DNR

do not resucitate

what does this mean to you

to me

it is giving up

giving up the life of another

playing god and making decisions

that are not necessarily

what the person lying in that bed would wish

DNR

they asked me what my wishes were

when I entered the hospital

would I want them to make an effort?

I remember staring at Sean my RN

and asking ...

are you serious?

his reply was "Yes, I need to know"

he then went on to tell me that I was very ill

and in situations like this they ask

all patients

I wonder what my father in law said

when they asked him

or did they ask him?

My ex is power of attorney

they designated him so

thinking that our marriage

would be forever

not knowing that in less than two weeks

it would be gone and dissolved ...

I remember my mother in law apologizing

and saying, that part of the decision

was based on my advocacy

and they knew that

I would insist on the best of care

that I would make sure of quality of care

that I would respect their wishes

I read the email this morning

telling of a man

who is still fighting for his dignity

and trying to look after his own private needs

struggling against the bonds that bind

and determined to be as independent as he could be

and I think

does this sound

like a man

who would want a DNR?

and I wonder who is this man

that I once lived with for 30 years

as husband and wife

and I wonder

what happened along the way

that life lost it's value

and that it is okay to just sign it away

DNR

I have a feeling

it is going to be a very long day

a day of tears

a day of memories of a kind and gracious man

full of dry sarcastic humour

that I see in my son

and so the line continues

but I wonder of the generation between

the man who named himself God

and know that it is best if I leave things alone

as I have this very strong urge to

bitch slap

two weeks ago we were talking nursing home

now we are talking funeral home

I have this strong desire to bitch slap

but thank God that I am too far away

and so as his journey draws near to an end

I hope that they at least give him the dignity of not being alone

I would hope that

at least this small amount of dignity

would not be too far from their hearts

and I wish for him

Godspeed

with love and no pain

to be surrounded by those loved ones

who have already made their journey

and I send my love

and I apologize

I would have tried harder

but that is me, never the one to take the easy route

but the one that said

what if ...

Would you, Could you ...

If you were told that this is it

the last thing that we can do

what would you do?

would you walk the walk

or would you look away

would you seek other options

or accept what you already know

would you take another look

at that bucket list

or would you just let it be ...

consider it to be unfinished business

what would you do?

a job, a life, a love undone ...

what would you do?

Another January, another relapse ...

I think that I am almost afraid to go see my oncologist

in the months of December and January

two years in a row now

where the news has not been good

two years in a row

that I have cried myself to sleep

two years in a row

where the fear that I feel

makes me quiver and shake

as I try to bite my lip

and suck it up

but how does one suck up fear?

how does one wake up to face another day of pain

another day of uncertainty

another day of not knowing what one needs to know

another day of missing my children

no matter that they are now adults

missing them all the same

relapse January 2011

a dose of Revlimid and Dex

a night of barfing in the toilet

inbetween rounds of the runs

at times the toxic crap leaving my body

both at the same time

and my crying in the night

as there is no one to share my pain ...

relapse January 2012

Velcade ... the final frontier

an IV injection

running poison thru my veins

the make it or break it possible fix to MM

and I cry ...

I cry for myself, my children, my family and friends

I cry because I am not ready

not ready to say good bye

not ready to say I am finished

once again, I find myself immersed in tears

and wonder ... why me? why me ...

January 2012 ... one more January, one more drug ...

if I can go one year than perhaps the new drugs,

the drugs full of promise and low side effects

should be here ...

it is hard to advocate for something that seems so far away ...

here it is January ... only 11 more months to go ...

Let me carry on ... just 11 more months until the new drugs are here ...

holding on for all I am worth ...

holding on by the toenails ...

and so, here it is January ...

I am hoping to turn this all around and go back to thinking of January

as the birthday month for two of my brothers ...

the birthday month of several friends ...

the month to get back in shape ...

to pay down the visa bill

January, the month to bundle up from the cold

to carry on like Myeloma has never effected my life ...

January ... a new month

a new year

a new way to fight the cancer that grows within

I will win ... I will just keep trying until I do ...

tears on my pillow ...

There are days when I awake with no pain, no nausea, and no cramping ...

and there are days when I can barely move because the pain is just too much.

There are days when I feel great and look forward to the day

and then there are the days when I just wish it would all end ...

The days when I feel great

and then the ones where I just cry ...

cry, for no reason at all.

Someone told me once,

that tears are what cleanse the heart and the mind ...

not too sure of that ...

more like they flow for no reason

and the lump in my throat only gets bigger as they flow ...

and I wonder, will it ever get better ...

will it ever stop hurting ...

will I ever stop feeling the nausea and the stomach that flips on it's own

and it is not even three years ...

three years of waking up every morning

and being surprised ... that I did wake up

and I wonder if my body goes through the moment of expectation

will she or won't she

the phone rings at 0600 ...

I hear the ring ... three short rings

to be repeated not once but twice

before I reach to pick it up ...

my early morning wakeup

my morphine cue

40mg. in 4 little caps

the part that gets me thru 'til 0200

and even as I sit here

watching the clock

tick down

tick

tick

tick

and still the clock says that it is way too soon

to think of bed yet again ...

but although the mind and the brain are clear

they know the rules

the body, screams in pain ...

and I close my eyes as once more

the tears pour from my eyes

one tear at a time ...

ta-dah

Have you ever got to the point where you go searching for the lost link and can never find it, and then all of a sudden with a stroke of brilliance you have a ta-dah moment ...

duh ... definitely a ta-dah moment was had today ...

whew ... I have tried and tried to remember with very limited results

what ever happened to those blog sites that I used to have

hard to believe that they would just vamoose from site for no particular reason ...

but then I remember, oh yeah, stupid chemo drugs that turn your brain to mush!

and I giggle to myself, as I think of all my non cancer friends who would beg to differ

for they would say it was old age, or menopause, or just because

Heaven help us if they were to think that it could actually be the drugs ...

drugs that keep my body working in hopes that it will someday be able to heal itself ...

like as if ......................................... not really, but as if ....

and I think to myself ....

and I giggle again ...

body, heal yourself ...

or dammit, I am going for chocolate ... lol

The ass kicker chemo ...

In December, my body not only relapsed but doubled the IgG and Myclonal or M-spike numbers from 31 and 29 to 60 and 62.3. It was time to bring in the big guns or as they were referred to "the ass kickers" ... what can I say. The first night of taking both drugs, spaced by about 3 and a half hours, they said to space them ... I thought that would be enough, it wasn't. Apparently spacing them is 10 hours apart. It was one of my worst nights during this journey. I was basically in my bathroom, with my lovely yellow puke bowl in my lap. I had two of them and when we packed house and the three of us all had our own apartments to furnish, I think it was Bry who said, you know Mom, I think I can get my own puke bowl now ... good thing he left me one as it has been well used and for awhile, it looked great sitting on its own pillow on the other side of my bed ...
I was in the washroom, basically for 5 hours ... I talked to both kids, even offering to pay a cab if Ben could come from Waterloo. I knew that Chris had had a rough day at work and it was a long shift ... Gail was in Cuba ... Heather worked until Midnight ... Lynda's hubby works nights and she has to be home ... all of my normal rides were not available. I was on my own for this one ...
The stomach pain was comparable to childbirth with no epidural or other pain pills, I had a splitting migraine that seemed to encompass my head in a vice with pressure on the base of my neck ... my formerly really constipated stools were coming out as water by the end ... there was nothing else left. I would cough and it would virtually come out both ends at the same time.
It was the first time, that I ever wondered if this was all worth it ...

after a chat with the pharmacist and the oncologist, we decided that we should wait to Monday before taking any more pills and that I should try for at least 8 hours apart if not 10. I should take the dex before 930am so that it reacts with the bodies natural dexamethasone ... who knew we had such things and Revlimid well, it is best taken on a full stomach, the only thing is that it caused gas and bloating that first month, with lots of gas expulsions through any oriface that it could find ... I think my brother Bill would have been proud of some of them. I personally was afraid to light a candle for the famous blue flame. Slowly, things were starting to settle down and the first three weeks were over. Then I developed pneumonia. That would be the number one side effect of this drug ... usually happening on completion of your third week of treatment. Hmmm and the fun is just beginning ... to be cont'd

I have been spending a great deal of time lately
reading other people's words
seeing their pain
their joy
their first thoughts of what it means
to live with Multiple Myeloma
to know the fear
that strikes us all
the hope for a cure
the need for a cure
the anger because it could have happened
to any number of assholes
wandering uselessly on this world
but why me?
I watch their faces
as they think, no probs
this is a breeze
I used to have that face
and now it seems to have faded to reality ...
reality bites
but cancer sucks
trust me I know ...