Bald Barren And Boobless

An honest and comical reflection of my journey through breast cancer

Tag: cancer diagnosis

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.

NEWS FLASH!!

newsflashHi all,  after some recent feedback I thought it was critical to provide some clarity around this blog for you all.

I am writing this blog retrospectively, I am currently just under 12 months from when it all began mid November 2013.   The reason I am clarifying this for you all is that so many people have said to either myself or my Husabnd, “Gosh has Kylie started Chemo again?”

The answer is “No”, my chemo ended some 6 months ago however I am certainly still coping with the aftereffects of this horribly toxic stuff.  Things such as, lethargy, gastro issues, bone and joint pain, taste issues (taste buds still weird).  So apart from today, whenever you read a post it has been written retrospectively.  I needed to do this as the idea of writing as blog was not one that came about when I was diagnosed.

In fact, I was blessed with the fact that I had kept a journal.  This is the longest I have ever consecutively kept a journal and if there is anything I can encourage is for anyone going through a journey that has so much to offer – keep a journal!!

It is such a gift when you can look back and reflect on your journey with such detail.  Particularly, if your memory is compromised for whatever reason like mine has been.  Self reflection is such a powerful exercise to take part in.  If all we really are in control of lis ourselves and our thoughts  —-> actions then self reflection is a necessary part of our evolutionary joinery into better people.

I have always been so driven to take whatever learning has been thrust upon me.  I kinda think, if I have to go through something hard and crappy I may as well find some good in it.  Although it is weird to say this, much good has come from this experience.

I am learning that I am a “human being” not a “human doing.”  My output does not define me, I am strong in many ways, I can see the good in a very bad scenario, I have amazing friends and family that have stood with me, my family is phenomenal, my kids are resilient and have such big hearts, I know who I am in God so much more now.   I also know that I am never alone, He is always with me.

I also have a very large fire burning in my belly to change a few things in this world so that less women and families have to endure want we have over the past 12 months.  There will be positive change, I am determined.

So for all of you lovely and loyal supporters and readers out there, I am not currently going through chemo, I am doing well I am recovering from my last surgery which was about 5 weeks ago and things re going ok.  It is a long journey, it is a hard and unpredictable journey but I am very confident that I will continue to do well.  At the very least – I am learning a heck of a lot!!!

Thanks for all of your support and prayers, it is such a gift I cannot tell you how much it means.

 

 

 

Day 3 post chemo – I have entered the valley of the shadow

valley of the shadow So as I have said, I feel like I have entered the valley of the shadow of death.   Don’t worry folks, I don’t plan on staying here. I have not slept at all well through the night. I am in so much pain I just cant get comfortable. My whole body hurts.

I’ve only felt something similar when I was involved in a head on collision many years ago and every part of my body felt bruised and battered. This is similar but with a toxicity like a 24 hour bug from hell.

The bone pain in my legs back and hips is unexplainable. My head is hot and fuzzy, my body is stiff and my entire digestive tract feels bloated and inflamed. Like my system is screaming at me “WHAT HAVE YOU DONE!!!”

I was in the kitchen trying to find something to eat as I feel weak but am scared to upset my system any more. Samuel my quirky gorgeous 12 year old son enters the kitchen and says “Ohh mum your hair has started to fall out!” In my own mind scream, “Not know I am so not ready.” The look on my face must have been priceless, as he soon tells me he is only joking. Oh kool, hah hah love, that’s so funny!!! NOT!

So now I feel paranoid as well as like I have been struck by the toxic avenger. It reaches 11am and I am required to give myself an injection. The injection is to protect my body from dropping too low in the blood count. The nurses showed me how to do it on the first chemo day. They give you the option to come in for 5 days and have it or you can do it yourself.

Guess what I chose? Yeah, don’t want to be a burden, I am far too practical as well, so how hard can it be? The actual injection itself is not hard, you stick yourself in the tummy and you push the syringe then you take it out, Simple!

I know what it feels like, sometimes when you get just the right angle you hardly feel it, its great. Other times you get the wrong angle, and it can really sting and burn. So here I sit counting “1, 2,   3”…nope. Again, “1, 2, 3”…nope. Again, “1, 2, 3”…nope. Now I am getting frustrated with myself, “Kylie JUST DO IT!!!!”

So I do. Funny, it’s nowhere near as bad as I think, a little sting but ok. Man it is such a battle of the mind! I feel slightly proud of my delayed bravery.

The day progresses and I just get worse; the toxic avenger has turned into a freight train that has run me over. Everything hurts; even blinking is hard. I fall into bed and stay there. All of the pain is horrendous, my head and body is hot and buzzing with toxicity. I pray for sleep, please come and swallow me into your peaceful embrace.

 

Day 1 Post Chemo

Good-health-poor-healthSo surprise, surprise I didn’t sleep too well. In fact, I was woken every few hours by the need to use the bathroom due to violent and acidic diarrhoea. Sorry folks but when you signed up for this I promised the truth.

The clock ticked past 245am then 4am. I took some more pain meds for the back and leg cramps. It is so hard to try and get comfortable in bed. I watch some TV in bed, which passes the time but is not ideal.  Midnight to Dawn TV is awful…….. Just saying.

Morning finally comes and sadly today we go to the funeral of a close friends Mum. It occurred to me for a Nano second to decline due to my fuzzy head, nausea and exploding acidic bowel but I could not say No. These friends have been so kind, so generous to our whole family the least we can do is go and stand with them, celebrating the wonderful life of their precious Mum.

We arrive and my mission is to case out the loos in case of a bowel emergency. There are no major issues, thank goodness.  However, the entire time I feel surreal like I am hovering outside of myself, I am now not sure if it’s all in my head or not.  Regardless, the service was beautiful, this woman was treasured by so many.

We pay our respects and head home where I go straight back to bed. I take more pain meds as the cramping in my back and legs has not subsided. I decide to go for a walk and Marc comes with me. Poor love he must feel like he is in a slow motion movie. Believe me I am not fast at the moment. I make snails look like formula one racing cars.

I feel like I have a horrid hangover that has morphed into a stomach bug on steroids.   Despite this I made some soup and amaze balls for myself. Clean eating is the way to go.  I keep saying to myself that i need to put in as many nutrients as I can.  I hope I can keep going as I traditionally do do too well on healthy for when I am experiencing nausea.  When I and morning sickness in my pregnancy I was well known by Pizza Hut ( Meat lovers Pizza), Maccas (their shakes) and Michels Patisserie (ohhh sausage rolls) just to name a few.  I was sure that I would give birth to a cabanossi I ate so much meat lovers pizza.

Getting back to the Clean Eating, if you’d like the recipe for amaze balls let me know and I will share it on the resource page. They are wheat, sugar and dairy free and pretty AMAZING. I learned the recipe form Sara Wilson who is a wonderful ambassador for clean eating and a healthy lifestyle.

Betty boo is still real cute, real sweet but a more excitable more boisterous version of her is emerging. She has such a spirit, I am loving it. I am going to ensure we train her well though J

Well I am back off to bed and I am praying for respite tonight.

Yay! It’s Chemotherapy day!!! Part 4

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

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

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

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

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

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

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

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

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

 

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.

Decisions to be made

tough decisionMonday the 25th November 2013

 

We see the Doctor again, he says “the second lump in the right is cancer, the left is benign”. He then says “You need a mastectomy, and I can do it on Friday”.

In my head I am saying to him, as if you are touching me dude! You can’t even remember my name how do I know you will remove the correct breast! I actually say, “I want a second opinion and will see another breast surgeon”. He mumbles uncomfortably, “yes sure you can do that, it is your right, I am sure he will say the same things as I just have.”

I call the Doctor who was recommended to me by the radiologist. He is back from holidays this very day; they agree to squeeze me in this Wednesday as in the day after tomorrow! – Thank you God. At least there is minimal wait time this time around. I don’t realise until much later how unusual this was. This doctor has a waiting list of more than 3 weeks!!

We begin making contact with everyone we need to tell. This is so taxing. Repeating the same story, dealing with the shock and emotion of the other person, making sure they are ok with your cancer diagnosis, it takes a real toll.

We get practical and do some group text messages, which really hit home for some of our friends. They respond with shock, calling to say “how can you tell us by text?” At the time this was really hard however reflecting back I am sure this was just their shock speaking. Practically we seriously couldn’t tell everyone we needed or wanted to tell.

We know more now so it is decided that we need to tell the kids. For those who don’t know we have a blended family. Marc has two amazing kids Josh, 20 and Monica now 18. I have the wonderful Samuel who is 13. Moni and Sam live with us in Sydney, Joshua lives in Adelaide closer to his Mum. Marc tells his kids and we tell Samuel. I decided to be really open as I remember what it was like for me as a kid not knowing the full story with my Mums health crisis. When you don’t know you fill in the blanks and that is a scary place.

I used the word cancer, and encouraged him to ask questions. His first question was, “will you lose your hair?” I said “maybe, maybe not, that still needs to be determined, but I am having surgery to remove one breast first.” Samuel is such a deep thinker, he took his time and then said “well Mum, if you lose your hair, I will get you a really cool beanie.”  What a sweet heart!

I watched him like a hawk to ensure he was ok. I encouraged him to ask me anything he wanted too promising that no question was silly or too hard. I also shared with him that I really believed that I would be ok, that I felt that God would look after me. I didn’t talk much with Moni about what was going on, she seemed to internalize it and to be honest at the time this happened we had not been in a great place for a long time.

On Wednesday 27th November we see the Doctor for a second opinion. He agrees mastectomy is the best course of action and can do it next week. I say “the other Doctor said he can do it Friday” he says, “let me check, oh I can do it tomorrow.”

Holy crap that was quick! He explains the process and says that he will also do a sentinel node biopsy to determine if the cancer has spread to the lymph nodes because that will change treatment options. I explain that based on my family history I want both breasts removed and now is preferable.

He listened but said “Look my first priority is to ensure we get the cancer under control, until we get in and do the pathology we don’t know what we are dealing with. We need to control cancer first, then discuss the other mastectomy, but I wouldn’t necessarily agree that that is your best course of action”.

I appreciated his honesty and candor and agreed that first priority was the cancer. I also needed to know that he would listen to my perspective, and I felt he would. So we agreed to go ahead and left with all of the paperwork.

We leave and call HCF, do you know until this point we didn’t even know if we were covered. Even with cover, upfront payment was $2000 just for the surgeon. I am nervously on the phone with a consultant and yes we are covered – thank God!

Marc and I then book in for surgery tomorrow and then go and get some new PJ’s for hospital. I’m going to need stretchy lose tops that allow good access to my chest.

I decide to make tonight a celebration so we have a “bye-bye booby” cake that night. I make a cake to represent my right breast. I want tonight to be a celebration not a sad event. So we crack open the champers, we laugh at my ridiculous rendition of a boob cake, it really doesn’t look like a boob. Any caterers or creative cake makers out there, this may be an opportunity for you?

What a day! What a week, and tomorrow the real fun begins.