TIRED AS FUCK
Tired as fuck
I want to stop so much I almost don't want to stop
See now then
Can't and won't
Will and can (The Tragically Hip,
2016)
Yup I swear. More than I ever used to. I
am watching Downie's goodbye tour and feeling very emotional. I can see the
effect of cancer and meds in his face, his voice, the way he moves. It's
heartbreaking. I have loved them since I listened to Highway Girl in the early
1990's.
Why tired as fuck? Well as you can tell
from my social media posts I've been a little down. I most recently waited
hours for a bag of saline to rehydrate me in emergency. To be fair - that doesn't happen very often;
maybe every month or two. I wake up to
take my daily anti-nauseant and it doesn't work. I thrash around in bed for an
hour, try the next, and so on until many hours have passed. By then I'm dehydrated
and deathly nauseous. Often I stay home and tough it out. Other times, Superman
sends my ass packing to emergency. I accessed my port (it's a direct to vein
device implanted in my chest) by 3 pm 'cause I knew. Then during the middle of the night I
panicked as I had an 11/10 headache and I was SURE I had a honking brain
tumour. Nope - shoulda stayed for bag of saline #2. Just dehydrated. It's not
like this all of the time; maybe 10-15%.
I'd say 30% of the time I'm the Patricia
the inspiring cancer chick. I'm going for coffee, paddling, running (shuffling)
my half marathons, volunteering with concussions, studying my masters, riding
horses, seeking out the scariest rides at Cultus, camping, dancing, parasailing
with Dutch relatives, Pokémon Go-ing with cousins and so on. I have happy
thoughts. I feel grateful to be alive. I try to, as a dear friend says,
"Suck the marrow out of life (In-Between Days, Teva Harrison, 2016)."
I enjoy parenting, can be a decent (up for debate) wife and friend and I feel
good.
Another 30% of the time I am 'bed-seeking.'
Most days this starts around 3 pm. Sometimes I nap; often it's social media or
schoolwork time. It MUST be horizontal.
I crawl out of bed to make dinner then right back to bed. Hence, tired as
fuck....... On occasion I use my medications to stay up and active longer. I go
out in the evening maybe 4 times a year. But if I do too much, I pay a price. I'm back at emergency.
I could make you scared, if you
want me to
I'm not prepared, but if I have to
He said, I can make you scared, it's kind of what I do
If you're prepared, here's what I propose to do (The
Tragically Hip,1994)
Anywhere from 10-30% of the time I am miserable,
sick and/or cynical. I am debating why the hell I keep going to chemo, fighting
with my teen, complaining, whining, and so on. For a few months this was 100%
of my life but that story is for another day.
I live with constant nausea, I get neuropathic
foot, hand and hip pain; my sex parts are numb; I lose toenails and can't peel
a sticker off an apple because of my shitty fingernails; I get a 'monoclonal
antibody' rash all over my face and pustules all over my body. You didn't want
to hear all that did you? THIS is the dark underbelly of metastatic breast
cancer (MBC) folks - and 40% of us have it. Don't let the 'pink army' fool you.
This is what I've been thinking about a
lot lately. Living with a terminal
illness is NOT EASY. People all around me want to believe that I'm beating the
odds. I will "fight and win." (BTW don't EVER say I lost a battle or
fight when I die.) But really.....only about 2% of us get out of this
metastatic breast cancer thing alive. By 3 years, 50% of us are dead; by 5
years, 80%; and so on. I'm either just
past 3 years or 5 years (depending on what showed in that liver scan May 2011 -
were they tumours or not?) So I have reason to fear. I am always one lab test
away from hearing it's back. I am one trip to emerg away from a CT revealing
brain tumours. I am closer to my current chemo regime no longer working and
I'll need the next. Meaning closer to no options left. I am dealing with a
number of friends in this situation and it breaks my heart.
I hope they find a cure. Sadly only 15%
of breast cancer charity money goes to MBC in Canada - less in the US and none
in some countries. I hope to be the outlier. HER-2 is the luckiest draw of MBC.
But stats don't lie folks. And I DO NOT believe in the law of attraction so
don't tell me my thoughts will bring cancer back OR save me. No-one has that
much control over their life. (Please refer to my super-fantastic counsellor
Nancy on that one. I don't want to debate it. The universe can kiss my ass. I
did not ask for this.)
Seventy percent think that metastatic
breast cancer can be cured if caught early. Nope - it's incurable. Fifty
percent think that people who's cancer returned because they "did cancer
wrong." There's a lot of blame and shame out there. If you read some of my
recent social media links you'll see.
I've spent A LOT of time researching the
complementary and alt world in these 5 years. And there is no truly convincing
evidence to my very science-ingrained mind that there is a magic cure in the
mind, spirit or diet. I have lost as many friends with a 'truly perfect
lifestyle' as those who made no changes.
Metastatic breast cancer does not choose one over the other. I had a group of mother friends who swore that
'death was no option' and truly believed it. They died. And with that died my belief that a strong
will to live was what one needed. I had
a friend who went to a clinic and came back smiling right into
her grave believing that the 'path she had chosen' would cure her. She left
very young child motherless. Sad because she was diagnosed early, had few mets
and likely a good 5-10 years or more ahead of her. She died in 3 months, forgoing traditional treatment.
OK enough of the doom and gloom.
Hopefully having written it all out will help me pass this mental block and
expose the reality of my life.
I have an amazing support system of
loving family and friends. I have the best treatment team in the world,
including my friends at emergency, and Dr. Tequila - most hopeful oncologist alive. I
have a brilliant young man with good work ethic and a very smart young woman
with a heart of gold. And lets not forget Superman. Without whom I would not be
here - he does so much for me I can't even begin. And despite that nasty 30%, I
AM CANADIAN (yeah I see what I did) and am all about #fuckyeahdoallthethings,
enjoying many moments as I know I'm living on potentially borrowed time.
Now off to shed a few tears for Gord my
muse.......FUCK CANCER !!!!!
Okay, you made me scared, you did what you set out to
do
And I'm not prepared, you really had me going there
for a minute or two
He said, you made me scared too, I wasn't sure I was
getting through
I got to go, it's been a pleasure doing business with
you (The Tragically Hip, 1994)
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