Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Month: December 2014 (page 1 of 2)

Gotta get my insomnia sorted out

I Kylie's Personal Journey Documentary_Stage 1.woke at 1:11 AM feeling like I’d had hours of sleep. AAARRRGHHHH!!!

I’m wide awake, I’m having intense hot flushes, I just don’t know what to do with myself. I think a good option is to spray myself and stand in front of the fan.

What a sorry sight I must be standing in the darkness of my bedroom. One boob, no hair, bald as a badger and sweating from head to toe. I know what a beautiful site you must be imagining right now.

Eventually the hot flush subsides and I contemplate going back to bed. However it’s not that simple, the intensity of these hot flashes mean that I am wide awake so sleep is not an option for a while to come. Thank goodness for recorded episodes of “The Block.” I promise you, this has saved my life. Combined with the fact that my husband can sleep while I have the TV on its such a blessing.

I eventually wake at 6:30 AM after falling asleep around 4 AM. I feel like I have a hangover, I really need to sort out this insomnia. How on earth is anyone meant to function with no sleep.

In general my pain is a little less today, I’m tired but I’m getting used to plodding along anyway. Again no rest today too many things to do. I need my blood test to track my body’s response to the last round of chemo as well as seeing if I’m ready for the next round.

I also have a visit from two good friends both are also work colleagues and keep me in the loop as to what’s been happening in the world of business. One of them is a lady in a complimentary business that we have worked with the years. The other has been my partner in business so many years. Both of these women are tremendous gifts to my life.

At the end of their visit my business partner mentions that if I am open to it she may consider buying me out of our business. This comes as both a shock as well as an opportunity. Because I don’t know what the future holds it may be worth considering how I can simplify things.

However, another part of me feels like one of my dreams has just been taken away. We always had a big vision for our business. To think this may change in a way that I never expected challenges me. Again I need to take some time and see what is going to be best for me and for the business. I also need to remember that her intention is to take pressure off of me and give me the space to get better.

I went for another swim tonight. These hot flushes are so exhausting, depleting, disgusting, frustrating. My hair that had just started to grow back has begun to fall out again. I think I’m going to go for the clean skin that look and just shave my head whenever I need it. I don’t want to look like a sucked out mango. Again another beautiful visual for you all.

I take myself out to the movies

IMG_1004I slept again – woo hoo! I could get used to this. I am feeling a bit yuck in the head, and still as tired as heck but I’m remembering what Human can feel like.

After I get the kids to school and do what needs to be done I decide to take myself to the movies today. Kylie no friends, how liberating! I really wanted to see August Osage County and hadn’t had the opportunity until now.

Have you ever gone to the movies alone? I encourage you to do it. The first time I was so uncomfortable thinking every one would be looking at me and judging me for being alone. But like most things in life, no one cares. It is actually incredibly freeing. Realising that you don’t need anyone else to entertain yourself or do things you want is very empowering.

I arrive at the cinema and I am alone in the theatre except for one other. I take about 3 seats to myself; unpack my healthy goodies I packed and sit back to be entertained. Entertained I am but it is an incredibly sad and heart breaking movie. What a powerful story. It really impacted me and made me feel so blessed for the family I have and the love I am surrounded with.

Yes we all have our baggage and crap that occurs. Every family has a few skeletons in the closet that’s for sure. If they say they haven’t they are just having themselves on.

When I arrived home I was greeted by an incredible bunch of flowers from my networking group 4N. What a beautiful thought and gesture. I feel so much gratitude for these people that are willing to reach out and let me know I am in their thoughts.

I haven’t rested today so I am totally whacked by nightfall. I do an experiment tonight and decide to try to sleep unaided by sleeping pills or pain relief – am I mad or not? Let’s see hey?

 

 

Chemo Day 7, Round 2

carrying a loadI slept better! Thank you Lord! What a blessing… I am feeling very flat but better. Today is another big day of errands and responsibilities. That is one thing I am noticing as Marc has returned to work. All of the little things he was taking care of for me have now fallen on my to do list.

Since I was diagnosed last year we have been on the big holiday break, now it’s back to normal life citizens. No wonder I am feeling it more,  I am doing more so it makes sense.  I am no longer being shielded by my super husband.

My back and legs are so sore, like I have a viral illness coming on, but I am sure it’s the chemo. My tongue is so thick and sore, my hands and feet are swollen and still so sore too.

Today was our annual trip to the paediatrician with Sam then I take him to school and it’s off to the psychologist for me. This has been really helpful for me to just get clarity on what is going on for me. Sorting through all of the crap has been really necessary.

This journey has been hard enough without carrying around fear, avoidance, facing your own mortality and all of the weird places your mind goes when you are told you have cancer. If you know someone who is in his place and they haven’t reached out, please encourage them.

On the way home I am stuffed but need to do the shopping – if my family is to eat I need to get food. I finally get home and fall into bed for a rest. I get up as the kids get home from school and start dinner, do some laundry etc. All the usual Mum stuff, as I am sure most of you Mums (or stay at home Dads) can relate too.

By early evening my legs are so painful and agitated I can’t stand it. The doctor calls it restless legs. I am so tired I just want to sit and be still but my legs jump about and feel like there is a little electricity party going on in all of the nerves. Each time it starts I need to shake my legs to stop it. Not relaxing!

I go to bed and medicate myself again with Endone and Valium tonight. I must sleep…. I make a note to ask the doctor if it’s ok to take Valium with Endone as I slip into a thick and blissful unconsciousness.

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.

Older posts