riotheclown: clowning (Default)
I woke up pure
with anger,
the way a baby's cry is pure,
the way the moon looks when you're lost.

But before I could write it down
the day began to unwind it.
Dream fading as
the cold floor greeted my feet
Recollections
not of the dream
but of having forgotten it before.

The flesh gets hard, the skin puckers to an ugly scar.

I forget to unwrap the anger
to give it air
to let it cry
to see it
and thank it for keeping me alive.

So I do it now, my coffee growing cold as I type, sixty-five and barely a reason to try, but I try.

The moon wanes,
Babies sleep in their mothers arms
Anger dissipates along with pain
scars turn silver
like the edges of forgotten dreams.

I'm not pure. But I'm healing. Late but still alive.
riotheclown: clowning (diva great life!)
This is now in the collection of David ConnellyThis was one of my first paintings after chemo.  The future was very uncertain.  I guess that was how I felt, like I had been stripped of everything that made me who I was and left for scrap in the desert. And yet I do remember feeling a calm I had never known before.

These colours together make for a very peaceful feeling, at least for me.  I do love a horizon.
riotheclown: clowning (onandon)
Or just routine...

G.D. continues to get old. After a long day of having radioisotopes scanned in her heart it was concluded that she should live another twenty years.

She claims that everything before two years ago is subject to her fancy and not dependant on any sort of reality. Sounds like American foreign policy...

But one thing interesting and sort of wonderful, I was telling the technician about having a similar scan of my entire body years ago and (it was several hours long in this case) the tech told me that someday they would be able to target cancer on a single cell level and zap them, ending the need for chemo and radiation. (If you are or have been a cancer patient it was like finding out unicorns are real and you can ride them.)

This tech told me that essentially they have been able to treat thyroid cancer using this approach. Apparently thyroids love iodine so they target the cells with some sort of radioactive iodine... I don't know. Google it! But Amazing or What? Or go here: Radioimmunotherapy is a type of treatment where doctors inject antibodies that have isotopes attached like little backpacks. The antibodies (called monoclonal antibodies) then flow through the bloodstream and attach themselves to the cancerous cells. The energy from the medical isotopes is thus targeted straight to the cancer. This type of treatment is showing great promise for blood cancers such as leukemia, lymphoma, and multiple myeloma. Most Radioimmunotherapy treatments are still in clinical trials.

Medical isotopes can also be directed to cancerous cells by a carrier that has an attraction to a certain part of the body. Chemical phosphonates can be paired with medical isotopes and sent to the bone, since phosphonate is a natural building block of bone matrix. FDA approved treatments for pain associated with cancer that has spread to the bone are based on this delivery system. The medical isotope Iodine has been used for thyroid treatment for years because the isotope itself is naturally attracted to the thyroid.


The short lived isotopes are hard to get and there is very little supply so lots of people are not getting treated with them. Maybe, instead they could shrink a bunch of scientists down to cell size and put them in a miniature submarine and inject them into a patients blood stream? THAT WOULD BE POPULAR AND SEXY!
riotheclown: clowning (pissoff)
Who cares right?

Well, I do. Pssssssssssssssssssssp Indigo


riotheclown: clowning (caroldirty)
Yup. That's it, it's over "unless you need me".

NO MORE APPOINTMENTS WITH MY ONCOLOGIST!

And I looked fabulous while I walked out the door.

I'm just saying.
riotheclown: clowning (Starbuck)
I have learned that I am very lucky. A friend's husband had NHL and was free of symptom's for many years, just starting chemo for a recurrence.

So, I should not complain so much. Right?

I went out and bought myself some NEW clothes, not from Sally Ann's but from a real clothing store. Hey, my birthday is coming and I've got my annual cancer check, how many excuses do I need to buy clothes probably made by human slaves in an impoverished country?

Gawd I am a kill joy.

I look good. Not because I have to, to justify my space as a "woman".

Really?

I mean I made my own deodorant. I am righteous. I am green. AAAAAAAAAAAAAAAAAAAAAh.
riotheclown: clowning (caroldirty)
I am going to see a new baby, have my NHL check up at the Odette Cancer center, and meet a new friend and check out the Riverdale Art Walk.
riotheclown: clowning (Dr. Who)
"Seen the lymphoma consultant today and im in remission first time told that in 8years says I cant be cured but can be maintained. My blood count is still low and bone marrow still efected. Getting a cat scan for my headaches*. He also said there is some new treatment just become available."

This if from the NHL facebook page, not my post.  It is so frustrating trying to explain to people what it is like even this many years after chemo.  This year my check up is not before my birthday.  I feel like I'm being selfish not wanting to celebrate until after.  But being 56 is not a big deal.  Counting the years without symptoms* is.  I have to stop reading the page though.  IN this depression gets to be too much.  The side effects, like heart damage, brain damage, osteo, liver, spleen and kidney impairment, auto immune difficulties: it is heartbreaking at times to read...

Caregiving a crazy 91 year old is hard too but I can only complain so long before recognizing that it is not really much of an outlet when there is no more help to be found...so I will go look at art for the day with my friend Dee who bought me a membership to the AGO last Xmas (she says to thank me for taking her to the art gallery during her difficult year with her marriage ending).  She has become a good friend and it means a lot to have a friend that I don't have to twist myself into a different person to pass as someone someone might like.

On that subject, I am so happy to have found a new sanga.  For all the wonkiness of the group, the casual nature of coming and going and my telling discomfort with it, I am really happy to join a group, sitting silently, many with aching knees and feeling the support of their efforts.  In many ways, it answers needs that I can barely express, so instead I will just acknowledge that I am foretunate in finding them.

G.D. has her physio appmt. and a ride with Transcare whose drivers take good care of her on these trips...
riotheclown: clowning (Default)

November 17, 2010

Title: Hanging by a thread.

prompt: I’m with you.  Thanks to lj community: All_unwritten 

In 1989 most hospitals had not come around to the idea of comfort. The way of thinking, a continuance of 19th century understanding of germs, was that anything but resilient surfaces that were easy to clean were germ factories. The sick were germ factories or germ receptors and so were held in as clean a form of isolation as possible. Walking through the halls of a hospital even the softest step seemed to click. Walking towards yet another painful test or procedure, the walls stood like disinterested guards at the gallows.

 The only comfort was the nurses.

 In 1990 I had been diagnosed with an aggressive form of cancer. I was scheduled for a “Lymphangyogram” for some reason the Saturday Night Live skit with a shark pretending to be delivering a “Candygram” comes to mind. 

 A very tiny amount of dye was to be injected by machine very slowly into the tiny little conduits of my immune system. They were to make incisions into my feet and sew thread like tubes to the little veins (arteries?). It was a painstaking procedure. I had to be strapped down to the table so I would not move. My feet had to be frozen. 

Despite the heavy restraints I got the shakes and they were interfering with the surgeon’s ability to attach the tiny threads. In general he was not having a good day. He swore frequently. He was starting to hate my feet I could tell. 

 I have a horribly pathetic habit of apologizing to people when they are hurting me. I think this annoyed him even more. (It usually does, as I said, it is a really horribly pathetic habit as well as useless.)

 He complained, “She won’t lie still. Give her an Ativan.” He might have said Valium. (These days the wonderful drug is Ativan.) 

 He said it to the nurse who was standing by my side the whole time. As soon as I took it I noticed this nurse who had been holding my hand. He was the most beautiful man I had ever seen. Of course this can’t be true but it was what I thought at the time. Suddenly I was filled with love for everyone, even the doctor.

 “Are you having a bad day?” I asked him. 

 My lovely nurse bent over and whispered to me, “Give him hell! I’m with you.”

 “Maybe you should count to ten, or go for a walk and come back, I know, get a coffee!” I was on a roll.

 My nurse winked at me.

 As it turned out he never did get me hooked up on the left foot. I had a reaction to the dye and it blew out the veins on my calves. Infection set in and when I went to have the stitches removed it was so horrible and frightening I ended up pulling them out myself, in pity for my G.P. who was suddenly pale. I have pale scars on that foot, where incision after incision the doctor had attempted to find a vein without success. The x-rays therefore were pretty much useless. I don’t know if I cared. I remember it as one of the truly horrendous experiences of my cancer nightmare.

 At the time the provincial government had not yet cut back funding and hospitals had not yet cut back on nurses, not yetI was lucky to have an angel of mercy beside me to whisper, “I’m with you.”

 In the last 25 years the technology has improved but nursing has been fractured by cut backs. When I took my mother to St. Michaels Hospital for eye surgery recently there was a wonderful waiting room done up like Christmas but patients walked into surgery pulling their own I.V.s without a nurse, or a word or hand held until they were served up.

 I know that it is expensive to run hospitals. I know that funding is for equipment and that concern for the comfort of patients is expressed in homey little touches that make hospitals look like ski chalets and that is all well intentioned, but I can’t help but think that cutting back on nurses twenty years ago derailed the quality of care in Ontario.

 Bureaucracies are always lumbering fools, they need constraints and an Ombudsman to keep watch for flagrant waste, but when we elect those who advocate the striping of funds to those institutions that express our better natures, we tell our own hearts, that in our hour of need, there will be no one who will be there to say, “I am with you.”

 

 

 

 


riotheclown: clowning (Default)
"looks good, see you next year!" was all the good doctor said.  : )

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