Wednesday, March 24, 2010
.... this journey has taken me to places I never imagined both emotionally and physically - I just never thought in my wildest dreams it would take me to Queen's Park in the role of activist ....
Sunday 21st March
Today I will find myself heading out to the Lamplighter Inn on Wellington Road in the afternoon for a rally sponsored by ONA (ontario nursing association) in response to the firing of the front-line nurses. I meet up with Megan and Janice outside the Renaissance room accompanied by my wonderful husband. This is a letter writing petition signing event open to the public with our most honorable Mpp's invited to speak. Deb Matthews does not show up and we are clearly disappointed by her absence..... I am not surprised, but still disappointed. It really amounts to no accountability at all when you ignore the people you were elected to represent. The stories are amazing and heartening from nurses, a Dr. Sexton and patients. There are those that have produced petitions that have been signed in their areas and there are form letters signed by attendees and labelled for the various MPP's. Chris Bentley and Khalil Ramal are present and give their responses to the gathering as most expected - we will look into this...... and we will wait.
Tuesday 23rd March
I present the Wellspring staff with the barbie I have made a headscarf for and gown which will be auctioned off for one of their fund raisers. They are ecstatic and with the help of Wanda, our facilitator, she paints shoes on the Barbie and we attached mini jewels :) It is the least I can do for everything that they have been doing for us.
My legs, knees and hips still hurt and walking is an effort. I am out of breath most days if I am moving too fast. The swelling is ridiculous.... I have had to put my edema sleeve on this week and pray this too goes down. My underarm hurts when I raise my arm and the water in the shower felt like it was burning the skin that had been radiated. Funny how it is only slightly pinker than the skin around it. I must be careful.
I spoke on the phone with Andrea Horwath's office yesterday afternoon and indicated to them that I would go to Queen's Park in order to get our issues heard about heath care cuts if that's what it would take to be heard and was surprised and excited to find an email inviting me out to Queen's Park for Wednesday while she brought up the subject in the legislature. I was about to go on an adventure but had no clue as to how I would get there and if anyone would want to join me. When I called around, Diane offered to accompany me and I was simply thrilled!!
Our train trip began in the evening and we managed to arrive in Toronto around 10:15 p.m tired but Ok. After a nightcap at the bar downstairs, we headed up to our shared quarters. The tall buildings and the lights brought back memories of a time when I worked for the CBC in Toronto in the early 90's after my 4th semester in the Technology program at Fanshawe. I am not sleeping well these days, but then who does when their legs pain them so much and the hot flashes come and go. Diane is intelligent and her baby blue eyes sparkle with glee as we are getting ready to head downstairs to breakfast after getting ready. She smiles when she sees me without my headscarf on and lets me know that her hair actually looks better than mine. Grinning, we both leave for breakfast after making arrangements to meet with Jill and her daughter Megan.
It is time to head out to Queen's Park and we are within walking distance from our hotel. I do not want to take a cab and insist on stretching the legs which will take three blocks to work the stiffness out of the calves and knees - I have given up on the hips. It is the most spectacular day with not a cloud in the sky and a slight breeze as we try to figure out the best way to get to the front walk of Queen's Park which hosts an odd inverted Y sidewalk with both ends terminating at the curbs but with no crosswalk. We find this a very unfriendly and unwelcome layout to a public building. Besides the safety factor of having to negotiate across three lanes of traffic without the assistance of traffic lights, there are the fancy sports cars kicking it up on the clear and bright morning. The tulips and daffodils planted in the beds on either side of the walkway are sending up their green spikes to catch the warm spring rays and the grass is showing some green as we gather at a bench waiting for others to meet with us. Introductions are made and the names escape me as we stand on the steps and have our pictures taken for posterity. My spirits are up and hopeful that this lovely beginning is an omen of good fortune. We make our way in and up to security for our passes which are printed out. We are not allowed to take any items with us so Jesse meets us and collects our coats and our purses to be locked up while we are guests in the building. We are to be in the gallery on the lower floor but these are all taken up and we can hear the legislature starting the session after about 5 minutes of tolling bells. It starts at 10:30 but the time slips by as we all have to make our way to the basement to receive new passes for the general public gallery. It is set up with the steepest stairs and the head begins to swim as the ache in my knees suggest the descent is greater than comfort will allow. I am about to witness for the first time a seat overlooking the Liberal caucus and right dead ahead of me is Deb Matthews. There was a moment when she looked up after Andrea Howarth began her question and passed her hand upward when mentioning my name and our eyes locked. At that distance, you are aware of each other but expressions are hard to read. The behaviors of the MPP's during the question period is unreal - fully grown, apparently well healed and educated people behaving like insolent children... some were clearly turning their backs to the opposition member speaking and others heckled and became so noisy that Mr. Speaker had to silence them a number of times. I am assured that this is normal and that it can get worse and usually does. Well, there are the ones who are leafing randomly through paperwork, talking on their bluetooth and leaving midway through this performance to go out or to the other side of the room. Young pages run around delivering ice water on silver trays and paper notes from one member to another or from regions unknown....... enough to just really piss you off!!!! To think, this takes place every morning from 10:30 to 11:30 and afternoon four days a weeks as they have their constituency offices located all over Ontario. As one member put it 'no wonder this is question period, no one ever gives an answer'. After all this ruckus in the caucus, they depart only to take part in a media scrum.... what could they possibly say after paying such rapt attention to the matters at hand??
I am waiting at the top of the stairs behind Andrea as she answers media question about the healthcare issues she has brought up. Her interviewer begins to move away and then returns quickly when I wave at Paul Bliss from CP24 - he used to work at my work and he doesn't recognize me but starts the interview which went well until he asked me what the nurses meant to me in my journey.... then the tears started. Diane and Jill took each one of my arms and steadied me when I swayed. Then the media all came over and question after question, I finally got to leave when Diane and Andrea walked me down the stairs. I apologized for crying - embarrassed for the emotions that took on a life of their own. I was met downstairs by a photographer for a local Toronto paper who wanted to take pictures outside which we did and then a call from Julie at /A\ Toronto to meet in front of the building for yet another interview. Andrea and her staff wished us well and thanked us for our participation as we headed out the door to wait in the spring air for Julie to come and do her story. Julie and camera man Simon showed up - really terrific duo whose kindness was evident in the way they spoke to us. Tired and needing to walk out the stiffness, Julie, Laurence (not sure exactly his position) and myself made our way out to lunch to meet up with Diane. One more interview request as we made our way back to the hotel. Andrea Piunno met up with us just outside our hotel for CP24. Nice gal, used to work with /A\ at one time. Diane, Jill and I head out to the train station in a cab... I have run out of energy and am feeling the fatigue pulling at every muscle.
The train ride back was wonderful... time to wind down and relax and a chance to get to know each other. I am inspired and feel a connection to this charismatic and down to earth gal. I look forward to future meetings....... we laugh and chat. This journey has brought me many wonderful moments and this is definitely one of the best.
I had taken the time on the way to the hotel earlier to purchase t-shirts for the kids and a hand-written Toronto post card telling them of my visit. Each one was as different as my children and written with love. They were thrilled with the small tokens. Max got a shot glass.... he's not a spoon collector kind of guy.
Thursday 24th March
Fielding phone calls and emails today.... interviewed by AM980, Cp24 and Rogers. Today is the budget day and was not surprised by the typical platform of look how great we are and here are the things that are more important to us.... and not necessarily reflect that of the people. Healthcare received an increase of 1.5% which is no raging hell but it is still better than the anticipated and feared 0%. Now let's see what they do about the layoff notices and hope to see them revoked in favor of the administration taking a pay cut/freeze in following the nurses pay freeze. Accountability and responsibility is what needs to happen here.
I am exhausted and my legs are impossibly swollen. My nurse has come and checked me out and has indicated that I need to keep my feet up.... no worries, got that one covered as I am fielding phones while at home today.
I went out to meet William's welding teacher later this afternoon and was impressed with William's abilities to MIG weld. Great job! His instructor commends him on his work ethic and personality but like me, does not like his lateness... after all, he now has a part time job at a local pizza place. He indicates to me that he is proud of my activism and offered his help anytime I need it. I am getting that quite a bit today and am proud of the people who are helping out.
With that, it is time for bed. Night night....
I am finally getting some much needed sleep and though my bones ache in my legs and the muscles burn when I stretch them, I am still low energy but trying every day to walk - after all, the weight will just continue to go on me without getting up and going. I tried to get some work done this weekend but the fatigue still pulls at me.... one day at a time.
Friday, March 12, 2010
..... this week started on Monday and for the next five days, it kinda felt like groundhog day - the movie about a guy who gets up every morning only to live the same day until he finally figures it out and makes all the right choices to finally be able to start a different day..... tomorrow, I will start a different day....
My last day of radiation started like the other four days except the car in my driveway was not Eileen but Sue delivering a wonderful envelope containing a homemade card that i was instructed not to open until after. After waving to her as she pulled away and lots of blowing kisses as she drove off, I smiled - today is the last day of treatment.... it seemed so far away and now it was here. A little better than three seasons of my life filled with so many emotions and so many really truly great moments and some phenomenal people, a list with so many names and some that I do not even know. I head up to the chemo unit to get ice water to fill my bottle and see my chemo nurse - I thank her for everything and she quietly thanks me for helping the nurses. We hug and smile at each other - her smiles and reassurance when I needed it most meant the world to me and made the treatments easier.
I will be seeing the doctor every few weeks as part of the trials that I am on and then every three months. The late summer will have me in for a number of tests including an MRI imaging to ensure the baseline created by all the images provided will be compared to all future images. I will be in the process for years to come but for now, I will take each day as it comes to heal the body, mind and spirit from a journey that has challenged, threatened and altered the course of mine and my family's life forever. It has reminded me of things long forgotten and of dreams yet to come.
I am sore in the legs and hips and walking can be challenging like today (March 17th) following behind my active and independent daughter as she peels down the sidewalk on her bike. I am lumbering and swaying back and forth when my son joins us later in the afternoon. He pulls in beside me and asks how I am doing. I assure him that it looks worse than it feels.... he doesn't buy it as he moves off to catch up with his sister. They have grown so fast these past months, we all have grown together and I am grateful for all the wonderful moments that this journey has brought me... there always is a silver lining in every cloud. I bask in the afternoon sun later in the afternoon and listen to the songs of the birds in the tree - this March break has been the best I can ever remember with temperatures in the teens. The fish in the pond have survived the long winter except the one that the heron got last fall..... they too are basking in the sun pulling the energy and warmth into the bodies that have been cold all winter. The buds are forming and the crocuses are out. My winter with my illness is over and the spring unfolds and signifies beginnings of things yet to come. William has gotten his first real job at a local pizza joint and we all couldn't be happier!! I am interviewed on the phone by Kelly who is doing an interview about FACEIT and by the doctor I owe everything to. I am so grateful.
I will continue to blog when the moment strikes but for now, I will heal and prepare myself to return back to the life I led but with a difference......
Monday, March 1, 2010
...... the pain in my breast shooting across the top of the breast a number of times Saturday night caught my attention..... the lump I found Sunday night brought back some stark memories of a time 10 months ago when I first began my cancer journey and now the lump I am feeling under numb breast tissue is smaller but there is no missing its presence just under the skin in the same location as its predecessor.
I let Max know and promise that I will call my doctor in the morning after the committee meeting I have called for elections at work. I once again become the president of the crew, visit with a few people in the building and make my way home. The phone is ringing when I get through the front door and it is Vel asking if I can make it in to see the doctor after lunch.
Dr. Annette is hopeful that it is just scar tissue but quickly realizes as I have that that is simply not the case. The spot as far as I can tell is sensitive... my flesh is still numb from the previous two surgeries due to nerve damage but there is a definite round shape to the lump which is easily felt through the skin above the scars. She is on the phone within minutes making arrangements to get a mammography and a biopsy done. She also takes the time to contact my Radiation Oncologist who indicates that he will immediately suspend the radiation appointments that were made for me starting next Monday until such time as we can determine what the lump is. If it is a cyst then it will be drained by the doctor at the breast clinic and if not he wants it surgically removed before any radiation can take place.
She is off the phone and our eyes connect...... I am trying to gather my thoughts but deep down I have a feeling that we are not looking at a cyst - another surgery will make it three and I know what she is going to ask me. I have already had this discussion with Max a few times and again on Sunday - this is a no brainer I tell her - it will simply have to be removed. I will likely be told that I should consider mastectomy by my surgeon and I would have to concur. Annette wants to know if there is anything else she can do for me.... no, I answer, I am good. That has been my standard answer through this whole journey but the sinking in my stomach doesn't feel good and I can feel the tears begging to well up. I leave with a thanks and she gives me a hug and makes me promise to call her to confirm whether it is a cyst or not. She heads off to her next patient as her assistant looks at me and smiles weakly as she wishes me the best tomorrow.
I call Max when I get to the car and the tears have stopped begging and are now coursing down my cheeks as I let him know that I have the biopsy booked. I don't feel much like talking as I sign off and toss the phone in the passenger seat.... whoa, deja vous. I manage to get home and call Kaz to let her know that I have to cancel picking her up for Art but that I will make arrangements for her to meet one of the other girls.... it is hard to not cry and she doesn't know what to say. Funny how we both have breast cancer and neither of us knows the right words to say when someone is crying!! I manage to email Bev to let her know that it is Kaz's first day in Art and can she look out for her.....
....and minutes later Max arrives. The tears start up again and we have a little time to just sit on the couch and talk about what is next before the kids get home.... what is next?? We don't know but we are both scared at the prospect of yet another positive biopsy result. I mentioned we should finish my will .... Max was not as amused.... We have decided not to tell the kids anything until we have all the facts.
Tuesday 2 march 2009
I am heading off to get a biopsy at St. Joseph's hospital and knowing what the procedure entails, I have less anxiety but leaving my keys on the seat of the car and having to go back to get tells me otherwise. Max is doing OK but you could tell he is nervous as he grabs my hand to walk to the hospital from where we have parked a few blocks away. The sun is warm on our face and although my legs hurt like hell from swelling, I am glad to be outside!!
The waiting area inside the mammography/ultrasound area is soooo packed and I realize that I am being stared at.... I am the only woman in the place with a head scarf on and the lady beside me quietly asks if I have cancer. Yes, I tell her, breast cancer. She is scared and her nervous twitching is obvious. She is a smoker and I notice the open wounds on her arms..... she is leaving herself open to constant infection by the look of the scars on her arms and hands. She has a shadow on her breast according to the mammography and is really scared - I look at her and smile 'no matter what you are told, you will deal with it', I tell her.
I am fortunate that I am not waiting too long before I go into mammography with a small wait until I get into ultrasound. Yes I will have a biopsy and the doctor comes in with a smile accompanied by an intern. They are both admiring my tattoos and the doctor tells me that in her culture, the Koi fish mean good luck... what do they mean to me? I tell her that is some cultures, the Koi fish will eventually evolve into the dragon which is revered - I am born in the year of the dragon and she tells me with a grin that she is too. The biopsy goes smoothly as she freezes the breast before making a tiny slit with the scalpel in order to insert the larger gauge needle to capture samples. She takes four samples and lets me know that she is sure it is benign but will get path to confirm. Enjoy your day she says as she steps out. Martha is the ultrasound tech - same one as last year when I had my first biopsy. I thank her for being incredible and sweet and give her a hug before I head out.
I feel a sense of relief and promise myself not to worry until I have to.... easier sometimes said than done...
Thursday 4th March 2010
I get the call mid-morning and the doctor was right - it is benign. Now to start radiation on Monday and try to enjoy the rest of the week.
My legs are swollen more specifically my left leg and the muscles in my thigh and my butt!!! I am still getting dizzy just trying to sit up from lying down and I spend the first 5 minutes of my morning trying to sit up but do not always succeed and end up falling over. Walking is still challenging and painful but it is getting better. The sunshine is really helping with my outlook... it has been a long winter.
Monday 8th March 2010
Radiation Day!! I am on a randomized trial and was picked to do the short version. The short version means that I go twice per day for 5 days instead of 25 days once per day. I report in to radiation reception and get handed a pager and tuck it into the front pocket of my jeans as I head over to get a coffee for Eileen and myself. She has volunteered to drive me back and forth for the next week in a scheduled filled in between with doctor's appointments.
The radiation technologist is waiting for me just inside of the entrance doors to radiation with a blue binder in hand and smiles as I wave to him. I put my still hot and nearly untouched coffee under Eileen's seat as I follow him down a hallway into a waiting room where he points out some change rooms and lockers. He indicates that I should seat myself after changing and he will return to get me. It is only a few minutes before he returns and leads me around the corner to a winding hallway which opens up into a large room with a machine located in the center of it - 2100i ( 2100 IX Varian) the machine and i is the room number. A rig similar to the one used in the tattoo procedure is on the moveable bed and I am asked to lay down and lift up my legs while they put a cushion under them. My arm is then placed up and away from my side in a cantered 45 degree angle after removing it from the gown I have changed into... I still have my jeans and socks on. Next the two technologists move me slightly one way or the other until the laser beams cross over on the tattoos that they have now marked up with sharpies. The crosshairs they have drawn and measured must match up with the beams from stationary units screwed to the walls and ceiling of the room. Next, they have charts contained in my binder that need to match the coordinates on the computer screen with those on the machine. They need to take images with this machine prior to the treatment - a total of three are taken as they adjust in between each one. This will be an accurate record of any changes in the breast from one treatment to the next over each of the treatments I will receive on this trial. The bed moves as well as the imager and the unit that provides the radiation. The radiation unit is a circular metal disk about 2 feet across that can be rotated while the arm it is attached to can pivot from one side of the bed to the other. It has a window which when you look inside has a rectangular slot with metal bars that move apart or together to produce the exact window required for the radiation beam to travel through. This allows the exact contour to be followed on the body part for more accurate radiation treatment. Once the technologist is happy that everything is lined up they leave the room, hit a paddle on the wall and will return when the image or radiation treatment at that coordinate is complete, only to return and readjust and check for the next treatment. This procedure will take almost 1/2 hour with each visit - I will remain still for the entire time... the measurements are accurate to the millimeter.
The clinician comes to see me - Daniella - she needs to take photos of my breasts and then I am to fill out paperwork about how I feel about the appearance of the one that was operated on. Well, it is hard to say how you feel when you become accustomed to a disfigured breast with multiple scars and dents?? How do you subjectively evaluate that? Well, it scored a poor after a little discussion.... hard to think that the identical twins that they used to be are now not even remotely related. I do not dwell on it for long and its back to making light of my journey....
I return again later in the afternoon and meet the late afternoon crew. I feel tired and grateful that Eileen is driving.... it wouldn't help if I did.
Tuesday 10 March
Starting to resemble the day before.....
Wednesday 11 March
Lydia wakes up with a wicked temperature and I ask Max to stay home with her and to make an appointment with the Pediatrician when Eileen comes to pick me up at 8 a.m. It turns out that she has a throat and ear infection.... kids are funny - had her in last week for needles and asked the doctor to check her throat and ears - I think she is coming down with something I told him. Mom's know these things before they happen!!
I am feeling tired, really tired today.... dragging butt kinda tired but so happy that I am on a trial. I have to see my medical oncologist after my afternoon appointment with radiation. I meet with him in a cubicle just off of the waiting room and we go over some information on creams - oh well, I am allergic to some of the ingredients and will have to just use aloe if the burns begin to blister. I am slightly pink today but nothing serious.... it is my underarm that is normally numb but today it is sore. I mention to the doctor that I am still really dizzy and have a hard time getting up and of course the leg swelling. He indicates that if it continues they will have to take blood... the downside could be indicative of internal bleeding, low iron etc... I will be seeing a geneticist to see if I have any markers because of my age and in hopes that this is a fluke and that my daughter won't have to face this. From here on in, I will be tested regularly with mammography and MRI to track any changes from the initial baseline. I am unusual, he says and it is hard not to laugh and we both get in our digs before the nurse comes in to help set up appointments. I will see him again on Friday and two weeks from Friday to see if my skin has blistered... sigh.