Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: Oncologist (page 1 of 2)

Another visit to the Oncologist

Another night of better sleep, again this cool weather is such a gift. Today I’m off to see my Oncologist again. They always see you in between cycles of chemo to make sure that you are on track.

I join the other women in the waiting room all at various stages of treatment. Some have hair, some wear wigs, somewhere scarves. We all share the physical and emotional scars of this journey. There is this unspoken link between us all, this unspoken understanding that is hard to describe.

You know just by looking at each individual that there is such a powerful story that is their life. Whether or not they’re married or single, parents or not, doing well or struggling. Much of this is hidden from public view. It is only by being on a similar journey that you see the burden on the shoulders and the sadness in their eyes.

My Oncologist tells me that my white cells are now too high. This is because the injection that I need to give myself after chemo has been too effective. the blessing to me is that I really need to give myself three injections after chemo now not five. Woo hoo!  Another small gift, I’ll take it!

My Oncologist also gave me another script for Endone and Valium, to help me sleep and to reduce my pain levels. She described that not everybody gets the joint and bone pain that I am experiencing. She also explains that unfortunately this may mean that my response to Tamoxifen will be similar.

She refers me for some lymphatic drainage massage and I have an appointment for the weekend. The funny thing on my list the today is to have lunch with a very good and very caring friend. She cooks me a healthy and beautiful meal and we just sit and talk. It’s so refreshing to just sit and talk about other things than cancer. It’s amazing how in such a big and busy life that cancer can become the focus. I don’t want this to be the case so this is a lovely and refreshing change.

I get home and have a short rest, yay I’m learning! Unfortunately the rest was not long enough and by 8 PM I can no longer think straight. My entire body is aching and I need to go to bed. It’s been a big day it’s time to call it a night.

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.

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.

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.

 

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 2

chemotherapy picChemotherapy is so toxic. It attacks and kills not just cancer, but also all the living, healthy cells in the body and completely cripples the body’s immune system. – www.cureyourowncancer.org

So as the real chemotherapy enters my body I actually do get a headache and begin to feel nauseous. Now I am second-guessing myself, is it real or am I Imagining it? I ensure that we ask every question we have and take notes. Marc has to do this as I am still wearing the ice gloves.

I feel a little more relaxed, there is some tingling in the hands and feet, we advise the Nurse as this is a bad sign and they slow down the delivery of the drugs. I look around the room to notice that cancer is completely indiscriminate. There are young and old here, men and women. All at various stages, some with hair, some without. Some look otherwise normal, some look really sick.

Marc and I have strangely enough had fun today, we have laughed, talked, joked about. It’s been rather lovely really. Apart from the fact I have a raging headache, feel like I want to vomit and have a weird buzzing pain all over my body, I have had a lovely day.

We have spoken bout he possibility of the new edition to the family in the form of a pup. Marc states that he really didn’t intend to suggest we bought a puppy. I ask him honestly how he feels and he is quite excited. He just won’t show it.

I suggest we just go and look at her and ask some questions. For example how do we ensure that the pup and our older dog get along? We cannot upset our older dog, he has been with us for 14 years.

So we agree that we will pop in and have a look at the pet store. After all we need to head the get some drugs from the chemist, I need a combination of uppers and downers, inners and outers, drugs to make you go potty and drugs to stop you, what a mess.

My tummy is percolating as we leave at 5pm and head to the shops. My body is buzzing and everything feels really surreal. I am in for a ride I reckon.  I determined to remain calm amidst the storm.

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