I thank the Lord for the people I have found

Elton John - Mona Lisas and Madhatters

I am truly aware of the love and support that has been extended to me from the people in my life.   So many people - family, friends, co-workers, team mates, neighbours current and past.   These are all the people I have found for which I truly give thanks.

They may not know that just by being with me in the moment, sending me their energy and blessings, makes me stronger.   I feel the love.    I will call on my people - oh my God I'm starting to sound biblical. Retake - I will send out signals when I need help, a good walk or shoulder to cry on.  Have patience - I know you are there.

I'm taking you along with me on the ride.   I expect there will be both 'ups' and 'downs' along the way, but will cherish and focus on the 'ups'.   Knowing that in the end, the result will be better health for me.  The chemo treatment may include many medications - some that may sound pretty scary, side effects and risks but the ultimate reward is victory over my cancer.  So I will consider that they are some of the tools I need to succeed.

Friday is the start.   It's going to be a crazy train ride so I hope you are all ready.

All aboard!   Ha ha ha ha ha ha haaaa!    - enter metal guitar rift - Ozzy Osbourne

Making a list, checking it twice

Santa Claus is Coming to Town - J. Fred Coots and Haven Gillespie

Nothing better than a pending operation or known period when you will be out of commission to drive you to get things done.      I typically make a lot of lists, only due to the fact that my increasing age is making it harder to retain such items.     My blackberry has now become my second brain and a more efficient one at that.   I have lists or notes about everything neatly stored on that little device.   It's much more efficient that scraps of paper that I used to carry and repeatedly lose.

So the lists now are the things I need to get done before I am not feeling well, low energy etc. due to treatment but also those things that will allow me to free my mind and hand off to others without worry; - de-stress.   I've been working consciously and subconsciously on these for the past 3 months, ever since the lump was identified as 'highly suspicious' with the ultrasound.   In no particular order:

1. household purging.   I am in a continually state of purging at home.   It's like therapy to go through closets and cupboards and pull out all those things that I no longer need or use or best of all the things I was saving 'just in case'.    It takes a lot of energy both to due the sorting and then to redistribute the items.   Many trips with my 'house slaves' (aka fondly known as my children) to the thrift shop later I feel the house and my life that much lighter.   
2. finishing up the renos in progress.   I've had to draw on some of tyrant in me to move things along in areas where I don't have the expertise.  I have to keep reminding myself that I'm not hiring these people to make them my friends.   I've even had to have a few harsh mental discussions with myself to get the finishing done on the painting.  Happily, we're 99.9% done.
3. income tax.  I'm pretty much complete based on the receipts and T forms received to date.  The most efficient year I've had yet.  Next up getting the kids to complete theirs which is a breeze but also a life lesson. 
4. work projects.   Complete what I can and establish the base work for those projects that will continue when I'm not working.   Learn to let go of the work - surprisingly, that's becoming easier to do than I thought.   
5. revised fitness routine.   Through surgery and recovery I've had to drop much of my fitness routine.  No soccer games or practices, limited running - honestly - only twice.   Walking and hiking continues but not as much or as regular.   I need to establish a new routine to sustain me for the next - oh, let's say, year.  One that will give me energy rather than tax me or put my health at risk.  No gyms - too much potential exposure so that means walking -air is good and exercising at home.  Maybe I'll pull out the wii again and get back on the virtual skateboard.
6. clean up e-mail.   It's amazing how much e-mail I accumulate daily from mailing lists I have been focusing on unsubscribing to everything that comes my way to cut down both home and work in box volume.   It's kind of like purging my closets.   
7. garden clean up.   This is a leftover from the Fall, when I lost interest in cutting back plants and as they completed their blooms for the year.  There are always a few plants left to wilt and turn to black mush with the cold and wet winter.    
8. passport renewal.   No I don't imagine I'll be travelling anywhere soon but the passports will expire in a month.   No hurry really to get them updated.  The need to act now is to get my photo taken.  Taken before I show the effects of chemo and thus have a full head of hair.     
9. driving lessons.  Not for me but the kids.   Getting them on track for licenses and getting in some driving time.  The snow didn't help this weekend although it would have been a good experience but they aren't ready for that yet.    Should have two new N's in the house by the beginning of summer complete with classroom hours.

It's very much like getting ready for a vacation - well, in my case a different journey.  Although I complained about the wait to get into a treatment schedule, I am thankful that I have had time to get through the list.  It enables me to free my mind and energy and redirect to healing and health - the most important stuff.

One Week

One - Week - Barenaked Ladies

It's clear that the actual song does not always mean anything....it's the words that spark it.- 'one week'.

So, one week until treatment begins.  Yes, I have a treatment plan.  Who'd have thought anyone would get excited about starting chemotherapy.  Well, actually, there are those who would be ecstatic about that opportunity.  Those who have cancer but have no known treatment, those who can't tolerate treatment or those who don't have access to or can't afford treatment.   So, I consider myself one of the fortunate ones.

The anxiety leading up to the appointment was huge.  Not about having treatment, the diagnosis or the drugs but rather the not knowing and not feeling recognized in the system.   I felt it all drop once I left the appointment.

My treatment plan is long - 12 weeks or so of active chemotherapy, then surgery and radiation and ongoing treatment for a further 9 months.   There is still some refinement of the timing and make up of the medications to be included in the chemo cocktail but all will be confirmed as the final tests are completed.

That one week will go quickly.  Echocardiogram today, CT scan Monday, 'chemo school' Tuesday, oncologist appointment Wednesday and then first chemo Friday.

They say if nausea takes it's toll, I will be sick Monday.  They give you anti nausea medication and it sounds like it works so I doubt this won't be a weight-loss plan.   Hair loss likely by the end of March.   I always joked that I could never go bald because I have such a lumpy scalp - it freaks the kids out.   Well, be careful - Never say Never.  

The kids are coming to chemo school with me.   I'm glad that they will be there with me and will become familiar with my new 'second home' for the next months.   It will take the mystery and scariness out of it all.   We'll be going through this as a team and I've got super teammates.

Get up, stand up, Stand up for your rights. Get up, stand up, Don't give up the fight

Get Up Stand Up -  Bob Marley and Peter Tosh.

This past couple weeks has felt just like that - a fight.  A fight to move through the bureaucracy of the medical system, receptionists, overworked medical personnel, time, emotions - you name it.    It has been many weeks since my pathology report reflected that I have high grade cancer which among other things means potential for faster growing and earlier spread.    I know that there are still cancer cells in my body and they are doing just that - growing and possibly spreading - so needless to say somewhat anxious about any delay in starting the next stage in the battle to stop them.

I've drawn on friends and resources - all that has been offered.  I called and called the Dr.'s offices and clinics, sent e-mails to them, met with a few of them and walked into the office without appointments to get answers.  I've left tearful messages and vented to any health professional who would listen (apologizing profusely afterward of course).  Things are moving but it seems to be only at a glacial speed.   Each minute now seems like a countdown.  I hold such hope in every phone call and visit with the Dr.  

I'm treading on thin ice between pushing every button to get results and pissing off the medical professionals that I need to have on my team to get me through the fight.    I don't like being the bad guy or the troublesome one but at the end of the day I don't really care if they like me - if I get the treatment I need and deserve.  

In this process I have some wonderful allies - inside and outside the medical system.   All who are cheering me on, sending me powerful thoughts, and most importantly giving me insights and connections that keep my energy flowing.  I've found an advocate who can speak for me when my energy wains or have lost my ability to break the boundaries.  Thank you!  Thank you!

It would be so easy to give up and sink deep into the emotions.  I'm not ready to go there but it grabs hold now and then leaving me with moments of feeling powerless.  

Tomorrow I hope - no I will demand - to get a timeline to start treatment.   If only I could make the minutes pass more quickly until then.

Dancing in the Streets

Dancing in the Streets - Marvin Gaye

A couple weeks ago my daughter and I were driving over the Burrard Street bridge on the way to Granville Island.  A wonderful place to spend a Sunday afternoon.  While crossing the bridge I watched a woman - in her late 20's skipping - wildly skipping likely prompted by the music from her headphones and perhaps the warmth of the mid winter sun.   Not a care in the world, enjoying the day, the freedom, the sheer joy of skipping to the music.   She progressed into a series for twirls, arms outstretched, propelling her forward.  Dancing and singing.

She wasn't thinking about her next day, next hour or next minute.  She didn't care how others saw her, whether they judged her, whether they thought she was off her rocker.  Just enjoying the music and the moment.   I saw her for less than a minute yet her smile sticks with me still.

I want to let myself be that woman on the bridge from time to time.   I want to spend more time smiling, skipping and twirling than I do planning, worrying and thinking.   It begins with a bit more dancing in the kitchen and singing out loud while driving,  despite the strong protests of my kids.

Ch Ch Ch Ch Changes

Changes - David Bowie

I'm not intentionally taking the song title route for each post.  It's just that when I come up to naming the post whatever rings out to me always seems to spark a reminder of a song.   It just works.   This one Changes by Davie Bowie.

The diagnosis of cancer has changed me.   I don't feel like the same person I was a few months ago.  I look at everything differently; I feel different.   Amazing how one word can do that.   Maybe it's just a realization that I have changed over the past years and I'm in a new stage in my life.    It feels good, feels peaceful.  I think I'll like it here.

Could be a temporary feeling - a checking in of sorts - seeing where I'm at.  Not related to the diagnosis at all but rather just an acknowledgement that I've passed through a door, a one way door.   Like falling in love for the first time, holding a newborn son or daughter, losing a parent or partner.   My world is different.   It has changed.

Now I want to bring on even more change.     Where I focus my time, daily priorities and routines and diet.   Not uncommon for me to shuffle the furniture around in the house but it has been a obsession of mine over the past months to completely change and personalize my bedroom. To make it match this new version of me.

I want to try new things, build on this new stage and make it noticeably different from the last.
So I will continue to shuffle around priorities, energy and focus through this next stage starting out with the little speed bump in the road that this diagnosis brings.

Radioactive I'm Radioactive

Radioactive - Imagine Dragons

I can hear some of you singing that tune - well, maybe the ones under 40 - are there any of you out there?

More radioactive injections this week with the bone scan.   Funny, as you are getting injections to prepare for the scan - knowing that you have some sort of medical condition that calls for the scan  - they ask you if you will be flying anywhere in the next two weeks.  Kind of a casual question in conversation.   Hello - uhh no - I was just diagnosed with cancer and still don't know how it will be treated so I'd kind of like to get this sorted out before I take a trip to Vegas (which by the way I am committed to never seeing).   Then it sinks in - they don't want to alarm you by telling you that you are carrying radioactive particles.    I'm tempted just to book a flight to Victoria to see if I set off the scanners at the airport.     Maybe I should wait until my CT scan to get a real buzz going.

Behind the blog name - Name Change

Name change.  The original name of the blog was Someday we'll look back on this and it will all seem funny.   The line in the title is from a Bruce Springsteen song.   Nothing can be wrong when Bruce Springsteen is singing.

After sharing the blog I came to realize that the name was for me - but didn't work in the sharing environment and I wasn't sure how people would react - so - name change to Sharing my journey was more fitting.   Still hold that Bruce Springsteen song in my attitude toward this new journey so Bruce - you're still with me.

This blog is about my cancer journey.   Cancer is ugly, it's everywhere, it ruins lives, it takes away people we love, it puts people in hardship, causes intense stress and anxiety.   There's also another side to cancer stories.    

When I think back on my memories of my parents who both died from cancer each after a 7 year on and off battle, I don't think of the pain and ugliness but rather the good things, the funny stories, the positive things it brought to me and my family.   I miss my parents terribly and most right now.  

Cancer took our parents away from us as a family but it also brought us together, it made us stronger, it made us take stock in what was important in life and stick tight to our dreams and values, it taught us how to handle the horrible times and know that we would come out of it ok in the end, changed but ok.   And most importantly we learned that it was ok to laugh in those times and celebrate life. 

I don't remember how my mother looked while going through chemo but I do remember the funny things she would say when she was on medication or had hit the tipping point of listening to others complain.   I remember the stories we'd share at family dinners we'd try to have nightly after a day of spelling each other off in the hospital.  I remember after she died that a few of us got lost on the highway trying to get home.

I choose to focus not on the pain, the discomfort, the sickness, the diagnosis, the survival rates but rather on the journey and the good stories, the lessons, the sharing, the love and the strength that we find in ourselves as individuals and as family and friends.  And that during this journey we will find many opportunities to "Look back on this and it will all seem funny".

Down Day

Saturday was downer day.  One of those days where every person I saw I was saying under my breathe 'Why the fxxk don't you have cancer'?   I was throwing it out in my subconscious to everyone in particular the smokers, those carrying a few extra pounds, whiners, teens eating McDonalds,  children, seniors, small rodents - really - the message was out to everyone.  Ok maybe not children but then it means double cancer for rats.  

Random thought: do rats and mice naturally get cancer or is only because we infect them with it while we're doing research?  
 
I put out the warning to the kids to expect negativity from me all day.  A bit of anger and a lot of feeling sorry for myself.   I figured it was good to get all the downs in one day rather than spread out so let it all pour in.  Washed it all away with a long hot bath and a few tears.  Release - very good.

I was on the uphill climb and then I discovered I had a rash all over my breast - oh yeah..that's just what I needed.    The rash progressed through the weekend into an irritated red mass moving towards itchy.    By Sunday in the middle of the night I would have performed my own mastectomy had someone handed me a sharp knife.    Self medicated with Tylenol to sleep but still left me with the rash.

Considering my diagnosis, a clinic likely wouldn't want to touch me so as not to mess up my pending treatment.  Got on the phone Monday morning to both oncologist and surgeon.   Ended up with a prescription for antibiotics for the infection in my breast.   Guess I was running a slight fever - feeling the fever now and antibiotics working - like I'm in a bit of a fog which is,  surprisingly, quite pleasant.   Think I'll hang here for a bit.  Yes...I'm good right now. :)

Diagnosis to date

I realize now that I haven't really told you much about my cancer diagnosis.   Leaving some of you quite blind I'm sure.     So for the record:

T2N1a - ER positive -

grade 3 (which is incidentally the same level of conservatory piano I have completed) which is based on it's size and the fact it has spread to the lymph nodes.

In layman's terms (and I apologize to anyone with real medical training for my very rudimentary description)   A tumor 2-3 cm.   1 out of 2 lymph nodes removed show cancer cells.   High grade cancer which has multiple components.  Not going into that.   Estrogen positive which means it reacts positively to any estrogen in the system.  Margins for the lumpectomy weren't clear so that means further surgery at some point.

Because it has spread to the lymph nodes chemotherapy is the course of treatment.  The make up of chemo meds is based on the make up of the cancer cells.   There is still testing being completed to confirm that exactly.

Radiation would also be provided to kill off any cells that might be lingering in the breast and underarm area.

Because it's estrogen positive, hormone therapy would be prescribed for a 5 year period.

It just seems so normal now for me to say that.   Guess I'm getting to acceptance.

Adding to the team

Next visit was a meeting and registration at the chemotherapy clinic.   I am fortunate that I live very centrally and can not only walk to my doctors appointments - GP, surgeon and oncologist  - but also the treatment centre for my chemotherapy.  No long drives or traffic to worry about when I'm not feeling well.

Through a phone call to the BCCA office I hooked up with the Patient and Family Counselling at the local clinic.   There I met Iris who introduced me a number of other resources for both me and my children to carry us through the journey.  But most importantly she listened to me and heard what I needed even though I might not have expressed the need.   Finishing up with a big hug.

Quick tour of the chemo clinic before leaving where I saw many of the others on my extended team - other patients receiving chemo treatment.   They all sat quietly in their beds, reading but also glancing up as Iris walked me through the check in routine when I come for treatment.   Silently I heard their messages - 'welcome', 'don't be afraid', 'we're in this together'.     I wanted to hug them all.

Got a big team behind me on this one, family, friends, drs, other patients....the list keeps growing and each member adds strength to the fight.   I'm not in this alone.

My new teammate - my oncologist

I'd heard from others that the visit with the oncologist is emotionally and physically exhausting and it's true.    I was wiped at the end of the day.    I was expecting to come out of the appointment with a plan  - a schedule - my treatment mapped out.   Not so.  Still more testing to be done to get the treatment plan in place.  A little bit of a let down but then I'm not sure I would have liked to have the appointment go any other way.   Although I might think that I was ready to start treatment next day I'm not yet ready for that, emotionally or physically.

I went into the meeting with my binder filled with my pathology reports, my summarized diagnosis based on what I'd gathered to date, a number of pages with questions and a red pen to scrawl down answers and comments from the Dr.   I was armed and ready to battle this disease.

While I was disappointed somewhat that I didn't come out with clear schedule of treatment, what I did get is a confirmation of my diagnosis (what is known to date) as well as confirmation that I was doing well in grasping the cancer language.   So, my work to date informing and educating paid off.  

Guess I was a bit ahead of myself.  This meeting was to become a first in a long series of meeting and and discussions with my new partner.    Don't want surprising news from the oncologist - unless they can tell me the cancer has mysteriously disappeared.    I hope that I go into each discussion knowing where I am in the journey, prepared for what will come from those talks.

Learning the Lingo

Cancer is a big word.  Fortunately most speak of it only in that singular component.  Those of us living with it or sharing with a family or friend know that it is so much more.   It's a whole new language, a very powerful language.  The more of it you understand, the more you can take part in managing your care, treatment, emotions about the disease.

So, I was thrown back to school to learn a new language once the diagnosis was provided.   My surgeon provided an invaluable package from BCCA including the book The Intelligent Patient Guide to Breast Cancer.   I hesitated at first to take on this book.   Taking it on means that I was owning the diagnosis.  So at first I just skimmed through a few pages or select chapters to become comfortable with the whole idea.  Once in, I was ready to take on more and more each day.   To the point where all I want to do at times is research, research, research.

From the book, BCCA site and many other sites were the secondary sources.   Now armed and comfortable with the terms I could take on my pathology report.   I learned each term and measure, first going through the surgical pathology report with my surgeon.   Once I had that figured out, I wanted more.  So now on to getting a copy of the initial biopsy report.   Now I had a fairly complete picture of my cancer.

Great, great resources on the internet right down to how to read your pathology report.   I think back to the cancer experiences in the past when internet was not available - except maybe to the U.S. military.    It would have been a blind journey through the world of cancer.   A much more frightening journey.

If I am to take this journey - I am grateful to be taking it while connected to the wired world and other resources available now.     I am thankful for those who have shared their journey and their knowledge to empower others.