Western education 2013

Friday, June 28, 2013

..... yesterday continued......

..... with a call from the oncology office.  Could I make it to an appointment with Dr. Younis this afternoon at 2 pm.  "Yes of course I can," I reply, looking up and over to Sara who is working with me at my house.  I hang up and feel the tightening in my belly, I did not expect to hear from his office for a few weeds.  I look at Sara and neither one of us is saying anything.  I text Max to ask if he wants to make it to the appointment and he texts back immediately and says he will come with me.

Sara is a godsend, a dear friend and the best damn partner and assistant a woman could ever hope to have.  We have earned our relationship, been deeply honest with each other and we can almost read each other without saying a word.  She doesn't say it but I know the look.... we are both strong women who face a lot of what life throws at us head on.  Today is no different as we return back to work after the short distraction.  She is my sounding board and diligently questions the material I am presenting her with.  We begin the arduous task of tweaking and re-tweaking to make this the best it can be for the students this fall.

Max arrives and Sara packs up.  She will return in the morning to continue our task.  She wants me to keep her apprised of what the outcome of the meeting will be.  She knows that I do not want to even think about being on chemo at this point.... and the crappy life you live with the side-effects and brain fog.....

The sky is ominous and the air is thick with humidity.  It has been a lousy spring and working its way to being the worst summer in years.  Max and I hold hands and I think I am squeezing a bit too hard as he tugs it away and then reconnects.  I know this routine in my sleep as we book into the main reception in A building - Cancer Clinic in Victoria Hospital.  The receptionist asks me if I have been there before?  Yes.  She then retrieves a 2 inch thick folder and proceeds to write on the top page.  Max wants to know if it is all my information..... yes.  I jokingly tell the receptionist that I have been to visit a few times, she looks up and smiles, hands me the traditional blue pager and wishes me a good day.

It gets quieter in the afternoon as most appointments are in the morning, so it is easier to find a seat.  I know that the doctor has made me the last appointment in the afternoon from the sparse audience in the waiting room.  The radiation gong signals the end of another person's journey with radiation and the room responds with applause as we pick up the print out of 'how are you feeling today?'  Ah yes, the 12 question questionaire that asks you about nausea to mental well-being.  Are you anxious today?  I put a 6 out of 10.... probably the highest mark I have put in so far..... hell yah, I am scared beyond belief but you wouldn't know it as I totally beat Max in a game of Othello on my iPad. The lady across the way asks about the game and then mentions one she loves to play.... Sequence.... I will have to look it up.  I ask her if she has played Mille Bourne?  She has not been able to figure it out and I tell her that I have the iPad version which guides you through play.  Max does not want to play another round of Othello.... he only has 3 white discs on the playing field.  We move on to virtual Yatzee.  What I would have done to have an iPad 4 years ago!!!  I download my newspaper every morning from the Free Press.... $54 per year!!

The pager goes off and a familiar nurse steps forward....'Oh, you know I was hoping you would not come back here', she says when she recognizes me.  She smiles warmly as I put my hand on her back.  We hug.  She guides me over to the weigh scale.... dare I say I am just a few pounds from 200!!!  All that emotional eating through university days really paid off!!!   The intake nurses are amazing and the work they do behind the scenes to support the patients and doctors is tremendous.  She brings in my documentation..... all 2" of it and proceeds to ask me how I am doing?  She has such empathetic eyes and a soft voice.  I am asked to change into a gown and wait for the doctor.  Max and I are left to ourselves.... men always think about sex, no matter what is going on and he points out in the women's fashion magazine he has picked up from the chair, that see through bras are an amazing invention.  We both burst out laughing.  He flips the page, only to find the matching panties.... enough said!!

The door opens, the laughter stops and we watch the stone face of the Chemotherapist as he pulls a chair over to sit down.  Normally he would pull over the 'staff only' rollaway stool, but not today. He is there to talk business first.  He tells us that he has been in a few conversations with my medical Oncologist Dr. Locke and they have spoken in detail about my disease.  I ask him to explain exactly where all the nodes are.  They form a Y which starts at the neck, under both sides of the clavicle and down the center of the chest.  It explains the shortness of breath and choking I have been experiencing over the past few months.  While I am still considered asymptomatic (without symptoms), they will soon present as the disease progresses.  How fast would be anyone's guess and the doctors do not know.  It is the same biological pathology as the first cancer.  Did it lay in waiting until the right circumstances triggered it?  It was a very stressful year and stress is a trigger for many diseases..... it is all just speculation and it matters little now how it came to be, only how we can deal with it.

There are a few moments in the meeting where the tears well up for both Max and I as we are told that it can progress quickly or take its time.  We are looking for solid answers and we will not get any.  The first chemo I was on was only given in three doses, three weeks apart.  There are three components to this chemotherapy..... 5FU (5-Fluorouracil affectionately called 'F$#% You'), Epirubicin (red color known for its effect on the heart of some patients) and Cyclophosophamide I.V.   These make up a combinational approach to reducing the lesions in a number of cancers....   There is no cure, only control of this cancer.  There is no definitive time frame only a short term solution to control a lifetime disease.  (I know quite a few people who live with chronic health issues including lifelong cancer - it is not always an immediate death sentence and has the same chances as any one of us being hit by a bus).  We are told we can think about it.  Max asks a few more questions.  He is concerned about the lesions interfering with my breathing.  They are inoperable, including the one sticking out of my neck.... which if it chooses to..... can work its way out of the neck and be dealt with when or if it does.  This is more than I wanted to know but at some point the discomfort will have me begging for it to leave no matter what the circumstances it takes to exit.  I do not suggest you research this online..... you may come to regret your curiousity.... I know I have. We will try three rounds, three weeks apart and then a CT scan to see what is happening to the lesions.  It will only continue for three more rounds if the lesions are shrinking.  We will discuss any other options should this one not work. 

He wants to start chemo right away if we agree to it or whatever we decide to do.  We both look at each other and decide to give it a try.  We are met again with my intake nurse and she gets me to fill out permission slips.  It reminds me of the slip I signed this week for Lydia's last day of school where she is now sitting in the theatre with her classmates.....not the same form!!  I have all the paperwork afforded to me on the kinds of medications and what we can expect.  The fever card is tucked in neatly with all the contact information should I develp a life-threating infection while on chemo.  If you have not read my previous journey.... a slight scratch brought me to the ER and was given an IV of antibiotics.  I try not to focus on the journey through chemo that will begin next week.... yup, right after the long weekend celebrations.  We have to 'donate' a blood sample before the first chemo and so we make our way over to the lab just through the now empty waiting room and past a ghastly looking man sitting outside the chemo suite and across from the pharmacy.

I peek my head into the lab door and see Heather walking towards me.  She is a lab technologist I was friendly with in my first journey.  She is happy to see me and gives me a great big hug.  We have bumped into each other just about everywhere in the past few months.  I told her about dragonboating and now her grinning face retells the adventures she has had in the recent DragonBoat festival held in London at Fanshawe lake.  i can feel her excitement as she relives her experience in an animated and excited way.  She peeks over at Max and recognizes him from a charitable event .... we have been to so many over the years.  Max is never surprised anymore on how many people I have made positive connections with.  Earlier in the day, I called the VP of the school I had worked in at my last practicum. I had promised to let her know what the outcome of my testing was.  It is her last day of work and she is now off to enjoy a much deserved retirement.  She is a survivor and a truly wonderful woman who I also feel a connection to.  We have promised to keep in touch.... I wish you all the very best in your new adventure Mary.  Hugs.

It is time to head home to meet up with the kids.  I call Sara and let her know the outcome of the meeting. She is surprised we are going to take chemo.....after that whole bit about no chemo talk earlier.... but it is not the one chemo that made me so bloody ill.  We have a lot of work to do and will be doing it all weekend before the chemo journey begins.... chemo fog will rob me of my ability to remember a train of thought... thank goodness for my iPad to help me pull it all together... I love technology.  There is an urgency in getting together all the material in the event that a colleague has to jump in and save the day(s).  Time will tell over the next month if I can handle the pace and the side-effects.  It will not worsen with each treatment, so it will be predictably the same each time.

Lydia has earned her money in getting the best marks ever!!!  she loves her lego and we head out to pick up dinner and her toys.  I think I have memorized every freckle of the hundreds on her face, the bright blue eyes and the larger than life smile.  Mitchel is quiet as we drift through the aisles following Lydia who has already chosen her prize!!  Mitchel is the emotional thermometer in the house.... he has chosen to spend the night at a friends house... he knows the score.  Later I will tell Lydia that I can make her no promises and she turns to face me and says 'yeah I know Mom, its OK, I understand.  Let's just enjoy our time.'  We are having a sleepover together in the spare room after trying on some 'just in case scarves' I bought last week with her.  I do not have to explain to her what the score is because we have always been up front with her.  She trusts us and I would never sell her a bill of goods willingly.  We have decided over the next little while to create some Lydia and Mommy movies so she can have them with her to mark better times.  While she is upstairs getting her stuff together for our sleepover.....

I am sitting with Max and looking at my husband who is my rock.  He has had a few drinks with his close neighbour buddies and has fielded a few tears from our friend Sue.  I am looking at him and I begin to cry.... then  sob.... he comes over to me and we look deep into each other's eyes.... his are the same blue as his beautiful daughter and full of love.  It is raining in my heart today for the hurt I am putting him through and for how much I will miss him if my time comes sooner than planned.  We have such a deep connection to each other born of a deep love and respect.... oh heck, we just started laughing at each other.... and hysterically.  He is sure I will come back to haunt him and I am pretty sure too!!!!  We will live our lives, laugh and love. It's not perfect, but its the best that it gets for us.  Time will tell on our new chapter and we will continue to focus on today and worry about tomorrow another day.  LIVE, LOVE and LAUGH

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