Western education 2013

Wednesday, July 8, 2009

The day I stepped into someone else's shoes

This past month has been a whirl sending my head spinning...... it all began a few days before my 45th birthday with the discovery of a breast lump while showering during just a regular day. It was fairly large and not surprising that I have lumpy breasts as do most women but this one was just under the skin above the nipple and was painful to the touch. I was stunned and took a minute to regain myself... maybe it was just a cyst - just had one removed from my neck last year... or maybe it was something else. I gave it a few days to see if it would reduce in size, after all, my period had just finished and somehow the breasts were still a little swollen. Got through my birthday weekend but by Monday May 18th I just knew I had to have it looked into.

Call my doctor or call the women's clinic? Last year I had a diagnosis from a procedure I did that my family doctor did not report to me so I called the women's clinic and they had a cancellation in an hour's time. Could I get there within the hour? No problem I said and promptly informed my supervisor that I had a last minute appointment and I would be back as soon as possible. The Doctor stood back against the counter in the examining room and said she thought it might be a cyst and that it was an obvious lump from her vantage point. I was positive that she was right and let her make an appointment with mammography and ultrasound for the following week.

I had heard that mammography could be uncomfortable... when you have a lump and you squish the lump with a small paddle to a hard surface... that would not be the word I would use to describe the sensation.... as the technologist would share with me later... i looked like a 'severe swedish super model' as i gripped the handles like they were my lifeline and i was dangling from a gazillion story building. Ultra sound was daunting when the first technician could not figure out what she was seeing and promptly called in a second one who looked just as perplexed. I had a real sinking feeling in the pit of my stomach when I was sent to mammography for more pictures.... maybe this wasn't the cyst I was now praying it would be.

The results came in within a week and on June 12th I was on my way to St. Joseph's breast clinic for a deep core biopsy.. whatever that was it sounded... well not so great. Max came with me this time and sat away from me in a pseudo waiting room put there out of eyeshot of all the women who were waiting their turn in the hallway chairs. I met a number of women and chatted about whatever came to mind.. something about shoes... and then it was my turn. I lay down while Martha the ultrasound technologist did a preliminary scan and then began to explain what a deep core biopsy was and how it would be performed. The young russian doctor stepped in gracefully and with a thick accent went over what she would be doing... her accent reminded me so much of a dear friend Victoria who used to live down the street.. and i mentioned this to the doctor. Her face softened. The first incision was made in my now numb breast and the 18 gauge needle was inserted to take the first of three samples.... and then the same procedure was repeated for the lymph node in the arm pit.... reality hit and hard. The tears flowed and I fought them off with a brave face and a smile but then the sobs started.... Martha looked down and suggested that I not look at the ultrasound screen... was i looking? I can't remember and I mumbled something. The doctor was concerned that she had hurt me but was relieved that I was only scared so she tried humor to offset the situation - bless her soul for informing me that ' fridays were freezing day and I was lucky it wasn't monday'. I wanted to hug her and the poor intern that was subsequently left alone with the sobbing lady after the doctor and the technologist left.... she looked at me with teary eyes, apologized then quickly exited the room. Alone. The mammogram technologist came in and guided me gently by hand offering me a tissue for my tear soaked face while informing me that I would be once again pressed in a machine..... no worries I say with a half-hearted lop-sided grin - my breast is still frozen... won't feel a thing. Numb. Finally done I go out to meet my better half who has put on a brave face and quietly takes my hand and leads me out the doors into the hallway... I have forgotten my sunglasses to hide my swollen face and peer down at my feet... I can't find the words and so I am silent.... surprised even me. It would be 20 minutes before I can talk... and when I do, I can't stop crying. Max is comforting, a kind soul who always makes it better, no matter what. I love him so much.

June 19th is the morning I find out the news and I brace myself as I sit in the examining room at the new Women's Clinic on Westminister Drive. The minutes tick by and I occupy the space buy responding to emails from my son's teacher - something about trying to improve marks to obtain a pass... oh yes, high school exam today. The doctor breezes in, I do not know her but I know what she is going to say and I brace myself.... she doesn't look at me as she informs me that I have a ductile carcinoma and that I am to see a surgeon whose name and number she writes on a card and gives it to me. 'Have a good weekend and don't worry'. She hurries out and that's it!! I get out to the parking lot trying to remember to code to get out of the parking lot and then my mouth gets dry and I realize that my limbs aren't working well or even at all as I slump into the front seat of my car.... did anyone see that freight train that just smashed into my world. I called Max on my cell phone and he started asking too many questions... got to go I say and I hang up unceremoniously and then toss the blackberry into the passenger seat. What do I do now.... I will go to work, that's what I will do - life carries on. After fielding a call from my son who now knows the truth I hang up again and fight the tears that are ready to roll.

I walk into work and hesitate outside of Mandi's office - I love Mandi, she has been such an awesome friend and one of few people who knows where I was coming back from. She just looked and then starting saying 'shut up' and 'nooooo' the tears were falling as she came around her desk and then the hugs. I sat in her office for 20 minutes and she made it all better. I can face this.... then came my co-workers..... so hard.

My husband was not coping well and went home for the afternoon (i did not know this at the time) and called his Mom and Dad. They then took it upon themselves to call all the family and whoever else to spread the news... a part of me will always find this act one that leaves a bad taste... I couldn't get my feet under me and now everyone knew and they were all coming the following saturday to party and celebrate Canada Day.....

Here is the letter I wrote to them...

I wanted to touch base within the only format I feel comfortable in right now....

Yesterday’s phone call was not meant to go in the direction it did.... It got out of control at about the same speed that my life did. I was not prepared to let the family know what was going on with me/us and I told you in confidence what I was going through because I trusted you. You are my family and my world and there is nothing that I would not do for you and you for me – I get that. I would have appreciated you asking me if it was OK to let the rest of the family know and although you believe in your heart that they have the right to know, I would have told them in my own time when I was ready. It has nothing to do with being a part of a close family but more in keeping with the simple basic notion that everyone has the right to their own privacy. I was not aware that Max had called you, as I was not aware that he went home for the afternoon while I was at work. I already have removed myself from closest friends in a bid to find some still waters and to not feel so angry at what I feel is an injustice.

Here is what I need right now and I will continue to be candid and open with you......
Please do not repeat what I say to others... If I wanted them to know, I would have told them myself and I have the right to reserve what I say and to whom
Please understand that I am not myself and there will be bouts of anger, frustration and tears.
Please do not say you know ‘exactly’ what I am going through because you really don’t – it is dismissive and will only provoke anger and not what was intended.
Please just sit there when I need a listener.
Please do not recount anyone else’s medical run-down or tell me that it’s no big deal... Betty did this and so could you – I don’t know Betty and couldn’t care a less right now.
Please understand that when I withdraw or get angry – it is not personal. Be patient and let me lead the way.
Please understand that ‘well-intentioned’ is a catch-all phrase to excuse bad behavior and to justify things that are said or done.

To find a phrase that encompasses all that I feel for you would fill this page today and years from now – I LOVE YOU and right now it’s really what I need. It is really soon into my diagnosis and I really need the time to find my feet and I will let you know when I need you to help find them with me, because I will. I wanted to tell the family but at a time that would not compete with our gathering this coming weekend.

I have a new GP – she called me yesterday and is very knowledgeable and will advocate and educate me and my family... She came to me through my good friend Sue who is a survivor of colon cancer. She is coming to the house with a nurse on Monday night and will talk to the children and us and come up with a game plan as to how we are going to deal with what is coming our way. She will know the extent of the cancer as she will have all the results including the MRI that I will have done in the morning. She will guide and take care of me and ensure I get the help we need when we need it. It is her job to inform us and keep us moving forward medically and emotionally. I will continue to let you know what is going on through phone calls if I am up to it and emails when I am not. Either way, you are always welcome to drop by and just be with me as I will be taken out of work in the very near future for what could be a few years if need be........ I will be at a loss but will find what I need to do.

I love you now and more each day,

As it was, we got through Lydia's party and Father's day and on to the family weekend which turns out went very well. My attitude going in was - if anything goes wrong - I could always deek out... as it was, everyone else had a contingency plan. I opted to be open, positive and candid about my illness... I believe this to be the best way but on my terms. Work has been amazing and everyone has been incredible. My love and hugs to you all for being wonderful and respectful of my journey. Please feel free to approach me... I don't bite, at least not yet.

My new GP is awesome and to say I adore her would be an understatement!! She acknowledges my journey and has shown tremendous compassion and love. Thankyou!!

I will be seeing a surgeon on Monday July 13th..... and the story will continue....


Marita said...

The name 'Betty' in my letter was a name I pulled out of my head but later learned it was the name of a dear friend of mine's mother who passed within a day of my diagnosis. I wish to say that I most certainly do care about Betty and the wonderful daughters that she raised.

Norman James said...

You're an inspiration. Keep it up. It's the only way.