Saturday, 26 May 2012

Subtracting and Adding

As my date draws incredibly close to my first chemo treatment, I have been trying frantically to be prepared. Trying to stay one step ahead of things I don't even know yet, bit of a game really. Control or the illusion of control is probably what I am seeking, not sure if that is possible completely.

Along with my list of things to offset the side effects of the chemo, I have tried to think about how I can lessen any discomfort with the things I know are  going to happen. One of the biggies being the inevitable loss of my hair. You see I have been growing my hair for the last year or so to get it back to the length it was 4 years ago before I bobbed it off. I have always associated my hair with feeling good about myself. It makes me feel pretty when its long and overall I feel more feminine. Its a personal thing and I know it comes from being a thin, unibrow type of teenager. I had cut my hair in high school pretty short and every time I see those photo's I want to die. Now remember this is a perceptual thing I had of myself at the time. So bottom line is I feel better with long hair. I know I am going to lose my hair that is a given. Dealing with it not as easy. I knew that if my hair started to come out while it was long it would probably break my heart, since it comes out kind of clumpy. So I decided that I would cut it off, completely off. Like boy short. I thought that if I cut it short it would not hurt so much when it comes out cause I had already changed it myself.
My first hair appointment got cancelled which was hard since I had completely resigned to the decision. So now I had to wait, nothing new these days. My daughter was suppose to come with me on that day but now she could not come since the time had changed. I never really thought about it, except I would just go, but it turns out not alone. Two girlfriends show up with a bottle of bubbly and a bag of chips. How perfect is that. We had a " Pixie Party" for my new pixie doo that was to be. The salon welcomed our little celebration. My friends are the best in the world and god has gifted me with many, they all carry me. The stylist was kind and completely understanding of my angst. I have to say she reminded me a little of Edward Scissor hands, hair flying everywhere. At one point she swept up just to get rid of the amount of hair on the floor, and to maybe lessen the impact on me. After a year and half of growing, it was all gone in 20 minutes. Everyone was so kind with their words and compliments. My heart ached just a little. Cancer has taken my breast and now my hair "what a bugger". Although I said yes to the mastectomy and booked my own hair appointment. Ahhh the illusion of control, I will take it. I can grow my hair back not sure about the boob although god knows what people are doing in a lab somewhere. I shudder to think about that one.
So if I can't grow a new boob and its too early for me to have one made, I think its time I at least got myself a good fake one. I have had a prescription for one for a couple of weeks but had not done anything about it. Was I putting it off on purpose? I have been using makeshift boobie enhancers for the last while. A lovely little silicone bra enhancer from Walmart, and a pocket thingy from my mastectomy camisole that had done its time. My friend told me to fill a nylon with rice a little tip from the cross dressing world.
I went and had a fitting done yesterday. Its funny you know because I think that with everything I do, like cutting my hair or getting my prosthesis it is a kind of acceptance for me. Accepting cancer is not an easy thing to do. I talk about it, joke about it, but I am not sure I have truly accepted its reality, although my chest is my permanent reminder. I miss being even.
The lady at the fake boobie place was kind and patient as I asked a million questions. She showed me different models. It was like shopping for a car, each one with its special features. I phoned my insurance to see what they would cover and it turns out it is a generous amount so I told her I want the Cadillac and that is exactly what I left with. I even got the proper bra to put it in. I know get why we should have the proper one as it just feels different and better than the Walmart version.
So last night I took my new hair and boob out for a drink, I thought they both deserved it. Not sure my head agrees today.

Saturday, 19 May 2012

The flashing red light

As anyone with a similar diagnosis will tell you, part of the stress of cancer treatment, is the waiting for phone calls and appointments. Everyday when I would come home on my lunch, and then on my return home at the end of the day, I would look at the phone to see if there was a flashing red light. The almighty message carrying information to take all my angst away. Giving me a sense of direction and moving forward, or that is what I tell myself. Actually its also a stark reminder of the tsunami that is my life currently. Thankfully tsunami's don't last long although they can cause great damage and change things forever.
For many many many ( I am going to use three many's to be dramatic) weeks I had waited for my call from the cancer clinic just for initial referral to them. I was told a couple of weeks, one to two to be exact. Let me tell you when you are dealing with a life threatening illness, early stage or not you are hanging on to these time frames. As I blogged earlier that appointment has occurred but that was a combination of flashing red lights and a red dot on my phone. This also was accompanied with "can you come in right now"!!
 I don't seem to ever get the actual phone calls, its always that red light giving me a sense of relief and a great big punch in the gut every time.
Upon leaving my appointment with the Oncologist, I was left with the information that I would start chemo in the next two weeks. They would call me. Here we go again.
Now some people would say I am stressing about things that I can't control and need to just let it happen. My life has been a series of " curve balls" most of which I did not see coming, some by choice. I almost feel like if I anticipate then I won't get smacked in the head with the ball. We all know we can't always avoid a good smack in the head especially if we are looking in the other direction. This time I want to be the team manager. Illusion is a great thing.
So here I am waiting for my chemo start date. I tried not to keep track of the red light but you just wanna know the date. See that date indicates of some life changing things. Humbling things like the loss of my hair and possible side effects that may or may not happen. I can try as hard as I might but there will be a lot of things we won't know until the drugs do there thing. The hair loss is a given, also possible bone pain from the Nuelasta shot to keep my white blood cells up.  I have already called the oncology pharmacist to tell him what I have learned about trying to control that side affect. He is going to have his work cut out for him with me I am sure. He seems patient with my jockeying for the management position. I wonder when they tell you if you got the job or do I have to job share.
Yesterday I got up all prepared to go and see the radio-oncologist. Then forty five minutes before I was to be there they called and cancelled. Geez louise did you have to? Lets see now what did they say, oh yes they are going to call me back with an appointment. Seriously another possible flashing red light. My friend had been here and was prepared to go with me. So we would have to wait. Now I don't have my chemo date or my radiologist appointment.
Frustrated I went Chemo shopping. This is my hand dandy list of things I purchased to go into battle:

  • Olive oil for my taste buds some lady says it will help retain my taste buds, 2 nasty tablespoons a day
  • Biotin mouthwash and toothpaste for the possible sore mouth and sores you can get ( yuck)
  • Claritin for the possible use to help with the pain of Nuelasta, too be discussed with the pharmacist
  • Tooth brushes to change often for possible bacteria and infection
  • Sugarless candy's for throat and mouth not sure about that one... just remember reading it
  • New bath pillow for the increased number of bath's to soak my aching body, loves me claw foot
  • Nail hardener and cuticle cream to protect nails, don't want those babies falling off
  • Bottle of red wine, okay a couple for courage, also heard organic wine can help with White blood cells a girls gotta do what a girls gotta do.

When I return home, only gone for a half hour and you guessed it, the flashing red light is blinking at me. Now I am assuming its the cancer clinic with my new appointment for the radiologist, but the message reveals that its my chemo start date. I call back right away. I don't hesitate but my stomach hurts. How could something you have wanted so much make you feel so heavy?
She tells me that my start date is May 30th be there at 9 am. So that is it. Its going to actually happen now cause I have a date, a time. I am sitting here alone in the house when I get that information. I wish I was not. I feel like I need to process it but there is nothing to really process anymore. I do have a moment where I realize that my husband will be back home by then. I think to myself that I will have him here which I am grateful for. Maybe that is why the universe picked that date. Actually it was a person paid to do it but my fantasy is better.
I  text my husband and tell him the date and how I will be glad he is here. He says he is happy as well.
I then say " put your helmet on" you are going to need it. He said "k".

Monday, 14 May 2012

The Visit

As some of you who know me, I have been quite anxious to get to move on with the next step of this process. Treatment is something I want to get started and avoid all at the same time. I think for me its the not knowing that kills. On the other hand its the knowing that drives me crazy as well. I am pretty knowledgeable about all the ramifications of chemotherapy and therefore scared to death what they will be for me. I think my big girl pants need a belt.
I have been waiting with great anticipation for the phone call from the cancer clinic for weeks to no avail. My wish was granted this past Friday with a last minute call to come in to meet my Oncologist. Although it was exactly what I had been wanting I suddenly would of been happy had they not ever called.
You go through this period after your diagnosis and surgery where you start to feel normal again. Define normal I dare you. As we all know life will never be the same again after a cancer diagnosis, a new normal would have to happen. I had been back at work for four weeks and my arm was recovering and starting to feel much better.
I managed to find a friend to accompany me on this Friday afternoon as it was such a spontaneous appointment. I would advise anyone having there first appointment to travel with someone who can take notes. The information can be plentiful and overwhelming. You arrive full of questions only to realize your still a deer in the headlights.
We arrived and were  greeted by a lovely woman who took additional information and went over some that they had already. She then took us down to the clinic area to see the doctor. My girlfriend and I chuckled and laughed so the mood stayed light and unassuming. Stress does funny things. We joked about how we could draw different eyebrows on, should mine fall out, depending on what mood I was in. The visual was funny. I think I have laughed more lately than in a long time.
We met a nurse who was very nice and helped me filled out a questionnaire. She was very pleasant and chatty with us. She left to go get the doctor.
The doctor finally arrived. She asked all kinds of questions:
Did I have a history of problems with my breast?
How have I been feeling?
What was my family history with cancer?
Do I smoke?
Did I breast feed?
She wanted to know about my other breast. I think she wanted to really know why it was still there. Now I am only assuming here but my impression is " why wasn't I counselled more on a bi-lateral mastectomy". My breasts according to her and as I already know are dense and full of cysts. A difficult boob to find any new culprits that might appear. Oh no I am having regret or that is what it feels like. " I should of have them both off"!! I push it down. I didn't do that, so no regrets. She said she would want to MRI the breast. I will deal with that when the it happens. I am saying a prayer that its clear.
She then turns to the Pathology report. I had two cancers. Two types. They call that multi-focal. They were both invasive. My margins were negative. Positive! Grade 3. Not so Positive. Technically I was node negative for my lymph nodes. Positive!!! ER positive PR positive, cancer likes my hormones. Positive!!! She then finally brings me to tears. She says that there is no need for any further staging tests at this time, therefore no spreading is the belief. Thank you Jesus!!!!!!
She says I will benefit from the drug, Tamoxifen, the 5 year drug. Can you say "menopause". Great, can't wait...As I sit here just starting my period today I realize that this might be the last one I ever have.  I actually am feeling sad, like someone is taking something away from me and they didn't even say please, although I would of gladly of given it away if it saves my life.
Now here it comes, wait for it, wait for it... she says it " Chemo"! I think my big girl pants fell down.
I guess somewhere deep inside I just wanted this all to go away. I have felt at times that this has been a journey where I am just the observer. I don't believe that this is all actually happening sometimes and especially happening to me. Its like being in a lazy river, and you sit in your tube and float along all peaceful, and then all of a sudden you hit the turbulent water and your crashed around a bit and then the water smacks your face bringing you back to reality.  I will finish the course but I am not getting back in after.
I don't want Chemo but I will do it. She said I got one kick at the can. Lets see how far that can travels.
So here I go....4 rounds starting very soon... hair loss, fatigue, sadness, but what I really see is a future, my life, my chance to get it right.  I feel this circle of love around me, believing, feeling things I have yet to recognize my self. I don't ever feel alone on this journey and to all of you out there thank you. You believe so I believe.

Wednesday, 9 May 2012

The Retreat

I had been invited by a friend of mine to come to a breast cancer retreat shortly after my diagnosis and surgery. As always I am game to learn and meet new people.
I walked on the bus a bit nervous but incredibly curious. The air was filled with the voices of the 40 or so women that were on the bus as old friends reconnected and new ones were made.
We arrived at the hotel and settled in and started the retreat with a dinner which was lovely, and then after dinner we did something called the circle of friends. We sat around the table and people told their coles notes version of there experience with the disease. When people tell you that this disease is different for everyone that is very true, although through the weekend I would hear similar stories to mine, each persons story was unique to them and oh so very personal. A moment came for me a little while after that when one by one, all 184 of the women went up to the mic to say how long since their battle with cancer began. It ranged in decades to under a year. I could feel as I sat there something welling up inside of me and tried to push it down but as I walked towards the mic my emotions rushed to the top and as I said the words " 7 1/2 weeks". I cried. I walked all the way back to my seat making that ugly face you do when you are trying to stop from crying. I was to learn I think I was the most newly diagnosed one there or so I think. I was angry at myself for crying, I wanted to be proud as many of the women seemed, but I was just sad. Strength it would seem would come in many forms over the weekend. Later that night in the form of a lovely glass of red wine with some lovely women.
The weekend seemed to be jammed pack with things to do. Information on becoming a Dragon Boater, reconstruction and learning more about my pathology report. We heard many stories of strength from people who have struggled in life and have chosen to grown and learn from there struggle and now give back in one form or another. We laughed till we cried watching a actress from St. John's tell stories to us with characters as unique as every woman in the room.
Some people have asked me what was the moment I will remember and I guess it came after the remembrance ceremony. This event involved every woman there. We each laid a stone in a water bowl and then lit candles and one by one each person stood up and said the name of someone we wanted remembered that lost their battle with breast cancer. My turn came, I stood up and said " Mary Browne", my mother who died on March 4th, 1996. My heart ached. She would never of believed that I would be standing in a room with breast cancer saying her name. As the service concluded women were crying and hugging each other as they grieved for the friends and family who have gone and I think a little for each other as we gave this terrible disease a name or face
I had a met a woman earlier that day and had breakfast with her,and as I left to walk out when it was all done I felt a hand grab my arm and say " excuse me". It was her, she looked at me and said " I just want you to know that I can see your strength and that I know you are going to be okay" She told me she just wanted me to know that. I was taken a back that someone I briefly met in the morning felt some connection to me and that it was so strong that she needed to tell me what she feeling. She made me feel as if what she said is exactly what is going to happen. I know I needed to believe her. It was like she was a conduit for something greater than both of us.I don't know if I will ever forget that moment when she looked at me and said those words and I know I will carry it everyday with me. If she believed that strongly then so should I.
We ended the retreat that night after dinner with a dance. Women who had seemed reserved and conservative were kicking up their heels and the energy in the room was palatable. We danced and laughed.
I walk away from this retreat with new friendships, and a deeper and greater respect for the women who were there. Each one with their own story, each one there to be part of  a group bonded by an experience with a disease that takes a piece of you away physically but seems to empower them with a strength to support and carry on.
I am grateful and deeply inspired as I move on to the next steps of my journey.

Tuesday, 1 May 2012

The two week

I remember being woke up as I came out of surgery by the nurses saying " your nodes are clear". I can't even remember a face at that point but I do know I cried all the way from the OR to the recovery room. I am assuming that is the news alot of women are waiting to hear. I am still waiting to figure out what that will exactly mean for treatment or my future. The recovery nurse also told me that I looked a little blue from the dye they had injected during the sentinel node biopsy. Let me tell you it turns more than your skin blue. Use your imaginations.
I spent the night in the hospital with family and friends coming and going. I was a little euphoric as I had been pleasantly injected with morphine in recovery. I do however remember the crash I experienced at around 10pm at night when meds wore off and I had downgraded to a atasol 30. Needless to say I had a rough night. I waited  patiently the next day to go home. I wanted to go home yesterday at this point and was beginning to fall apart.They let me go home at four o'clock "thank god"! I remember just before I went home they came in and said they were going to change my bandages. Two nurses came in at that time to do it, one was a student and a senior nurse. I shuddered at the thought of them touching me. I would now have to deal with the fact that " it " was gone. The bandages helped to hide the truth or at least distract me from it. As I would do many more times in the coming weeks I cried as she removed the bandages and changed them. I remember the senior nurse standing over me and holding my hand and stroking my hair. She made me feel validated as I cried as I felt so exposed and changed forever. I was grieving. Grief can come from all kinds of loss. I mourned my breast.
I was told on discharge there would be a two week follow-up with the surgeon and hopefully he would have my pathology report. I wondered what that was going to say, and what it would mean and where it would all take me.
The next couple of weeks at home consisted of public health nurse visits, and many many friends dropping by. The bouquets of flowers were bountiful and my home looked very springy. I was grateful. People brought food oh how I was grateful for the food as my husband is limited in his cooking abilities although I really did not get a chance to put them to the test due to people's generosity.
The public health nurses were kind and patient as I panicked at each visit that entailed removing a drain from chest or the " gulp" staples being removed. I seemed to have some sort of anxiety ritual I went through each time and then later I would  realize, after it was done, that it was not that bad. I had help from cousin on several occasions, she coached and caudled me through things. I am glad she was there.
My husband had to return to Houston for work two weeks post-op. We had an appointment with the surgeon just before he left. I wanted him to hear what was said so he understood. I needed him to understand.
We showed up at the hospital to be given the impression that they were unaware of the appointment, but were going to accommodate us. You know what that meant. Waiting!!! We were an hour sitting in the hard chairs and at this point I was still crashing and needing to lie down at various points of the day. So I had a nap, once again on my husbands shoulder. His helplessness never seemed to translated into not having a soft and safe place to lay my head.
" Sondria Browne" they called my name. " Great" I thought, I wanted to get this show on the road. I was completely freaked at what he was going to say, what the report would say. We went in and waited in another room, and I sat trying to wake up from my doze in the waiting area. It took a while. My husband went around touching everything and joking about what we could use at home. It broke the tension cause we were laughing. In came a doctor, but not mine. I believe he was a resident with my doctor. He sat down and said " we have your report". I thought okay good. He looked at us and then said " well its definitely cancer". I remember thinking " it better be cancer". I never in a million years would of thought that those words would go through my head or that I would even think something like that. All I could imagine is that my breast is gone, it better be gone for a reason. He began to go through all the info on the report about the fact I had two tumours not one as previously thought and oh yeah they were two different types of cancer just to top it off. I made notes on my iPhone for good measure so I could remember. The Resident clued up and then went to get my surgeon. They returned together and the surgeon spoke for a minute and then examined my incision and said it looked good. He said to me that I made the right decision to have a mastectomy based on the report. Really what every woman with breast cancer wants to know is " am I going to die" a question not easily answered at this point. Its such a broad question cause we are all going to die, some sooner than others. I personally am concerned about my mortality at this point. My husband wanted to know if I could travel during treatments to come and see him in Houston. I am thinking " I won't be going anywhere during chemo!" I know he was just trying to figure out how to make it work, to make it easier and somehow keep me close.
We clued up with the knowledge that I would be referred to the cancer clinic and should hear something in one to two weeks. As I write this I am almost 6 weeks post-op and no word. So my advice is bring your patience in these cases.
I dropped my husband at the airport a few days later not really knowing what the future held or where he would be in the coming months, all I knew is I would be here waiting. I guess I am not going anywhere for a while or that is how I felt.