Tuesday, April 30, 2013

INVISIBLE


Evening in Bellagio, Italy - Fall 2009
I have mentioned that there were several low points on this journey that will always stand out in my mind.  The second one happened the morning after I was admitted to the hospital and put into isolation.  This low point was really bad.  I call it “Silent on the Stretcher”.

I woke up soaking wet because of the fever.  I had been sweating so much that it seemed like someone had dumped buckets of water into the bed.  It was really gross.  There was someone in my room telling me that I had to go for a chest x-ray or something.  I was half asleep.  They said that they were taking me right away.  I didn’t get a chance to clean myself up or anything.  I hadn’t brushed my teeth or washed my face, my pjs were soaked, I was shaking and shivering like crazy, and I was generally feeling like total crap.  Plus I looked like crap.  Remember not only is all of this going on but I’m also bald, pale and puffy.  Really pale and puffy.  Some young porter, or whatever he was called, took me on the stretcher, with his mask on too, and off we went down the hall.

He was a nice-looking young guy and then he saw another hospital staff person, who also happened to be a young guy, and the two of them were talking to each other about their weekend, what they did, the clubs they went to, girls and friends and so on as if I wasn’t even there.  Like I was f*cking invisible.  It made me feel really crappy.  I wanted to scream at them, “Hey I’m right here you know.  Look at me!!  I used to look pretty good.  You wouldn’t ignore me then you idiots!”

Cold Day in
Wakefield, Quebec - 2013
I tried to make myself shrink into the stretcher.  Then I noticed that everyone we passed in the hallway would try not to stare at me but that made it worse and more obvious.  I was a car accident.  Worse than that I think I was a train wreck.  I had become that sick looking person that we all have seen in hospitals at one time or another and felt sorry for them.  Now it was me that had become that “poor sick person”.  That really pissed me off.  I was fine, really.  This was just a little setback and then you can be sure I was going to be back on my feet kicking ass!!  So quit staring at me with sympathy you stupid people.  I can see you, you know.  I see your eyes.  Can you see mine?

The orderly left me in a stretcher line up to wait for my chest x-ray or whatever the hell they were doing with me.  Everyone else in line was about 70 or older. It was getting worse all the time.  While I was waiting and nobody was really paying any attention to me, I decided to reach over and grab my file on the side of the bed.  I thought I should read everything in my charts about myself just to be sure I wasn’t dying that day.  I wasn’t too sure at this point.  Maybe this stretcher line up was actually death row.  I read through my entire file and discovered that there were no plans for my demise that day.  Whew.
Late Afternoon
by Lake Superior - 2009

Finally they wheeled me inside the room where I would wait a bit longer.  Then I saw him.  One of the hospital staff.  Oh for God’s sake!  It was the father of one of Alex’s classmates.  As if he worked there and happened to be on a shift that same day when I was there too.  I don’t know the father very well but since the kids had been at the same school since junior kindergarten we knew who each other was.  I was mortified.  So I did whatever I could to pull the covers over my face.   I turned my file upside down so my name wasn’t showing.  I physically tried to shrink and be as silent as I possibly could.  I hoped he wouldn’t see me and if he did, maybe he would be forgiving and just pretend he didn’t see me and ignore me.  It seemed like forever but they finally took me away in to the room for the chest x-ray.  I had averted that chance encounter.  Another whew. 

Afternoon in Torun, Poland - 2012
Then I had to stand in all my sweaty, puffy, bald, white and feverish glory, in front of yet another young man and get the x-ray done.  When this humiliating experience was finally over I returned to my room to find out that they were moving me to the oncology floor to a private room.  It was a much nicer room, cosier, with a great view of the Christmas tree at the front entrance of the hospital.  Plus Mike was there shortly afterwards.  So finally some positive things after all the crap of the morning.

I was exhausted in so many ways and I think it was only 9:00 am.  I took a deep breath, choked back the lump in my throat, and made the decision to face the day as best I could.  One hour at a time.

Invisible - Bruce Hornsby


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Sunday, April 28, 2013

ALL BY MYSELF


Alex - Northern Ontario 2009
There I was at the cancer centre laid out in “stretcher bay”.  I still could not believe that my neutrophil count was at 0.0 and that they would not let me go home.  It was getting late in the afternoon so Mike decided that he better go home to meet the kids as soon as they got home from school to tell them what was going on.  He wasn’t looking forward to that because he knew it would scare them.  He also planned to get me some pjs, slippers, clothes, toothbrush, and my quilt and then come back as soon as he could.  I knew he didn’t want to leave me there by myself but I told him to go and that I’d be fine.  After he left I was laying there for what seemed like hours, with this stupid mask on, feeling physically ill and so very alone and scared.  I wanted my Mommy.  Really badly.

As soon as Mike left the hospital he called his mother and my Dad to let them know what was going on.  I think he had a hard time when he left me there.  In fact I think at one point he couldn’t drive because he couldn’t focus.  He had to pull over to the side of the road so that he could pull himself together and face the task of telling the kids.  I guess after he told my Dad the phone got passed from my Dad to Sheila and she said that my Dad was already going to pack his bags to come racing to Ottawa.  How did I get so lucky to have THREE heroes in my life?  My Dad, my husband and my son.  Three amazing men that love me so much it makes my heart sometimes feel like it’s simply going to burst.  I know that’s corny but it’s true.

Me & My Dad -
Gore Bay, Ontario 2012
This was yet another difficult thing that Mike had to go through.  It was him that had to deal with the kids and all the emotional ups and downs with them because they didn’t want to worry or upset me.  I have no idea how Mike was able to handle all of this and stay so strong for our children too.  This particular setback was going to be hard to get across to the kids.  He was afraid that they might not believe him and think that things were far worse than what he was letting on.  Mike thought he understood everything that was wrong with me as explained by the doctors and staff at the cancer centre but then he started second guessing that himself.  What if things were far worse than what we thought?  At this time last year our life was so amazing and wonderful.  How could things have changed so fast?  How did we get to this point?  It was like being caught up in a nightmare and he was waiting to wake up to a bright sunny morning.  Now he had to drive the rest of the way home and pull the kids further into the nightmare.

Me - Lake George, NY 2004
Meanwhile, back at the cancer centre, (“ranch” sounds better but it doesn’t work with this story) the nurses were trying to confirm a bed for me at the hospital (attached to the cancer centre) so that I could be moved over there.  The cancer centre was closing down for the day and there was pretty much nobody around anymore except the two nurses waiting for the bed confirmation.  And me.  I felt so bad that they were there so late and probably had families waiting for them at home.  I told them to just wheel me over to the hospital and leave me on the stretcher in the hallway at the hospital and go home.  Someone would get me into a room eventually.  Of course they didn’t do that.  They waited with me and I finally got moved over to the hospital in the early evening.  Mike came back by himself with some things for me and they put me in a room temporarily until something was prepared for me on the oncology floor. 

Since I couldn’t be around any infection whatsoever, I was put in a room by myself in isolation.  Nobody could come in without a mask and gloves on.  Mike eventually left once I’d fallen asleep for the night.  I don’t remember too much of that first evening because I had such a fever and I was fatigued and totally out of it to say the least.  One thing I do remember is how very alone I felt.

All By Myself - Celine Dion


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Thursday, April 25, 2013

NIGHT FEVER

Better Days - East Coast Summer 2010
A few days after my collapse in the hallway, I developed a bad cough and a high fever.  I went to bed that night hoping that the fever would be gone in the morning.  I’m optimistic most of the time.  Quite positive actually.  I think that’s what really helped me through this up to this point.  Humour also helps and I think the combination of humour and a positive attitude goes a long way when it comes to dealing with crappy situations like cancer and other things.  It certainly can’t hurt and I strongly believe that these two things assist in healing and recovery more than some give it credit for.

So much for the positive vibes because the next morning my fever wasn’t gone.  In fact it was worse.  I was instructed by my oncologist that if I ever got a fever that I had to go directly to emergency at the hospital or to the cancer centre.  I had no choice now so Mike took me to the cancer centre in the morning right after the kids left for school.  I had to get some blood work done to see what was going on.

My Father's Garden - Summer 2005
As it turned out, I had a condition called neutropenia which happens when the body makes too few white blood cells.  This is caused by the drugs being used in chemotherapy to treat the cancer.  It is one of the most serious but common side-effects of chemo.  Basically my neutrophil count (that’s the part of the white blood cell that fights infection) had dropped down very low.  Well okay as low as it gets to a level of 0.0.  That’s pretty low.  I was sent to “stretcher bay” at the cancer centre.  That’s the place where I often saw the “really sick people” when I didn’t look away in time.  I usually put my blinders on at the cancer centre because I just never wanted to look around and see all of the patients that were there in varying stages of various types of cancer.  All ages, shapes, sizes, religions, ethnicity's, etc.  I had become “one of those people” in stretcher bay.  I was in the place I tried so hard to avoid looking at but at the same time my eyes would be drawn there.  Like a car accident when you’re on a road trip.  We never want to see it but we all slow down and look anyway.  Why do we do that?  Do we think – thank God that’s not me??  Yeah now it was me.

The nursed informed me that they had no choice but to admit me to the hospital.  They could not send me home in this state.  Basically I had no ability whatsoever to fight infection and they needed to get me back on track.  This came as somewhat of a shock for me because I only showed up with my little purse assuming that I’d have some tests and then go back home.  When I asked how long I would have to stay in the hospital they figured it would be for several days.  Several days?!?!  What on earth were they talking about?!?  I only had my purse with me for God’s sake!  I wasn’t prepared for this.  What about my kids and my family?  How would they get along without me at home to look after things and keep everyone organized?  I couldn’t just stay here without anything but the clothes on my back and my little purse.  However, I had no choice in the matter.  Plus, I think this was a bit of a relief for Mike because then he could be sure that I was getting the best care possible.

Oh yeah, since I had a cough they were making me wear a mask over my face.  That is the hospital policy since the SARS scare in 2003.  It was really horrible to have to wear a mask and really degrading.  I just wanted to hide from everyone and anyone that might look at me.  Or who tried not to look at me.

Night Fever - The BeeGees

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Tuesday, April 23, 2013

I GET KNOCKED DOWN

My Little Hero - 2003

Since I had made it through the first half of the chemo treatments with many side effects but nothing that I couldn’t handle, I figured that the next four treatments would go quite smoothly as well.  I was very wrong about that.  I knew that each treatment would leave me feeling worse than the one before and so far this had happened gradually.  However, after switching from the Doxorubicon (Adriamycin) / Cyclophosphamide (Cytoxan) cocktail to the Docetaxel (Taxotere) for treatment #5, I got beat up pretty badly.  Pummelled into the ground actually.   I mean I was literally on the ground.

So in early December I had my usual blood work done as I always do before each treatment and then had the new chemo cocktail administered just before the weekend.  I left the cancer centre feeling somewhat weak and really off.  Those walks down the long hallway from the treatment room to the outside world were getting slower each time.  I was thinking that the hallway must be getting longer than last time, like in a bad dream.  When I arrived home I felt extremely tired but otherwise not too bad.  I was given some new meds to deal with the side effects of the Taxotere and I took those along with the usual slew of other drugs lined up on my bathroom counter.  (It really was starting to look like a pharmacy in there.)  I went to bed that evening thinking that this new treatment that took about five hours to administer, was definitely worse than any other treatments but not as bad as I had anticipated.

Me and My Boy - LaRonde 2003
I felt incredibly weak and tired for about 48 hours and then all hell broke loose.  I woke up in the middle of the night in so much pain that I just couldn’t stand it.  I felt as if all the bones in my body were going to explode, I felt nauseous, my head was pounding, my mouth was dry, I was aching in every part of my body and I felt like I had been severely beaten or run over by a dump truck.  Or both.  I tried to call out for Mike but I couldn’t get any sound to come out of my mouth.  I was in my bedroom on the second floor and he was all the way in the family room in the basement.  The kids were sleeping.  I kept trying to call out and I have no idea how long I did that for.  It seemed liked hours but it was probably only a few minutes.  Everything seemed to be happening in slow motion.  Finally I mustered up the strength to get out of bed.  I had a hard time standing up and putting one foot in front of the other was a major task.  I managed to stagger to the hallway and then I collapsed on the floor.  I was trying desperately to get Mike’s attention.  I needed help.  I dragged myself through the hallway on the floor and kept trying to call Mike’s name.  The pain was excruciating.  There were several major low points during this whole cancer ordeal but there are a few that really stand out in my mind.  This was the first major low point.  I call it “Helpless in the Hallway.”

When I got to the end of the hall Alex woke up.  He came out of his room and found me lying in a heap on the floor and I was in pain.  It probably scared the crap out of him.  I was so sorry that I’d woken him up and I didn’t want him to be scared but at the same time I was glad that he could then get Mike for me.  Poor little guy came to me right away, “Mom!  Are you okay?!?!  What can I do – let me help you.”  I asked him to please go downstairs and get Daddy.  I don’t think he wanted to leave me alone and he also wanted to be the one to help me.  He wanted to be my hero – I knew that.  He did that once when he was about three years old and Mike was out of town and I had a serious case of the flu.  I remember being so sick that I had no strength left and I wasn’t able to do a good job of looking after him and his sister, who was a small baby at the time, and I had called a friend to help me.  (A rare occasion when I actually asked for help.  I can be so stubborn sometimes.  Yes I admit it okay?!)  Alex was furious that she came to help.  He insisted that we didn’t need her and that he was going to look after me and Tasza.  It was actually kind of rude of him but he was such a little man and I remember loving him to pieces for it.  He was three years old and he was trying so hard to be my knight in shining armour.  He was coming to my rescue again now.  After I assured him I would be okay, he finally went to get his Dad.  Mike was at my side in no time and the two of them got me back to bed.
Alex's Confirmation - 2006

Mike got me the medications I needed and then called the doctor because the pain was so intense that we didn’t know what to do next.  Mike stayed with me and tried to make me feel better and eventually I passed out and slept some more.  In the morning he went to the hospital and got a new prescription for me to help with the pain.  My oncologist decided to increase the dose of medication that I was taking and taper it over several more days so that the next time around I wouldn’t have such a horrible reaction and intense pain.  Thank God because I didn’t know if I could endure that again.

I spent the next few days in a very sleepy state but I started to slowly feel a bit better after a few days.  It didn't last long though.  Things deteriorated again shortly after that.

I Get Knocked Down - Chumbawamba


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Sunday, April 21, 2013

TALK TO ME

One day in the fading days of fall 2006, Mike heard from a colleague at work that Dr. Marla Shapiro was coming to lecture in Ottawa and he thought I might be interested in seeing her.  I was able to get two tickets and I asked my friend Amy to come with me.  Dr. Marla is, in my opinion, an amazing woman that is somewhat of a celebrity in Canada.  She also had breast cancer and wrote a book about her experience.  The doctor became the patient.

Her current bio on the CTV News website is:
           

Dr. Marla Shapiro, MDCM CCFP MHSc FRCP(C) FCFP, is a family physician and the Health and Medical Contributor for CTV's Canada AM as well as the editor of Parents Canada magazine, launched in March 2007.  She completed medical school at McGill University and trained at the University of Toronto for her Masters of Health Science in Community Health and Epidemiology. She holds a Fellowship in Family Medicine and is a NAMS credentialed menopause specialist. She is an associate professor in the Department of Family and Community Medicine at the University of Toronto, where she recently won an award for Creative Professional Activity.  Dr. Shapiro won the Society of Obstetricians and Gynaecologists of Canada/Canadian Foundation for Women's Health Award for Excellence in Women's Health Journalism in 2006 for her documentary "Run Your Own Race." Her book, "Life in the Balance: My Journey with Breast Cancer" was released in the fall of 2006 and is a national bestseller.  For her lifelong commitment to family medicine, Shapiro was awarded the College of Family Physicians of Canada's Award of Excellence for 2008.


When I originally got the cancer diagnosis, I bought a book about cancer.  I also had some information from the Women’s Breast Health Centre, the hospital, and the Cancer Centre.  Friends and family had loaned me books as well.  These provided some medical and technical information and they certainly helped with my learning curve.  However, when I heard about Dr. Marla’s book on TV and in magazines I decided I had to get it.  I made a special trip to the bookstore to buy it and found out that it was just newly released so I picked up a copy.  The book is called, “Life in the Balance, My Journey with Breast Cancer”.  I started reading it right away and found it fascinating and very interesting.  I couldn’t put it down.  It was written from her point of view and I could relate to it so much more than anything I had read so far.  It really spoke to me.  Of course some books were more educational from a medical perspective but this one had some emotional perspectives that I could really appreciate.  It was probably the best book I read during this time because I could relate to it on so many levels.

All dressed up with my handsome son - Summer 2012
Finally the date of her lecture arrived and I was so excited about it. When we arrived I was expecting to see more bald women like me in the audience but there were none.  Well there could have been lots of wigs but nobody was out of the closet except me.  Since I wasn’t getting out much in those days I took this as a night out so I got dressed up.  (By dressed up I mean I was not wearing a baggy old shirt and sweatpants.)  I actually wore a fitted black dress with high heeled black boots.  I even put on my false eyelashes and I looked pretty good even if I do say so myself.  It was so great to get dressed up after spending most of my time schlepping around the house in those sweats.  Anyway, the place was packed with women of all ages.

Dressed up for grade 8 graduation
with my beautiful girl - Spring 2012
Dr. Marla is an excellent speaker and I really enjoyed hearing about her experiences.  Afterwards she was available to meet her fans and sign autographs.  I had brought my copy of her book and went out to get in line for her to sign it.  Ok to be honest we actually ran out to get ahead of everyone one but that just makes us smarter and faster.  Not rude at all.  So there were about 10 people in front of us and many, many behind us in the line.  Dr. Marla was seated at a table and she kind of leaned over so that she could see me better in the line and she gave me a thumbs up and called out, “You rock sister!”  Amy grabbed me and said, “Tracy she’s looking at you!”  So that was awesome and I was so excited to get to meet her that I didn’t say any of the things that I had planned in my head that I would say when I got close to her.  Why do we always get star struck and do that?  Anyway, she signed my book, “To Tracy – You Rock – Best – Dr. Marla”.

After I had my book signed, we went into the reception, ate a bunch of free food, had a drink and then took off.  It was a nice evening out and I’m glad I went.  It felt good to realize that there is an entire community of breast cancer people and I wasn’t the only one.  I obviously knew that but when you are the only one in your usual surroundings you of course feel like the odd one out.  Although it felt good to be reminded that I wasn’t alone, it was also extremely sad that there were so many people touched by this disease.

Thank you for talking to me Dr. Marla.


Talk to Me - Stevie Nicks

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Thursday, April 18, 2013

SUPER FREAK

In early November of 2006 I had my fourth chemo treatment.  That signified the halfway point for the chemo.  The next series of four treatments were to begin in December and would be a different cocktail of drugs than the first four.  Also it was going to take about 5 hours to administer at each visit.  I kept hoping to continue to feel fairly good but was not sure what to expect and how I might react to the next treatments.

At this point I was getting awfully tired at times but I was getting used to the whole bald thing.  There were a few advantages in that I was not in need of any hair products or styling tools, bad hair days, hat head, etc.  Plus it took me no time at all to get ready to go out anywhere.
Better Cocktails - Punta Cana 2010
I was starting to notice that my eyelashes were falling out and my eyebrows were nearly gone.  I think that was worse than losing all of the hair on my head.  It made me look even freakier.  I still used make up on the days that I would go anywhere in public or if I would be expecting anyone to come over.  I even picked up some false eyelashes in case I ever needed them.

There were other side effects that had begun as well.  Whenever I was in a place with bright fluorescent lights, like department stores, my eyes would start to water.  A lot.  I would walk through a store and it probably looked like I was crying like a complete idiot.  I wasn’t and I couldn’t stop it from happening.  It got to the point where I would always carry Kleenex with me.  I didn’t have to worry about my mascara running down my face because I had no eyelashes to put mascara on anymore anyways.  Always an upside if you care to look.

Looking Dumb - Lake Erie 2011
Here’s another weird thing that happened.  One day my big toenail fell off.  That’s right it just fell off.  I was putting on my socks and it fell off.  Well you would think that if your toenail came off it would hurt like hell.  However, it didn’t hurt at all.  It just came off and then I checked out the other big toe.  I just touched it gently and off it came.  Within a few days some of the others disappeared too.  No need for nail polish now either.

I had also developed “chemo brain”.  Although there is still much research being done in this area, chemo brain really does exist.  It is sometimes described as a “mild cognitive impairment” and might be defined as being unable to remember certain things and having trouble finishing certain tasks or learning new things.  To me I was just plain dumb.  I mean really stupid.  Sometimes I would simply blank out.  I could be in the middle of a sentence and forget what I was talking about.  I couldn’t remember common words or I just couldn’t find the right words.  It was like I was searching my word databases in my brain but I couldn’t see anything because it was so foggy.  Or I could be talking to someone and then I wasn’t sure if I was saying something out loud or if I was just thinking it in my head.

Always by my side - November 2006
The problems with my concentration and memory were somewhat frustrating.  Also, if I was speaking to someone it was like it could be slow motion.  I might pause as you normally would at the end of a sentence but then it seemed like it might be a really long time before I would continue speaking.  I never knew if it was really like that for the person I was speaking to or if it was just like that in my own head.  It may have been a matter of seconds but it seemed to me that it was forever before I could get back on track.  I often felt like the other person would be staring at me waiting for me to carry on.  That was strange and embarrassing and so not in my control that it was another reason to avoid social situations.  I didn’t let it stop me though.  I had no problem getting out there and coming across as a total dumb ass.  Now I was bald and dumb.  Oh yeah and puffy and fat.  Whatever.   It was not forever, just for now.

I was very blessed that my husband did not seem to care about my looks and my super freakiness in the least.  He just kept loving me the way I was.  So I was fat, bald and dumb as a doorknob but I was loved.  Truly loved.

Super Freak - Rick James



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Monday, April 15, 2013

WAKE ME UP

Me - Fall 2006
Because I had cancer there were others in my community that were learning about this disease, re-evaluating things in their own lives and taking steps like getting a mammogram.  I guess by me having cancer it was a wakeup call for a lot of people that this could happen to anyone at anytime.

One story is that shortly before my fourth chemo treatment, I was out watching my son play hockey one day.  One of the hockey Moms from the team approached me to tell me that I had become a subject of discussion at their house one evening.  I asked her to tell me about it because she had made me curious.  Apparently her 12 year old daughter had asked why I had shaved my head and why did I want to be bald.  Her Mom explained that it was because I had cancer.  Her daughter asked what kind of cancer I had.

Her younger son, a friend of my son’s from his hockey team, apparently looked at his sister like she was a complete moron and said, “Well DUH, what do you think?!?  Tracy has cancer of the hair of course!!”  Oh that cracked me up and I thought it was so funny.  So she had to sit down and really have a discussion with her kids because she realized that they knew next to nothing about cancer and the treatments.  She had to let them know that it wasn’t the cancer that had made me go bald but the treatments for the cancer and that it was actually a good thing because the hair loss showed that the chemo was working.

Embrun Panthers at Scotiabank Place - Ottawa 2006
It occurred to me that most school-aged children don’t know very much about cancer or diabetes or heart disease or pretty much any other major disease.  I guess it is not something that is really taught in schools nor do we talk about it at home much.  Until it happens to someone close to you.  I knew pretty much nothing about cancer and treatments for cancer until it happened to me.  Many people are afraid of things they know nothing about which is why they often do not know how to react to it or to someone that has been diagnosed.  I guess it is up to us to learn about prevention and screening and ensure that we pass on this information to our children at the appropriate time.  We need to educate them without scaring them.  Since I was diagnosed with breast cancer, there were messages being spread that affected others around me in ways that I could never even have imagined.  I hoped that by my having to go through this it would somehow be helping others.  Even educating others.  Waking people up!

Mes enfants et moi - Paris 2012
Another situation that comes to mind happened months after the treatments were done.  I ran into an acquaintance who is a teacher at my kids’ school.  We were both at the bank and she thought it ironic to have seen me there that day because her and her husband and made a decision to bite the bullet and take a trip to Europe for the summer with their two kids.  She said it was because of me.  It was because I made them realize that this could happen to anyone at any time and they were all healthy and able and although it was an expense that was a bit out of their budget, they were going to do it anyway!  I told her I was very happy to have helped them spend their money and have this great adventure to share with their kids and create some memories to cherish.

Yeah it sucked to have cancer but it really felt good to know that it might in fact be making life better for others.  Weird eh?

Wake Me Up (Before you Go-Go) - Wham

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Saturday, April 13, 2013

STOP AND STARE

Tracy
The messages I was getting from friends and family really helped me to continue my positive and optimistic outlook each and everyday.  Most days were pretty good but I had some times that I would be out in public doing ordinary things like going to the grocery store, pharmacy or the post office and people would often stare at me.  After all, I was bald, so most people would assume that I had cancer and was probably dying a slow and horrible death.  I know because that is what I used to think when I would see a bald, young female with very pale skin.  I would feel sorry for them and either stare or purposely look away and ignore them which I think now is even worse than staring.

I found it hard because on one hand I was trying to be positive and I wanted to be treated the same as anyone else but on the other hand I wanted to scream at people sometimes.  Once I was in line at the pharmacy and there was a child in the line ahead of me with his parents and the child was openly staring at me.  I smiled and he looked like he was scared to death of me.  My first instinct was to stick out my tongue and then yell at the kid, “What is wrong with you?  Haven’t you ever seen a bald lady before?  Don’t you know that I have cancer?  STOP STARING AT ME YOU LITTLE BRAT!!!!!!!”  However that would have been rude and inappropriate and probably would have marked him for life.  Not to mention that I’m sure his parents would have freaked out on me too.
Tasza
My second instinct was to just run out of the store and get into my car and drive home as fast as I could and go into my house where I was safe and never go out in public again.  I didn’t do either of those things of course.  I just stood in line feeling those little beady eyes on me and trying to breathe normally and stay calm and act like everything was perfectly okay.  I took some deep breaths, swallowed the lump in my throat and made the decision to just try desperately to act normally whenever this scenario might come up another time.  I didn’t want to hide away.  Well maybe I did, just a bit.  But I wasn’t going to let this stupid cancer do that to me.  I was too stubborn for that. 
Alex
Another time I was shopping at a store and an older lady, probably in her late 70s, came up to me and touched my arm and point blank asked me if I had breast cancer.  I was a bit taken aback and I suppose I could have said that it was none of her damn business but I just said, “Yes I do”.  She said to me, “Don’t you worry.  My daughter-in-law had it and she’s going to be okay.  You’ll get through it and you’ll be fine.  Now you take care of yourself.”  I just said thanks to her and smiled, weakly, and stood there and watched her walk away.  I wasn’t sure if she was trying to make me feel better or trying to make herself feel better.  I knew she meant well and I appreciated her words but I also kind of felt like my space and my personal struggles had been violated.  This emotional yo-yo was an element that I hadn’t really been prepared for.  These little situations could really play on your mental and emotional state if you let them.

People I did know would often ask me how I was doing.  Others would ignore the elephant in the middle of the room.  Still others would cry when they saw me.  Some were simply curious and would ask if it was okay if they asked me things about the cancer and the treatments.  That was fine with me.  It really didn’t bother me when they asked that way and I appreciated this approach the most.
Mike
 It’s always a tough thing to know what to do or what to say.  It’s kind of like when you see someone who has recently had a loved one pass away.  You just don’t know how to deal with it because we are all so different in how we react to these delicate situations.  You don’t want to be too cliché but we all seem to get pulled in different directions as to what to say and what to do.

I think the best thing to do is to just be yourself and hope the other person will understand that your intentions are sincere.

Stop and Stare - One Republic

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Thursday, April 11, 2013

JAR OF HEARTS

My Message Jar

I am very lucky to have some really great friends.  One of them is my friend Amy.  At the time of my chemo Amy was a very busy lady with three kids under 8, a full time job, tons of activities with her kids including hockey, and yet she somehow found time to do something very special for me.  I had no idea what she was up to.

One day she came over for a visit and she brought me an amazing gift.  It was a message jar.  Never heard of it?  I hadn’t either.  But it is fantastic!  It really is a wonderful idea and totally comes from the heart.  It is a clear, glass jar with a lid.  It is about 10 inches high and about 5 inches in diameter.  The jar is filled with small pieces of paper rolled up and tied with tiny pink ribbons.  Each piece of paper has a message on it from one of my friends, family or colleagues.  Amy had acquired a copy of my email address book from my husband and then she had sent an email to everyone asking them to contribute a message for me.

She then printed them all, cut them in strips, rolled them up and then tied them with pink ribbon.  I have no idea how much time that took – especially the ribbons.  What a painstaking, tedious and frustrating job that must have been.  That in itself was a pretty clear indication that Amy really is a great friend or that she is just plain crazy.  Anyway, the messages were quite something.  Some were funny, some were sayings, some were little memories of times shared with the writer, and some were of hope and inspiration.

Amy & I - 2003
I have read and re-read these messages of encouragement, hope, strength, friendship and faith many times.  I imagine I will keep the jar close by for many years and turn to it whenever I might be in need of a little lift, a good cry, or a good laugh.

Here is a taste of the types of things people wrote for the jar of hearts (keep in mind that a couple are probably quotes from famous people but in most cases that information was not referenced).

Amy - Life is not measured by the number of breaths we take but by the moments that take our breaths away.

Rosanna - A teacher and our school secretary are organizing a pink day this month.  I talked to my class about “Breast Cancer Awareness Month” and about charity and friendship and you.  Everyone is being encouraged to wear pink that day and at first the boys were flat out against it!  “Why not purple?” they said.  After I told them that I had a friend who was recently diagnosed and going through treatment for breast cancer one boy came up to me at the end of the day and said that he had changed his mind and that he would wear pink and lots of it.  I can’t wait to see it.  I’m having a contest on Friday and the pinkest person gets lunch with me (how lucky they are).  I’m also going to plan other pink activities.  Some kids knew lots about breast cancer and some knew nothing, but they were all able to relate to struggle and friendship and overcoming obstacles – including wearing pink for a day.

Jennifer - When you come to a road block – take a detour. 

Lynn - I am struggling in my effort to find any words of wisdom or even solace and for that, I’m sorry.  What I’m not struggling with however, is the knowledge that you have overcome heartache, loss and disillusionment in your life before and have met it head on with grace, dignity and strength of character.  Of that, there is no doubt.  Know that many people are thinking of you, praying for you and are literally, only a phone call away. 

Rich - Your tenth anniversary at our place, drinking daiquiris in the backyard in the kiddie pool a.k.a. “spa” – we’ve never laughed so hard!

Vicky - How’s it goin’ eh ? 

Arthur & Christine - Every person that has had some deeper contact with you will attest that you are without a doubt the most generous soul we know, you put the human in human being and you probably don’t have a lot of time for yourself because people gravitate towards those they admire and who make them feel good.  You are one heck of a cool tough chick Tracy…not to mention you managed to domesticate that wild horse which is my lovely brother Mike, I believe they have a category in the Nobel peace prize for that kind of thing.

Stefan - I always thought that there was strength in numbers…you proved me wrong.  I admire you.

Walter - I was shocked to hear about your condition and will be praying for your healthy and speedy recovery.  I’m assuming you caught this from Mike…see I always knew you would have been far better off with ME!!!  Love and prayers. 

Anne-Marie - How do you get 10 good looking men in uniform to respond to you instantly?  LOCK YOUR KIDS IN THE VAN (by accident) & CALL 911.  Then watch the friendly firemen in action.  Ha ha ha ha ha…..I laugh every time I think of this, you crazy nut…Love and Laughter Always. 

Vida - Your positive outlook on life is a true inspiration to all of us.  Your attitude and determination is a lesson for all.  Thanks for being YOU!!

Sheila - Pick the friend who not only wants to ride with you in the limo, but who will also take the bus with you, when the limo breaks down. 

Amy & I - 2010

If you have a message you would like to add to the jar, please note it in the comments below (as “anonymous” if you want) or send me a message at tebotarnowski@gmail.com and I will be sure to include your message.  That jar will be around for years to come.


A heartfelt thank you to Amy for this incredible gift.


Jar of Hearts - Christina Perri

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Monday, April 8, 2013

CHANGES

Hippie & Nerd - Halloween 2006

After treatment #3 I spent a couple of days feeling pretty crappy.  Most of that time I spent in my room reading and sleeping.  It was certainly not a nice way to feel and it is very hard to describe.  When I was awake I didn’t really feel like I was awake.  It was like being in a nightmarish fog where I couldn’t quite focus on what was real and what was me actually sleeping.  Luckily it only lasted for about two days and then I sort of came out of it.  It was like I just suddenly broke free and then I felt better each day after that.

Punk - Halloween 2006
Thankfully I started to feel as back to normal as was possible and was able to enjoy Halloween with my kids for the most part.  I dressed up as a hippie because I wanted to have long hair and I went to a Halloween party at Tasza’s school that the grade 3 classes were having.  Everyone was in costume so I was able to blend in with everyone.  Tasza was dressed as a little nerd.  For October 31 she got to be a nerd again and Alex was a punk rocker.  So much fun to be whatever you want!  Mike and I also went to a grown-ups party and I was a vampire sort of creature and Mike was Jason.  He started out as a hippie but couldn’t handle the wig!  I guess bald is better for him.
Lovely Couple - Halloween 2006

It felt good to get out and do things but part of me also just wanted to hide away until this was all over.  I had one more treatment left with the current chemo cocktail and then the mix was going to change.  The last four treatments were also going to take about 4.5 hours to administer.  It was really starting to worry me how much longer I would continue to feel fairly good and I had no idea how my body would react to the next chemo drugs.  I figured I would find out when it happened.  What else could I do?  I knew that one of the side effects was weight gain so I had that to look forward.  Bald AND fat!  How lucky could a girl get?  Changes were going to happen.

One of the books that I read during this time, “Life in the Balance”, by Dr. Marla Shapiro really spoke to me.  Dr. Marla is somewhat of a celebrity in Canada as a medical consultant on national news programs, host of a TV show, a writer for a national newspaper, and has her own family medical practice.  It is the story of her journey with breast cancer.  Her book really
inspired me and provided a story that I could relate to.  When I found out she was coming to Ottawa I bought tickets to see her lecture.  The Ottawa Jewish Women's Congress had invited her to speak about her book and her challenges with breast cancer in November.  I was really looking forward to it because her treatment plan and medications were similar to what I was experiencing.  She also had her surgery after the chemo like I was doing.

As much as we were getting sucked farther into cancer world with each passing day, the rest of our life kept us going to places in the outside atmosphere.  Our kids had hockey tournaments and Mike was doing the travelling for the out of town locations.  I looked after the local ones but I was quite aware that things were changing.

I was changing.  I was tiring easily and had less energy than I was accustomed.  I guess I could expect more changes to come.

Changes - David Bowie

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