Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Month: November 2014 (page 1 of 2)

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 :)

Anyone for Scones??

photoSam comes into the bedroom really early. He is really hot and feels sick. It is a really hot morning so I ask him to come sit with me by the pool. He ends up getting in the pool to cool down and I stay on the side.

I’m sitting there when Marc comes out and says hey babe there is a heap of hair on your top. I touch my hair and it just comes away in my hand like fairy floss. I wait for the dread, for the tears but I just kick into ‘manage it’ mode again.

I go onto the bathroom and just keep pulling handfuls of hair out. It’s Sunday and we are due to go to church. So I ask Marc to give me a buzz cut. I didn’t think I would cope with Marc doing this but I am really ok with it.

Marc performs the deed and we do some silly shots along the way. After all when else will I have the chance to have a real Mohawk??? (See picture above.)  Yes I was trying to look like I and attitude – you know punk rocker isn… not sure if it worked…..

I am surprised at how ‘ok’ I am. I was so worried about the emotional weight this process would take but I actually felt free. I felt at peace.  Marc takes a photo of the two of us, (see next picture), and before I know it he has posted it on his timeline on FB!

IMG_1386

Under normal circumstances I would not want my photo posted at all, let alone my first bald shot.  Again I was ok with it.  I did ask him to let me know “before” he does that just so I am aware.  But still amazed at how I felt.

I wear my cap to church for the first time. I feel like I stand out like a sore thumb but I will get used to it.  One yucky thing is how hot my head is.

In the foyer at church Marc is talking with a new woman he has just met, (he does this all the time). He introduces me to Helen from Chicago. She is a bubbly friendly woman. It’s her first time here, she is on holiday and has popped in.

As we are walking into the service, she stops me and says “can I ask, have you got cancer?” I respond openly “Yes, Breast Cancer, I lost my hair today so this is the first time I’ve worn one of the hats.”

Helen tears up as she explains to me that she is a breast cancer survivor and this is her anniversary celebration trip for ceasing treatment. She explains her hair has grown back and she is feeling human again. She looks me right in the eye and says “It’s going to be ok.” By now we are both crying and hugging. It was just such a beautiful miracle to meet her on the day when I was feeling vulnerable and unsure.

The gift of meeting Helen that day will never be forgotten. This is another example of how God has just provided for me when I need it. I am so blown away at the miracles and endless support and love that surround me.

I never thought I would say this but my B day has been such an amazing day. It has been such a gift in more ways than one. Now its time for me to embrace my scone.

Laughter is such great medicine

laugh or cryI felt better today when I woke up, thank goodness the Truck had not run me over again! I am excited as I am meeting one of my best girlfriends for lunch and a movie today. We saw an action movie, I fell asleep half way through, sad but hey under the circumstances I suppose it is understandable.I felt better today when I woke up, thank goodness the Truck had not run me over again! I am excited as I am meeting one of my best girlfriends for lunch and a movie today. We saw an action movie, I fell asleep half way through, sad but hey under the circumstances I suppose it is understandable.

We had such a great day laughing reminiscing and sharing. We have always had a relationship where we thrive on each other’s energy and ideas. She has the ideas, I follow through, it is a great balance.

Friends are just so important. I know before I was diagnosed with cancer and I was seeing a counsellor for some stress management support. She asked me what I did to have fun and I couldn’t answer her. My world had shrunk to work, managing family stuff and more work. I was struggling with a unhappy relationship with a loved one and I was really stressed.

My cup was empty and I just kept expecting myself to produce more. I am sure I was on empty for many years. This journey has been teaching me how important laughter, friendship and prioritising me is. All work and no fun made Kylie a very sick woman.

So if you are struggling with something, whether it is health or stress of some kind, take an honest look at your life, at what makes you feel good. Promise that you will do more. Fill your cup so you can be there and be fully present for others. Letting yourself become run down comes from a dysfunctional place of self importance, (everyone needs me.) In fact, what you are doing is the exact opposite. You are being really selfish because no one gets the best you.

What a Big Lesson for me!!

I came home and had a lovely dinner with my boys and we watched a silly movie. We laughed and laughed. I noticed my head and scalp feel really tingly and sore. I wonder if tomorrow will be ‘D’ Day or ‘B’ day. Only time will tell.

Sam has not been well since he came back from Summer camp. He has a fever and a headache. I asked him to come in through the night if he needs me.  I hope he isn’t coming down with something.  No matter how sick you are a Mum never switches off.  Makes me really miss my lovely Mum :(

 

Which way did that Truck go?

 

body outlineI woke feeling like a Truck had hit me. Damn that Truck. My head is aching and fuzzy, sinus all clogged up, body aching and I just couldn’t seem to get going. I had a ‘to do” list in my head but when I got up I realised I was not going to win this battle so I went back to bed.

That’s honestly one of the things I struggle with so much along this journey and that is the unpredictable nature of each day. No matter what you do, you have very little control over how your body will be. I used to be like the old reliable car, every day it would start without question. Yes, it was in need of a service or two but it kept on going.

Now I just can’t promise anyone anything. Now I feel like the car that is the lemon. No matter what you do something goes wrong. This is a very big adjustment for me to make.

So, I listened to my body and got up in a few hours to eat, then exhausted went back to bed again. This lingering headache just will not go away. I am beginning to wonder if the last two “good days” meant I over did it? I’m just not sure anymore….

Our kids get back from camp today – we are excited and have missed them. I am still waiting for my hair to fall out but it seems today is not the day, Yay! I did warn the kids that when they come back I might be bald. They were both cool with it. How blessed am I? I was half waiting for them to ask me not to pick them up, how embarrassing to have a baldy fritz picking you up from camp?

At least I reckon I would have been embarrassed as a teen. My Mum going through her treatment never had chemo so she didn’t lose her hair. I wouldn’t have meant to be mean, but the teen years are tough enough without a bald mother to contend with too.

We had a friend over for dinner and we all sat about the table talking about love, life and the universe. It was really a great night. I am reminded over and over how blessed I am to have such a great family and group of friends surrounding me.

Seeing the Oncologist today

road w quoteWoke feeling pretty good today. I have an Oncology visit again today. I still can’t wrap my head around that. “I have an oncologist.” This is a medical doctor I never thought I would have.

She is helpful, she listens, she writes me scripts to help with pain, digestive issues and sleep problems. Man I am taking so much medication. My Blood tests results were good, my liver is struggling but my white cell count was in the normal range! Yeah!

I also had acupuncture today; my positive blood results tell us both that the treatment is supporting my body well. I really feel like I am doing what is right for my body and me.

Came home had a rest and then out to dinner with some friends, rather a lovely day really. I am certainly feeling much less sick than before which is great. Although they say just as you begin to feel well again you head in for the next round.

I must say I am feeling uneasy about the whole “waiting for my hair to fall out” Scenario. Talk about mess with your head.   It is due any day now. I have a cap in my bag at all times; I am making all sorts of jokes like “don’t be in a strong wind.”

It is really bizarre and I am afraid to touch my hair, just waiting for it to fall out in my hands.  It is unlike anything I have experienced before.  Man I hope I have a nice scone.

 

Finding my inner child

letting-your-inner-child-outI am awake at 230am in a complete sweat, I had to spray myself and stand in front of the fan to try and cool down. I eventually go back to bed, but it is only broken sleep interrupted by bouts of me being on fire.

My head feels cloudy today, unsure if it is because I had a glass of wine with dinner last night. Found it hard to say No at the lovely French restaurant.

I decide to do some light pilates today, try and get this body moving again. We also had a professional development session with one of my business mentors. Despite stopping work and pausing the business we decided to continue to invest in ourselves and in the business.

It was a great session in fact it is where the idea to blog is born! I feel so determined to share my experience so that others don’t feel alone. I know everything I have read has helped me to feel less weird and more part of a community of people experiencing similar things.

I saw the psychologist today, he was recommended by my Naturopath. She said that the shock of such a diagnosis and surgery etc can take quite a toll and also can sneak up on you. I have felt in coping mode since it all happened and wonder if I am ever going to crumble or lose it completely.

It was a really interesting session. There was a real focus on me and acceptance of myself. For me to focus on what I am doing that works and to learn to appreciate myself more. Such foreign concepts for me.  Another bonus is that he is a cancer survivor, so he knows what it’s like to be part of “the club.”

We identified that the part of me that had to grow up really quickly at 8 years old when my Mums cancer had spread to her bones has been a real driving force for me. Whenever things get tough I go into Mrs Fix it mode as the expense of my own well being. This little girl who needed to be loved and protected from the fears of her mum dying felt she had to forgo those and be the support for her family. Too much for a little girl to do. So its no wonder I turn into a workaholic, lacking the ability to nurture myself or be kind to myself.

So I will be learning to reconcile with that part of my past, I will learn to allow my inner child to know she is safe and loved and learn how to be carefree. Something I have no concept of.

Lots of learning here for me, but I am excited. I always promised myself I would take whatever I needed to take form this experience, to learn and grow. I will not go through this without taking from it all I can to become all that God has destined me to be.

I am already seeing how little I took care of myself. How I have always given so much to others but rarely replenished me. No wonder I have felt exhausted for so long. How exciting to find my inner child, to learn how to be carefree, to have fun, to fill myself up so that those in my world get the best of me!

Tonight we went our for dinner with our close friends to the Red Lantern in Surry Hills, such a yummy place to go. If you haven’t been please go, it is truly amazing Vietnamese cuisine. Even with my struggling taste buds it was amazing.

All in all a great day, a long one, but a great one. Now me and my inner child are going to bed.

Summer Camp!

summer timeIt’s Summer time, and every summer our kids go to “Summer Camp.” This is 3-5 days when the kids go off and do crazy stuff and the grown ups get to have a summer break too.

I am feeling ok as the day begins, I am still sore where I had the mastectomy, I’m aching all over but the mouth ulcers are beginning to get less painful. We drop Sam to the bus for camp and he says that he fears he will starve while he’s away. Such a drama queen, my boy! I have packed him so many snacks that even if he ate nothing else he would survive.

I do the usual mum thing, “brush your teeth, use sunscreen, remember to drink plenty of water, Oh and have fun!” Sam hears “Blah Blah blah ….Fun” Typical parent teenager interaction really J

Marc and I go home and have a relatively easy day. I poddle about and have a rest in the arvo and then we have a date night which is exciting.

On the way into the city we got to Oxford street and go to a wig and hat shop to get some bamboo caps so that I am prepared when my hair starts to go. It’s so weird but the ladies are lovely and I pick a few different colours. I’m such a girl scout; I need to be prepared. But seriously, when is it a convenient time for your hair to fall out?

We decided to go to Gold Class and see “Walter Mitty.” We went to a little French restaurant for dinner and then on to the movies. What a great movie, so good to get out of my own head for a while and be in some ones else’s. It’s so nice to be doing “normal” things together, just spending time, and especially not talking about cancer.

Such a lovely day and I didn’t even need Endone tonight! Progress……

Some days are just hard

photoSo I am now Day 10 post first chemo round. I slept ok thanks to many drugs now at my disposal. My ovulation pain has stopped which is great, one less pain.  But the heat coming from my body is unbelievable, not even in a hot flush sense but pure heat radiating from my hands , feet, torso, it’s amazing and really uncomfortable.

Marc will be sitting next to me and can feel me radiating.  My hands and feet are swollen and hard to use, so walking and little things like opening jars etc are hard to do.  I had to have a blood test today to ensure my white cell count does not go too low.

Highlight of my day a great friend from my school days comes to visit. It’s the first time I have seen her in probably 18 months. We have our oldest boys (13 now) just 2 weeks apart and they get on really well too.

We have a simple lunch, I am so excited to have her and her family here I am not focusing just how achy and yuck I feel. They leave after a few hours and I decide to lay down. Small bursts of excitement work for me at this stage.

I drag my sorry butt to my bed and as I lay down my beautiful puppy Betty Boo (yes that her in the picture) pees on the bed. I seriously want to cry. She doesn’t know any better, it’s my fault that I didn’t take her outside and my tank is in the negative now. Besides, look at that face how can you get cranky with someone so cute.

So after I change the sheets and put them in the washing machine I lay down. Oh man how good it feels to lay down and not move my aching bones. Then I need to go to the shops to get food for dinner. I am exhausted, aching, sore and having pain at my surgery site, (right mastectomy).

It’s weird I feel the nipple and all kinds of weird sensations sometimes like let down when you breast feed. Very strange indeed as there is nothing there.  My right chest is concave, unless you see it it is hard to imagine.  It’s not just like a flat chest like a Mans, its concave.  It is truly strange when you are used to the lovely womanly curve that used to be there.

As I swallow the Endone that will allow me to sleep I am thankful for old friends, for laughter, for clean sheets and for my family that I love and that love me.  Tomorrow is a brand new day.

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