I
did some stuff today: cleaned the crisper drawer and underneath, made
some spiders very unwelcome by washing windows, made tuna sandwiches
and cups of tea for several people.
It's remarkable because it was for
someone else.
Now I’m home, nobody saw me
do all that, and you my online people are the only ones I have to tell
about it.
Yesterday I painted this, not finished but feels right.
Venetia Butler
Wednesday, 17 October 2018
The Last Bloody Day
Today
was my last visit to the liver clinic. After nineteen years in the
system, finally eight weeks of sobriety plus medication, I am cured.
When I was first diagnosed in 2001, I was at work where we sat in open rows and all used one outside phone. When my doctor called to say the hepatitis C diagnosis everyone could hear my shock.
The liver specialist, Dr Fienman’s office was filled with pamphlets and swag from different pharmaceutical companies. Three times over the years he insisted I receive lengthy, invasive interferon treatment. Friends who had Hepatitis C were ashamed, confessing to each other guilty sexual choices and drug dependence. We speculated about invisible scarring and how it was to spend fourteen months with flu like symptoms because of chemo treatment. As a single parent with a little child, I wouldn’t be able to handle such side effects. I declined. Then an innovation: pegalated interferon, a timed release version, with reduced side effects, only seven or eight months with slightly mitigated flulike symptoms. I declined again. Meanwhile I put my life at risk sporadicly binge drinking and social smoking.
Eventually I changed medical centres and the specialist retired.
Years later after a particularly acute medical crisis, not related to the liver, my health team suggested I go back to the liver clinic.
My new liver doctor warned me to lay off the booze. He lifted his red cardboard cup of coffee and said, ‘the good news is you can drink plenty of this!’
In August 2015, an article in the Globe and Mail told about a new medical invention with sensational statistics. My new specialist rubbed his hands together, thrilled with the unbelievable outcomes reported and with no side effects.
He put in the order.
When thirty days of hermoni was delivered by special courier, a single dose was the most expensive thing in the whole house! I’ve been cured since February 2016.
Today Dr. Juan’s waiting room was almost empty, his HepC business is slowing as more practionars learn the ropes.
He looked at my blood work, asked a couple of questions, then drew a line across the chart page, leaned back and said, ‘it’s like breaking up isn’t it?’
One effect of being cured, my fear of contaminating people or my family with my blood has subsided. It feels like I’m growing down: I feel younger and strong.
When I was first diagnosed in 2001, I was at work where we sat in open rows and all used one outside phone. When my doctor called to say the hepatitis C diagnosis everyone could hear my shock.
The liver specialist, Dr Fienman’s office was filled with pamphlets and swag from different pharmaceutical companies. Three times over the years he insisted I receive lengthy, invasive interferon treatment. Friends who had Hepatitis C were ashamed, confessing to each other guilty sexual choices and drug dependence. We speculated about invisible scarring and how it was to spend fourteen months with flu like symptoms because of chemo treatment. As a single parent with a little child, I wouldn’t be able to handle such side effects. I declined. Then an innovation: pegalated interferon, a timed release version, with reduced side effects, only seven or eight months with slightly mitigated flulike symptoms. I declined again. Meanwhile I put my life at risk sporadicly binge drinking and social smoking.
Eventually I changed medical centres and the specialist retired.
Years later after a particularly acute medical crisis, not related to the liver, my health team suggested I go back to the liver clinic.
My new liver doctor warned me to lay off the booze. He lifted his red cardboard cup of coffee and said, ‘the good news is you can drink plenty of this!’
In August 2015, an article in the Globe and Mail told about a new medical invention with sensational statistics. My new specialist rubbed his hands together, thrilled with the unbelievable outcomes reported and with no side effects.
He put in the order.
When thirty days of hermoni was delivered by special courier, a single dose was the most expensive thing in the whole house! I’ve been cured since February 2016.
Today Dr. Juan’s waiting room was almost empty, his HepC business is slowing as more practionars learn the ropes.
He looked at my blood work, asked a couple of questions, then drew a line across the chart page, leaned back and said, ‘it’s like breaking up isn’t it?’
One effect of being cured, my fear of contaminating people or my family with my blood has subsided. It feels like I’m growing down: I feel younger and strong.
Thursday, 24 August 2017
A Cancer Diagnosis?
Hiya, I see on the Internet you’ve had
some wild news. What did they diagnose? What are your timelines? About
the diagnosis: I have a friend, a former Special Forces officer,
sometimes stationed in Baghdad’s Green Zone, who says: “Hold on partner!
We are going to eat this cow one bite at a time.” It’s true: After the
first diagnosis, things happen in much more manageable packets.
I had cancer in the old days, 1978,
Hodgkin’s disease, three stages of four. It took four months to fully
diagnose how far it had progressed, including a suggestion to shunt
uterus and Fallopian tubes aside during radiation, and then move them
back again, like books on a shelf. I got a second opinion on that and
didn’t do it, but mostly I went along with whatever was happening.
I had three courses of radiation: six weeks each, five days a week (a ton by today’s standards).
My
skin turned purple and flaked off in large, hexagonal,
aubergine-coloured peels. The hair on the back of my head fell out but I
couldn’t see it and it didn’t hurt, so that wasn’t so bad. I got 18
tiny tattoos in public and private places. I was nauseous and I puked
from time to time, but in a humorous way, I like to think: My sister
asked how I liked the supper she’d cooked and we had just eaten; I went
to the bathroom and hurled.
The little
cookies put out by the Ladies Auxiliary (do they still have those?) were
a treat. I still love those flower-shaped Peek Freans with jam in the
centre.
All this to say that you are
not alone, a cancer diagnosis is a horrible thing; it is a test and can
be a hard one. You will get through this, you are strong, you have some
insurance, you have world-class care and you have me, way over here,
rooting for you.
My thoughts on how to equip yourself for the coming months?
Get
a binder and a hole-punch for all the different papers, pamphlets and
instructions. I also keep medical bracelets in a Ziploc bag so I can
wonder at how many times I’ve been to the hospital. They are like badges
of honour.
Put a big calendar on the
fridge so everyone can see your appointments. This may seem public, but
if someone reads about an appointment it could be an entry point for
discussion. Some folks have a difficult time talking about scary stuff,
and your visitor or family may not say anything at all for fear of
saying something wrong.
I like audio
books: Harry Potter, David Sedaris, Nora Ephron or high seas with
Hornblower. Having an alternative universe at your fingertips is a
modern luxury.
Plan yourself some
breaks: Have someone make a couple of nice casseroles to have in the
freezer, order in. Hire someone to do the cleaning; you don’t need the
anxiety of chores. Anyway, you’ll still have to look after the cats.
This
is the time to really get into your hobby; I sporadically knit, it’s
cumulative and I can carry it anywhere. Cotton washcloths are about my
level.
Jeez, this all sounds so preachy. If I could, I’d just come for a coffee and we’d hash it all out.
Be early for your appointments and pair them up with something nice, such as a coffee or a scenic drive.
Find a cheap place to park near the hospital.
Eat your veggies and drink water. Get your hair done. Go to a spa from time to time.
Try
to have a simple date with your sweetheart once a week, a meal and a
movie at home even, so you have something to talk about that isn’t about
illness or cats.
Most days, I wrote a
little, just for me, just to get it out. Then if worries crept up at
night, I could say to myself, “That is in the book, there is no good
reason to be ruminating about it at night when I can’t do anything
anyway. So out you go, thought.” Then I would try to find something
calmer to occupy my mind. I have a mantra: “I will wake up relaxed and
refreshed” and it’s weird how well this works for getting back to sleep.
I
hardly know you and this note has way too many adamant points; you
don’t have to use any of them. Everyone finds his or her own way. You
will, too. Trust your gut instinct and if something doesn’t suit you, if
an appointment is too early or there are too many in a day or week,
just ask for another. Get a second opinion.
Make sure all you doctors are on the same page; this one point is remarkably important.
As
grim as it might seem, it actually feels good to get your affairs in
order. Your will probably won’t be used this year, but having it in
place can give you peace of mind for the rest of your life.
My thoughts are with you. Drop me a line or just call any time.
Less Obvious Scars
My lesser scars include: two 1-inch pale slits, one on the top
of each foot where, up in those stirrups, die was injected for
half a day. My pee turned blue. I considered having a pregnancy test; who but
an urologist and me would appreciate the colour.
I have two bumps on my pelvis in the dimples at the back where
they jammed a narrow cylinder into my bone for a core sample, another
diagnostic test. I use almost the same tool to make holes in clay pots, which
is way more relaxing.
I have one pale puncture mark on my neck from a needle
aspiration biopsy of my miss-functioning thyroid. The scratching slide of the device
inside my neck is still easy to recall. Near it is another puncture from the
drain after having my thyroid removed.
I have twelve blue pinprick tattoos on my jaw and upper
torso to show radiologists where to direct the beam. I feel more positive about
nuclear energy than some of my friends, but I still don’t have a microwave in
my home.
I have a callused vein in my right elbow. It’s where I shot
up and now they use every couple of weeks for an INR blood test to determine
how much warfarin to keep my blood clot free. Sometimes a newbie shakes their
head and tells me, “Someday we’re going to have to use somewhere else.” Numerous
tortuous explorations have revealed there is nowhere else.
I have bumps on my upper thighs from when I used to inject
with a guy from King Crimson. He said it was safer to poke there, was worried
about OD-ing and not being around for his kid. The high was the same; it just
took a little longer than mainlining.
Some of my finger and toenails are misshapen since I lived
in Cairo for four months. We stayed in a hostel and during siesta, houseflies
would land on hangnail cuts that would get infected in the heat and two weeks later
the nails would fall off.
On my forearm are two more travel scars from a drive to
South America when a cow parasite decided to move in. We were camping one night
in Costa Rica on the verge of the road near a cow pasture and I brushed
something from my arm. Four weeks later I could see the white larvae broaching
the holes in my arm. A Panamanian doctor put duct tape over it for 24 hours and
the bugs went nuts. That night I squeezed out a centimeter long, CN Tower
shaped critter and showed it to my American hosts on a piece of tissue. It took
longer for me to dig the other one out.
I have a few clusters of red cells on an earlobe. I have
another cluster on my chest. Both are in the old radiation zone.
When I was twenty I have had four wisdom teeth extracted.
When I was forty-seven I had two more back teeth taken out. My cheeks don’t
cave in (yet).
And I have brain scars, some from treatments like the
heart-lung machine, some from treatment. But who doesn’t have those?
Thursday, 27 August 2015
Angelo/Muta
Angelo A.K.A. Cat
DOB/05/05/08, is a beautiful, micro-chipped and certified Ragdoll, large but
light, cream with peach flame points, blue crossed eyed, neutered male.
An ideal bachelor cat Angelo
would suit someone who spends time at home like a writer or a retiree. He hugs,
nuzzles and cuddles. He will greet you at the door and will follow you from
room to room. He gently makes himself at home across your shoulders or on your
lap but leaves without resentment if he’s in the way. He will snuggle up on the
bed at night and resettle readily if moved.
Angelo is a picturesque and
affectionate and daft cat, full of charming eccentricities: he will play with his
toes and sometimes lightly step on your feet as you pass. He loves to explore and
is fascinated by mirrors which he gentle paws. He comes if you call or open
food. He's doesn't break things or claw furniture, though he chews our spider plant (which
we’ll send with him if you want) but no others. Not a picky eater, he likes
canned food and crunchies. He is not interested in people food.
Partially blind and deaf he's
perfectly happy by himself and would suit a solo cat environment. He will take
10 to 14 days to adapt to a new environment when he’s moved but his charm is well
worth the wait. Angelo does have a heart murmur and mild dental issues so he
will need regular check ups. He has a travelling box and a bowl of his
own.
Angelo is tattooed and displays
all the classic Ragdoll characteristics. Ragdolls are loveable and cuddly
breeds, find out more from this video: https://www.youtube.com/watch? v=bO4kxWR2gdM
Friday, 15 May 2015
Moment of Truth: Disability Marathon | Facts & Arguments Submission
The waiting is chronic and I don’t want jinx it by asking questions.
A year ago I qualified to apply for the Ontario Disability Support Program and it’s
been a slog. Two years ago I had surgery to rebuild my radiation-damaged heart;
I have new parts. Five years ago I was laid off from work. Thirty-five years
ago I was a teenager when I was treated with radiation for Hodgkin’s Lymphoma.
Now I’m waiting to find out if I qualify for financial help.
Last year my analyst suggested I apply. it would make life
easier she said. She warned 80% are turned down at first. 40% make it on appeal.
You need to have patience and be tenacious.
There are a lot of hoops: a doctor needs to fill in the 14-page
Health Status Report including supporting test results and medical material.
You can write a letter saying how wrecked you are and that you can’t work.
Six weeks after my doctor sent the package, a letter
informed us we’d missed a page. My startled doctor fixed it and faxed it immediately.
ODSP give themselves 90 working days from receiving the complete document to
vet it. In January they were reviewing September applicants. At the end of
January they sent a rejection letter and invited me to appeal.
I went ninja. I found hospital chart records stating
radiation disease. All my “ist’s” wrote supporting letters outlining ailments
and possible outcomes. I rewrote my self-declaration clarifying anything vague.
To get it all together I needed a one-month extension.
In April ODSP sent a bureaucratic letter, which I read three
times before I realized my appeal worked. My son said, “Congratulations, you
are disabled!”
Six weeks later the follow-up letter hadn’t arrived. So I
called and spoke to my worker for the first time. It took four days for the financial
information list to travel by mail 15 blocks in downtown Toronto. The
caseworker has twenty-one days once she receives my financial docs to finalize my
application.
The list asks for five years of tax assessments, income
statements, one year of bank statements, credit card and line of credit
statements. Utility bill, tax bill, gas and hydro, insurance notice and mortgage
renewal, they need an affidavit about my son’s invisible biological father, 36
pages in all. I called to ask if could photocopy there, at pennies a page photocopying
this many is expensive, let alone the envelope and stamps to mail it back.
My worker seemed impressed
I’d amassed all the data in 3 days and invited me to come in.
The disability office is several degrees degenerated below any
other of the paired-down civic offices I have ever been in.
Outside the street kids are bunched up on the sidewalk. One young
lady tosses a tight ponytail, has tattoos up her cheekbones and a cigarette
behind her ear. Tiny wearing in a bikini top and black sweatpants rolled over
her hips she was coyly teasing a huge guy all in black: mesh-back cap, t-shirt
and baggie pants, Jordan’s and gold jewelry.
The ancient building has modernized stucco exterior. Inside I
slowly climbed the old twisty staircase to second. A single grey security door opens
to a large bare room. There are no periodicals on the magazine racks; there are
no posters on the wall. There is no garbage bin or recycling blue box. All
there is is painted grey. At the far end a receptionist sits behind bulletproof
glass. There are 15 numbered doors around the room. Bolted to the floor are four
sets of plastic seats facing each other. Sporadically mumbling loudspeakers deafen
our ears.
My American friend suggested I consider going to this initial
meeting with a cane. Somebody downstairs could make five bucks a shot renting wheelchairs
easily rolled from the hospital a block away. I was relieved I didn’t fake it; the
staff has already seen all manner of exaggerated malady.
All us patients sit looking at each other while trying to not
being seen. One who doesn’t care is clearly homeless and spreads all his things
across several seats defiantly. I thought of a statistic about head-injuries
and homeless and consider him the most genuine.
By the time my worker gestured from inside the pen and pointed
to room 11, I was exhausted. It the same kind of tiny room where you get your
hospital cards or where you go to be admitted for surgery, two seats on my side,
one on hers, a computer monitor between us, lots of desk space to slide forms
back and forth, all in shades of grey.
The worker and I are almost the same age, same height, brown
hair, glasses on top of our heads. She’s better dressed because even though I
don’t want to fake it I didn’t shower and my worn cotton top has a little tear
near the hem. I think she probably has a kid like I do. We quickly realize we
are allies, she passes a pen and we get down to business. She outlined timing: she’ll
try to finish my file this week and call me next. She spoke about having me
come back for the top-up check; she doesn’t like sending it in the mail, which
makes my heart soar, money? She told me the computer would back date my claim to
whenever they deemed me disabled, my heart dropped. Six weeks? I don’t want to
ask.
My life might change next week I’m trying not to think about
how. And I don’t want jinx anything by asking questions.
May 15, 2015 (revised May 19, 2015)
| 926 words
Tuesday, 5 May 2015
Put It Together
One of
the things I do is rent a room in my house. So far 2015 hasn't been a stellar
year.
There
was a chef here who peed in bottles and kept them in his room even though
we have three bathrooms. A week after I asked him to stop it and “Do you need
some pajamas to get to the bathroom at night?” I found a whole wine bottle in
the paper bag in the garbage. The thought of the little old Chinese ladies who
have to deal with this stuff is what grosses me out.
There
was midwife here who did a runner. You could say she was within her rights if
she felt unsafe. Her car was parked out front and broken into one night, five
days later she was gone. The only thing missing from her car was a light blue suitcase.
Full of knitting supplies including partially done projects, I know this
because on a community cleanup I found it. Despite being out rent I emailed and
invited her to fetch it. Which she did, I realized yesterday because the bag is
gone from the front hall. She did not leave a thank you note or email one or
anything, its like I don't exist.
We
had the vivacious platinum blond lady with mesmerizing eyes and flawless skin who
within a couple of hours set off alarm bells. I tried to be patient because at
her interview she passed me the phone to talk to her mother so we could set up an
e-transfer. Her mom said, "Thank you for taking my daughter. She's just
been diagnosed with epilepsy". I took the phone to another room and with a
pounding heart hastily explained less than two years ago my niece died because
of epilepsy. The mom asked me not to tell her girl.
I
was blind; by the second night I thought maybe the bombshell was a sex worker. In
two days she'd introduced me to five guys and sexed three. She propositioned
another visitor and his girl friend. She also lied about her origin (Ottawa,
New York, London, Berlin) and her accomplishments: BFA Photography, Cordon Bleu
cook and her chores (guacamole fork in the clean dishes rack, stacks of bowls
and pots in the basement kitchenette, blobs of lasagna and half glass splashes
red wine on the carpet of her room).
When
I reached for the bottles of wine I bought to take to Seder supper both were
empty. She had drunk the contents, while I was here, and left them empty with
labels facing original orientation and caps on. Classic bad roommate shit.
Today
young man from Sweden left. Viktor is only 19 and has been alone away from home
for six months. He is self sufficient, friendly, funny and gentle. He bought
twenty-dollar vinyl boots for winter that he wore despite the heel gaping. He found
a job in TO, made friends here and was nice to cats even though he had didn't
like them much. His beautiful and funny parents brought came for supper. His
dad received a Nobel Peace prize along with the rest of the Swedish army in
1987. Viktor told a memorable joke everyday, like, “In Sweden you can do
conscription with the army or work at Ikea.“ seemed like a good idea to me.
Now
he's going back to Sweden bilingual, with work experience but not knowing what
his future in Europe might have in store.
I'm
crying a little.
And
I'm looking for a new tenant.
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