This type of cancer affects your blood, your bone marrow and then… everything else. Know what sucks even more? The chemotherapy treatment for leukemia. It is so long, so complex that the medical team taking care of Katy wouldn’t even give her the whole plan at once – they had to wait to see if she responded.The first 4-week phase actually lasted for five weeks.
She received two types of IV chemo: an oral chemo, and a spinal chemo. To check the progress of the treatments, she underwent regular bone marrow biopsies and ended up in intensive care more than once.
During the first treatment, Katy asked for palliative care to begin as she wanted to stop all treatment. She’d never really wanted treatment – she had seen her grandpa die of lung cancer and didn’t want to be sick like he had been.
The doctors pulled out all the stops to convince her to continue – brought a therapy dog up to her intensive care bed and let it get up on the bed with her. She got involved in art therapy, music therapy, and had a psychiatrist, psychologist and a pain management team.
She continued with the treatment.
During the first few weeks that she was in the hospital, I developed cellulitis in my ankles that was spreading up my legs and I popped into the ER twice to get treated. During my second bout, the doctors wanted to admit me for IV antibiotics. I needed to be with Katy and declined. Instead, I just put my feet up whenever we were hanging out in her room.
Too weak to walk any real distance, she was pushed in a wheelchair while we roamed the halls, often popping outside to have a smoke. Katy, of course, made two great friends in the smoking area – a transsexual who had heart problems and a pregnant woman, just like she’d made friends on her leukemia floor.
The ICU nurse became a friend of the family and after a particularly nasty side effects of chemotherapy – the lining of her colon separated and shed, leaving her to poop blood for a week. Katy was then put onto a liquid diet, and being my food loving child, our old neighbor made her “stringy roast” which Katy happily ate.
Oh boy, her doctor was pissed.
Katy hated that doctor and refused to speak to her, so he and I had conferences in the hallway. Thankfully this doctor was only rotating through the leukemia ward and she wasn’t stuck with him.
When Katy was discharged the first time into her husband’s care, this doctor ordered the removal of the PICC line without discussing it with us which turned out to be a major pain..
When we returned for her first outpatient treatment, they, of course, didn’t get a vein and she had to be readmitted to the hospital. The PICC line became permanent to help treat the leukemia.
The staff at The Clinic was great! Originally, one of the nurses who had a strong personality (and Katy didn’t like) started her chemo treatment but they began to open up and bonded.
The medical assistants were also good friends of Katy’s, and once, her favorite aide (who wore a wig like Katy did), so the medical assistant put on one of the wigs while Katy put on the other. They giggled and took pictures that night.
The same aide on another night made a video of the clocks turning back and Katy wanted to see it. She asked to see the video, but he misunderstood (haha!), so we had to spell out c.l.o.c.k video.
Because nothing comes easy, my husband was diagnosed with throat cancer, living in an AirBnB near The Clinic so that he was able to complete his seven week outpatient radiation treatment. He had been taking care of Rae while we were in the hospital.
While he was away getting his treatment, Katy came home and we decided that we could take care of Rae ourselves. With the neighbors help, we could go to Katy’s long treatment appointments without worry.
My stepkids saw my devotion to Katy and her treatment and felt that I should be there for their father, my husband. I felt that he wasn’t nearly as sick as she and could spend time alone while Katy couldn’t. We’ve only recently mended bridges.
More and more, Katy caught infection after infection and had to spend more time in the hospital. Her beloved PICC line was replaced she got a port placed instead. Unfortunately that too became infected and it had to be removed.
Pain was a major issue for her and while she was in the hospital, she had a morphine pump and a fentanyl patch. I was the one doling out her meds and occasionally she overdosed, necessitating Narcan.
She was in the hospital during Thanksgiving weekend and my brothers (her uncles) came to visit, which she loved. I’d given her a pain pill before they got there and was nodding off. The Sunday after Thanksgiving, my husband brought Rae – who was now ten! – to see her as well.
After that visit, the nurses administered Narcan again after questioning me – and lecturing me – about giving her extra pain medications. They were very nice about it but I felt awful.
Katy then developed a serious fungal infection and was moved from the leukemia unit to intensive care.
One of her ICU nurses made friends with her and visited when she could. That night, when her favorite nurse came by to visit, she told Katy, “see you tomorrow!” to which Katy replied, “you’d better!”
Those were the last words she ever spoke.
Her brother came up for a visit and while he was there the medical staff had to remove her port. Hospice stopped by as they were putting in another line which was very painful, but I’d told hospice that I’d given the go-ahead so that she could get some pain medication.
We spoke to hospice and the hospice staff said it would be hours to days before she passed.
We asked that she could move to a room down in the leukemia unit, where the staff began to say goodbye. We saw them often as they came in to administer medication to make her feel more comfortable.
A sign was put on the door to see the nurse before entering the room; I always wondered what those signs were for. My son and I slept in the room, talking to her and holding her hand before we went to sleep.
When I got up in the morning, I said, “Good morning, Katy” and went down for coffee and a smoke When I returned. I could tell she was gone.
She was so very still.
And like that, she was gone.
I was so glad that our relationship was good during the months that she was sick, but I am devastated that she had had such a rough life and such a tough struggle with addiction.
I felt everything. All of it.
Later, I had to go home and tell Rae that her Mommy died.
That was the worst thing ever.
My grieving is a whole other story