Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: Tamoxifen

I came out today!

Kylies Peronal JourneyBefore you freak out, read on ladies and gentlemen.

I woke feeling better today, so good that I did 40 minutes of Pilates. Marc and I went out and did some errands. By lunch I had began to feel the familiar creeping of achiness, pains and general crapiness return. My hips just ache. In my head I wonder about my Mum’s bone cancer that was all through her hips. Yuck…  She had so many aches and pains too….. Don’t go down that road!  not helpful at all.

I had to start the dexamphetamine again today in preparation for chemo in 2 days. They say it can give you a buzz – I pray for that! I am so tired and sore that a chemically induced buzz sounds awesome to me.

So, as I said in the beginning – I came out today. I decided to venture out into the big bad world Bald. It was mostly empowering, I did get a few strange looks. You see, because I look quite well, people say my skin is glowing. You can’t tell my right boob is missing (especially with a carefully placed scarf or if i wear the prosthesis) so I am sure people wonder if it is a lifestyle choice to be bald.

It is quite confronting when you feel that judgment happening though. Anyone who has ever felt judged in any way will know what I mean. I felt the same way when I first separated and divorced. Particularly, amongst some extreme religious people who I felt looked down at me like a quitter or a failure.

However, I know that only God judges me. I also know He has forgiven me, I know He loves me, He is with me and that He will never leave me, so that gives me so much comfort and strength.

I am learning that I am more than my looks.  Now this is a biggie for any female.  The world teaches us that we are our looks.   It’s funny I would be able to say to anyone else, “lovely you are not your looks, you are so much more,” buy my own self-talk is not the same. The battlefield of the mind hey? I heard a very wise man say recently “the hardest person we will ever deal with is ourselves.” How profound.

Funny story – I was out and about with my prosthesis in as you do. I did not feel brave enough to be ‘bald’ and ‘boobless’ in public just yet. I was looking in the mirror in the ladies when I noticed that my prosthesis had migrated north. It’s like it wants to be promoted to a shoulder pad! You have to laugh….                              well I do anyways…..

Marc and I took the kids to Youth at church tonight and after a good rest we went out for dinner. On the way home we stopped in at the best gelato in Sydney “Messina.”

It tasted wonderful at the time but I am as sick as a dog afterwards L One more day of normality until the next treatment….

I am challenged yet again

strong brainI have read and heard this very wise quote;

“We are not Human Doings. We are Human beings!” LIGHTBULB MOMEMT FOR ME. We need to be able to be still, to find quietness, to connect with ourselves and (for me) with God. Just be….. Honestly, this really challenges me. I am not sure if I even really understand what this means let alone how to do it.

However, it is particularly important for me as a travel this winding road that I pause and allow myself time to trust God, to give him my cares and concerns. He has promised to carry our burdens.

I am so much a person who was wired to define myself by my works, Am I good enough? Have I done enough? Will I be enough? This journey is teaching me that this is not the case. God has already said that “I am enough.”

He is my stopgap, I just need to lean into Him and all will be well. I really needed to do this today. Shopping was a nightmare. So many people. So much frustration in the air.

Sam and I had fun, we usually do. I am so thankful that he has such a wonderful disposition and sense of humor. He sees himself as responsible for making me laugh each day. How utterly beautiful is that?

We get the school stuff, Sam has a hair cut and by the time we get home I am literally exhausted! I am in bed with aching joints and a lagging persistent headache that will just not leave me alone.

I took Endone to help me sleep. The wonderfully helpful and insightful Edward Zia wrote a blog, click here to read it, about Marc and I and our story that he sent out into the world today. That was so thoughtful. His words were too kind.  He spoke of me as a warrior and being so tough.  Honestly, I am just putting one foot in front of the other and doing what I think is best for me and my family.  There is no toughness form my perspective,

Once again I find myself feeling so thankful for the people around us who just keep showing up and being there when we need it. Just amazing.

 

 

Welcome to a new world!

Kylies Peronal JourneySo it’s my second day as a Baldy Fritz. I woke early and had no energy AGAIN! I spent most of the day in bed, my “To Do” list was not touched for another day 🙁

Today, Sam called me a “silly bald woman” and I responded with “that is your one and only chance to do that!” I can’t even remember of it was out of frustration or him being comical, either way, it’s a fine line hey.

We had our connect group from Church over to our place tonight. What a wonderful group of people they are. They are like family, they walk with us through the tough times and cheer with us through the good times.

This experience has really reinforced just who important it is to have good people in your corner.  Man it just makes the world of difference to have people who you can call on for encouragement, rot listen, to make you laugh, to help out practically.  It is really so humbling.

Tomorrow it’s back to school shopping for Sam and I. Can you imagine anything worse??? Shopping on a hot day in school holidays when every other parent s doing the same thing, with no energy and no hair?

I am beginning to get into the mindset for me next treatment which is only 3 more sleeps away. I have read and heard people say this is one of the hardest parts of the schedule. You just start to feel more energised,  almost human again and you go back for more poison (sorry treatment 🙁 ).

Well it’s back to bed for me and my bald head.  I must say one bonus? It takes me much less time to get ready to leave the house 🙂

Meeting a fellow Warrior

warrior womanI slept well again –the difference being no Endone last night, a further improvement! I woke early as Marc is playing at church this morning, we were being silly mucking around and ended up laughing so hard we couldn’t do anything else for a good few minutes.

It was so good to have a good old belly laugh – man it is good for the soul. He leaves for church and I have a few sacred hours to myself in the house where it is quiet.   I cherish these moments when everyone else is asleep and I just get to sit and enjoy the stillness. It is one of my favourite times.

The church service was amazing and afterwards we had arranged to meet with another couple who are on a similar journey. The difference being, she was diagnosed a month before me, and because of her cancer being different she has had to have chemo before surgery.

It was so lovely meeting them both. I recognised her straight away as she had the cancer cap on. She looked weak but strong on the inside. We talked, I asked many questions like “why the chemo first?”

She explained that she wanted to preserve as much breast tissue as possible so she could potentially have a lumpectomy instead of a mastectomy. She is the only in her family to be diagnosed so has a very different view of breast cancer to me.

It was so lovely to speak with another woman who understand the fears, the concerns, the feelings of being so sick that blinking is too much. She encouraged me to rest as rest is healing and when you allow our body to heal you recover faster.   I call her my warrior woman friend.  She inspires me so much and she understands what it’s like.  The picture has been chosen strategically.  In all of the pictures available each of the women is really voluptuous, which no longer connects with me, so I picked this one.

An added bonus, our Husbands connected really well which was wonderful. There is so little support for the men standing with their women through this awful journey. So we plan to stay in touch, to resource and support each other. She gave me a contact for the cancer caps so if and when I decide to use them I can get some.

They looked funky on her and I am sure at least initially and in certain settings I will want to wear one. I am generally feeling a little better today, less pain, mouth ulcers still awful, still tired, digestion a little better but ovulation pain is really bad.

So if you are reading this and are on the journey too, find someone you can connect with, even if it’s online. Having someone who knows what you are going through makes such a difference.

I begin to feel human again – small steps

small stepsI slept well again! Woo hoo for Endone! I woke at 7am, it’s almost a miracle. The tiredness is still overwhelming; it is truly hard to explain.

I have a fuzzy head and it’s like I am trying to think but my head is full of custard (weird analogy but the best I can do). I still have indigestion that would mame most horses and my tongue is numb.   It is the weirdest thing.

Also my taste buds have changed, I can no longer taste anything but this persistent metallic taste – it is not pleasant. Everything tastes like this persistent unpleasant metal taste, even chocolate…… It’s heart breaking stuff.  The only thing that tastes normal is liquorice, weird hey? Lucky I like liquorice.

I went on an outing on my own today to the shops! Now that’s progress. I think I need to have small daily projects, like “go to the shops ,” “get dressed,” “shower.”  Small steps baby.

Honestly, if my to do list grows much more than that I am setting myself up for failure. I do believe a big part of this journey for me is redefining that I am not what I do. I am who I am and I am enough. I do not need to prove myself through my works.  I have been trying to prove myself through my works for many years and believe me it is exhausting.

I did 40 minutes on the Pilates reformer today so that was a huge achievement. Look, it is slow and it is gentle but its movement, Yay!

Being such an over achiever for such a long time this experience has real smacked me between the eyes. I cannot push through or past this, it has me at its mercy and I must obey. So I will listen to the wisdom of my body, I will accept myself for where I am at, I will appreciate the smallest things.

For example just sitting in the front yard watching Bettty Boo chase insects and butterflies. It is such a simple thing to do but I would never have taken the time to do that before. Daily small miracles is what it is all about.

I learn the unpredictable nature of this journey

dog tiredI slept better, thank goodness for Endone, it helps so much with the bone pain. So it still school holidays here and I have nowhere to be. I decide to take a bath, thinking that it will relax me.

In the bath I am thinking, this is one of my thinking spaces. I am compiling a “To Do” list as I do. After soaking for a good 20 mins in a lovely Epsom salts bath (a very nice way to detox people) I get out and dressed.

I am then devoured by the most indescribable tiredness, I cannot explain to you the depth that this tiredness seeped into my body. I literally went straight back to bed. I was so exhausted that thinking was hard. So I lay down and just be.

The pain in general and the general feeling of illness and toxicity is subsiding. My digestive tract is still inflamed and angry but better. The indigestion is still ridiculous, but at least I know I’m not dying of a heart attack. That alone eases the anxiety.

I played on my Pilates reformer today, only 10 minutes but it was movement and it felt good. I intend to do this more frequently so that my body remains mobile.

I slept on and off all day, and then we got Thai take away for dinner. Some of it had the smallest amount of chilli on it and I feel red raw from my mouth all the way down.

So a little more progress today, I do feel a little better and we will see what tomorrow brings. A very wise woman said to me not to fight the lethargy, to allow my body to rest and to heal. This is not in my nature, I am a fighter, I have always fought to do more than I should to be more, to accomplish more. This war on my body is too much. I need to listen to my body and be kind. Allow my body to rest and heal. Then and only then I believe I will win the battle .

 The Valley continues

Valley 2 I did not sleep well at all, too much pain and heat for me to get much sleep. I was awake every hour or so, which adds to the exhaustion. Also, the nights are just so long and lonely.

Marc has always said for me to wake him, but one of us needs to be functioning, so I cant wake him all the time. Besides I am the daughter of a night shift worker – YOU DON’T WAKE UP A SLEEPING PERSON! I was trained well; sleep is far too precious.

I almost cry with gratitude when daylight comes. We spend a quiet day doing some light errands until early afternoon. I am so slow and sore. As we drive past people I see them smile and I think, “How can they?” “What is there to smile about?”

I  am so caught up in my own little toxic dark world. Even blinking seems too hard. My head and body feel thick, fuzzy and hot.   I have bone pain in my back, hips, legs and feet.

I had to give myself the injection again today. I didn’t count to three for quite as long as yesterday but I still took a while. It’s all the head games I play with myself.

So it’s back to bed for me. I hate the thought of it but if I had a tank it would be soooo empty right now.

I need to remember that this is temporary; this too shall pass. I am not stuck here, it is only for a short time and when I get through I will find myself, my energy and my smile again.

Yay! It’s Chemotherapy day!!! Part 4

betty booDid you know that some people have actually died from Chemotherapy? It is powerfully toxic stuff. So much so that the medical professionals dolling out your treatment are covered from head to toe in gear that look like a scene from a sci-fi movie.

So with this toxic stuff in my system I am feeling pretty weird. As I approach the glass enclosure of the pet store, I see that ‘my’ puppy is not there my heart sinks. I feel my self say, “it’s not meant to be……..”

Then, I see a tiny paw sticking out from below the bed pillow in the enclosure. My hearts lifts as I gently tap the glass and out pops this little beauty!   I am over the moon. We request to have a hold and begin to spray questions at the staff about how can we introduce this pup without upsetting our dear old man Benjamin.

Meanwhile this pup has crawled up my neck into the space between my jaw and collarbone and snuggled right in. Ok so who trained her?? As if I am putting her back in that enclosure, she is mine!!!!

The staff assure us that if we take our time and ensure that Benjamin is treated as the dominant dog, we speak to him, feed him, pat him first etc things should be ok. He needs to feel like this is a positive thing for him. So we buy all the gear we need, fill in the paperwork, it’s like adopting a child almost 😉 (I say this tongue in cheek, I have the utmost respect for anyone who adopts a child whether its here or overseas.)

So we take all of the gear and our new edition “Betty Boo” home. We have said nothing to the family about the pup. All they know is the picture you see above with the tag from Marc saying, “who will love me?”

As we drive in the gate, Samuel comes out gingerly, I think he thought I was going to come home glowing radioactive green or that I would be bald when I came home. He is pleasantly surprised when I look the same. I motion him to me in the car, particularly my lap. When he looks in and sees this tiny precious black pup curled up the love affair begins.

Welcome home Betty Boo, what a highlight to my first chemo day! I will always remember this for the gift of getting you instead of the day I began to poison any remaining cancer in my body.

So we settle Betty in, introduce her to Ben, we take it very slow, Ben is not impressed. I go to bed as my entire body is buzzing, my stomach feels like it is distended and on fire. My legs are aching and so is my head. I take some pain meds and decide to go and lie down. I wonder what tomorrow will bring?

 

Crucial conversations

goodbyeWhat 15 minutes has changed your life, what crucial conversation meant everything shifted? For me, a recent example was coming home from the hospital after having a routine scan to tell my Husband I have a lump in my breast.

I still remember the look on his face, scared but holding it together for my benefit. Why was this so scary for me? It was because my whole life I have lived under the shadow of breast cancer. My Mother was diagnosed at 39 years old when I was a new born. She has a mastectomy and went on Tamoxifen. A couple of years later when the Tamoxifen was stopped (as is usual with this treatment) she had car accident and they found a metastatic growth in her spine. She had radiation treatment.

A few years later, she was seeing her GP. She told her GP of a lump in the other breast, her GP talked it down and told her not too worry. Perhaps a missed opportunity for a crucial conversation or otherwise a crucial miss.

She persisted and a few months later found she had a second different, more aggressive cancer in her remaining breast. Again she had a mastectomy and began Tamoxifen for a third round. By the time this happened I was 17 and doing my HSC.

After this she slowly but surely developed metastases all over her body and fought the hard fight until she went to heaven in 2003. By this time the cancer was in her bones, liver, stomach and brain.

So I guess another opportunity for a crucial conversation was the last time I spoke to her. She was unconscious and had been for a couple of days. The Palliative care team had told us, any day now. I wanted so badly to be by her side when she passed but was called away on some urgent family business with my ex husband.

I wanted to ensure that she knew how I felt so I read to her what I was planning to say at her funeral. Some may say this is sad or macabre but I wanted her to know how I felt, not just for the rest of the world to know. I think so many times eulogies are filled with things our loved ones needed to know while alive.

So with lumps in my throat and tears streaming down my cheeks I read her the eulogy I had written. She squeezed my hand when I finished which was such a special thing for me, some acknowledgement. Another beautiful but painful crucial conversation albeit one way.

On the way back from my “emergency” I received a call to say she had passed away. I had missed her by 1 hour. I cried tears I thought were impossible to cry. I cursed my ex husband blaming him for pulling me away in another selfish act.

However in hindsight, this was how she wanted it. She had always said she did not wish to be a burden and wanted to be alone to die. I don’t think any of us understood this or believed it so we faithfully sat by her bedside hour after hour.

It was only when I was gone, one sister was in the bathroom and the other was called away to answer the door that she passed away. Then I thought, poor love, was just waiting for a peaceful moment to slip away.

Crucial conversations can occur anywhere and any time, ensure you are open and ready as you may only get one chance.

Welcome

 

Mum, Dad & my sisters and me.

Mum, Dad with my sisters and me (far left) Christmas 1997.

Welcome!  I am writing this blog with a specific intent.  If you are a person experiencing breast cancer or know someone who is then my aim is to share information to help you along through this journey.

I was diagnosed almost 8 months ago and am still in the midst of active treatment.  My experiences have been a combination of amazing, wonderful, heartbreaking, physically intolerable and disappointing.

I am sharing my story in an honest, authentic and tell all manner so that you can glean from my experience what ay help you or your loved one.  I have read so many stories my self and have found that each one has helped me in some way.  Whether it be a symptom of chemo that helps me to feel normal, a tip to cope with treatment, an idea on what to ask your Doctors, or how to cope in general, I will share all that I have learned and experienced along this road.

My journey with breast cancer began 42 years ago when I was born.  My Mum was diagnosed at 39 when I was a newborn breast feeding baby.  She had a mastectomy, and carried on with her life.  When I was about 7, she was in a car accident that ended up saving her life.  Whilst Xrays were done to determine the extent of a suspected back injury they found extensive bone cancer in her spine.

Treatment recommenced.  When I was 16, Mum found another lump in her remaining breast.  Her GP told her not to worry!  Several months later after she persisted in getting this assessed a second breast cancer was found and the second mastectomy was performed.  Mum had radiation and was taking Tamoxifen as the tumours were hormone driven.  She had already undergone a hysterectomy but had her ovaries removed also to protect her from the devastating effect of her hormones.

From then on, Mums bone cancer just kept on spreading until when I was in my twenties and spots were found on her liver and lungs.  I remember a time when mum hurt her hip.  She was such a stoic and strong woman she kept going but we all knew she was in pain.  She told her doctor and said that she thought she had broken her hip.  The doctor indignantly responded saying, “Oh no if you had broken your hip there is no way you would be walking.”

Mum persisted and eventually her hip was X-rayed a few weeks later.  She indeed had a fractured hip and her hip was riddled with cancer.  She ended up with 2 hip replacements to try and allow her to stay mobile.

On my 31st birthday, I was visiting with my son who was 18 months old when mum had a minor fall (It was more like a bump really).  She was in excruciating pain immediately and we called the ambulance.  She had snapped her thigh bone in two.  Once again she was told the cancer had weakened the bone.  Mum never walked again.  She slowly succumb as the cancer spread to her brain.  She passed away after a long 32 year battle on the 8th of August 2004.

When as a family of 4 daughters we reflected on Mums journey we noted how much she had to push for recognition and treatment.  She would often tell her GP that she was concerned and was often told not to worry.  She struggled with the idea that she was perceived and a whiner, so sometimes it took time to have the diagnosis confirmed and treatment commenced.  Mum had radiation surgery and hormone treatment to deal with the cancer.

Mum was put on “Tamoxifen” each time she was diagnosed and was taken off it after a few years, which was the standard treatment protocol at the time.  We noticed that within months of the Tamoxifen being stopped Mum would begin to experience weird symptoms and begin to push for recognition from her Doctor.  The result was us as a group of daughters being petrified of both the disease and the treatment, as we helplessly watched our Mum get worse and worse.

Mum had one breast reconstructed and it was more like a butcher job than a reconstruction, poor love.  She had so many scars from the surgeries, drains, hip replacements, hysterectomy and other medical procedures over a life time of health battles.  She looked like a patchwork human,

When Mum was no longer able to live independently she moved in with my sister who lived closest to her.  It made practical sense at the time as the two lived in the same country town, with the rest of use living away in both Sydney and Adelaide.

We agreed as a family we would care for Mum at home as she dreaded the idea of being sent to and aged care facility.  We tried to share the burden amongst the 4 of us, but it really fell mostly on my second sister.  She is very similar in temperament to my lovely mum and the two of them clashed.  This was made more difficult as Mum got more unwell she became more frustrated and bitter.  Mum lived for more than a year with my sister.  This was such a hard time for everyone particularly Mum and my sister.

The more dependent Mum needed to be, the angrier she became and we were all subject to her wrath at times.  We all understood why she was so frustrated; she had been the carer of everyone for so long, it was how she showed her love.  She felt so useless and hated that she felt like a burden to her family.  When Mum passed it was incredibly heartbreaking on so many levels and also a relief as she suffered so much.  She died at my sisters home as she wished on the 8th of August 2004.

It was such a weird experience as she had been diagnosed with cancer so many times and fought it we didn’t think it would take her.  So when it finally did take her life we were all shell shocked.

Within a year my sister 49, who had cared for her found a lump in her breast while doing a self exam one day.  She had it checked out and it was also cancer – we could not believe it!  It too was hormone driven and she had a mastectomy.  She was recommended a similar regime to Mum.   However, my sister did not want to follow the same path as mum so with such courage she said “no” to chemotherapy, radiation and tamoxifen and she decided to treat her cancer through complimentary therapies and nutrition.

My sister struggled more than she let us know.  She was told by Doctors and fellow patients that she was crazy or stupid or reckless for not pursuing medical treatment.  She questioned her decision but knew in her soul that it was right for her.

About 18 months later precancerous changes were identified in her remaining breast.  She also struggle with the idea and fear that the cancer would come back, along with the unevenness of having only one breast that she had the other breast removed.   That was 9 years ago without a recurrence.  She has had a few slip ups with caring for herself, particularly when things get really stressful.  But she has done amazingly well.

In November last year through a screening mammogram I was also diagnosed with breast cancer, I was 41.  I had 2 tumours on my right breast that were also hormone driven.  During surgery it was found that the cancer had travelled to my lymph so chemotherapy was recommended.

Unlike my sister I decided to take a combined approach with both medicine and complimentary medicine.  With the full support of my entire family I too decided to have the second breast removed instead of waiting for my body to betray me.

One thing I have learned is that each person’s journey is so personal and individual.  It is impossible to know how you will respond to the diagnosis of cancer until you are in that seat and you are being told “you have cancer.”

In that moment your life changes forever, things get really clear and really simple in an instant.  You realise how much time you have wasted on the unimportant.

So my sincere intention is to share my experiences, what I have learned, what worked for me and what didn’t.  I cope with humour so beware, some of the things my husband and I have laughed at may shock you, but you wither laugh or cry hey?

So stay tuned, read my blogs as they are posted, stay well, laugh lots and live in the moment – after all it is all we have!