My habit each evening when I got home from the
hospital was to have a hot bath. My left arm had to hang out of the tub to keep
the PICC line dry but every day I looked forward to the routine. It allowed me
to scrub off the smell and feel of the hospital. I filled up the tub, soaked my
body, dipped my head under the water and washed my hair and scalp. Recovering
from the high dose cyclophosphamide back in May, my head was now lightly
covered with tiny strands of hair, like a baby’s scalp, with more hair in some
places than others. When it was wet it reminded me of bathing the girls as
infants. Their blonde hair would become invisible against their wet heads. The
memory made me smile. I felt so relaxed and happy in the hot soapy water, a
million miles from IVs and blood tests, that I had an epiphany. I suddenly
wanted to volunteer. I saw myself driving old people to doctor’s appointments,
volunteering at a hospice, helping the sick wherever and whenever I could. Then
a reality check about wanting to do good things, but wanting to make a bit of
money came crashing through. I wanted a selfless, satisfying, charitable job
that paid.
Thursday I
checked in but didn’t check out of the hospital. I was having diarrhea again
and my blood pressure was high at 158 over 102. My creatinine had lowered to
139, but was still more than twice my normal output. My mouth was starting to
get inflamed. A red area around my PICC
line had to be watched for infection. My neutrophil count (the white blood
cells that defend the body against infection) was almost zero. On top of this there had been an
“outbreak” in the hospital. The nurse wouldn’t tell me what sort of outbreak it
was. But we were banned from using the communal kitchen and the cleaning staff
would be working overtime to scrub every surface and throw out thousands of
dollars’ worth of medical supplies that might be tainted. With no neutrophils,
the word “outbreak” had me cowering in my room. I was given a GCSF injection,
the same drug Alex had delivered to me to boost my stem cell count, to
encourage my neutrophil count up. It was
time for me to stay in the hospital 24/7 hiding from germs.
The
prospect of the next five days with no immunity was pretty scary. Alex got
obsessive about using alcohol solution. He used the pump inside my room, in the
unit, in the ward, and in the main hospital. Everywhere he saw a bottle he
squeezed it on his hands. We were really nervous. I read a story in the New
Zealand Herald about listeria at Hawkes Bay hospital. Two immune-compromised
older people died after eating tainted salami. They had probably used alcohol
wipes and everything. You never knew where the bugs were hiding. But to go
through chemotherapy and a stem cell transplant then lose your life over bad
salami was pretty cruel. What a way to go.
Fever set
in on Friday. The highest it registered was 38.4 but it kept above 38 for the
next few days. By Monday I was still feverish. My white blood count was under
.10 (normal was 4.00-11.00). My hemoglobin was 93 (normal was 115-155). My platelet count was under 10 (normal was
150-400). I had zero neutrophils (normal was 1.9-7.5). I was in bed a lot of
the time, and spent my nights in feverish sweats. I hardly ate, slept a lot
during the day and felt lousy. My anti-nausea medication and anti-diarrhea
medication both did their jobs commendably however and both issues resolved
themselves quickly. By the following Thursday my white blood cell count had
risen to 1.97 and neutrophils to 1.37. I had bounced back enough that I was
released to go home that night.
The next
day, Friday July 27th, after a PICC dressing change and a blood
transfusion to combat my low hemoglobin, I was officially discharged at 2.30pm.
I had been in the hospital just two weeks. The staff wanted me out of the room
because the next patient was waiting for it. I packed up and walked down to the
hospital lobby. Alex was in Hamilton. He said he would leave immediately but it
was still a two-hour drive to Auckland. I sat on a sofa in front of a TV, with
a knitted hat on, hiding my now almost completely bald head, thanks to the
high-dose melphalan. My few possessions in plastic bags were next to me. I
started dozing off so I went to Muffin Break to get a coffee and decided to get
a spinach and feta quiche that caught my eye in the warming cabinet. Halfway
through eating it I suddenly remembered what I had read in the low-immunity
food guide. I wasn’t supposed to have food from warming cabinets or soft
cheeses. In fact the delicious little quiche probably ticked all the boxes for
everything I wasn’t supposed to eat. I hadn’t even left the hospital and I had
gone wrong already. I thought about the salami ladies and imagined the opening
sentences pertaining to my death:
Ten minutes
after being discharged from a $200,000 stem cell transplant, a patient died in
the foyer from complications after eating a $5 quiche.
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