Western education 2013

Tuesday, July 30, 2013

...... trying to keep positive.....

...... amongst some very tearful moments.  The head fog has rolled in with a vengeance after my 2nd chemo treatment yesterday.  I am not making sense with my brain re-starting conversations and writing down random words... I now have to re-read what I write.  I wished my sister a happy anniversary and then in the next sentence asked her where she wanted to celebrate her birthday (which incidentally is in February)???  She posted it as an event on FB and I thought she was hosting a party on the weekend she is planning on visiting us.  She would never do that.... My friend Anna is having such a hard time with the loss of Rich in an ATV accident on Thursday and now yesterday, my friend Sharm's wife passed after a long battle with cancer.  The fatigue and fog finally wore me down and the tears wouldn't stop falling... I started to sob and felt that if I didn't stop... it would take over.  Poor Max.... he tried so hard to console me and gently touched my back and just looked at me.  How difficult must this be for him to watch me fall apart and there is so little for him to do.  He is my rock.....

I feel so guilty about not being able to be there for my children in the truest sense that a Mom wants and needs to be.  I often hide away to work on curriculum or online courses to cope.  It is an avoidance technique that allows me to be busy and to push away the thoughts that threaten to quell any happiness.  Yesterday after chemo, I went home and signed up on a TNBC support site knowing that it was time to seek out answers and support from those women who have done that and been there.  It didn't take long for a few ladies to offer their kind support and some information about their own diagnosis.  Each member it seems has documented their entire journey on the bottom in the signature line.  So many woman have gone through what I have and some of them are incredibly young.  Triple negative diagnosis seems to have its own set of rules and there are limited resources for combating this rarer form of cancer.  Some have done genetic testing and information would dictate that their body does not have the ability to to fight off the genetic mutation when it presents itself.  It can be very aggressive or be a slow mover.

I have considered my mortality many times over the years since my first diagnosis.  I suppose I could have simply laid down and refused to get up but I didn't.  I chose to find a way to make my life count.  So began the political fight of my illness in February of 2010.  I went to Queens Park with the ONA (Ontario Nurses Association) just after my last radiation treatment to defend the nursing layoffs at the LRCP (London Regional Cancer Program) as a guest of Andrea Horvath.  She would also come to an event to address the layoffs on the hospital lawn. I spoke to the media, visited with politicians, showed up at the annual hospital meeting, and started a petition through FB.  I had a meeting with Brian Orr (then director of the LRCP) with Carol (who passed away in October last year), met with the LHIN's Chair Michael Barrett a number of times and eventually found that the Board of Directors held ALL the power.  I even spent a weekend in Toronto with a Breast Cancer Advocacy and took training in how to conduct myself during a visit to Queen's park at the annual event where you could make appointments and speak one on one with the MP's of your choice.  I spoke to Chris Bentley and Lauren Broton.  I liked Lauren.  I wrote to NDP Mr. Layton just weeks before his death and he personally wrote me back..... it would take months for Deb Matthews to respond to me.  Eventually we got 8 jobs saved!!!  I tried to combat the hiring of the two CEOs who made extra-ordinary wages... but I had already done enough and there were others to take up the cause.  That year, I was a guest on the ONA Gay Pride Float.  My cancer had given me a purpose and an opportunity to make something right.  The nurses all know me now at the LRCP and will always come over to say hi and to give hugs.  My friends from Middle School would also tell me how strong I was in my early years always trying to advocate for others and paying for it in some small personal way.

The year 2010 also brought me in touch with an amazing team of women breast cancer survivors after a chance meeting in the 'Braz for the Cause event'.  Rowbust brought me in touch with a number of amazing women but I had already been through enough and just wanted to have fun.  The coaches had other ideas about pushing the limits to get us in top notch physical condition and to compete in the International competitions.  The year 2011 had me competing in the Canada wide competition in Welland with the team and we took home gold.... only my family wasn't there to witness the event and I felt somehow that the 3 days a week commitment had taken valuable time from them.  Although they supported me whole-heartedly, I felt selfish and decided that the atmosphere was not in keeping with what I had expected a survivor team to be.  I tried to begin with the team the following season but after speaking with Max, who supported me either way, it was time to move on.  The Waves team was a great pick and I immediately felt connections with many of the team members and my new soul friend James.  We both sit in the engine room of the boat and paddle like we mean it in a friendly and loving way.  James is a dietician now with the cancer unit and I get to see him almost every visit!!!  Yesterday he came in when I was having my infusion and brought the basket of cookies which he shared with us and our new friends in the station across the aisle .  Yes I am still laughing and being a clown much to the chagrin of my nurse.  He is so amazing and I totally adore him.  He is sad that I will not be paddling this year in the boat but I have promised to lend him my new paddle for him to try out.  Maybe next year... I will put it on my bucket list.

While I may have lost my full-time job as an electronics engineer due to the constraints of my physical ability to do my job, I did not want to be on long-term disability and so, with the help of an amazing insurance lady, I got back to teaching at the local college with them offsetting my college income.  It gave me a new purpose and I began to ask my boss about the possibility of going back to school.  He thought it was a great idea and so I tried to apply in 2010 but was late by a week.  I tried again in September of 2011 and was accepted to Western Faculty of Education for the 2012 fall intake where I worked hard and achieved a Teaching Certificate with distinction.  I then took two additional courses in Special Education and Green Industries.  This while in the beginning of my new journey with cancer.

My bucket list is not long but it is long enough for whatever time my mortal life has for me..... Anna this morning reported getting up in the middle of the night to fix the TV but knew she had done it through her soul mate who left his earthly confines on Thursday.  Yes, she has her angel looking over her.  My daughter knows, through pre-arrangement that I will do something after I cross that will let her know that I have moved on. Hmmmm, while I know we talked about moving pictures and possibly her hair, I am sure I can come up with something more creative!!  I am planning for my future while living in the present and it is something we all forget to do when we set life goals..... sometimes we can only focus on the goal and forget to enjoy all the side trips and adventures along the way.  I have done a lot with my life and have a lot more to do.  I will accomplish what I can and promise myself to take time out to enjoy my life with my family. Carol would continue her advocacy right until the last minute of her life.... making notes in the fears that no one would take the responsibility of the cause she started.  I have learned sometimes if you take a step back and realize  that you are not the only one who others can depend on, it gives you permission to just say no to the many requests you get when others feel they have no voice and to hand the reins over to someone who is equally able to help.  I, like Carol never asked for help and her life taught me to let go and not try to be everything to everyone.

The sun is shining this morning and I am enjoying an early morning cup of Joe.... Max has just come downstairs and is puttering around the kitchen making noise.  My head aches from the chemo.... it causes my already stuffed sinuses to swell, my hearing to be super human and my fingers to feel like clubs on the keyboard.  Let's not talk about the skunks this summer and where that takes my olfactory system!! Today is an new day filled with new opportunities for laughter and fun.  It is also a day when a friend of ours will be popping in for a visit with a set of graphite golf clubs for Max... he doesn't know I have asked for help yesterday on FB and that Colleen and Richard are generously donating a set after Max broke his second golf club on Saturday.  My Max will be so excited, I can't wait.  xoxoxo

I dedicate this blog to all those souls who step out of their comfort zone to help others... their reward for their efforts isn't always acknowledged or even appreciated.  They are the catalysts for change. It takes strength and conviction to make a difference.  Do something nice for someone today and make a small difference in someone's life... remember, we are all on a journey and you never know what those kind words will do for someone's day.  I also dedicate this blog to Anna and Sharm, whose soul mates are now looking down on them.  They aren't far away... xoxoxoxo

...... So after I posted my blog.... Colleen and Rich strong gifted Max with a set of graphite golf clubs, auntie Debbie sent a lovely card with dinner gift cards and my friend Heather knew Sarah needed a baby seat for her upcoming baby!!!!  Well, when you think positive, the universe answers in so many wonderful ways. Blessings to each of you for your incredible kindness. Thank you to Eileen for keeping me posted on Anna!!  Sharm, a man who has lost his wife to cancer has been so kind and wonderfully supportive...truly one of the good guys whom I am sending hugs to.

Sunday, July 28, 2013

...... my hair hurts.....

..... and is falling out with little persuasion.  The scalp is feeling tender and it started yesterday morning on day 19 of round 1.  It is hard to believe how fast the time is going and tomorrow will be round 2.  It's really not the hair that hurts as much as it is the head itself.  Tom once explained it to me that the hair sits within a gelatinous substance that when introduced to chemo, hardens, causing the hair to be less flexible and eventually breaks off... that's the uncomfortable part. I will rub my head multiple times through the day to remove as much of the hair as possible before it begins to feel like pins and needles in the scalp.

Yesterday our neighbors, who moved to Scarborough, came for a visit.  At the best of times, it is hard when people stare at you but when it is mixed with an awkward pitying stare... it is hard not to notice.  I know it comes partly from shock and mostly from a deep concern.  Their kids didn't seem to notice and did not ask about my thinning and extremely short hair.  Its the adults who know why and who react with emotions that are written all over their faces.  I was tired and made my way up to my room for a nap.  I needed a nap and good thing I did because Will called me at 2 am to have me come and pick him up.... Mitch came with me.  My boys are so opposite in nature but they are the best of friends and I know they will miss each other when Will goes to the military next month.

Max has begun the arduous task of cleaning out the basement and the garage of unnecessary items as he begins to claim some space for his artistic endeavors.  On his workbench is a poster he made when I was going through my first journey... the face staring back at me has been gone for 4 years.... my beautiful blonde hair, wrinkle free 45 year old face has changed with time and with chemo.  The chemo has quite a few side effects: dry skin, obvious hair loss, numb fingers and toes and a loss of toned skin around the face....almost as if the collagen has been compromised and a bowel that struggles to run efficiently but fails miserably.

The insurance company called me in the afternoon to discuss the claim with my car.... so the damage is estimated at $10,226.74!!!  Yes, it is significant amount of damage considering I was: A - not in my car at the time of the occurrence and B - it was in a parking lot where I was parked up to an island curb.  'Starsky' needs to be evaluated for his driving ability.  While they have the best guy for the job on it, it will take 17 days to repair it.  Both rocker panels were bowed and will need to be replaced??!!  Yes. it would seem that the man just kept on the gas peddle after ramming my car into the car behind me.....  I consider how darn lucky I was considering I had decided not to check my phone messages sitting in the car and instead went to my appointment a few minutes early.

At 5:30 this morning, I completed the last project due for my final module evaluation after noticing that I had not handed it in..... and I had forgotten all about it.  It wasn't my best work but it was pretty good considering everything else this week!!  That makes two professional courses done and soon after graduating with my teacher's certification.... I like being busy!!

I am dedicating this blog edition to my friend Christine, whose father has suffered multiple strokes recently, which has taken some of his faculties and functions from him.  I knew Art to be a strong and resilient man and who became a rock to me when I was a very young soldier in my military days.  He was a medic and I was a patient who needed to be escorted through a few medical emergencies in my stay up in an isolated military radar installation.  He brought me to his home, introduced me to his wife, who passed a few years later and his young daughter who was around 12 at the time.  Art, thank you for being my rock at a time when I needed someone the most... you advocated for me in some of my most desperate hours in actually 3 medical emergencies.... a severe allergic reaction to an insect bite, my fall where I impaled my hand on two keys and a trip to NDMC for my back.... I am sending you love and best wishes for a recovery.  Miracles can happen.

Friday, July 26, 2013

..... a wonderful morning to visit......

....... after the crazy day yesterday.

Thanks to Mary for the lovely flowers and our early morning breakfast out on the back deck on a lovely sunny morning.  The breeze is refreshing after a horribly hot couple of weeks.  Its good to see her and I wished we had more time as I realized how quickly the time passed.  I have a date with the summer program at a local public school at 10:30 as a guest and when I look at the time, I realize that it is now 10:15.  I will be reading a few books to the 6-8 year olds and Sarah has assured her coordinator that the kids will be fine with me.  Sarah should know, there were many times when she sat with my own small children when I read them bedtime stories.

I brought Lydia with me and she read a story to the kids called the 'Grumpy Bear'.  I liked watching her confidence as she told the story.  A young fellow had begun removing books from my satchel and was asking me to read some more books.  I obliged his request and got the kids involved in the story.  They were fun!!  When I was done reading, a 4 year old girl from another group walked right up to me, shook my hand and said "Marita, you did a lovely job reading and thank you" and then proceeded to repeat this with Lydia.  I would not have believed it if I had not seen the pull ups she was wearing!!!  How wonderfully charming.  The kids were polite and not one of them asked me about my hair or lack of it.  They were more interested in hearing the animated storytelling and being able to be involved.

I spoke to Anna today and the tears fell as I tried to awkwardly tell her that I really did not know what to say to her.... what do you say to someone who loses the love of their life.... it won't be better, not by a long shot for a very long time.  I told her I loved her and that she was in our thoughts... at least I think she heard that through trembling lips and coursing tears.  Her new home has not brought her the things she hoped it would bring.... I am deeply sorry for your loss....

I am now completed two AQ courses and have done well despite the challenges the last two months have brought me.  I have learned so much from the interactions with others in both of these online courses and I am glad I decided to pursue them.  I have learned that when you follow your passions in life, it brings you so much joy.  Being afraid to move forward and sticking with what you know, robs you of the joy you would get had you been brave enough to pursue a true vocation.  Yes, bills have to be paid but life is too short to just think of it in terms of getting from point A to B with money to buy stuff you really don't need in order to live a life you don't enjoy.  Max is truly getting used to having his days off and finding things to do that he forgot he wanted to do.  He has fixed the pool cleaner (proud moment), cleaned out the garage, begun organizing his work area and friends are now asking him to create art for him.  I am done my courses and am now beginning to sew things we needs at home.  My course curriculum is almost done and we just need to produce the final projects.  I am submitting my completed notebook next week just after my chemo treatment on Monday.

Monday..... whoo boy... not looking forward to another treatment now that I am feeling almost normal again!!  My hair has not completely fallen out but it will eventually because of this lower dose chemo it will just take more time.  I am still very tired in the late afternoon and keep busy so that I do not have to nap.  The tips of my fingers feel weird along with the feet that now feel like wooden blocks.  Such is life and I am glad for it.

Thursday, July 25, 2013

...... drove my car for the first time in days.....

.... pulled into the parking lot this morning at the hospital for an appointment for blood work and to see the oncologist.  Blood work is necessary to check to see what the white cell count is.  The wait is often horrendous in the clinic and this morning was no exception.  I kept thinking that I should move my car to another spot but I was in a hurry and just pulled up to the island under the shade of a tree and entered the hospital.  I stepped up to Clinic 2 window and stated that I required a blood requisition.... this is common for them to forget to fill one out in advance.  I waited 40 minutes then approached the clinic receptionist again.  "Sorry about that!"  She scrambled to get the requisition filled out and handed it to me a few minutes later.  I headed off to the lab and waved to Heather who announced that she has started a little garden, thanks to me.  We laugh and I head off back to wait at the clinic.

My appointment time was supposed to be noon but it was now getting on to 12:45 when I was approached by security.  "Hello m'am, could you please step over here?"  I followed him to a quiet spot a few dozen feet away and I told him I was sure I didn't do anything wrong but I felt a slight panic begin to rise when he turned to look at me.  "Do you own a black Cruze?"  I told him I did but I wasn't sure how he knew that considering I had left my car parked 2 hours prior.  He informed me that my car had been in an accident and it wasn't good.  How does my car get into an accident when I am not even near it and then it dawned on me.... my car has been hit. I just started crying and followed the security guard out the sliding doors and into the bright sunshine.  My heart sank as I saw my car had not only been hit, but it had been pushed 15 feet and rested into the bumper of the car parked behind me.  The hood was wrinkled, the rocker panel on both sides near the rear wheels showed buckling.  I started crying all over again.  I called the insurance company and they opened a claim while we waited for the tow truck driver.  The car that hit me had pulled around and parked right back into the parking space he had originally parked in so we were able to get the information.  He apparently had reported the accident to the security guard and had offered all his information.

Through the parking lot, we could see a couple heading towards the black Chevy Impala that my car had eventually come to rest against.  The security guard went to speak to them while I was on the phone.  The woman came over to me and gently pulled my scarf over my head to protect it from the sun and gave me a hug.  "Oh hun, I feel so bad for you", she said.  She said that she didn't feel right about the spot they had parked in but her husband insisted he park there.  Funny how we both had that feeling.  Max arrived and gave me a hug.  I had called him first after seeing my car.  As long as you are OK, we can replace the car.  We would later bump into them in the parking lot at the reporting center.

So my wonderful day began to slide with a side trip to go to the reporting center and then the automotive repair shop.  I have a good insurance policy and I received a loaner car immediately upon arriving to Oakridge Ford.  My car is a Chevy but they specialize in auto-body repair and my insurance company deals exclusively with them.  Yes, I purchase the daily insurance..... knowing my luck.... So the loaner turns out to be the same make and model (Ford) as the car that hit mine.  Great.

Sarah comes over in the early evening to go to Fabric Land.  They have a 50% off sale and I need netting for our pool scoop... from the industrious squirrel that tore ours to shreds and some fabric for our Gazebo to cut down the light through the roof.  It blocks the UV rays but it still allows for the heat of the sun to come through.

We arrive back home and I receive a phone call.... the day has ended with the tragic loss of my friend's daughter's soul mate.  His last day of work ended with his life lost due to a tragic ATV accident.  The tears just wouldn't stop today. My heart just breaks for her loss and it is a clear reminder that our lives are so fragile and to not sweat the little stuff.  My car will get repaired or replaced..... she will never see him again.... I am sending out love and support to you Anna through this incredibly difficult time.

Tuesday, July 23, 2013

.... the emotional thermometer...

..... comes in the form of a very drunk son who has been keeping it all bottled up.  We got the call last night around midnight on Mitchel's cell phone.  His friend Dan was smart enough to call us and let us know that Mitchel was sick and very drunk"could you please come and get him?" We always told our children, if they ever needed us, no matter what, no questions asked... we would come and get them.  Max dressed and hurried off to pick him up.  My teen son weighs over 150 pounds and stands just over 6 feet and while they were able to get him in the van, it was an entirely different story when Max pulled into the driveway and Mitchel poured himself out of the van and onto the driveway.  I heard the garage door open but did not hear them enter so I made my way downstairs to find Max sitting quietly beside a prone Mitch.  Max knew there was no way to pick him up and wasn't sure how he was going to move him, so I called Will, who was having a late evening snack at a local eatery.  He paid his bill and hurried home.   Then the laughter started as the two of them pulled Mitch up the stairs and managed to drag him into bed. Mitch was apologizing the entire time as I wiped his face.  There were moments when I just wanted to ball my eyes out but I didn't.  I woke up many times through the night to go and check on him.  He is our emotional thermometer.  Drunk because of a misunderstanding with his lovely girlfriend Sarah.

Will and Max love Mitchel to pieces and although they are joking around, you know they are deeply concerned for him.  William will stay the night and spend his day off with Mitchel today while I get some work done and Max continues to putter around the garden finishing the honey-do list.  He is keeping very busy relocating plants, staking up tomato plants and fixing whatever needs to be fixed.

I am now downstairs typing while the living room lightens by the rising sun.  My legs hurt and a stabbing pain through the left side of my head has made me get up for the umpteenth time through the night.  I have a cough but it is due to a running sinus.... yup, allergies are hitting and my immune system doesn't quite know what to do.

I got a lot of work done yesterday and found that I forgot a few things.... that is why I am playing memory games and strategy games on my iPad... just to keep the brain working through the fog.  That, and the constant battle with the midline bulge caused by a digestive track that has gone off the rails.  Everything I eat, regardless of how small a portion is causing me to bloat and puts pressure on me, making it hard to breathe when that happens. I will have to eat much smaller meals throughout the day.

Yesterday evening, Max and I walked Lydia to her friend's house a few blocks away for a sleepover.  I decided not to wear head gear and became painfully aware of being stared at by other pedestrians passing by us. We nod and smile but I keep moving forward... I turn to Max and ask him if he minds that I have chosen not to wear my head gear outside.  He grips my hand tighter and says no but I know him and I know that it bothers him to see other people staring at me.  We pass by a three story walk-up and a heavy set woman is sitting outside in the warm early evening with a younger woman beside her.  She takes a drag of her cigarette and you can hear the rattle of her cough.  I think to myself why anyone would get to the point where they would continue to smoke when they could barely breathe?  She is eying me closely as we walk on and would continue to do so as we retrace our steps after dropping Lydia off. I can feel her eyes boring into me until we round the corner.... I often regret deeply of ever having smoked at all and am grateful that all of my lung checks over the past few months have been clear of any signs of those years. I have not had bronchitis or pneumonia in a decade or had to use a puffer.

I love our current technology.  I have watched two live streams through my iPad this week... The Botanical Gardens in Washington with their Corpse flower in bloom on Sunday and yesterday, the birth of Prince William and Kate's first born.  This morning I have the live stream up from the front of St. Mary's hospital of the Lindo Wing where it is anticipated that the royal couple will show off their baby boy born yesterday at 4:24 p.m (11:24 am our time).  It is interesting to note that the police are standing outside the hospital doors and the media is directly across the street but the street remains open to pedestrian and vehicular traffic.  You would not see that in North America.

My hair is now standing rigid on my head and is beginning to fall out.  I am sure that it will be a few more days before the hair completely snaps off at the scalp.  My eyes are itchy, sore and I wake up feeling like I have not slept in days.  The humidity of the past few weeks has gratefully waned from our city but it still remains quite warm necessitating the constant hum of the air conditioner.

I look up as I detect movement from my iPad... it is 8:55 in the morning and the steps of the Lindo Wing are filling with police, professional photographers and a woman holding a frame which looks like an official announcement and is then carried in through the doors of the Lindo Wing.  All of a sudden, it breaks to a scene of what looks like a re-enactment on the grounds of the palace. There are guns manned for a salute.... sirens can be heard in the background... surreal.  In turn, each of the cannons fire from the grounds and near London Tower.  There will be a 42 gun salute - 21 from grounds, 21 from the Tower.  Amazing that I can sit in my home and watch in real time what is going on this instant on my iPad.

I would like to dedicate this blog to the very special men in my life who are supportive, loving and kind to each other.  My husband has been such a wonderful Dad to these two boys he has raised since Will was 4 and Mitch was almost 2.  Will has only seen his biological Dad once since he walked away after learning of my first diagnosis and only because his well-meaning ex-girlfriend thought they should take a drive out to visit. She would discover quickly that his father had no desire to visit with his son You often learn the most about someone when you are at your lowest moment. There are many such souls who take up the slack when others drop it and we usually only hear the bad side of step parenting from news media.  My husband was raised by an incredibly loving man when his mother re-married a few years after his father was killed by a drunk driver.  He is the man today because of his experiences with his step dad and the father to our boys that they truly deserved.  I love my men and the joy they bring in their laughter and their shared love and respect for each other.

Friday, July 19, 2013

..... a quiet moment amongst the busy ones....

..... in the wee hours of the morning.  I am restless overnight and as usual, my brain fails to sleep.  Part of me has so much to do and is racing to get things done in a 'just in case' attitude.  Yesterday my friends Brayden and LIsa came to visit.  Brayden is a young man who one day approached me in the Faculty of Ed cafeteria.  He wanted to let me know that he just loved my laugh and could often locate me in the lecture hall.  I thanked him and then after rose to go to his table to thank him.  That was our first meeting and our first hug.  Over the months, we would become friends and he would later urge me to audition for the play 'Alice through the looking Glass'.  I did, got the part of the wacky White Queen and had the most magical time of my life.  I love this 'old' soul who brings such joy to those around him and to me.  He made the trek from Guelph yesterday, picked up Lisa and they spent a few hours with me in the pool.  The weather is still so stifling hot.  Max is ever present reminding me to stay out of the sun, put my hat on and stay in the shade.... my Jimney Cricket!!!  Thank you so much Brayden and Lisa for your wonderful visit and for the lovely flowers which now grace my kitchen counter.  There are promises to visit again soon.  Lisa will be leaving for a position in Sweden... she learned through her own cancer journey years ago that life is fleeting and that you should always seek out what you want in life.... I totally agree.  

Lydia and I snuggled into bed after dinner and watched a number of episodes of Bewitched.  It has become our evening ritual to watch these wonderful shows on Netflix.  She stopped worrying about the lack of color and just enjoys the story line as much as I did when I watched them as a child.... wait till she sees 'I dream of Jeannie'!!  Max still carries her to bed but now she has grown so tall and her long legs and arms are tangled around him.  Her pretty pink toe nails are from yesterday's bedtime gathering.  She found me napping earlier in the day and brought a blanket to cover up my feet.  I could hear the urgency in her voice when she couldn't immediately locate me and she snuggled in tightly to me when she did.  She pets my head and wraps herself in tight.  I love you so much Mommy.  I love you too baby.  She watches over me for a few more minutes then lets me know where she will be if I need her.

..... it is the wee hours and I stretch out my legs and rub my head... oh dear.... day 10 and the bristles above my ears have snapped off at some point in the night.  I ponder the conversation before bed...Max, I think everyone thinks I am going to die.... well we all do.... but I get the funny feeling that there is an urgency to see me before anything happens?  He looks at me and says a simple 'yes'.  I know that I always try to find the humour in everything and especially when I am in pain... its a strange coping mechanism and I am not sure when I discovered it works for me, but the laughter always helps to offset the stress.... you have to start really worrying when I no longer smile or laugh at stuff.... it means I am in a funk and can't get out.  I ask him where he is at with all this and sit quietly when he tells me that he will miss me and he does not want to see me in pain when the time comes for me.  I draw in a quiet, long breath as he continues.... he wants me to live a long and happy life but if it should come to a painful end, he is hoping there is mercy.  He is afraid.  People often say how strong I am and how brave I am.... well, I have no choice in the matter but my family does.  They could run screaming to the hills and hide but they choose to stand beside me.  They are brave for not falling apart on the days I am not well... they are strong for hugging me and keeping close despite knowing that some day, their hearts will break... Miss Lydia tells me she doesn't want me to see her cry and I let her know that she can do whatever she needs to do and say... there are no boundaries or taboos in our conversations.  We have always been honest and candid with each other.... we are real.  

..... I reach out and find my husband's hands.... he gently clasps them and enfolds them gently in his.  We do not speak but we know that we are just there in the moment and together.  We are soul mates, we know each other well.  I think about his sister, the one who says she cares about us.... and then I push her out of my mind... she only cares about herself.  My husband is surrounded by other family members and friends who have been incredibly supportive to him.  Brad visited in the early evening and as we spoke, he grabbed the bandaid I needed to cover the wound on my left arm and gently placed it. The bug bite is not infected but it also is not healing either.  It will be months after the chemo for it to completely heal and will leave a permanent reminder when it does.  He and Max have been friends a long time and I can see he is concerned when we tell him what is going on with my diagnosis.  He will come and see us as often as possible.  

My sister texted me in the early evening.  She is coming for a visit!!!!!!  OMG I am so excited I just can't wait!!!!!  We have not seen each other in so long.  She will come at a time when the whole family is at home.  Will will head off a few weeks later to the Military and Lydia will head out to a friend's cottage for a gathering.  I am beyond ecstatic and can't contain my excitement.  Lydia can't hear the TV from the giggling while I text her back with silliness!!!  I will take all the joy that comes our way and live my life knowing that the people we have in our lives are wonderful, brave, strong and spectacularly special to us.  

I dedicate this blog entry to all those whose lives are touched by a loved one going through any journey.  It takes guts to stick it out through thick and thin while having to watch from the sidelines. I am deeply grateful to the wonderfully brave souls who live with me, who, through no choice of their own must watch the journey unfold in their daily lives.  We use humour and love to offset the darker moments.... I think cancer loves to feed on our darkest moments so we try not to have too many of those.  As a friend of mine Caroline said in the days before her own death..... you have to laugh at the irony of living... we all must go.  I was able to sit with her in the palliative care unit at Princess Margaret Hospital a few years ago and hear what she needed to say to me.  She knew she was dying and yet, as we sat in the comfy overstuffed chairs in the private family room, she kept living and planning and moving forward.... she had goals she knew she may never achieve but she had them none the less.  Her positive spirit and endless cutting wit endure in my memories of her and how incredibly positive she was to the end.  She left behind a support group she founded and a medical special care group for Multiple Myeloma - a cancer of the plasma cells.  Her treatments caused a secondary and deadly diagnosis of Leukemia which took her in her late 50's.  

Tonight will bring Mandi and her clan to chill with us by the pool.  I am looking forward to having a meal and another chat with her.  The wind is picking up and swinging the full branches of the apple tree around... it is leaning towards the pool as if looking for a drink.  The industrious squirrels have been foraging for more materials to line their nests.  Judging from the height of them, I am assuming that we will have a lot of snow this winter.  The Cardinal wakes me from my reverie... I have been up since 5 and now must get ready to take the car to the shop for its bi-annual rust inspection.  

Thursday, July 18, 2013

....... the mid week hump.....

..... brings its own series of bumps.... in the form of spine bone pain and spasms...

Tuesday July 16th....
It started out good and an hour into being up, the lower spine began to ache and then the muscles began to spasm in the lower back and upper thorax.  It felt like an electrical storm coursing through my back and every time I tried to straighten up the spasms would get worse.  I decided to give in and just lay draped over the ottoman in the living room much to the delight of the dogs who could now see eye-to-eye with me.  Chemo, like pregnancy, heightens all the senses and dog breathe, while normally noxious, takes on a whole new aroma.  My stomach turns as I point the dogs in any direction but my face!! LOL  Max and Mitchel are out at our friend's house cutting the lawn for her.  She is carrying her second baby and has strict orders not to do any lifting or hard work.  Max's phone keeps pocket dialing me... at least his phone knows I need assistance!!  I manage to arch my back to reduce the storm brewing in the lower extremities and walk upstairs on feet that often feel detached from the rest of me.  Sometimes they feel like I am walking on hot coals while other times they feel clammy and cold despite being dry and warm.... my feet feel gross!!!   I manage to cozy in to the bed or at least get as comfortable as possible... Max calls and I tell him I need him home....

Lydia has been picked up by our friend Pat this morning to head out to her family cottage for a sleepover with her daughter to celebrate her 11th birthday.  Pat hands over a signed poster by Chris Hadfield, her brother,  and the tears well up and pour over.  I am not a celebrity hound... just a geek who totally thinks Chris is the coolest Canadian to come along in a really long time!!!!!  His picture now proudly graces my front hallway.  Have a great time learning how to water ski Miss Lydia!!!  Her FB posting tells all her friends this week what an amazing summer it is turning out to be.  Mitchel will wholeheartedly agree with his major adventure behind him.

My neuropathy in my hands is getting worse - the numbness means that I can easily injure myself with little awareness that I have of them.  It is essential to now wear rubber gloves doing dishes and garden gloves while outside.  I need to keep busy but I also need to be keenly aware of what I am doing at all times. I have a number of mosquito bites on me and have applied 'After Bite' to each of them to prevent me from itching them.... open wounds do not heal and I notice one on the wrist of my left arm... the arm with edema.  I get out the first aid kit and will apply triple antibiotic cream 3 times a day to control any possible infection and keep a band aid on at all times.  Max inspects each bit and notes that yes, that one is one needing a close eye.

Wednesday July 17th
I wake up early with another crick in the left side of my neck and stretch it out to minimize the pain which eventually subsides... oh yeah, I woke up yesterday morning with the same crick.  I now have to dig around to find the lesion which has physically shrunk on the left side of my neck.. while I am relieved by this... I am now wondering where the cells are going??  My neck around the clavicle is still swollen but it doesn't feel like I am being choked anymore.

In typical fashion, my husband has spent his first few days helping friends and addressing items needing looking at in and around the house.  I have not seen him this relaxed since our last vacation....whenever that was??  This summer, he will sleep in, ride with friends when the tropical weather this week settles down, and just simply enjoy our lovely house and pool.  The air conditioner has not stopped running all week and with the humidex in the 40's and our pool in the 80's, why would we go anywhere?  I can not camp or go out during the heat of the day this summer so here we sit in paradise on the deck, having coffee and listening to the birds chirp, while my family sleeps upstairs.  I love the early morning hours..... alone and deep into my own thoughts.

I called my mother back early this morning.  Lately she is anything but smothering.... not like she ever was to begin with but she is having a hard time dealing with my second diagnosis in her own special way.  She doesn't call and something tells me because she wants to know as little as possible because to her, ignorance is bliss.  I make her laugh and connect in the only way I have ever been able to.... with my quirky sense of humour.  She asks if I have lost weight?  No mom, only my face has... the body still has to play catch up!!!  She giggles and we kiss each other over the phone.  I ask that she squeezes Dad for me when she visits with him tomorrow.  He doesn't recognize her anymore and she prays that he goes to sleep and passes over.  Her dementia is slowly creeping up on her as well and she often stutters or searches for words that simply escape her throughout our conversation.  She knows that I cannot visit with Dad right now... that long-term home is germy even at the best of times.  You would think that through all these hundreds of years and everything we know about illness, that they wouldn't have a system in place that allows windows to be open and sunshine to pour throughout the units...instead they live in crowded quarters with recycled air and fake plants....sigh.

I came across a poster while searching for something online from 'Preventative Disease'.  It says  "It is during the worst times of your life that you will get to see the true colors of the people who say they care for you".  Everyone deals with this diagnosis in their own personal way, with some in denial, some who flaunt it like it's a good thing and those of us who just accept it as it is and move forward.  While I have completely disconnected with a few uncaring members, I have been wonderfully surprised to have been graced with the reconnection of a dearly loved sister and her daughter.  Surrounding yourself with people who truly love and care for you makes your journey far easier.  Our life journey is too short to have to deal with those who only show up to put in an appearance and leave before the going gets tough.  If you are not close with a family member in a cancer journey, send flowers or a card just to let them know that you thought of them that day.... you will find a thank you back and maybe if you care deeply enough, an opening to a revewed relationship. 

Lydia arrives from the cottage in the late afternoon, just as I am completing my work day.  She has her own signed copy of Chris's pic and a bunch from Pat showing her on skiis!!  OMG she looks so grown up with her two pals enjoying the tropical weather by and on the water.  Yes she is having the time of her life.... BEST SUMMER EVER!!!

Tomorrow will bring friends from my school days out from Toronto to sit by the pool and visit.  I am so excited, I just can't wait!!!!!!  I will work until they arrive for a late lunch and then the afternoon will be ours to enjoy. 

I wish to dedicate this blog to all the family and friends who have shown my family how much they truly love and care for them.  To Patricia and Chelsea whom I adore and love so deeply... I am grateful for our renewed connection and to your loving support.  xoxoxoxoxo  To my husband, who has made a huge life change will now be able to support his family through being here at home where we need him the most.

Monday, July 15, 2013

..... and another wonderful, productive day......

..... with Sara in the morning.... setting up our work station on the dining room table and getting down to business producing the first three labs and the step-by-step instructional for this September's classes.  I am feeling good today and find myself almost giddy.  It is good being able to work from home.  It allows me to move around, take frequent breaks to get some food and lots of fluids at my fingertips.  We work steadily until early afternoon, take a quick break and continue plugging away. Sara is such a great friend and colleague... we work so well together and feed off of each other with creative ideas based on experience and knowledge. This will be an exciting year for us and the students.  We have made such progress that we break later on to take in a late lunch with my kids and then to take a swim on this brutally hot day after the work day is done.  I have my notes created, pics to incorporate and we will continue this on Wednesday.

Max and I have decided that he will resign his full-time job, take the remainder of the summer off and then we will both return back to teach at the college in early September.  We were so excited that we found the wonderful Champagne I was given for my graduation and Max popped the cork into the pool.  The kids and Sara gathered around to toast to our new life chapter.... mixed it with juice..... in our best crystal glasses..... and whooped!!!  Life is what you make it and making decisions to follow your heart and fill your days with joy was easier than we thought it would be.  Yes, we will both work hard but doing the things that make us feel like we are living our life!!

With the high temperatures, I put out a post on FB and invited whoever needed to cool off, to just come over.  Ameeta and Peter popped in with their son Sanjay.... long time friends who are always here to support us.  She has brought me a lovely headband.  When I checked the name on the tag, I was excited to discover that this lovely colorful band was made by a friend of mine's mother and had sold it to Ameeta at the new Ogilvie Market in Hyde Park.  I couldn't wait to take a pic and send off a copy to Celine... who sent it to her mother!!!  Now her Mom can be so proud to know that the lovely headband has found a good home.  I wore it doing some early evening gardening and it worked so well keeping the eyes clear of sweat in a very fashionably comfortable way.

It was a wonderful, wonderful day.... swimming with my family, giggling with my husband while floating in the warm waters on a hot day.  Feeling the love from so many many friends who have called, sent cards (thank you Adrienne for the beautiful card that came today!!!), visited and FB'd.  My family is deeply grateful for so much kindness... even my daughter wrote that it was the best week ever!!  I would have to agree.  Thank you all so much for celebrating our incredible life moments.... you never know how long you will be here... so take it in.... each moment.  I am deeply grateful. xoxoxo

Saturday, July 13, 2013

..... a wonderful day....

..... filled with love from the visit with  Chelsea and her boyfriend Earl.  It seemed as if everything had aligned itself with everyone from my immediate family collecting on the back deck for breakfast yesterday.  My colleague was held up by a twist of circumstances by accidentally locking her keys in her car?!  So my intended work day vanished and our visit continued with the family going for a swim in the pool.  I enjoy the pool but find that I cool off too fast and head over to the shade with a towel.  I am in awe of the bright sunshine and interaction between Lydia and Earl... she has taken to teaching him her 'basics of swimming' condensed course while Chelsea keeps an eye from her floating noodle.  I smile from my perch on the side of the pool.... grateful is the only word I can find that can even possibly touch on how I am feeling in that moment.  It is the first time my daughter has met her beautiful older cousin.  Nora arrives an hour before Chelsea plans to leave and we all chat at the table while Earl showers and readies for the day's trip.  Lydia has prepared a pink basket filled with treats, drinks and edibles for their trip to Chicago.  It will be the next leg of their journey and I am glad that they are turning their move into a vacation.  There are soulful moments and tears as we chat quietly... I am painfully aware that the time is going quickly and I will soon have to wave goodbye.

Nora is lovely and a good friend who quickly offers to snap photos as we begin to say our goodbyes in the front foyer.  I am trying hard not to tear up but I gently bite my lip to remind myself that we part with only smiles....until next time we meet.  Hugs and kisses and some for Nora in the driveway and then Chelsea jumps in the drivers side with Earl popping next to her in the shotgun seat.  Bye!!!!  We watch them roll away and off to their next destination in their journey.  I will find later that she has posted her pics on FaceBook!!  FB brought us together, kept us in communication through her trip and now we are able to share our moments with our family and friends.  I love technology.

Today is Saturday and day 6 of my journey through the first round of chemo.  I find myself checking the lump in my neck and figure that it has begun to shrink.... whether wishful thinking or not, I am thinking it is going in the right direction.  My face pain amounts to the jaw and around my eyes.  I take a tylenol.  I do not often take medication if I do not have to but really..... I need to feel comfortable right now.  I missed a reflux pill yesterday and my stomach broils over with a sickening lurch.  I find the bottle in my purse and swallow it down with some ice water.  I am drinking so much that my eyes are bobbing in their sockets.  

I turn on the pool pump and skim the surface.  The pool is warm now and is inviting with its beautiful blue color.  Our neighbor walks over to the fence... how's Max?  He's OK.... he is still dealing with the shock of yesterday's work day and wondering what happened.  He had applied to a full-time teaching position a few weeks before our diagnosis and he was hoping to secure a full time job with benefits and good pay.... I am just working a contract position but have not had a steady pay since last year.  He found out last week that he did not get the job..... meantime...... a suspicious employer, not enough information and a few accusations later after he already told Max to consider leaving his position if he got a better offer...... yup, not good timing.  Thank you to all of you who graciously and generously offered to  submit your letters of recommendation in time for him to interview for this position which he did while we waited for the doctor's phone call.  Mitch wants to head out on the bikes and is wondering if Max would like to come along?  I tell him yes and head upstairs to get him out of bed.  He did not eat dinner last night... he is quiet as he rolls out of bed and looks at me with his hollow eyes.... I think he really believes that somehow he has failed me and he could not be further from the truth.  We will be just fine babe.... a new job will come your way, lets just take each day as it comes.... now go out there and play!!!!  

Lydia's friend Amber has slept over and the two are prepping to engage in their gardening business.  Apparently, even I have to pay to have them weed my garden?!  I want to walk down to see Amber's mom to make sure she is OK after her surgery yesterday.  I gather up a potted geranium and a card wishing her a speedy recovery and head down the road with the girls.  My head is covered with a cute pink scarf but I would prefer to be bald because of the heat.  The little boy who lives next door to them is the same one who was riding around on his bike the other day..... he cannot help but stare at me every time he sees me and I remove the scarf to sate his curiosity as I nestled in to one of the porch chairs Sandra has offered me.  His eyes focused on me as the car he is sitting in rounds the corner of the cul-de-sac to leave and his head rotates to keep watching me as they drive away.  Sandra and I talk about our feelings and she is quick to hug me when the tears begin to course down our faces.... we have both been through so much and it is time to just enjoy each other's company while we physically heal.... her from her wounds and me from my chemo.  Hugs and pats on the back while we make plans to see each other soon.  

It will be a quiet evening.... and another lovely day.

Friday, July 12, 2013

...... busy day with help from my daughter....

...... who is now tall enough to reach up and hang laundry with me in the backyard.  Yes, despite the fact that my head shut off and is drifting in and out of a cloud, I still have to keep moving.  My niece is coming today and I am trying slowly to prepare for her arrival.  It has been a lifetime....

My nurse arrives and he sits with me on the back deck taking in the lovely cooler morning air.  He is here to check on my blood pressure.  The kidneys seem to be overexerted by the chemo but holding well.  We sit chatting while he puts the cuff on and takes the first of two readings.  His wife has just finished her journey and is still trying to recuperate.  Four years ago I knew no one with breast cancer..... now, I know far too many.

Lydia and I go shopping at the Super King next door to pick up some groceries and a few headscarves at the Urban Planet outlet across the aisle.  We pick one out for Melina because I want her to know that I am thinking of her.  I cannot sit with her because my own immune system is offline for a few days and I cannot take the risk.  We wrap the gift when we return home and then drive over to nest it between the doors.  I love you my friend and I am thinking of you each and every day.  Get better and kick this disease.

I consider myself to be blessed in so many ways and Wednesday night brought Mandi, Ken, Ava and Jet for a visit.  Mandi is near and dear to my heart.  She was the catalyst for seeking out help at Wellspring in my first journey.  She was brave enough to pick up stubborn me and drive me to their doorstep and take me around for a tour.  They are a cancer support free service in London with chapters in other major cities and provide services to those going through the journey and those who are their supporters.  I didn't want to go but she gave me no choice and so began my first journey which brought me in touch with so many wonderful people and new adventures.  I left Wellspring when I was getting better and on with my life but I always stayed in touch with the people I spent moments with.  When Ruth passed, I returned to help put together a memorial event where we sat around the Art room on a gloomy November day and talked about how she made our lives richer with her presence.  I still miss you Ruth wherever you are!!  It would be the beginning of a new life.  Mandi brought a wonderful dinner of pulled pork and salad..... kids sat together in the dinning room, the men under the gazebo out back and she and I nestled into comfy living room chairs playing catch-up.  I love you Mandi, bringer of joy and light into our lives!!  Mandi knows all too well what this journey has taken from her life.... at 17 she lost her mother.

Mark S. shows up on the doorstep about an hour into our visit and I am so excited to see him!!!!  A wonderful friend and past colleague whose path always crosses mine over the years.  He always calls me 'Chica' and I smile as we hug.  I lead him over to the 'man den' and he is joined minutes later by my 19 year old son and the rest of the motley crue.  They have beer.... enough said!!  Mandi and I continue our discussion in the living room and the kids have moved off to the pool where we can see them having a blast.  Life is good.... I am so happy in this moment that I do not want to let it go...

Hugs galore and promises to see more of each other, we lead our guests out to their cars... it has been a wonderful week filled with so many friends.  I am now looking forward to seeing my family together.

Tonight we are expecting Chelsea and her boyfriend Earl to arrive but alas, multiple delays brings them late to the house.... 11:30 pm and we chat until almost 2 am.  I am so tired but was smart enough to get some sleep in during the afternoon after Lydia and I made her some earrings.  I am in awe of the beautiful woman who walks towards me in the cool night air.  She is lovely, gentle and graceful.  We sit in the living room over cups of coffee and chat about the years trying to roll as many away as possible to get to the present.  William has arrived and will be staying the night.  He has looked forward to seeing her all day and now he sits grinning and chatting amicably while they discuss his new career...  one they are all too familiar with as they are both in the Armed Forces.  Lydia sits with us and joins into the conversation but is obviously too tired to continue so I urge her to go to bed with a promise to get her up when they are up and about. Earlier in the day, Mitchel texted me and let me know that he will be arriving  early Friday morning, just in time to meet his cousin... he was supposed to arrive Saturday morning.

Sarah Brown, who is best described as my 'daughter' and best friend came to chill with me in my bed earlier in the evening in anticipation of meeting Chelsea.  She laid beside me and we chatted about the anticipated birth of her second baby still three months away.  I like to rub her belly to see if baby will kick me but she has chosen to doze off and likely because we are talking quietly.  There is a moment in time when I am texting Chelsea to let her know that Sarah would love to meet her and I how much I love this woman who we first met when she was only 9 years old.  She has been such an integral part of my family and I of hers for the better part of 19 years and I love her so very much.  The tears catch me by surprise and I look over to her.... no words need to be said, we both just look into each other's eyes... unspoken and deep.  She says she will miss me but hopes I can see her children grow up.... no promises Sarah.... I will try my best.  You are such a light in my life and truly one of my own.  Life at this moment is magical, as if orchestrated from above.... all my children and my niece together under the same roof for the first time.... I will remember this moment.... I put my head on Sarah's belly and rub it for good luck.   She has to head out into the night without meeting Chelsea.  We hug and she is off to her home to get some much needed sleep.

Max picked up Mitchel and his girlfriend Sarah at the airport early this morning... they have arrived after a red-eye flight from Calgary.  After an hour of showing pictures, they have settled into the couch to sleep.... I am tired but think, heck, house is quiet, think I'll make a traditional family breakfast of leftovers to make breakfast hash - potatoes, onions, eggs, bacon all in the pan.... Life is good... oh yeah, reminds me that my foggy head couldn't remember where the garbage can was this morning.... I will clean up under the sink later....

I wish to dedicate this blog to my family and friends who are courageous enough to get to what is real and important in life....

Wednesday, July 10, 2013

..... round 1 day 3.....

..... and I am feeling pretty good this morning.  The reflux kicked in last nigh and I was relieved that I had saved the prescription from the last journey (the nurse inadvertently ordered anti-nausea pills instead) and hoofed one down before bed.  Pantroprazole is used for extreme reflux in usually chronic cases but over the short time use, it is fast and really effective.  I am drinking two large glasses of prune juice a day to keep the bowels moving with all these pills and medication that cause constipation.  I learned through the first journey and a trip to the hospital ward to never let a day go by without being super diligent.  It could have caused a rupture leading to death had I not gone to the ward to be treated.  I am drinking a ton of ice water with chlorophyll added to my first morning drink.  I am still adding Oregano oil to it to reduce chances of getting bacterial infections.... it does not taste good but my mouth has no sores from the chemo I am taking!!!  I am brushing and gently flossing my teeth, tongue and gums to reduce any build up of bacteria while my white cell count drops.  Any sores that did not previously heal will not heal for months and need to be cleaned and a topical put on to avoid the blood poisoning I had in one cycle from a scratch!!  I have to wear gardening gloves, long pants and long sleeves with a hat while working in the garden.  Today my eyes are sore along with my teeth and jaws... the Neulasta is kicking in and I anticipate by this afternoon that the muscles will begin to ache as my immune system comes online quickly.

9 July 2013
This was a day filled with visitors come to spend time with my on my back deck.  Despite the humid weather, it was great chillin' with Kelly M.  She tears up when I tell her how I have already come to terms with my life and how grateful I am for the life I began to live after my first diagnosis.  I think we often go through life with blinders on and do our daily routine in such a mundane and unexciting way.  We live our lives it seems on other people's terms and find ourselves chasing our tails.... all because we need to make the buck to pay the bills. I have found my passion for people through my teaching profession.  While the outcome is dire with so many qualified teachers out of work, I consider myself fortunate for the opportunities that have been offered to me in my vocation.  I am living my life doing what I want to do and that is sometimes more than most people can say.  I once had a discussion with a gal from work in my last life chapter and she was waiting to have the house, the 'stuff', the money in order to start a family.... well, you will wait a lifetime.... live your life and do what fills your soul.... the money will come and so will all the stuff, but family is family and no amount of money makes life with them any better than the love and connections you make.

Nurse Trevor shows up around 3:15 from St. Elizabeth nursing service (under the auspices of CCAC and contracted out through the nursing staff at the LRCP).  He is fun and spends about an hour filling out tons of paperwork prior to giving me my needle.  I will see another nurse tomorrow who will take my blood pressure, check my temperature and see if there is any swelling or wounds to dress.  They are very diligent in their care and will come to my house or work to provide me with service.  Thank goodness!!

My beautiful daughter is always near me when she is not off spending time with loving friends who are looking out for her when i have to go to appointments.  Kirsten P-M, thank you for taking Lydia with you overnight.  These wonderful moments in life are ones she will look back on with happiness.  There are those precious quiet moments with her when we lay in bed watching 'Bewitched' on Netflicks or the other night when we watched Lord of the Rings.  She says she will miss me if I have to go and yes, I tell her that I will miss her very much.  I ask her where she can find me if I have to go and she points to her heart and looks up with tears just beginning to crest.  I love you so much mommy and I do not want you to die.  I don't either baby, but I cannot promise you anything, you know that right?  She does and no sooner does she answer but she comes up with a plan to have me give her a sign if I am around her once I pass.  Flick my hair.... no wait.... make me drop my pencil - twice.  Could you move a picture and make it crooked like Great grandma does with Grandma's picture.  Yes, I can do that, I think?!  I let her know that she would know for sure if and when the time came.  My intuition tells me that it is not the case.... and perhaps a miracle will happen.  It is always good i tell her to always think the best but always be aware that we are just visitors to Earth.  We hug tight and will continue the hugging into the night as we fall asleep watching TV together.  She is growing up so fast and when she asks to shave half her head, in keeping with the latest fashions.... what the heck!!  It grows back.

Veronica came to drop off some irises from her garden and a quick visit.  She is quiet as she looks at me with my shorn locks - she is a hairdresser and a classmate of mine from Western this year.  She often trimmed my hair in the women's washroom at school and coifed it every show we did at the faculty for 'Alice through the Looking Glass'.  She made me look amazingly crazy with my hair pulled through the crown of this quirky, crazy character!!!  I had such an amazing time doing this play with some of the nicest and loving colleagues ever!!  Look us up on Facebook Alice Through the Looking-Glass, Althouse Production 2013!.  Even the family of the playwright came to view it and loved it.  It was something I had always wanted to do but in high school, I only managed to work behind the scenes and here all of a sudden I was this outlandish character who was told I was perfect for the part.  Well it was difficult memorizing tons of lines but I had the best help from the fabulous BeD students I acted with.  Many friendships were made through this adventure!!!  It was one more thing on my bucket list that I had for-filled and it was worth all the effort.  Thank you to so many of you who made this the highlight of my days at Western!!!  As we were finishing up our conversation in the front of the house at her car, we noticed a young boy on his bike almost wipe out when he took a double take at my bald head.... never mind the guy driving super slow past and eying me out of his peripheral so as not to be rude.  I have no reason to cover my head in this weather and am not self-conscious.  :)

My eldest son William is making preparations to enter the Armed Forces next month when he heads out to Saint Jean, Quebec for training.  I look at him and he still appears sometimes as that funny, silly little boy with the endless blonde curls and cherubic smile.  Now I see he has grown up and his chiseled jawline tells me he is a young adult about to grown up the rest of the way in the service.  I spent four years in the regular forces and know that this is a great start for a young person who wishes to travel and to be a part of a bigger plan outside their own lives. He will have an amazing life!!  It is a great comfort to watch your children move forward and make decisions you know are right for them.  He spends a lot of time with us here at the house and will continue to do so until he leaves for the service.  I am proud of him and all my children.

10 July 2013
I have made breakfast for my husband.... what a treat to feel good enough to bounce out of bed and get the pool tidied up and breakfast cooked.  I will have eggs every morning with my prune juice because that is all I want to eat.  Nurse Muhammad comes to take my blood pressure and sits with me to chat about our children and the lovely pool he can see from the deck we are sitting on.  He has warm brown eyes and smiles when he realizes the cancer is my second journey.  It is hard to see people with this disease he states and I agree with a warm smile back.  He is wonderful with me, fills out the paperwork and heads back out the door.

My lovely sister has sent me a beautiful card.  She is the youngest of four and the most like me.  I love her so much and I am glad we have reconnected after all these years and have been texting non-stop for months.  I want to see her so badly and I know that it is in the works over the next few months.  Tomorrow her daughter Chelsea will arrive to stay with us on her way out west.  I am so blessed and so excited to see them that I can barely wait!! OMG I have waited too long!!!!!!  The years have gone by so fast and our lives so busy that we put aside some of life's most important people..... family is everything!!!  Your memorial and obituaries should speak to the love you have from others and for others and the impact you made in your community when you graced it with your presence... just saying:)

I just got off the phone with my amazing and courageous loving friend who is in stage 4.  Her coughing is as a result of her recent lung infection which she is fighting off through the 8th round of Docetaxil.  She is brave for so many reasons but going through this chemo she is now on is painful and fatiguing.  She is tired and breathes deeply through the next coughing fit.  No part of our conversation is sacred as we talk about our illness, our unknown prognosis and our willingness to discuss our wishes when we die.  Funny how we both wish to donate to science to help others when we no longer need our 'ride'..... the soul moves on back home.  We laugh about the stupid things about our diagnosis and speak to the seriousness of waylaying testing.  We both chose to delay testing until we knew we had no choice.  I found my lump, she was in pain.  The little voice and many hints along the way were simply ignored.... me because I had to finish my schooling and her because she did not want to face what turned out to be a stage IV diagnosis.  Mine is a stage III.  The difference is that mine is still contained in nodes and hers has travelled into bones and organs.  I love you MN and I will see you when you are feeling good enough to have company.  Keep up your strength and I will send you some of mine to help you in your journey to kick the living crap out of this disease!!!  We both agree that if you think something is wrong, you need to seek out medical attention and go through testing.  I am considered asymptomatic - no symptoms present, just that ever present little voice that lets me know something is wrong.  The body will tell you in so many ways and ironically, I think my guide lets me know through subtle hints such as: a friend dropping off a random pink gift... after 4 years?! mere weeks before testing and the classmate who thought they had cancer in their neck.... in the same spot I had mine - he is fine!!  The fatigue that gripped me so I was zapped of energy when I had to exert so much in a classroom.  Listen closely to your body and what it tells you.... feel for lumps in areas you never would think to search.... men need to inspect their testicles and breasts - one of my friends had testicular cancer at 32 and a male coworker of my husband just died in March with breast cancer that had metastasized.  Please take care of yourselves.  Do not ignore infections which create chronic conditions such as sinusitis and bronchitis (I have suffered many years with both).  Infections tax the immune system and allow for other more sinister diseases to present themselves.  Eat well and stay away from fast food..... it is a treat not a regular menu item.  Hydrate and take some supplements.... exercise and enjoy your life - fill it with laughter and love. ... OK off my soap box... you get the idea.

We always encouraged our children but never told them what to do for their future.  They were always free to make all their own decisions with guidance but no pushing.  I think children do better and gain more confidence when they have a say in what they want to do.  I have seen too many overbearing parents who push their children too far and are surprised when they retaliate and do the complete opposite.  I have not had to deal with that and the kids are happy to explore any and all options they are interested in without us giving our 2 cents worth, unless they ask us to.  Everyone is this world is valuable for what they do regardless if they choose to pick up your garbage or fly you to Paris.... and intelligence is rarely a requirement for either... although it helps.  I treat people behind the counter at the local coffee shop with as much respect as the police officer that comes to help with a complaint or the secretary you meet at an office.  You never know what amazing things they do outside of their career that makes them special to their family and friends.  To judge someone based primarily on their career choice is hardly intelligent at all.... my best friend is a cleaner in the St. Thomas hospital and my other best friend works with children - they are my most favorite people to chill with because they are kind, loving and smart as heck!!!

Speaking of housekeeping, please feel free to contact my friend Barb who has her own business and who generously cleaned my house before my first treatment.  She is a hard worker and is very trustworthy.  Please consider supporting her and growing her business.

Monday, July 8, 2013

.... a long day and lots of administration......

..... in order to get my medications filled and paid for by the insurance companies and the Victory Program.  The Victory program is a charitable organization set up to support patients requiring financial assistance to help pay for the medication produced by AMGEN.  This medication, Neulasta  used to jump start the immune system 24-48 hours after chemo and costs approximately $2,600 per injection.  I will require 6 such injections, one after each chemo.  I had taken out student insurance for my family and I when I started at Western this past year and they, in conjunction with the Victory program,  have covered the costs 100%.  If I did not have any insurance at all, The Victory Program would contact Trillium, an Ontario government insurance through OHIP to cover the cost of Neupogen which is essentially the same thing but administered every day after chemo for 7 days.  It is a good thing I remembered all of this because I was making all the arrangements with the Victory Program and doing an Urgent Rush on the insurance company.... just in time for today.  The doctor wrote the script today when I was waiting for it to be filled at the pharmacy.  That pharmacy is the most efficiently run pharmacy I have ever seen.  I have my shot covered and when I got home, I faxed the letter sent to me by the insurance company.  Whew.... only took 2 hours to get all this done..... normally, everything is in place but because I was and urgent case, there was little time to get everything done and in time.  Normally I go to pharmacy and everything is ready to go for me to pick up.

CCAC (Community Care Access Center) is contacted through the nursing staff at LRCP (London Regional Cancer Unit) in order for me to receive nursing care to administer this life saving inoculation and to see if everything is OK with me in general.  I have contacted a friend of mine who is a diabetic to help me just in case.  Mark gave me an inoculation during my fourth chemo treatment because the nurse forgot?!  If I have to take the Neuprogena, I will have to give it to myself because I will be at work during the last three treatments.

....... Chemo Day July 8, 2013.......

I didn't sleep well last night and kept waking up.... sometime in the middle of the night, I remembered a few days prior at my 'Lost Locks' party that I was standing in the kitchen doing something and turned to see who was standing to the right of me.... I thought I saw something move and then it was gone.... almost a shadow of a person.  I believe in guardian angels and I think I might have just perchance caught a glimpse of mine.  While a lot of people might not believe in this, it has given me hope that I am being looked over.  In my first journey, I was drawn to the Sylvia Brown books and read one after another..... some of what I read rang true to me.  I have heard many stories of people since who have seen the 'other side' just before passing.  My friend Ruth, at the age of 80 saw a door open, light shining into her room and silhouettes standing where there should have only been the corner of the room.  Her partner must have heard her speaking out because when he opened the bedroom door, they and the light disappeared.  Ruth did not want to go and felt she had so much living to do..... she would cross through the door a week later.  I miss Ruth but I know she is dancing in her new home and is pain free now.  I love you Ruth.  My Grandmother saw the other side soon before her passing and she waited long enough for my mother to make it into German air space before passing away.  My father flat-lined last June and although he has advanced Alzheimer's, he was able to describe to me about touching the ceiling in the emerge department after he was abruptly returned to his earthly confines.  For a few days after his return to the home, he kept trying to reach the ceiling.  I love watching Theresa Caputo, the 'Long Island Medium' for the amazing work she does.....but I digress.... that is not where I am at in my life's journey... just a sideline into my very private life.  I am intuitive and spiritual, not religious.... it is about being human and in touch with the soul side of our being.....  at any rate, I forced myself to stay in bed until 7 am and got up to take a shower and grab a coffee.  Ah coffee and my Keurig... do mornings get any better than this?

I can feel the anxiety rise and the toast I made tastes like cardboard as I attempt to wash it down with the coffee.  I should have added Bailey's but we ran out yesterday.  I rarely imbibe when I am on chemo, so I would have just taken the cream anyway.  I debate on whether to wear head gear to go out to the hospital and Max decides that I need to wear the Hard Rock Cafe one we bought in the states.  So here we are, both wearing matching head scarves and hairdo's!!!  I also brought my new big pink scarf for the chemo suite because it is always cold there and I use it for head and neck to stop the drafts.  We find ourselves sitting along the wall just outside of the chemo suite and chat with a man who is also going through his second journey.   I am so tired and leave him to be the chatty one.  I need a coffee and I ask Max to grab me a Tim's on the floor below.  The gentleman next to him points out the coffee cart is across the way and he heads off only to return minutes later smiling.  He has found the cookie basket beside the coffee decanter and he sinks his teeth into a Peek Freen.  He gives me a package and then asks me if he can have it when I do not eat it immediately.  I smile at him and put it in my purse..... which comes in handy later when the administration duties takes over 2 hours to complete.  I am too tired to talk much and resort to playing games on my iPad and reading the paper on my daily download.

The pager goes off and we head into the suite to meet Tanya who will be caring for me today.  The suite is filled with comfy recliners, automated drip dispensers on roll a way T-bars and beds.  We choose a chair next to the windows and Max grabs a visitor chair to sit across from me.  I pulled my head scarf off in the waiting room earlier.  The humidity is thick in the air and the air conditioner is keeping up but it still feels too warm with it on.  The suite itself is cold and I pull out my new large pink scarf to cover my head and neck from the cooling breeze.  Tanya will need to find a vein and I figure she would choose the one that everyone else does - right in the crook of my elbow.  She applies a hot compress to my arm to bring the veins to the surface and make it easier to insert the IV tube.  Tanya gives me two steroid pills and an anti-nausea pill before beginning treatments.  Chemo is very toxic and will damage the veins so she will start a saline IV to 'rinse' the veins for 5 minutes before and after the chemo is administered.  She will begin with the first two chemo using a click lock insertion device installed in the IV line for the large click lock syringes that she will use to manually inject into my arm while the drip is still going - Cyclophosphamide and Epirubicin.  After that, she will run the lightly colored yellow 5-FU (5-Fluorouracil) IV drip that can sometimes cause the shock of pain you get with a cold ice-cream.  I do not get that but I do feel the sinuses begin to slightly swell and a light headache later after the chemo is done.  From start to finish is just over an hour.... some patients will be there from 9 am - 5 pm on a series of drips.  There are many different cancer drugs available and cocktail mixes and methods of deployment.  Everyone is different.  Some will keep their hair, while others, like me, will not.  I am grateful for the ladies who carefully buzzed my hair.  I cannot shave or do anything that can open the skin and allow a possible infection to occur.  There are many things to remember about chemo and your personal care and hygiene.  I have a first aid kit in my purse in the event that I injure myself.  It contains a first aid anti-bacterial spray (melaleuca), triple antibiotic cream, bandages and all my medications.  I have asked for a reflux medication to help with the extreme reflux experienced with this chemo. Nausea and vomiting are not an issue as this is dealt with by taking medications for the first few days after chemo.

Max and I are finally ready to go home after getting the medications - all paid for!!!  Thank goodness I took out the extended health care for us from Western!!  We are both super hungry despite the fact that Max was served more cookies in the chemo suite by the lovely volunteers.  For volunteers in the chemo suite.... they will see all of us on our very best day. We head out of the parking lot - I use my credit card instead of obtaining a ticket - easier to use and it works well.  Insert when you enter the lot instead of printing a ticket and inserting it on exit where you will receive a receipt.  Each visit works out to about 7-12 dollars..... yup, expensive.

We head out to the MacDonald's on our way home.  I am going bald and the humid wind blowing over my head feels really weird... and liberating.  We have to go to the pool store on our way and I help choose out a new pool brush and filter nets.  Yes, I am being stared at but in a very polite way.  It's not every day you see a woman with a shaved head.  We get home and I am on the phone with the Victory program to make sure that I can fax the paperwork from my insurance company to them.  I have rigged up one of our phone lines to a fax machine at home and it is sent out immediately.  A call to CCAC and the nurses ensures that I will have medical assistance at home.  I am fighting drowsiness as I am blogging this entry.  I have a headache and the sky is ominous with intermittent torrential downpours.  Max and Paul joke that they are filling up the pool and the pond.  I can hear voices in the kitchen and all the neighbor guys come into the living room to say hi and to see my new doo..... I think they actually admired my dome!!!  Secretly, they looked jealous....LOL!!  They just want to make sure I am OK.  I miss Brenda M. she is not feeling well at all and I haven't seen her in days.  Sending out lots of hugs and kisses that you feel better soon.

William and Paul will stay the night to look out for me tomorrow when Max goes to work!!  I am now really exhausted and my body is begging me to go to bed now that I have taken tonight's meds with dinner.

Rule #11 - if you offend or hurt someone's feelings, whether intentional or not..... do not start with 'I am sorry you feel that way, but'  it is another way of saying that the person you offended is wrong to be offended by your remarks.  Start with 'I am really sorry, I had no idea I was hurting your feelings......'  It is human to err, own what you say, apologize and be real with people.... they will appreciate and understand it comes from the heart...... xoxoxo

Sunday, July 7, 2013

My new look from the Shorn afternoon gathering. 6 July 2013

...... an emotionally exhausting week....

..... in an emotionally charged illness!!!  Yes, while I have come to terms with some things in my life, there are others I am coming to terms with as I arrange to have my insurance policies updated and look into funeral arrangements.  I am not planning to leave any time soon but I needed to consider that it would only be right to look after my family in the event that something happens.  I will see a family lawyer this week to finalize my wills.  I think everyone should be doing this anyway.... I understand that sometimes family will unwittingly order that crazy expensive coffin when in fact, the deceased wanted to be cremated and only because things were not organized and put into place.

This was such a roller coaster of a week and lots of tears when I had to come to the realization that not everyone is as supportive in a journey as others.  If there were any advice I could impart to those who think they are well meaning and would like to express their concern, please note the following points:
     1.  Do not tell the person you are speaking with that you know more about their illness than their doctors or consult with others to prove your point.
     2.  Do not dismiss the importance of being diagnosed with a life-threatening illness by saying "you have nothing to worry about" after telling them your unsolicited and uniformed opinion.... unless you are their physician.... this will make you feel tremendously guilty if they do have something to worry about.  It amounts to being dismissive and hurtful.
     3.  Be warned that if you are not a close family member or friend, you might not like the response you will get.... and you will likely get an earful if not at the time, then later when they have considered your insensitive wording.
     4.  Please just ask how I am and possibly ask what you might do to help.
     5.  Please ask if I am up to discussing my illness.  I am open about it and will likely answer your questions or refer you to my blog.
     6.  Please understand that I am not my usual self, nor are my close family members and friends.
     7.  Please treat me the way and manner in which you would like to be treated.  If you cannot, then do not bother, this is not the time to sort things out as I have enough to deal with.
    8.  Please be kind and only offer if you genuinely want to and not because you feel obligated..... nothing worse than feeling like you are putting others in an awkward position when you are already feeling bad about 'inconveniencing' your family and friends.
    9.  Common sense would dictate that if you have always treated that person badly.... it would stand to reason that you will now hear about it with little provocation.  If you are not genuine and show you actually care, now is not the time to try and make up for that...... you either care or you do not.  Decide and get on with the business of doing the right thing for the right reasons.
   10.  Be brave..... it is hard for someone to face the unknown and they need all the support they can..... not every day will be an easy walk in the park for you or them.   Be real..... life is too short.

I am usually considered strong, resilient and brave..... I do not consider myself to be any of these..... but then, I do not often show publicly what my husband and family already know.  I am sensitive to a fault and will defend myself when under attack by appearing louder and stronger than them.... appearances can be deceiving and if the truth would be told today, the day before chemo, that I am scared beyond belief.  I will put on my big girl pants tomorrow and not look back, only forward as Max, the kids and I navigate towards the unknown in this journey.  We are upbeat and positive for the most part and will try to do our best.  I will need everybody to send strength to my Max and support him and our children in a positive and loving way.  We need only well wishing, love and support as we step into our next chapter.

I wish to dedicate this blog and my love to my soul mate Max.  I love you with all my heart.  I am sorry I am ill and wish you would not have to go through this again with me.  You are my rock and I know you do what you do because you love us too.  I also wish to dedicate this entry to my loving family and friends who have shown such love and support at a time when you knew we needed you most.

I dedicate this entry to Marleen - our life lessons are sometimes meant to open our eyes and grow the soul.  Focus on the important things in life and be happy.  Everything happens for a reason.  I needed you to love me for myself.

I dedicate this blog to Debbie - you make me laugh with your quirky fun sense of humour and your down to earth nature.  I love you!!  I look forward to seeing you soon!!

There are days in this coming journey where the chemo will affect my mood.... please ask me where I am at before getting into a conversation.  Keep it light and happy.... I will learn to bow out gracefully when I am tired or not up to the subject at hand.  It is not personal....  enough said.  I love each and every one of you.  I will keep you all in the loop, until next time....