In our thirties my sister Holly, my younger brother Ben and I found a new closeness. In our forties, we continued a “holiday” like relationship. That meant we only saw each other every few years, due to the fact I lived in New Zealand and they were in America. When I was diagnosed I didn’t want to tell anyone, not even my siblings. But on January 19th my hand was forced. The nurse needed their names and contact numbers. They had to be tissue-typed to see if they were a match for me in preparation for a possible allogeneic stem cell transplant. This was all happening faster than I expected. I had purposely delayed telling my family anything about my disease until the course of it was more definite. But now, not only did I have to tell them, they were about to become an integral part of the process. I didn’t want to ring. There would be too many questions and I could only talk to one person at a time. I drafted a two-page email while sitting in a hotel room in Wellington. I read it a hundred times before I sent it to my sister. I asked her to read it ASAP, then to read it to my mother.
I have some bad
news about my health. I have been diagnosed with “plasma cell leukaemia” which
is a type of blood cancer. The good news is that I am being treated, and as of
today, Jan 19th, the outlook is pretty positive. Let me fill you in
on the details:
When I got home
from America on Dec 10th, I was feeling fairly run-down. I was short of breath
and feeling generally unwell. I initially thought maybe my heart was the
problem. I had a blood test on Wednesday after I got back to New Zealand
(December 14th) and the next day my doctor’s office told me to come straight
in. So I knew something serious was up. The results of the blood test showed
the leukaemia. My bone marrow was making an abundance of plasma cells which
were crowding out the normal red blood cells. These plasma cells were leaking
into my blood stream and potentially were on their way to damage my organs.
Also because they were taking over my bone marrow I was susceptible to my bones
degrading and possibly fracturing or that the cancer was eating into the bone
itself. All incredibly horrible news and very upsetting as you can imagine. I
was also very anaemic.
The next day,
Friday Dec 16th, I was admitted to the haematology ward at the
hospital not far from where we live. I was transfused three pints of blood and
given a bone marrow biopsy. I was started immediately on steroids and
antibiotics. I saw the doctor again the
following Thursday, Dec 22nd. He was pleased to see the number of
plasma cells in my blood had dropped considerably and my red blood cell count
had risen. This was even before I started on the chemotherapy drugs. I was told
to get a weekly blood test so they could check on levels and I was told I would
meet again with the doctor in one month’s time, on Monday January 16th
to check my progression.
So for four weeks
I had a weekly blood test, a dose of chemotherapy once a week (pill form), a
shot of a drug called velcade subcutaneously once a week at the haematology day
stay, steroids twice a week and a group of other drugs which are antibiotic in
nature. As the chemo kills the cancer cells they are keeping a close watch on
my white blood count for anaemia. I also had an MRI to check for lesions on the
bones.
I did not know
what the prognosis would be during the four weeks on this drug therapy and so
did not want to inform you too soon until I better understood my position. The
good news is there are no longer plasma cells in my bloodstream and my blood
pressure; weight and temperature have been consistently good over the four
weeks. The MRI showed my bones are fine. The calcium level is good and my
organs are operating as normal. The meeting on Jan 16th was positive
but I have a long battle ahead of me.
I will be on the
combination of drugs for another 12 weeks and then I will be in the hospital
for about three weeks for a “stem cell transplant”. I have not been given a
definite hospital appointment yet. The idea is to harvest stem cells from the
patient or donor, then kill off the patient’s own bone marrow and plant the
fresh stem cells in its place. These stems cells are baby cells that will then
become healthy red, white and plasma cells. The risky part is when they kill
off my bone marrow. I will have hardly any ability to fight infection.
Because my stem
cells may still carry the disease, instead of harvesting my own stem cells, the
better option is to be matched to a sibling. This is called “allogeneic stem
cell transplant” if you want to google it. There is a 50% chance of a match
with a sibling.
The haematology
nurse has asked me if I could provide your names and contact details. I asked
if Abby and Charlotte could be donors but they said, because we share parents,
you guys would be the best match.
So, I know it’s a
big favour but I hope you will all be willing to be “tissue typed”. The
hospital here will coordinate everything. They will contact you and tell you
what to do.
I know this is
all a shock, believe me it was a huge shock to my system. I went from taking no
medication to a bag-full, but I am more positive with a plan of action ahead of
me and although they say it could take a year of recovery, I am more than
grateful that there is a treatment for my condition. I love you all and I hope Mom was sitting down while
you were reading this.
Before I went to sleep I thought about my sister
reading my email and imagined how she would react. It kept me awake for hours
even though I had taken a sleeping pill.
Goodbye Keanu at
www.amazon.com/goodbye+keanu
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