Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Author: Kylie Warry (page 2 of 7)

The pathologist from hell

needleThe following is a true story and has not been enhanced for dramatic value. After seeing the genetic counselor I was sent to the hospital department that takes the blood and gives us the results.

I find the department in the maze otherwise known as the public hospital. I take a ticket and get in line, literally. We are all starving, it’s been a bog day and it’s now 230 and we have not had lunch. In addition to cope with the stress we are all beginning to act a little bit crazy.

I am finally called by a man who looks more like the maintenance man than a pathologist. He has a thick accent and even thicker glasses.

He has to get within 10 cm of the vials and all the needle paraphernalia to get what he needs. I’m thinking “Oh shite this could be interesting” He asks me to sit down, I try to make a joke to loosen my tension but he just looks at me over his glasses, not impressed at all! Even my comic genius is not going to rescue me from this.

He puts on his gloves and his hands explode through the ends of the gloves. He cusses under his breath and proceeds anyway! I am thinking that the purpose of the gloves has been destroyed but he keeps going. Oh well his risk hey?   I’m a pretty toxic chick these days.

His face gets within 10 cm of my arm and jabs the needle in to take the blood. It hurts a little but it’s not too bad.  I’ve had so many procedures involving needles lately it’s just another one.

He says to me “Go and waiting room for 10 mins then I will take a second sample of the blood.” This is something peculiar to the genetic test. I just want some lunch :)

During the 10 minutes of me in the waiting room laughing with my sisters about; my luck of getting a blind pathologist I can’t understand, who doesn’t have a sense of humour, whose hands don’t fit into the gloves, he calls me back in.

I enter the room and sit down. He puts on another pair of gloves, pushes his hands through the ends again and seems to swear in his native tongue. I stifle a laugh.  He’s like a pathologist version of the hulk.

He takes the dressing off my arm I say to him gently, “Your not going to take blood from the exact same place are you?” He looks at me over his glasses again, mumbles something in his thick accent and proceeds to jam the needle into the exact same spot as the previous needle!!!!

I gasp but steel myself; this man will not get the better of me! I’ve been through worse than this and I just need to get out of here. Soon enough the ordeal is over, I am still shaking my head as he is filling in the paperwork. This man with coke bottle glasses, dressed like a maintenance man, with these gloves hanging off his hands like the clothes on the incredible hulk! How can I do anything else but laugh?

I leave; I thank God it is over and take a deep breath thinking soon we will know the truth of our genetic heritage. My sisters are waiting I anticipation to see what has happened this time.

We leave, I share, we laugh, we eat lunch and I take my sister to the train to return home to her family. I know she is burdened by what might be, I am too but still feel empowered by the process. I encourage her to try not to worry until we know what we are dealing with. There is no point in spending all of that negative energy on something that may not be.

She agrees, bit I know her too well she will go over this a billion times before we find out. What a day….. What promotes strength for one, promotes fear in a other.

A Jam packed day for all

familyI did not sleep again – you may be sick of reading this, I am certainly sick of writing it! The pain in my back and legs is just ridiculous. I was awake most of the night watching pre recorded TV episodes of the block. Thanks good ness I have something I enjoy to watch!

I find that my sister has hardly slept either, what a sorry pair we are. She is into the coffee. It’s times like this I get a little jealous that I don’t drink it anymore. Those mornings when you are literally dragging my sorry butt along the hallway, I would love a coffee. Green tea just does not do it lovely!

I get Sam to his first day of Year 8;  he’s not a happy camper :( I need to buy new uniforms from the school, have acupuncture, see the genetic counsellor and then take my sister to the train afterwards. A typical day of madness in the life and times of Kylie Warry.

We make it to the genetic counsellor. My other sister comes also to help with facts and figures. Being the youngest there is a lot of info missing from my experience. There are 18 years between the oldest sister and me.  There are 10 years between my closest sister and I.  Being the baby for so long I was left out of a lot of family conversations.  It is also really personal and important for us all to understand what the implications are for us as we all have our own families now too.

It was a good session, but there is a lot to consider. I didn’t realise that in one of my sisters’s family there are BRCA genes on her husband’s side. This makes her so fearful for her daughter. However, her daughter does not wish to know the genetic status and would rather keep an eye on herself, have regular checks and stay healthy.

This is another perfect example of how different each person’s response and journey is. Regardless of whether you agree or not, it is the right of each of us to do with this information what is right for us. One of my sisters feels fearful with this information, I feel empowered, one of my other sisters feels really overwhelmed. We are all soooo different.

However, before the cancer appeared in my body I did not want to know the genetic information, I felt it would worry me into cancer. If you are facing this or know someone who is, please support them to make the decision that is right for them. It is not black and white or clean cut, it is deeply personal and I don’t think anyone has the right to force a direction on the another person.

My sister who has had cancer also is really emotional through the meeting, she keeps saying hat have I given my kids. I said to her “would you say this to our Mum?” She replied “of course not,” so the why do we do this to ourselves? Every person is in the genetic lottery really.

When the Genetic Counsellor first meets us she says “are you all sisters?” We answer in proud unison “yes”.  She then says, “oh wow, I would never have thought that from a genetic perspective.”  What the heck does that mean?  We let that one go through to the keeper.  I think each of us was to afraid to ask more about that.

At the end of the session, the genetic counsellor says to us openly, “even if it is not BRCA1 or 2, there’s something genetic going on.” I think we all thought that, but she explained that because each of us has been diagnosed under 50 years it means the cancer is genetic and being switched on by something.

Apart from the subject matter, I had such a lovely day with my sisters. We always manage to find something to laugh about. The test has been done, I had the Pathologist from hell but that is another story so watch this space. I am exhausted and fall into bed contemplating all that has happened.

Decision, decisions

Right Decision, Wrong Decision Road SignI woke thinking it must be morning and I looked at the clock to see 1145pm!!! I almost cried. My back, knees and hips are aching so much I am beside myself. Lord I need you to give me rest!

The night creeps along so slowly, I watch some TV as I just cannot lie there staring at the ceiling anymore. The TV whilst crappy is a welcome distraction from the pain within my skin.

At 6am I drag myself from bed. It is the first day of school for Moni and Sam has a day at a friends house. So I crawl about the house getting things organised. It’s times like these when I want to give a shout out to Mums all over the world. No matter what is going on you just get it done.

I slink home from the school run and fall into a heap on the bed. The heartburn is so bad I feel like I have hot coals in my chest. At least I know what it is now, last cycle this really scared me. I am nauseous, flat, hot, my thought world is so fuzzy I am just so YUCK. I can’t stand myself…..

I slip in and out of troubled sleep until the afternoon. Then I need to get up as the kids need to be picked up and my sister who has also been diagnosed with breast cancer is coming to stay the night in preparation for the genetic counsellor tomorrow. She is really not wanting to go down this path but is doing so to help me.  How lovely is she?

She arrives and it is great to see her but I am in so much pain I can’t enjoy it. We try to sit and talk on the couch but my legs are aching so much I can’t sit. In the end we both go to bed.

I don’t want to have another night awake so I try not to think about it. Yeah right as if that’s gonna work :(

So I am off to bed, hoping and praying for some rest. Also praying that tomorrow will be a good day for us. Each one of my sisters is feeling differently about the genetic counsellor. My sister, who was diagnosed 9 years ago and has had a double mastectomy and oovectomy is worried about implications for her daughter and sees it like “what have I given my children?”

I on the other hand feel like “it is already done and knowledge is power.” My other sister who is cancer free is thinking what do I do with this information. Do I wait or do I act?  Each situation unique, the related decisions are tough and so personal.

This is new and very tricky terrain, I respect and value where each of my sisters is coming from. So I pray that tomorrow is a good day, a helpful day, an empowering day.

I’m Feeling ripped off

sad womanI had another restless night. The mouth ulcers are coming back with a vengeance. My head feels fuzzy, (not literally, as I am as bald as a badger). My tank is empty, Marc is still feeling strung out, he is so worried about being back at work and balancing everything. I am trying to keep out of his way, to give him space but it is really hard.

Today, I am leaning on the strength of my Lord. I have none of my own, so I need Him now more than ever.

I have spent much of the day in bed, it’s the Australia Day public holiday and we have not done anything. I must say I feel a bit ripped off in general these holidays. I feel so sore and sick that I am struggling to enjoy any of the usual things we do. I am not able to swim, I can’t think of anything worse than going to the beach; my body is deformed and swollen. The thought of hot sand getting onto already sore places is not a nice thought. It’s not a nice feeling at all, being restricted, but hey I need to be thankful for being here in the first place.

Logically, I know it’s only a season, but it is potentially a very long season. My impatience is showing and it is only early days yet :(. I said at the outset that I want to learn from this experience, to open myself up wholly, to learn and be changed for the better.

I am beginning to realise that impatience and control may just be some of the issues for me to work on. When your world is turned upside down and you realise in 3 seconds that you are breakable and finite in this worldly sense everything changes.

I mean everything……

What is important, what needs my attention, what needs to be let go of? I want to get as much from this as I possibly can so that I can stand at the end and say that it was worth it. You see I am going to go through this regardless, so in my mind I may as well make the most of it, gain what I can, learn, grow, be a better me.

So in my mind I am trying to rise above. In the flesh I am so sore, the skin on my hands and feet is peeling off in layers (it really does not look good), I am swollen and in pain. I decide to try above all else to at least get some sleep tonight, so it is 2 Endone for me and a prayer for some much needed sub consciousness.

Round 2, day 3, I re-enter the valley

woman waitingI slept until 3am which is just gold. I woke because my hips were so sore I could not move but desperately needed to. I am feeling quite weak and shaky. I’m not sure if I’m nauseous or hungry.

Some advice? To anyone out there going through chemo or who knows someone who is, please encourage them to keep a journal. It has helped me so much to map out my response to chemo and how to be prepared. It may be all I have energy to write in it daily, but is also a much needed release valve.

I do feel better on this day 3 than last time but I also know what to expect and they have given me some more anti-nausea drugs in my toxic cocktail to hold me until day 4-5.

It’s both Sunday and Australia day today. I make it to church barely, but am so glad I went. I feel bad for the family as they all stay home because I am so whacked I can’t do any celebrating. I don’t want them to miss out too but they won’t hear of it.

We get home from church and I just fall into bed. I cant even talk I feel so bad. My tank is so empty I imagine dust sitting on the inside of it. I got up and dragged myself to the kitchen to eat and went back to bed, it just takes the edge off of my nausea.

I have awful back spasms so took some Endone to help with this. My hands, feet and torso feel so bloated and hot. If I could Id run away from myself! I’m also constipated which adds to my discomfort.

Marc is heading back to school tomorrow and he is really unsettled. He doesn’t want to leave me but I assure him, all I am doing is laying in bed. I honestly won’t be needing much, just a mattress and a fan to try and keep me cool.

Until now he has been mostly off work during the holidays so we have journeyed this at the hip. The timing of this has been such a blessing for me, if there is such a thing. Having Marc by my side every step of the way, encouraging me, believing in me, holding me up, wiping the tears when they roll down my face. I am such a lucky woman to have his support.

Yes he is about to go back to work but I will always have his support, so I am ok with it. I also know this is but a season, and things will start to improve once chemo is finished. They must.

Damn that Bus

dog tired 3I took Endone before bed last night as I just knew it was going to be ugly. It helped me to sleep until 2am. I watched TV, I promise I did not buy anything from the shopping channel but I can see why people do!

My tummy is upset but manageable, I am tired, looking for that Damn Bus, my hands and feet are swollen and red hot from the inside, it hurts to walk or to use my hands. My mastectomy scar is really sore too; it’s weird.

I dose after 4am and wake at about 7am with this strange and strong desire for an almond Croissant, seriously! I mention this to my knight in shining PJ’s and he jumps in the car to get us some. Man I married up huh?

I am able to stomach the croissant, he heats it up so it is warm slightly crunchy and soooo naughty. I feel a little sick afterward but I believe it was worth it. I reckon I’m gonna feel like crap regardless.

Today is going to be a very quiet day for me. The tiredness is the worst; honestly blinking seems like too much effort. My tummy feels slightly better than last time, the anti nausea drugs are working well for me.

I have been horizontal most of the day, I just can’t imagine the thought of standing, it’s just too much. Besides my poor feet are so sore and swollen. My whole body feels swollen and hot by the end of the day. 2 Endone are my companions into the night tonight. I pray for sleep, the long lonely nights are the worst.

Ding! Ding! Round 2

ding ding R2I haven’t slept well at all, I am wide awake for much of the night. Staring into space. I am so caught up in my thought world I don’t even realise I am awake. I keep catching myself just laying there staring into space captivated by my own dread and anticipation of what is to come.

I lay there and pray for peace and a calm mind. I am praying for a sense of purpose in all of this madness and waiting on God to let me in on His plans. As the sun rises I get up and do something probably a bit stupid but hey that’s my prerogative isn’t it.

Of all things to do, I weigh myself. Of course this will make me feel better :( I have gained a few kilos and feel like I am really holding onto fluid. It doesn’t stress me as much as it may have 10 years ago. I know my body is copping a complete scherlacking (I am not sure if I just made this word up or not?) so I need to focus on nourishing myself and easting what I can tolerate.

My poor body has been through the ringer with constant chronic and unrelenting stress, the expectation of just functioning because I need it too, let alone the surgery, trauma and now chemical onslaught.

Marc and I arrive at the day centre, I take my own blanket and some snacks I know I can tolerate. I take some music and some things to do should I feel the need. I’m such a girl scout – be prepared, have options.

Today goes more smoothly than the first, we know what to expect, I have slightly less headaches, my tummy is already playing up but I feel prepared. IMG_1391

By the time 8pm rolls around; the Bus is parked just up the road ready to run me over as I sleep. However, compared to the dread I felt this morning, today has been a good day. Marc and I sat and laughed, as you can see in the pic here, we do have a lot of fun when we are together. He just makes this process so much easier.

I honestly thank God every day for giving me a man who loves me for who I am, whether I look like the woman he married or not. As my body is attacked by this treatment, it will never be the same again. We will never be the same again. But – he still sees and loves me. This is a gift that is beyond measure.

How dare they!

vulnerability-signsmaller-1024x682I woke early today, feeling pretty good actually. I did another 40 mins on my Pilates reformer, you know it feels great to move my body again. Marc and I then headed out to Cronulla to have breakfast with some friends in Cronulla.

On the way to Cronulla I get a message from my previous  GP saying he has received a requested to provide information and he is confused as to the context. I call him and he says my insurer has contacted him asking about my mental health. Bloody insurer, they are trying to discredit me already!! I make an appointment to see my GP that day.

I feel so insulted that they are trying to catch me in a lie.  I pride myself on being honest so this really hits me hard.  I know this is just a process but this has become very personal for me.

I then place a call to my Financial planner and leave a message. I am furious! What has my mental health history got to do with a breast cancer diagnosis? You see my background in the rehabilitation industry has seen on many occasions, good people having claims not honoured through a loop hole, I won’t let them do this to me!

Breakfast is lovely, right on the beach.  but I am dreadfully distracted buy the furore in my head.   I enjoy my food thinking tomorrow I will be as sick as a dog again so make the most of it. After breakfast I get a call back from my financial planner. He explains that the insurer is confused because in the past I have been quoted as having anxiety, stress and been prescribed valium. I explained that this was all to do with the IBS (Irritable Bowel Syndrome), which is clearly stated in the insurance paperwork.

My poor Financial planner, he can hear how angry and insulted I am, he explains it is part of the process and they want to ensure I have not left out any important info in relation to my health. If I have then they will not honour the claim. I also find out they contacted a psychologist I saw years ago to have some counselling. Really private stuff and they just get to go through it.  I feel really exposed and traumatised. “How dare they!” I scream to myself.

Now I am feeling vulnerable and out of control. If I don’t get any financial support during my illness it will drastically change the course of my recovery. I may need to make financially driven decisions about do I or do I not have complimentary medicine? It is really expensive.

I realise how blessed I am to even have insurance as many do this the hard ay with none.  I take my hat off to anyone who has done this without insurance or without the financial backing to have what treatment you want to have.  Truly, I can’t imagine how hard it must be to go through this and to be in financial hardship.  To the point, Marc and I have survived by refinancing our mortgage.

My mind is going at 1000 miles per hour.   On the way home we pick up a friend of our son’s bring him home for a catch up, we make lunch, have some visitors, go shopping, make dinner, clean up, cover bloody school books and I fall into bed.

I know I am doing it early but I also know I am going to be out of action for the next week potentially after the next round of chemo. I am absolutely dreading the thought of tomorrow…….

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.



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