..... getting in the groove

..... trying to work out the pain in my hips and knee joints at the fitness club yesterday on the cross-trainer left me standing in the middle of the room contemplating how I was going to manage not only to get off the equipment but to actually propel myself in any given direction??  Eileen dismounted from her treadmill, organized her breathing tube and began to make her way over and stopped when our eyes connected. "You can't move can you?" she asked when I made no attempt to move towards her.  "No worries, I'll get there", I said as I shuffled over to the hand sanitizer and feeling stupid along the way.  I know it will take time and lots of it to get to where I feel I am physically strong enough to handle the whole day instead of parts.  Once I got going, I was able to get to the change room to dress and ready myself for the rest of the afternoon.

29th April 2010

I am heading out this morning to attend a meeting with Mr. B. Orr, the VP of the Cancer Unit here in London but meeting with Maxine first.  She is a feisty retired school teacher who, like myself would like to present a petition and to discuss the avenues by which the budgeting issue may be headed with regards to the care and support nursing staff at the cancer clinic.  We meet at the local McDonald's to discuss what we will be presenting in addition to the petitions.

We were met in the front lobby by Mr. Orr himself, as he explained that his secretary needed to step out for personal reasons.  I found him to be soft spoken and willing to talk and although he appreciated our input, their mandate is to provide care on a budget.  The trials that patients partake in are free when it comes to the medications used but the gap between the trials and the actual mainstream usage can create expenses that are out of pocket for patients and/or the unit while the government looks into their coverage of these new drugs.  I noted part way through the conversation that he was suffering from a twitch under his right eye and he looked away quite a bit when addressing us.... I am sure it is stress induced. They are funded through Cancer Care Ontario - an arm of the Provincial government of course headed by our illustrious Deb Matthews, who still has not responded to any of my letters to her. Our conversation was quiet and I asked many questions of which I am grateful I wrote in letter form and was able to present it slowly while looking up after each point.  I offered him an excerpt of my own journey and a few others to consider.  I let him know that I would be seeing him for a follow up meeting in the next few months.

Maxine and I walked back to our cars and she turned to me and said that my presentation was powerful. I hope it has enough of an impact to create positive change as I know the initial backlash did.  I am learning as I go and my approach is simple - I want to be part of the solution and not part of the problem.  It is a quiet approach with a lot of thought behind what needs to be said.  Next week I have a few more meetings - fact finding missions with people having a great deal more knowledge and experience than I have.

I meet with Megan for lunch after my meeting and we giggle at the sight of the two of us with similar hair do's.... the patrons in the tables around us are slightly curious and the knowing looks are ones of kindness and support.  We gab away like school kids and we ask each other a ton of questions - menopause - yep on both counts and yes, her emotions, although not as outward as mine are showing on the odd occasion and has taken her by surprise.  I have done a bit of research over the past week and found a great site sponsored by Lance Armstrong and I let her know that I wish I had found it a few months ago.... at least I could have saved myself some of the depression I had found myself in.  She promises to look it up when she gets home.  We both talk about the support we have gotten from our friends and co-workers and feel that we are truly fortunate for having such loving family and friends.  Not everyone has that advantage in life.  We are most fortunate for being able to communicate all these months about our journey - no one gets it until they have walked it.  I love you to pieces Megan!! xoxoxox <3  Can't wait to see you again!!

Found this link to be helpful and wish I had seen it a few months ago.  I have paced myself well through the treatments but once they were done, I did not expect the emotional tidal wave I had kept at bay for months.  After weeks of crying, it became clear that I was depressed and decided to do some research and came across this link from the Lance Armstrong site.  The journey does not end because the treatments do.

http://www.livestrong.org/site/c.khLXK1PxHmF/b.2661047/k.9E2F/Emotional_Effects.htm

This morning on the radio, I heard that Larissa, a quadriplegic here in London had the Animal Control knock at her door to inform her that she is not allowed to keep the chickens she has been raising with help from her assistants.  She is devastated at this latest development after she went to City Hall to support the bid to have urban residents be allowed to raise these animals in their back yards.  As with everything in life - it is not always cut and dried.  They have brought her joy and purpose.  I wish you all the best Larissa and send you my best.

.... slow to mend

..... whoa, I think every joint is protesting these days and I find myself shuffling and in pain - it comes and goes and I figure it will fade in time.  I try to do something physical every day like walking or gardening and soon I will go back to the gym thanks to the kindness of a friend of Max.  This friend keeps in contact with Max and has generously extended my membership as I was unable to go these past 6 months.  I am dedicated to losing the weight and getting back in shape so that I can get back to my routine as soon as possible.

The early and abrupt menopause is likely a culprit adding to the roller coaster emotions, although I am feeling much more grounded today - found some projects to do to keep my head occupied like the garden ornament which had faded in the sun over the past few years - acrylic paints are magical and within an hour, the garden ornament was ready to go out by the pond.  Ah, the pond.... magical in itself with the three surviving fish swimming happily amongst the greenery coming back to life as the sun shines through the now clear water.  Shelly has given us some small fish and they can be seen every once in a while.  We will miss her and Paul now that they have sold their house across the street, especially Lydia who makes her way across carrying a realistic turtle that she adds to the pond.  She looks at us and lets us know that she will miss her friend.

Lydia has grown so much this year and I have enjoyed every evening with her, reading books and teaching her the strategies of playing checkers.  She is not a baby anymore and I see the adult teeth pushing through the front gums.  She has broken another tooth this past week and the Dentist needs to put in another crown - this all because of an accident when she was 4 years old.  We were visiting a local park and the railing of a deck overlooking the Thames River was only just below my knee.  Quick as lightening, she followed her head down the 8 foot drop and impaled her chin on the rocks below breaking a number of molars..... it was that dramatic incident that was the catalyst in selling our house and buying the one we really wanted.  Funny how we sometimes wait for something to happen before we change directions in life.  I feel like that a lot these days and not surprising considering the situation of the past year.  I was reading an article about the people aboard the aircraft that slid into the Hudson River a few years ago... it makes you re- evaluate your life.

Mitchel is becoming more outgoing, however that being said - he still reminds me of the scattered professor.  He is unkempt, leaving wrappers in his wake and being a general slob of sorts.  He is taking a shower regularly without having to be asked now... he is hitting his teen years now - wow, 13 years old!!  He says it doesn't bother him that his Dad no longer calls on them... its been over 8 months now of silence.  It's hard to say what is going on in Mitchel's head but he holds my hand out of the blue and will crawl into bed with me on the mornings that I can barely pull myself upright.  He is an observer and notes the other day that we all are on a journey and some not as obvious as mine.... he too has grown so much this year and stops to talk about whatever is on his mind.  My children can tell me anything and we talk about everything.  We know each other well and despite the odd bad day, we have a close and loving relationship.  Kids are funny, they take each day as it comes.

William has grown to now a little over 6 feet and didn't take long to do it.  He is maturing rapidly in his features and his new job is maturing him towards adult hood.  It's funny how he takes pride in being accountable to his boss and strives to do his best... of course the paycheck is a bonus too!!  I know that I have done a good job raising him - we trust him and know that he has made so many decisions lately that  show he can be.  Today he made a great purchase - the stretcher earrings that he has had his eye on... he struck a deal with the vendor and walked away with a $10 savings!!  He is confident and carries himself well, something I wish I had when I was his age.  He will be 16 at the end of the month.  We have promised to send him next semester to driving lessons.... cannot afford it right now, so we will wait until I go back to work.

Max has read yesterday's blog... of course, he didn't realize that so much was going on with me and he has become very attentive.  I have stopped wearing make-up for now and my hat around the house but I am not brave enough yet to actually traipse around the yard without one.  I look like a little old man with my gray hair (apparently the natural tint will eventually show) which is still sparse in the front but longer and fluffier in the back and sides wearing my straw hat and ambling through the garden with a seat and some tools.  I can barely bend down so I end up sitting on my bottom and shuffling along.  My arms do not quite have the strength back but I have been assured that it should in time....

April 17th 2010

After this incredible month of warmer climates, I have to make my way out of doors to retrieve my plant pots before the ice pellets damage them... it is 6 degrees above but feels like -2....brrrrrrr.  My neighbor and I head out to a pool store to pick up some parts and chemicals - the store is empty of customers but the next one we get out to - a patio store is busier.  We are anxious for a better summer season than what we had last year.

This morning I attempted to weed the front lawn with my fiskars... makes it easier to pull without bending but the task has worn me out and i am leaving piles of weeds laying about for Max to collect.  He comes out to check on me and the tears roll down my cheeks... I am tired and feeling sorry for myself... it has been a really crappy week and the weather and my fatigue have just added to the frustration.  It will get better and in time this will be just a thing of the past.  I will start at the gym on Monday and dedicate a half hour each day to walking or working out - I have been told to just stick with the cross-trainer for now and build up to other equipment when I am not so tired.  My hands and feet still aren't right and walking or standing too long (only a few minutes) causes pain in the joints of my knees and hip joints.  My wrists and hands are sore and feel numb at the tips but I work at these everyday... the swelling in the extremities is still there - not only do I look like I am old with the gray hair but I feel it too.  I get to see my doctor on  Tuesday and hopefully she will have more information.

.... falling out

I was warned that this might happen and really in most cases it is to be expected.... the fall out - the moment you realize that your emotions have finally caught up with your reality and you feel like you are just lost. That moment culminated from many different incidents over the years and a number of ones over the past few weeks beginning with the emails calling for a replacement tech for me and then the handing over of office keys and cell phone when they found one.....

No, I am not OK.... there, I said it. I will be though, I just need some time to sort it all out... you see, I am done all my treatments but am still not well enough to make it through the day without being in pain or feeling exhausted and not being able to sleep has worn me down. I am caught somewhere in the middle with no direction right now - being an A personality, this makes things more difficult...... missing the routine and the interactions with others face to face. Yesterday was difficult emotionally prompted by a few incidents over the past few weeks that left me feeling isolated and battered. Max is too busy these days and is not interested in listening without trying to fix the problem or offer advice on the few tidbits he does absorb in between supper and marking school projects.... he thinks that I am all better and now life can return to normal. It is frustrating trying to get his attention for any more than a few minutes and I give up and go to bed.... I have been crying most of the afternoon but the make-up hides most of that. I am feeling isolated. I am doing such a good job of putting on my make-up that most people have assumed that I am good to go. I am strong and resilient... just not this week and maybe not for the next few weeks. I will sort it all out though, of this I am sure, I always do.

The rawness of my emotions unsettles me some days... one day I am busy with appointments and the next I am handed a form letter outlining the 'if you notice any of the following symptoms, please contact your care provider' but with no further instructions on how to cope when the door is closed and the other one hasn't opened yet? I am not ready for counseling because part of me won't accept that I need it and the other part knows that it will sort itself out with time and experience. I have not had to go through a period of time where I had no goal other than getting up and enjoying a cup of coffee on the back porch - there's a voice in the back of my head that reminds me to look at the clock and get ready for something? what? I go to yoga and art therapy and the people at Wellspring look at me with knowing glances and add that they understand and offer up that not many, other than people going through this cancer journey do. Even those with relatives or loved ones understand that something is lost to those that survive and to them whose spouse or loved one did not. Life takes on a different dimension and the pettiness of the past few days, although irritating, pale in comparison to what I have already experienced. The anger comes with knowing that I have been kicked when I am already down. This is just part of a journey that has almost come full circle and I have to remember to be patient, kind and understanding with myself. I will take the best of what history has taught me in my life and move forward in my 'new' life with greater awareness of what is important and what is not. Some aspects of my life are worn out and like a favorite sweater, need to be carefully and lovingly disposed of to make room for something better.

I put my HeartWish out there again and hope that it comes to fruition... knowing what you want makes it easier to recognize it when it comes. Life is simple, it's us that complicates it.

I met a lovely lady named Brenda at the Dentist office while reading the news article about Megan who has become a friend of mine through our shared breast cancer journeys and whose paths we crossed while doing chemo. Megan's picture shows her beaming face sporting the fuzzy head so much like my own. She finished chemo the day after me. I love her so much!! Brenda leans over to me and asks what cancer I have and I let her know it is breast cancer.... she proudly states that she is 3 years cancer free from Leukemia and shows me her thick luxurious pony tail.... you know it will all grow back and maybe better too, she says. Brenda tells me that she has had no one to speak of that has travelled with her through her journey for the exception of one lady that she met and who later died.... she wells up and the tears spill down her cheeks while I go in search of the kleenex box for both of us. Her journey was so isolated with a month of chemo in the hospital when she was unable to hold her children because her immune system was off-line and then later to go through a year of healing without much interaction from anyone in the same journey. We have swapped emails and I have told her to keep in touch and let me know how you are doing...... I know some of what she feels but consider myself very fortunate for the family and friends that I do have.

Thank you to the kind and loving friends who braved the storm with me and stuck it out, even when it wasn't easy, and stood behind me anyway!! I am truly blessed and hope that one day, I can be there for them. You know who you are and I love you all so much. Always, Marita xoxo

..... Easter Weekend

The spring is finally here!! My journey has now taken me almost full circle and through 4 seasons. There are permanent scars marking the journey's beginning but it is the ones that lie invisible beneath the surface that know my life will never be the same.....

...... I had a busy life that became derailed the day of my diagnosis. As candid as I have been in my blogs, I did spent an inordinate amount of time convincing myself that little had changed in my world and that I was the same woman that I had always been..... but when I look in the mirror - the reality of two surgeries, months of inactivity due to a cold winter and physical pain, a head now sporting new hair that is gray and the realization that I am now into menopause..... I am clearly not the same woman. I will never be the same...... I will be better!!!

I have a number of childhood friends that I will be seeing soon as my high school reunion is coming up in a little over a month's time. One of the girls, Sandy, has written a number of times to me and said how I used to advocate for others when she knew me way back when... the other day she wrote again and told me how proud she was of me and my bid to save the nurses. I guess some things never change. Thank you Sandy for your really lovely note. Another high school friend has offered to drive me out to Ottawa for the event... he knows how tired I am these days because his wife went through a similar journey 10 years ago - he laughs that we will have a lot of time to play catch-up on the way there. Debbie has invited me to stay with her the whole weekend that I am visiting.. we were friends more than 30 years ago and we lost touch but found each other again. She has stayed with me here in London and it was like we hadn't missed a beat. Just being around her is great.... where did all the time go? I will be seeing so many people whom I will likely have to be discrete about reading name tags or searching for familiar features. I was always considered a bit weird when I was younger... Ok still that way but most people would say unique but in a good way. My guidance councillor said that I was independent and spoke my mind - when you are 16, that is not always the best approach... I have since learned some diplomacy?

April 6th 2010

My brother came to visit us for Easter and as usual brought gifts for the kids and for us... he has just lost his job but is always thinking of us and I can't convince him to not spoil each of us when he comes down. I am feeling horribly guilty but know I cannot afford to help him out without straining our already tight finances. Three kids and they all need new shoes and clothes. Chris and I had time to talk and we chatted for hours about our childhood and the crazy things that happened to us that made us who we are today, but made us outsiders as children growing up. He has never married and at 51, he will likely never make that step and is beyond wanting children. He considers himself the one who although short changed on intelligence and abilities, is still a pretty happy guy. I know he got totally ripped off right from the start and spent his entire childhood avoiding the relentless bullying he received both at school and at home..... my dad never understood why his adopted son couldn't seem to stand up for himself and why he preferred to just walk away or take it rather than hurt anyone else. Me, I was far spunkier and had no qualms about hitting one of the fellows who bullied him with a baseball bat to the shins - I was 6 years old and they had my big brother (5 years older) pinned by a bunch of fellows while one threw a penknife at his legs. I remember almost outrunning the bully until we got to my front lawn and I yelled at the top of my lungs - my mother who is nearly 6 feet tall, a good german build appeared at the door wielding a rolling pin.... he would never know that we had interrupted a pie dough rolling moment and he didn't stop to find out either!!! I always felt bad for my brother and didn't know him that well as he would spend his teen years in foster care and half-way homes.... he would never live at home again. Even though he was treated badly, he would never strike back and to this day, my brother really is someone who might have an IQ that some would say is below average and the testers would confirm it, but he will always be one of my heros. He could have turned out to be mean and vengeful but his nature just wouldn't allow for it. I love you so much and I miss you more. He just got his first computer and calls me to help him.... he is excited that he is in the now generation!! Secretly, I know he enjoys the interaction... I just tell him to play and read his books and learn all you can. By all accounts, he is still just a big kid with a huge heart... Andre the Giant was his idol. My idols were people like Rosa Parks who stood her ground against incredible odds and lived to be a ripe old age to witness the results of her actions in a positive way and of course anyone who could advocate for someone unable to do so for themselves. When I was 16, I worked with high needs children who were either institutionalized or kept at home because their disabilities did not allow them to attend schools and by age 18, I was a security supervisor at a large Ottawa hospital and spent a fair bit of time working in the psychiatric ward sitting on suicide watch... lots of great stories came out of that year and I was honored to be invited as a special guest to their monthly dinner and despite the ribbing I received from my colleagues, they figured it was pretty cool. My father often was quite perplexed that I did not pursue a career in social work and asks me every chance he gets..... but these days he doesn't remember much of anything and as his dementia worsens, he will forget all about me and the great stories we shared about the career I chose - I am (as my family jokes), my father's son - I followed in his shoes partly because I wanted to and mostly due to circumstance.... it is a field I loved from the beginning and one that has brought me incredible pride.

Miss Lydia decided that she should get her hair cut a little shorter so off we went to the hairdresser where Christie braided two 8 inch pony tails and promptly cut them off so that we could donate the hair. She is now sporting a lovely shoulder length cut. I am so proud of my children.

Tomorrow I will be attending a media gathering - MPP Andrea Horwath is in town and I will be there to once again address the media about the heath care dollars and our front-line nursing staff.... my kids are proud of me and I am honored that they realize how important this is to them, to us, to everyone. One day, maybe my children will help to make positive changes in their children's lives.

April 7th 2010

I am hobbling after getting upright in bed.... my feet are killing me and each step brings pain. In a few hours it will sort itself out and I will be more comfortable until I sit too long. I drive over to the McDonald's on Wellington road for breakfast and to leave my car parked in the adjacent lot while I make my way over to Fairview and Baseline for the media event. I am hobbling down the road and can feel the warm air mixed with moist air as the clouds above thicken into a darkening mass. I am praying that the rain holds off as do all the attendees as they begin to arrive a few minutes after I have found a somewhat comfy perch on the parking blocks running along the first of many hospital parking lots. A young man shows up with a portable dais and some sound equipment but never hooks the equipment up as there is no crowd forming to witness the event. /A\ reporter Darryl Newcomb shows up with his equipment and quickly sets up - he is covering a london maternity leave but I know him from the many trips I have made to Windsor as a cover-off tech. Next, a london Free Press reported arrives with still camera in tow and takes a number of pictures .... I get to see the one posted with his story that shows me sporting a wrinkled brow and a mouth that is forming the letter O - yikes!!! Ryan Robinson from Rogers Television is starting to set up while Jill, Linda Stratton, Andrea Horwath and Irene Mathyssen soon arrive and then, we are down to business..... so is the storm that has now produced thunder, lightening and the obligatory opening of the heavens. We arrange to meet at the ONA office just down the street and most of us arrive at the destination completely soaked!! The interviews continue and I am quoted later by Bob Smith as saying :

"The gold stars stop at kindergarten"

Marita DeVries, April 7, 2010, re: Hospital CEO's being paid based on performance

I leave to go to my car which requires I cross a major intersection, bearing in mind that we have just had a major deluge, I experience first-hand a bus driver passing in front of me and a tidal wave soaking the rest of me what I had managed to stay dry... not to mention the refreshing drink as I opened my mouth in surprise!!! You have to laugh though and I did when I realized that just like the invisible item that trips you on the sidewalk, I had to scan my surroundings and noted that a few caught the action!!

And so, I begin to close the cancer chapter as I begin a new one with a daily challenge of not just getting better but trying to better our health system. I have become an advocate for those that feel they have no voice and an activist for those who do. My neighbors have all let me know how proud they are of the work I and my colleagues are doing and say its about time that someone stood up for what was right. We all need to stand up for what is right - it makes us stronger and builds a better society....

I am grateful for all the wonderful people who have come into my life and shared with me their incredible stories and offered help when I was at my lowest. I wish to thank the supper club for their wonderful meals when I was unable to help my family. My friends who were there despite my 'not so great days' who sat and listened to me sometimes carry on.... yes, I talk a lot... still and although that has always been a sore spot with me (and others).... it is part of who I am and if that is the worst attribute I have... I will take it!! Thanks to Mandi for being a really and truly wonderful friend who wears her heart on her sleeve. I want to thank Keri for always knowing what to say and for being a tremendous support who has guided through some rough waters. Thanks to Sue, whose support, kindness and tremendous sense of humor and fun really took the edge off the first tenuous months following my diagnosis. Thanks to Tracy and her daughter Emily who have such kind and loving hearts and thank you for teaching my daughter that there are some really special people out there. To my children who took our lead and shared with us their honest feelings and became compassionate towards others in their recognition for the journeys that all of us have. To my husband, who used to be a quiet man..... who has stood by my side regardless of how the journey challenged him and to his incredible patience.... a true partner and best friend. I am grateful for all the new friends I have made and who inspire me with their humor, candidness and affection. To Wellspring who has given me inspiration in my artwork and with people whom I share my deepest thoughts and who share right back. I have been truly given a gift, an opportunity to see beyond the daily grind and to put out a new HeartWish... a wish the heart makes when it knows what it wants.

I will continue to blog my adventures because I can!! For now, I wish each of you the very best that life has to offer...... make your own HeartWish. xoxoxoxoxoxo Always, Marita

.... going to Queen's Park

.... this journey has taken me to places I never imagined both emotionally and physically - I just never thought in my wildest dreams it would take me to Queen's Park in the role of activist ....

Sunday 21st March

Today I will find myself heading out to the Lamplighter Inn on Wellington Road in the afternoon for a rally sponsored by ONA (ontario nursing association) in response to the firing of the front-line nurses. I meet up with Megan and Janice outside the Renaissance room accompanied by my wonderful husband. This is a letter writing petition signing event open to the public with our most honorable Mpp's invited to speak. Deb Matthews does not show up and we are clearly disappointed by her absence..... I am not surprised, but still disappointed. It really amounts to no accountability at all when you ignore the people you were elected to represent. The stories are amazing and heartening from nurses, a Dr. Sexton and patients. There are those that have produced petitions that have been signed in their areas and there are form letters signed by attendees and labelled for the various MPP's. Chris Bentley and Khalil Ramal are present and give their responses to the gathering as most expected - we will look into this...... and we will wait.

Tuesday 23rd March

I present the Wellspring staff with the barbie I have made a headscarf for and gown which will be auctioned off for one of their fund raisers. They are ecstatic and with the help of Wanda, our facilitator, she paints shoes on the Barbie and we attached mini jewels :) It is the least I can do for everything that they have been doing for us.

My legs, knees and hips still hurt and walking is an effort. I am out of breath most days if I am moving too fast. The swelling is ridiculous.... I have had to put my edema sleeve on this week and pray this too goes down. My underarm hurts when I raise my arm and the water in the shower felt like it was burning the skin that had been radiated. Funny how it is only slightly pinker than the skin around it. I must be careful.

I spoke on the phone with Andrea Horwath's office yesterday afternoon and indicated to them that I would go to Queen's Park in order to get our issues heard about heath care cuts if that's what it would take to be heard and was surprised and excited to find an email inviting me out to Queen's Park for Wednesday while she brought up the subject in the legislature. I was about to go on an adventure but had no clue as to how I would get there and if anyone would want to join me. When I called around, Diane offered to accompany me and I was simply thrilled!!

Our train trip began in the evening and we managed to arrive in Toronto around 10:15 p.m tired but Ok. After a nightcap at the bar downstairs, we headed up to our shared quarters. The tall buildings and the lights brought back memories of a time when I worked for the CBC in Toronto in the early 90's after my 4th semester in the Technology program at Fanshawe. I am not sleeping well these days, but then who does when their legs pain them so much and the hot flashes come and go. Diane is intelligent and her baby blue eyes sparkle with glee as we are getting ready to head downstairs to breakfast after getting ready. She smiles when she sees me without my headscarf on and lets me know that her hair actually looks better than mine. Grinning, we both leave for breakfast after making arrangements to meet with Jill and her daughter Megan.

It is time to head out to Queen's Park and we are within walking distance from our hotel. I do not want to take a cab and insist on stretching the legs which will take three blocks to work the stiffness out of the calves and knees - I have given up on the hips. It is the most spectacular day with not a cloud in the sky and a slight breeze as we try to figure out the best way to get to the front walk of Queen's Park which hosts an odd inverted Y sidewalk with both ends terminating at the curbs but with no crosswalk. We find this a very unfriendly and unwelcome layout to a public building. Besides the safety factor of having to negotiate across three lanes of traffic without the assistance of traffic lights, there are the fancy sports cars kicking it up on the clear and bright morning. The tulips and daffodils planted in the beds on either side of the walkway are sending up their green spikes to catch the warm spring rays and the grass is showing some green as we gather at a bench waiting for others to meet with us. Introductions are made and the names escape me as we stand on the steps and have our pictures taken for posterity. My spirits are up and hopeful that this lovely beginning is an omen of good fortune. We make our way in and up to security for our passes which are printed out. We are not allowed to take any items with us so Jesse meets us and collects our coats and our purses to be locked up while we are guests in the building. We are to be in the gallery on the lower floor but these are all taken up and we can hear the legislature starting the session after about 5 minutes of tolling bells. It starts at 10:30 but the time slips by as we all have to make our way to the basement to receive new passes for the general public gallery. It is set up with the steepest stairs and the head begins to swim as the ache in my knees suggest the descent is greater than comfort will allow. I am about to witness for the first time a seat overlooking the Liberal caucus and right dead ahead of me is Deb Matthews. There was a moment when she looked up after Andrea Howarth began her question and passed her hand upward when mentioning my name and our eyes locked. At that distance, you are aware of each other but expressions are hard to read. The behaviors of the MPP's during the question period is unreal - fully grown, apparently well healed and educated people behaving like insolent children... some were clearly turning their backs to the opposition member speaking and others heckled and became so noisy that Mr. Speaker had to silence them a number of times. I am assured that this is normal and that it can get worse and usually does. Well, there are the ones who are leafing randomly through paperwork, talking on their bluetooth and leaving midway through this performance to go out or to the other side of the room. Young pages run around delivering ice water on silver trays and paper notes from one member to another or from regions unknown....... enough to just really piss you off!!!! To think, this takes place every morning from 10:30 to 11:30 and afternoon four days a weeks as they have their constituency offices located all over Ontario. As one member put it 'no wonder this is question period, no one ever gives an answer'. After all this ruckus in the caucus, they depart only to take part in a media scrum.... what could they possibly say after paying such rapt attention to the matters at hand??

I am waiting at the top of the stairs behind Andrea as she answers media question about the healthcare issues she has brought up. Her interviewer begins to move away and then returns quickly when I wave at Paul Bliss from CP24 - he used to work at my work and he doesn't recognize me but starts the interview which went well until he asked me what the nurses meant to me in my journey.... then the tears started. Diane and Jill took each one of my arms and steadied me when I swayed. Then the media all came over and question after question, I finally got to leave when Diane and Andrea walked me down the stairs. I apologized for crying - embarrassed for the emotions that took on a life of their own. I was met downstairs by a photographer for a local Toronto paper who wanted to take pictures outside which we did and then a call from Julie at /A\ Toronto to meet in front of the building for yet another interview. Andrea and her staff wished us well and thanked us for our participation as we headed out the door to wait in the spring air for Julie to come and do her story. Julie and camera man Simon showed up - really terrific duo whose kindness was evident in the way they spoke to us. Tired and needing to walk out the stiffness, Julie, Laurence (not sure exactly his position) and myself made our way out to lunch to meet up with Diane. One more interview request as we made our way back to the hotel. Andrea Piunno met up with us just outside our hotel for CP24. Nice gal, used to work with /A\ at one time. Diane, Jill and I head out to the train station in a cab... I have run out of energy and am feeling the fatigue pulling at every muscle.

The train ride back was wonderful... time to wind down and relax and a chance to get to know each other. I am inspired and feel a connection to this charismatic and down to earth gal. I look forward to future meetings....... we laugh and chat. This journey has brought me many wonderful moments and this is definitely one of the best.

I had taken the time on the way to the hotel earlier to purchase t-shirts for the kids and a hand-written Toronto post card telling them of my visit. Each one was as different as my children and written with love. They were thrilled with the small tokens. Max got a shot glass.... he's not a spoon collector kind of guy.

Thursday 24th March

Fielding phone calls and emails today.... interviewed by AM980, Cp24 and Rogers. Today is the budget day and was not surprised by the typical platform of look how great we are and here are the things that are more important to us.... and not necessarily reflect that of the people. Healthcare received an increase of 1.5% which is no raging hell but it is still better than the anticipated and feared 0%. Now let's see what they do about the layoff notices and hope to see them revoked in favor of the administration taking a pay cut/freeze in following the nurses pay freeze. Accountability and responsibility is what needs to happen here.

I am exhausted and my legs are impossibly swollen. My nurse has come and checked me out and has indicated that I need to keep my feet up.... no worries, got that one covered as I am fielding phones while at home today.

I went out to meet William's welding teacher later this afternoon and was impressed with William's abilities to MIG weld. Great job! His instructor commends him on his work ethic and personality but like me, does not like his lateness... after all, he now has a part time job at a local pizza place. He indicates to me that he is proud of my activism and offered his help anytime I need it. I am getting that quite a bit today and am proud of the people who are helping out.

With that, it is time for bed. Night night....

I am finally getting some much needed sleep and though my bones ache in my legs and the muscles burn when I stretch them, I am still low energy but trying every day to walk - after all, the weight will just continue to go on me without getting up and going. I tried to get some work done this weekend but the fatigue still pulls at me.... one day at a time.

...... radiation trials

..... this week started on Monday and for the next five days, it kinda felt like groundhog day - the movie about a guy who gets up every morning only to live the same day until he finally figures it out and makes all the right choices to finally be able to start a different day..... tomorrow, I will start a different day....

My last day of radiation started like the other four days except the car in my driveway was not Eileen but Sue delivering a wonderful envelope containing a homemade card that i was instructed not to open until after. After waving to her as she pulled away and lots of blowing kisses as she drove off, I smiled - today is the last day of treatment.... it seemed so far away and now it was here. A little better than three seasons of my life filled with so many emotions and so many really truly great moments and some phenomenal people, a list with so many names and some that I do not even know. I head up to the chemo unit to get ice water to fill my bottle and see my chemo nurse - I thank her for everything and she quietly thanks me for helping the nurses. We hug and smile at each other - her smiles and reassurance when I needed it most meant the world to me and made the treatments easier.

I will be seeing the doctor every few weeks as part of the trials that I am on and then every three months. The late summer will have me in for a number of tests including an MRI imaging to ensure the baseline created by all the images provided will be compared to all future images. I will be in the process for years to come but for now, I will take each day as it comes to heal the body, mind and spirit from a journey that has challenged, threatened and altered the course of mine and my family's life forever. It has reminded me of things long forgotten and of dreams yet to come.

I am sore in the legs and hips and walking can be challenging like today (March 17th) following behind my active and independent daughter as she peels down the sidewalk on her bike. I am lumbering and swaying back and forth when my son joins us later in the afternoon. He pulls in beside me and asks how I am doing. I assure him that it looks worse than it feels.... he doesn't buy it as he moves off to catch up with his sister. They have grown so fast these past months, we all have grown together and I am grateful for all the wonderful moments that this journey has brought me... there always is a silver lining in every cloud. I bask in the afternoon sun later in the afternoon and listen to the songs of the birds in the tree - this March break has been the best I can ever remember with temperatures in the teens. The fish in the pond have survived the long winter except the one that the heron got last fall..... they too are basking in the sun pulling the energy and warmth into the bodies that have been cold all winter. The buds are forming and the crocuses are out. My winter with my illness is over and the spring unfolds and signifies beginnings of things yet to come. William has gotten his first real job at a local pizza joint and we all couldn't be happier!! I am interviewed on the phone by Kelly who is doing an interview about FACEIT and by the doctor I owe everything to. I am so grateful.

I will continue to blog when the moment strikes but for now, I will heal and prepare myself to return back to the life I led but with a difference......

..... another lump

...... the pain in my breast shooting across the top of the breast a number of times Saturday night caught my attention..... the lump I found Sunday night brought back some stark memories of a time 10 months ago when I first began my cancer journey and now the lump I am feeling under numb breast tissue is smaller but there is no missing its presence just under the skin in the same location as its predecessor.

I let Max know and promise that I will call my doctor in the morning after the committee meeting I have called for elections at work. I once again become the president of the crew, visit with a few people in the building and make my way home. The phone is ringing when I get through the front door and it is Vel asking if I can make it in to see the doctor after lunch.

Dr. Annette is hopeful that it is just scar tissue but quickly realizes as I have that that is simply not the case. The spot as far as I can tell is sensitive... my flesh is still numb from the previous two surgeries due to nerve damage but there is a definite round shape to the lump which is easily felt through the skin above the scars. She is on the phone within minutes making arrangements to get a mammography and a biopsy done. She also takes the time to contact my Radiation Oncologist who indicates that he will immediately suspend the radiation appointments that were made for me starting next Monday until such time as we can determine what the lump is. If it is a cyst then it will be drained by the doctor at the breast clinic and if not he wants it surgically removed before any radiation can take place.

She is off the phone and our eyes connect...... I am trying to gather my thoughts but deep down I have a feeling that we are not looking at a cyst - another surgery will make it three and I know what she is going to ask me. I have already had this discussion with Max a few times and again on Sunday - this is a no brainer I tell her - it will simply have to be removed. I will likely be told that I should consider mastectomy by my surgeon and I would have to concur. Annette wants to know if there is anything else she can do for me.... no, I answer, I am good. That has been my standard answer through this whole journey but the sinking in my stomach doesn't feel good and I can feel the tears begging to well up. I leave with a thanks and she gives me a hug and makes me promise to call her to confirm whether it is a cyst or not. She heads off to her next patient as her assistant looks at me and smiles weakly as she wishes me the best tomorrow.

I call Max when I get to the car and the tears have stopped begging and are now coursing down my cheeks as I let him know that I have the biopsy booked. I don't feel much like talking as I sign off and toss the phone in the passenger seat.... whoa, deja vous. I manage to get home and call Kaz to let her know that I have to cancel picking her up for Art but that I will make arrangements for her to meet one of the other girls.... it is hard to not cry and she doesn't know what to say. Funny how we both have breast cancer and neither of us knows the right words to say when someone is crying!! I manage to email Bev to let her know that it is Kaz's first day in Art and can she look out for her.....

....and minutes later Max arrives. The tears start up again and we have a little time to just sit on the couch and talk about what is next before the kids get home.... what is next?? We don't know but we are both scared at the prospect of yet another positive biopsy result. I mentioned we should finish my will .... Max was not as amused.... We have decided not to tell the kids anything until we have all the facts.

Tuesday 2 march 2009

I am heading off to get a biopsy at St. Joseph's hospital and knowing what the procedure entails, I have less anxiety but leaving my keys on the seat of the car and having to go back to get tells me otherwise. Max is doing OK but you could tell he is nervous as he grabs my hand to walk to the hospital from where we have parked a few blocks away. The sun is warm on our face and although my legs hurt like hell from swelling, I am glad to be outside!!

The waiting area inside the mammography/ultrasound area is soooo packed and I realize that I am being stared at.... I am the only woman in the place with a head scarf on and the lady beside me quietly asks if I have cancer. Yes, I tell her, breast cancer. She is scared and her nervous twitching is obvious. She is a smoker and I notice the open wounds on her arms..... she is leaving herself open to constant infection by the look of the scars on her arms and hands. She has a shadow on her breast according to the mammography and is really scared - I look at her and smile 'no matter what you are told, you will deal with it', I tell her.

I am fortunate that I am not waiting too long before I go into mammography with a small wait until I get into ultrasound. Yes I will have a biopsy and the doctor comes in with a smile accompanied by an intern. They are both admiring my tattoos and the doctor tells me that in her culture, the Koi fish mean good luck... what do they mean to me? I tell her that is some cultures, the Koi fish will eventually evolve into the dragon which is revered - I am born in the year of the dragon and she tells me with a grin that she is too. The biopsy goes smoothly as she freezes the breast before making a tiny slit with the scalpel in order to insert the larger gauge needle to capture samples. She takes four samples and lets me know that she is sure it is benign but will get path to confirm. Enjoy your day she says as she steps out. Martha is the ultrasound tech - same one as last year when I had my first biopsy. I thank her for being incredible and sweet and give her a hug before I head out.

I feel a sense of relief and promise myself not to worry until I have to.... easier sometimes said than done...

Thursday 4th March 2010

I get the call mid-morning and the doctor was right - it is benign. Now to start radiation on Monday and try to enjoy the rest of the week.

My legs are swollen more specifically my left leg and the muscles in my thigh and my butt!!! I am still getting dizzy just trying to sit up from lying down and I spend the first 5 minutes of my morning trying to sit up but do not always succeed and end up falling over. Walking is still challenging and painful but it is getting better. The sunshine is really helping with my outlook... it has been a long winter.

Monday 8th March 2010

Radiation Day!! I am on a randomized trial and was picked to do the short version. The short version means that I go twice per day for 5 days instead of 25 days once per day. I report in to radiation reception and get handed a pager and tuck it into the front pocket of my jeans as I head over to get a coffee for Eileen and myself. She has volunteered to drive me back and forth for the next week in a scheduled filled in between with doctor's appointments.

The radiation technologist is waiting for me just inside of the entrance doors to radiation with a blue binder in hand and smiles as I wave to him. I put my still hot and nearly untouched coffee under Eileen's seat as I follow him down a hallway into a waiting room where he points out some change rooms and lockers. He indicates that I should seat myself after changing and he will return to get me. It is only a few minutes before he returns and leads me around the corner to a winding hallway which opens up into a large room with a machine located in the center of it - 2100i ( 2100 IX Varian) the machine and i is the room number. A rig similar to the one used in the tattoo procedure is on the moveable bed and I am asked to lay down and lift up my legs while they put a cushion under them. My arm is then placed up and away from my side in a cantered 45 degree angle after removing it from the gown I have changed into... I still have my jeans and socks on. Next the two technologists move me slightly one way or the other until the laser beams cross over on the tattoos that they have now marked up with sharpies. The crosshairs they have drawn and measured must match up with the beams from stationary units screwed to the walls and ceiling of the room. Next, they have charts contained in my binder that need to match the coordinates on the computer screen with those on the machine. They need to take images with this machine prior to the treatment - a total of three are taken as they adjust in between each one. This will be an accurate record of any changes in the breast from one treatment to the next over each of the treatments I will receive on this trial. The bed moves as well as the imager and the unit that provides the radiation. The radiation unit is a circular metal disk about 2 feet across that can be rotated while the arm it is attached to can pivot from one side of the bed to the other. It has a window which when you look inside has a rectangular slot with metal bars that move apart or together to produce the exact window required for the radiation beam to travel through. This allows the exact contour to be followed on the body part for more accurate radiation treatment. Once the technologist is happy that everything is lined up they leave the room, hit a paddle on the wall and will return when the image or radiation treatment at that coordinate is complete, only to return and readjust and check for the next treatment. This procedure will take almost 1/2 hour with each visit - I will remain still for the entire time... the measurements are accurate to the millimeter.

The clinician comes to see me - Daniella - she needs to take photos of my breasts and then I am to fill out paperwork about how I feel about the appearance of the one that was operated on. Well, it is hard to say how you feel when you become accustomed to a disfigured breast with multiple scars and dents?? How do you subjectively evaluate that? Well, it scored a poor after a little discussion.... hard to think that the identical twins that they used to be are now not even remotely related. I do not dwell on it for long and its back to making light of my journey....

I return again later in the afternoon and meet the late afternoon crew. I feel tired and grateful that Eileen is driving.... it wouldn't help if I did.

Tuesday 10 March

Starting to resemble the day before.....

Wednesday 11 March

Lydia wakes up with a wicked temperature and I ask Max to stay home with her and to make an appointment with the Pediatrician when Eileen comes to pick me up at 8 a.m. It turns out that she has a throat and ear infection.... kids are funny - had her in last week for needles and asked the doctor to check her throat and ears - I think she is coming down with something I told him. Mom's know these things before they happen!!

I am feeling tired, really tired today.... dragging butt kinda tired but so happy that I am on a trial. I have to see my medical oncologist after my afternoon appointment with radiation. I meet with him in a cubicle just off of the waiting room and we go over some information on creams - oh well, I am allergic to some of the ingredients and will have to just use aloe if the burns begin to blister. I am slightly pink today but nothing serious.... it is my underarm that is normally numb but today it is sore. I mention to the doctor that I am still really dizzy and have a hard time getting up and of course the leg swelling. He indicates that if it continues they will have to take blood... the downside could be indicative of internal bleeding, low iron etc... I will be seeing a geneticist to see if I have any markers because of my age and in hopes that this is a fluke and that my daughter won't have to face this. From here on in, I will be tested regularly with mammography and MRI to track any changes from the initial baseline. I am unusual, he says and it is hard not to laugh and we both get in our digs before the nurse comes in to help set up appointments. I will see him again on Friday and two weeks from Friday to see if my skin has blistered... sigh.