sometimes one must remind oneself ...

that there is still the need to dance
to celebrate the you that you are
to recognize
that even in darkness there is light
and there is always music

the music changes
as does the dance

the tempo
the mood
the beat
the volume

as life changes
so does the dance ...
swirling to keep up,
matching the rythms, the pace, the glory ...

but still we dance
naked in our own brilliance .......

.......... I gotta friend .........

sometimes it is just knowing
that there is someone in your corner
that has been there before
with gentle smiles
hugs and laughter,
full of love
unconditional,

a friend
just because ...

knowing that this person is there
can make the difference
the difference in getting out of bed
of taking the 17 pills each morning
and the 5 to 9 each night ...

this person is different than a lover,
a sibling,
a bff in the big girl league ...

this is someone who has been where I have been,
seen the sights that I have seen,
walked the tight rope,
balanced on flip floppies so brightly hued
loved her boys ...
and has seen the sun rise yet again ...

and yet still
takes the time
to love a friend
unconditionally ...

I am blessed ........... love ya KateyB

the big C

The big C has been following me around all of my life,
it took my uncle before I was born
and all of his siblings, my mother included were to feel the wrath of the mighty C

for years I have watched the destruction of families,
people torn way before their time
from those that loved them and cared ...

I have watched the destruction of the body,
once strong and firm
a thing of beauty
be decimated to a fraction of what it was ...
the loss of hair, the change of skin, the nails that crack and split ...

and I sat and I watched and listened and observed
and cried myself to sleep at night ...
for the simple reason that I seem to get stuck

I get stuck on the fact that god
yes, I did say god ...
gives us only what we can handle ...
she/he gauges are strength and looks at what we have to work with
and then assesses what it is that we can ideally handle ...

and as I sit here now,
starting yet another round of chemo
knowing that the BIG chemo is less than a month away
I am wondering if the added pain
the shakey quivery feeling that precedes my getting out of bed
the nausea that I have to swallow down,
the inability to even go outdoors for a walk by myself
because I can no longer see worth a damn

and then I think
fuck it
fuck, fucking cancer
there is no fucking way that I will allow it to control my life ...

all of my fucking life,
there have been those that have tried to control
and now when the time is my own
to live out my destiny
to take control

I will
I will take control
cancer will not defeat me
it might pain me
cause me grief
it might mean that changes are made
that I need to adapt
it might mean that my hair falls from my head
and my skin feel like the sand on the desert
it might cause me to talk and think in vulgar mode ...

but
fuck it
Cancer will not defeat me .................................

one day ...

One day
Two days ...
the change in between ...

funny how at one time
all the days seem to flow
from one to the next
without any sense of rhythm or loss
always knowing that the next day would come ...

funny how, your perception can change
almost over night
and you realize in the night that all of the days are different now ...
that the rhythm you once knew
has been sent topsy turvey
and that life is just a touch shakier now ...
just a touch ....

and I wonder will it ever return ...

just hanging out with the boys ...

Sometimes
the best thing to do is just to hang out
to watch the faces of your kids
as they challenge each other in a video game
to watch the older cousin
tease and cajole the younger one
to challenge and question
making him work for the win ...

eating snacks and drinking beer with his aunt ...
just chatting about life

sometimes the best thing to do
is just hang out and be with the ones you love
even if all you do
is sit back and watch
the interactions
feeling the love ...

sometimes

the dentist ...

One of the things that I hate more than anything else in life
is to go to the dentist ...
there just have been too many hassles
too many scarey incidents
and too many men who think that they don't need to listen when you try and tell them that you are allergic to latex ...

but
part of my latest journey
requires that all dental care be up to date
and that I go into the transplant
with a healthy clean mouth
with little chance of infection ...
because once the big old dose of chemo hits
there is no going back ...

today I met with a dentist with a sense of humour
who deals only with medically compromised patients
specifically with cancer patients and more importantly
she deals with meloma patients and has presented papers and delivered talks at conferences
she knows what to do and what is required ...

and she took me on as a patient
knowing that the time is ticking on the clock until the big day of transplant ...
I have an appointment next week for 2 and one half hours ...
three extractions of broken teeth and one root canal ...
can you say ouch ....

but healing time is of the essence ............
and it is only one step at a time right ........???????

when it becomes self personal care ... it all changes!

Myeloma ... living with a killer
there have been times during the past couple of weeks
that it has taken all the resolve that I have not to have total melt downs
one of the side effects of the chemo drug that I am on
is the inability to stop from having crying spells
personally I think I am doing quite well
as I have only had three
three ... one ... two ... three
all of them have had to do with the loss of control

I never knew or at least recognized how anal I must have been
about being in control of my life
perhaps it was for much of my life I did not feel that I was in control
being abused does that to people
confronting the abuse and facing it head on gave me the control that had been taken away from me at the age of 4 ...

but here I was 51 years later
still hoping that I would be able to get through this with dignity and self respect
it is funny when you do personal care for others
how it takes on a whole new role when you really need to do it for yourself
that all of a sudden it becomes much more important
because all of a sudden things that were once easy
are no longer ......... easy, if only it was ....
but, I am still too proud,
too independent
and way too in need of being in control
to give in and ask for help yet ...

but the family and friends are circling
I was told tonight that when the time comes that there are a group
of friends that will take turns coming to spend the night
so that I do not have to be alone
that I should never be afraid to ask or to be alone
it is not nor should it ever be considered to be a part of the equation
that is the way it is ...

last week I feared that someone I have known for over 20 years
had also been diagnosed with this dreaded disease
and I felt horrible and I grieved for her
it was only in the light of the next day
that I recieved an email from her to let me know
that she was a member of the group only because her mother had been a myeloma patient
and has since passed from the disease and this is her way of helping others
she has been a source of support ever since
giving me her home phone, encouraging contact and for her to do what ever she could to support me, including sitting and holding my hand if need be or to travel with me to Disney to celebrate remission when the time comes ...
and I realized again how blessed I am with the people in my life ...

one meets people on their journey through life
I learned a long time ago from my mother,
that if you treat others the way that you would like to be treated
that you will do okay in life ...
it is a lesson that I have always tried to follow ...

I know that this is a difficult time for many in my life
but I also know that each and every one is there for me ...
encouraging and doing what it is that they are able to do ...
and I love each and everyone for what they are doing ...
I know that for some, there is too much information
but for others they do not feel that they have enough ...
for me to talk openly and honestly about this disease and how it is effecting me
is my way of dealing with it and it is also my way of informing people about myeloma itself
it is not a common well known cancer ...
it is very rare
it is not genetic and is not commonly something that family members would get ...
it is an enviornmental disease that if they can figure out the hows and whys
they might be able to stop it from happening to others ...

right now there are approximately 6000 Canadians living with myeloma
some records show that almost 2000 Canadians will be diagnosed this year
some people do not think the life expectancy is very long ...
the people I am meeting are looking at 4 to 5 years after transplant ... or 9 to 10 years ...
I have heard rumours of a 22 year survivor, a retired nurse that lives here in the London area ...

that is my goal ...
not to give up, to encourage research for drug and treatments ...
there may not be a cure right now, but who is to say in 2 years what will happen ...
in the past couple of months that I have been diagnosed, 2 drugs have been approved by the Ontario Government for payment ... that is huge!
my goal is to also teach people about the disease itself ...
to look at the patterns, to discover the commonality ...
my past experiences might help to lead to some answers ...
but I would really like to bring this disease to the public
to teach them about it and the importance of folks taking the time to look after themselves and to take themselves to the dr. when they do not feel well rather than to avoid the issues like I did.

Looking after oneself ...
it all goes back to that ...
whether doing personal care that you never thought you would look at,
as doing self personal care ...
or looking after oneself ... before it gets to be a need ...
go for the annual physical and blood work ...
if the dr. tells you you need to go for a test go for it ...
take the time for you ...
we are all worth it ...

some of us just need more time to discover it and follow through with it
life is for living ... one day at a time if necessary ... but definitely for living !!!!