Alex, Abby and I went to an information session about the
transplant on June 14th. The nurse specialist listed the worst case scenarios
of what could happen during and after the transplant. Five days after being
dosed through an IV with the chemotherapy drug melphalan, the fun would really
start. Highlights included nausea, diarrhoea and more hair loss. My
reproductive organs would be sterilised and the lining of my stomach and
intestinal tract would be damaged. There was a good chance of mucositis, a
condition that made your mouth fill with sores that could get so bad you
couldn’t swallow, requiring a feeding tube. But if you did manage to eat, you
were allowed to bring whatever you wanted from home. I was wondering if there
was a bigger Cadburys bar then the family size.
The hospital days
were given minus or plus numbers, with transplant day being day zero. It began
for me with day minus three, when I would get blood taken. Day minus two, I
would get a PICC (peripherally inserted central catheter). The PICC line would
go into a vein in my arm and be pushed up to my heart. This would give easy
access for administering drugs into my body and for taking blood samples
out. On day minus two I would get a
chest x-ray, ECG, and a pentamidine nebuliser. The pentamidine was inhaled in
steam through a plastic mask. It was taken mainly to protect the patient from
pneumocystis pneumonia. (Thank you Wikipedia). Day minus one I would get
another high dose chemo through an IV. This time instead of cyclophosphamide,
it would be melphalan. The next day, “Day Zero” I would be given my own stem
cells back.
The nurse asked
if I had any questions. There was so much information I didn’t know what to
ask, so I shook my head dumbly. A thick green folder on her desk had my name on
it. When she left the room I picked it up and flicked through it. It was all
test results and history except for a letter written by a haematology doctor
whose name I did not recognise. He was obviously asked to consult on my case.
He agreed with giving me an autologous transplant while I was doing well.
“But typically in
plasma cell leukemia there is a quick crossover.” (Which I assumed meant that it
came back quickly). “The outcome is usually poor in these patients”.
It was like I
could see the doctor physically shrug his shoulders as he wrote it, thinking to
himself:
“There’s not a
lot we can do for this woman, statistically she is going to die, and soon.”
It was horrifying that a stranger had written down my fate
in black and white like that. It was like I could feel the pen strokes on my
skin.
The pharmacist
came to see me next. I quickly put the folder back on the desk and pretended I
hadn’t snooped. She was a chirpy British girl with a nervous laugh. She went
into more detail about the melphalan. Along with the other side effects there
could also be allergic reactions, including fever and chills.
“And we are
really good at getting rid of hair.” She laughed and twitched when she spoke. I
knew she was trying to lighten the atmosphere, but I wasn’t in a laughing mood.
The nutritionist came in next and I was barely listening. Something about low
immunity and watching what I ate. She gave me a leaflet anyway so I wasn’t
worried. I was thinking about the green folder and the letter it contained. But
when the social worker came to see me, (I was informed the psychiatrist had
quit and hadn’t been replaced) I smiled obligingly.
“How are you
coping?” She asked. Her notebook was open, and she was ready to write down my
answers. I knew I had to make it good.
“Fine.” (lie)
“How is the
stress?”
“Fine”. (lie)
“Do you have
support?”
“Yes.” (truth)
It was like being on a job interview. I told her what she
wanted to hear. She asked about ten more questions about how I felt about the
transplant and my disease. I guess I answered her questions satisfactorily
because I got the gig – the transplant was full steam ahead.
I just wish I had
not read that letter. In spite of my stunning performance for the social
worker, I left in a cloud of anguish. I could not stop thinking that my cancer
would come back and none of the procedures would make any difference.
It gave me a
complete change of heart on my earlier hypothesis that dying slowly was better
because you got to say goodbye and eat a lot of chocolate. Dying slowly meant
daily emotional torment. It was like Groundhog Day. Every day I woke up and was
given the same fate only in my world there was nothing I could do to change it.
If I got hit by a bus I wouldn’t have time to agonise over the end of my life,
or that I would never meet my grandchildren or that I wouldn’t have another
Christmas. When you are given a slow-death sentence you think about stuff like
that all the time. I mean ALL THE TIME.
But then I found
a report with good news. In one study fifty-per cent of the plasma cell
leukaemia patients were alive after a year. Twenty per cent were alive after
four years. Why couldn’t I be in that percentage? I was heartened to read that
not everybody dies, at least not really quickly. That was an enormous boost. I
was back on the rollercoaster. My outlook completely turned around once more
and I embraced life again.
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