Hi there, long time no see. Sorry it's been a long break. No excuses, I am just slack!
Three weeks ago I had
an MRI because I have had six infusions of Tysabri. Six infusions already - crazy town!! Time goes so fast. I have no problems with MRIs. I’ve lost count of how many MRIs I’ve had –
all I know is I have a pile of films that I have no idea what to do with. Maybe one day I can have my own MRI brain and
spinal cord art exhibition! My kids could
illustrate them. Hmmm maybe I’ll wait
until they are older, so they will know what they are actually drawing on and will
have developed more of a sense of humour.
Anyways, I’m not sure if I am allowed to ditch them, I’ll have to ask my
neuro in six months, but until then they’ll continue to keep the dust bunnies
company under my bed.
As I mentioned I’m not concerned about MRIs. In fact I informed the tech that I was going
to get a half hour nap in while the MRI machine was doing its thing… He had the
last laugh informing me the scan would take fifteen minutes with a break to
inject the gadolinium contrast. I would
have to be good to get that short a nap in, which I am not. So instead I relaxed and pondered what my results
might hold.
Six months earlier, when prescribing me Tysabri, my
neurologist was adamant there would be no new disease activity; no new lesions,
no new symptoms and definitely NO going downhill. My previous MRI (when I was still the drug
formerly known as “Mr C” or for those new readers, Copaxone) had shown new
inflammation and activity – 5 new lesions, the most I had ever had in a six
month period. This indicated that even
though I was injecting my wonderful (not!) meds daily, my MS was active and more so than ever. So even though Tysabri was touted as a
wonder drug for halting MS in its tracks, I couldn’t get my hopes up. What if it just didn’t work for me?
In the meantime, I had another infusion of Tysabri. I have to tell you there are absolutely worse
things than sitting about for three hours watching a movie, texting friends or
reading a book.
Although at my last infusion I did meet an amazing woman. Her name is Abby and she was infusing in the bed next to mine. She has stomach cancer. Her medication options have come to an end as
nothing was working anymore and she told me about all the alternative options
she had tried. I felt incredibly sad and
helpless for her; her children are the same age as mine and she had been given
just three short weeks. My kids were
with me too, for some of the time, being all boisterous and cute (or annoying
depending on who you are), so I felt pretty uncomfortable. I didn’t know what to say. She was having a bad day – a bit teary and
down. Hell, if I was given three weeks I
would be crying all day, every day. She
asked me how I was coping coming into hospital once a month, asked about how
inconvenient it was, whether my medication was painful and how it was knowing
that I may not have a normal life span.
This brave and incredible woman has three weeks to live and she is
asking me these questions… It was humbling, humbling, humbling. I asked her the same questions, after
deciding it was more respectful to ask her outright what I wanted to know about
her condition.
I told her that my greatest fear is my children developing
MS.
At the end of my infusion all I could do was hug Abby. I couldn’t make her cancer disappear, not
even a little bit. I told her would see
her in four weeks’ time. She didn’t
look like she was just three weeks away from dying, so in my mind it is really
hard to believe she won’t be there in four weeks. She was hopeful, saying she’d outlived one
time limit already. I am so dismayed
about her situation and how ungrateful I have been with my own life that words
can’t describe how much I want her to be at the centre in four weeks.
A week later I went into my local SKG to ask for my MRI
report. Although my family were in the
car I tucked the envelope into my bag and tried to forget about how heavy it
was on my shoulder. What if the Tysabri
wasn’t working, what if I had to change my medication again, what if… so many
what if’s.
At home I put the envelope on the bench and tried to ignore
it. But it eventually its calling wore
me down. I am a need to know person. I
don’t do well with doubt and not knowing where my health is concerned,
especially when my uncertainty can be quelled with a report sitting on my
bench. So I sat down and opened the
envelope.
Ha… and that’s it for now. Got to pick up my little darling from day
care. Check back in a few days and I’ll
tell you more about what happened!!
