Western education 2013

Saturday, October 4, 2014

what is it like to face your mortality.....

..... when you are still holding out for a miracle?  

I am having an introspective and sobering week now that my cousin Torsten has passed away nearly a week ago.  He was only 10 months older than me.  My friend Melina was 46 when she passed with cancer on May 10th.  I often ask myself, why am I still here when I have an aggressive cancer and then I remember.... it is spreading.

My cousin's vertibrae were collapsing mere weeks before he passed away while on chemo.... like the worm riddled wood of a termite infested beam.  Melina's cancer had spread unchecked to every far reaching corner... carried by the same bloodstream that brought her life.  Both were on chemo for months before they passed away.  Both did not have a quality left to their life.  I wonder if that will be me?  Of course without the we know, it does little to kill the cancer.  

In May 2013 my bone scan was clear.  In July 2013 I was in emergency chemo because I could not breathe.  While the chemo may have reduced the tumours in and around my heart and lungs to a level of comfort.... the cancer simply relocated to the bones.  I am reminded in the Chemotherapist's office that 'we bought a year'.  And what a year it has been!!!  Phenomenal and full of amazing moments.  I suppose I would not change a thing because I was given that gift of just one more year.  The  illness is rearing its head with a vengence and is spreading to other locations deep within the bone.  Yes, I know exactly where because of the pain in those localities.  Most people would think they bent the wrong way or slept wrong.... until you realize that bruises or strains resolve in weeks and do not persist for months on end.  The pain spots are minor but the fracture in the sternum is major and its amazing how many other parts rely on just that one small bone to do complex to simple motor functions.

This week I have a terrible cold and the coughing racks my body and shakes my ribs with each draw of breath.  I have to watch out for possible complications of pneumonia so watching the mucous means we are looking for blood.  I am thankful the radiation has reduced the enlarging lump in my chest to something more normal.  On either side of the sternum, its hard not to notice the nerves have been affected either too sensitive or not sensitive at all.  While in radiation, I visualized the cancer cells being pulled out of my bones and igniting as soon as they reach a ball of fire I have created in my imagination and blazing just past the tip of my fingers so as  to zap them so they can't return.  The mind is a powerful healing tool and I just hope I got it just right.... my fears would like to tell me otherwise.... go away fears.... just go away already.

Where do you go and what do you do when you are faced with the prospects of living a much shorter life than expected.... you get sad..... angry.....laugh hysterically..... cry..... rant  and then.... you get on with your life.  Do I have a bucket list... NO is the short answer because we rarely think we need to consider that 15 or so years away from retirement.  We are too busy living the life we feel we are obligated to live while saving for the one we wish we had more time for.  When time runs out and you don't make it to retirement, then what??  You begin to choose your priorities rather quickly.  Making memories for my chilldren is the driving force behind the trip we planned in December to a warm climate where we can play and be together.  It's 9 weeks away and I worry that I might fracture the leg keeping me here in London instead.  We simply cannot worry anymore about what might or might not happen, only to cross that bridge if we get to it.  I am grateful for a country that has medicinal marijuana which allows me to sleep and be pain free at night.  I just wish everyone who needed it could  have it available. 

Beautiful flowers....
It is Monday and I am puttering around getting ready for a mid day meeting when there is a knock on the door.  I look around the livingroom wall in time to see a set of eyes staring into the hallway where I am now standing.  I open the door to an older gentleman holding a beautiful bouquet of flowers.  He confirms the recipient, smiles and heads down the step mentioning how nice the sun has popped out of the clouds after admitting to staring through the window at my cat who was standing on the other side of our kitchen sliding doors looking to come in.  I pull out the card and begin to read it... instant tears pop up... its from Nicolette in Holland.  Max heads up the stairs and also reads the card.  He too has tears....

Thank you so very much for your kind words and for brightening our day!!! We are so grateful!!

Finding Support.....
I do not spend a lot of time mulling over things unless it is to solve a problem... I am constantly moving forward and looking for my next goal.... but sometimes, it helps to know that there are others in the same journey and it is essential to learn what treatments they are taking and how they are coping.  I have joined an online TNBC Stage IV group.  Stage IV is the last staging in a cancer journey and these women, like myself, have already been through a few years of one diagnosis after another so they tend to cut to the heart of the matter and are real in their genuine support to others.  They understand what it feels like to be in the journey.... councellors depend on what they have been told or have read... they have their place too... but not for me.

Getting Support.....
Probably the hardest thing to do for a woman who is so used to calling the shots and living life on her terms is to ask for support.  For an A type personality, asking for help is not the same as accepting help.  We don't ask for help but we are quick to offer it.... even if we are too sick, we will always try.  My friends have learned to not ask... they just do.  I am really blessed to have a number of incredibly loving women in my life.  

Treatment Day.... 7 October 2014 - Pamidronate infusion
I head out to the LRCP at Victoria Hospital.  My appointment is for 10 am in the morning.  I am chronically early so I report in with the secretary and then head out into the hallway to wait.  The chemo suites are always busy and here in the back hallway, we see many employees moving in and out of the chemo suites at the end of the hallway to our left.  I don't like chemo and I can still feel and taste the toxins in my mouth... I shudder and feel grateful that I am only here to get an infusion to help fortify the bones that have cancer growing in them.  Technician Lillian makes her way out to me in the hallway... it is my turn to head into the suite.  I turn to the older gentleman in the chair next to me and place my hand on his arm.  I wish him all the very best and he looks over to smile up at me.  He is there to have his pic line removed (an IV line that is fed into an arm vein and threaded into the chest ensuring an easy quick connect for chemo and blood tests) now that the recent chemo treatments have not helped with his cancer. 
Lillian leads me into the OD suite and I sit in a large comfey chair near the windows.  The late summer sky is beautifully blue with wifts of white clouds skirting by, pushed by the morning winds.  I explain to her about the main vein not being a viable one for IV's anymore.  No worries.  She wants to find one that will allow me to move my hand without restrictions as I will be heading home with the IV bottle attached.  It takes about 2-3 hours to completely infuse the medicine into the veins and then I need someone at home to help remove the IV.  Liliian chooses the large wrist vein and has me breathe in deeply as she inserts the needle.  Great job and she earns her first of three hugs!!!!  She goes over exactly what I need to do and how to instruct my friend Brenda to pull out the IV.  
 This is a really ingenious way of infusing the medicine.  A balloon is filled with the medication that is pushed through a tube that runs up the middle of the bottle.  When the infusion is done, the balloon will deflate around the center tube.  It can then be put into the garbage as this unit is non toxic.  Super cool.  I wish to thank my lovely friend and neighbor Brenda for always having a sense of humour when it comes to helping through the most unusual requests!!!  I have my next infusion in four weeks after they test my kidneys to make sure they are functioning well.  I am supposed to do this for the rest of my life... I guess we will wait to see.

Prettying up the Pink
I am outspoken.  I always weigh the importance of filing a complaint before acting to ensure that the complaint is valid.  It is Pink October.... the time of the year when for weeks, we are inundated with pink promotions and sales all in the name of donating to a good cause.  Well..... just about everyone who wants to make a quick dime is also out there selling inexpensive trinkets or using the cause to promote or further their business.  Fund raisers use marketers that they pay to maximize their reach and exposure in order to increase fundraising dollars.  The CIBC Run for the Cure fundraises for the Canadian Breast Cancer Foundation.  I have been an invited spokesperson for the Run a few years ago and participated in the run for a few years.  The issue with their latest marketing has everything to do with what I classify as 'prettying up the pink'

My letter to the CIBC primarily says that the marketing itself is insensitive - 'Sign up to create more amazing family memories'..... as if living with cancer and the consequent metastasis are somehow linked to creating amazing family memories by running for the cure??????  I am assured by the CIBC's response that the woman 'Nalie' in the poster is a breast cancer survivor being supported by her two brothers.  I write back to ask them if anyone looking at the poster of a healthy beautiful young woman being cuddled by two men would even know that?  The poster could have said.... 'Survivor Nalie is supported by her brothers on a day when she can give back to help her 'sisters'......

Here's the thing with marketing - they are there to make it look great.... but the reality is..... cancer is not a pink bola or a 'fun' event.  It is serious business where people are dying. This poster in my estimation is grossly insensitive to those of us in the journey who would like to see the 'entertainment' in our disease to end along with the disease.  This fund-raising has been going on since 1986 and they continue to say 'we can't stop now.... we are getting close to finding a cure'.  In the cancer world as with any other... close only counts in horseshoes and hand-grenades.  I understand and applaud fund raising when it is done with respect and the money raised all goes to research.  I am disappointed that the reality is.... all this money..... all this time and we are still being treated with medicines created and used 40 years ago.  Living longer with an illness is not always quality based and yet statistics that have been tossed back to me say we are living longer.... Melina 'lived' longer.... on almost 15 months of chemo until the cancer took over.  She spent the last 5 weeks of her life slowly dying. 

The Canadian Breast Cancer Foundation has not responded to me but prior to this, they were always good about throwing out statistics.  So here's a statistic - 69% of all monies goes to research - The Canadian Breast Cancer Foundation chooses which research facility will get granted what money.  Who decides where the money goes and why?   

It is your money and you can donate to whomever you choose to.  I only ask that when you do, do so knowing where your money is being spent.  Researchers will gladly accept your donations directly without going through the middleman.

Thursday October 9th.....
My first day off when I can simply sit, enter course grades and watch daytime tv.... while blogging... I am watching Border Security... and all those people being arrested for Marijuana (which is still classified as a narcotic) despite the fact that some people use it as medicinal marijuana from another state or province.  Knowing how well this medicine works for me.... its hard to believe that it is classified as a narcotic when the real narcotics produced by big Pharma have essentially caused more harm and dependancy and even death.....yet, you can carry it with you in your luggage as long as it has a DIN and prescription on the bottle.  This afternoon I will have a Reiki appointment.  I will just enjoy the day with a lovely cup of tea.....later I will go out for a walk and enjoy the cool late summer breezes.  

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