo treatments. She wasn’t concerned about the chemo. She didn’t want to lose her hair.
She fell that first morning back home and ended up in the hospital again. I tried to lessen the impact of her fall but was not successful. After a few days at the acute care hospital, she was transferred to a rehab hospital. The plan now was to get her strong enough that she could maneuverer around the house with minimal risk to herself. And just maybe her cancer doctor had a plan to check into possible lymphoma in her brain.
She worked at doing her rehab for a while and seemed to be in better spirits. But the pulmonary embolism was impacting her blood oxygen levels and making her heart race to unsustainable levels. On top of that, the lymph nodes in her neck were getting larger.
And the amount of time she was lucid was diminishing daily.
In those times she was lucid enough to recognize me and talk briefly, she told me she was sorry I had to do so much now, and that she couldn’t help me anymore. I held her hand and tried to smile as I told her not to worry, that I would be OK. I saw recognition in her eyes that she understood what I was saying. I hoped that I would have more time to get into this, but she was already dropping back into that less aware state. Maybe later . . . Later came around 2 am the next morning.
She was gone.