Sunday, May 30, 2010

Intravenous Domestos - part 5

I felt informed and anxious about the side effects of the new drugs heading into intravenous domestos number five. I know that pharmacutical companies are obliged to list all the possible side effects and that it doesn't mean that you are going to experience them. However, they were pretty horrid and I didn't want to involve myself in anything that may remotely result in any of these side effects. I was particularly anxious about my nails falling out. I had lost my hair and my dignity, I wanted to keep my nails. I had been speaking with nurses and they had told me that the new drugs I was going on seemed very well tolerated and that the side effects were not so severe as my first drugs. I found it very helpful speaking with the breast care nurse about the side effects. She was very kind and went through the extensive list of side effects and I asked her how often she had heard about people experiencing them. Apparently the nails falling out doesn't happen often, but then again I did have my first car stolen (and returned) five times, so I am not a big follower of statistics. I also read that about 700 women under the age of 40 are diagnosed with breast cancer every year in Australia. Which, when you think about it - doesn't seem that many, especially since I know about four others.

I had my usual sleepless night before chemo and was feeling physically sick on the drive to the hospital. In order to avoid my nails falling out, I had to put my hands in ice gloves for the duration of the treatment. I am not sure how it works, but I think it has something to do with my circulation. One thing that I do know is having my hands in ice gloves for two hours is bloody painful. However, I am very stubborn and didn't want my nails to fall out, so I just put up with the pain. I felt the risk of frostbite was worth keeping my nails.

One thing I was not looking forward to was that 5-7 days after the drug infusion, and after putting up with the usual side effects, there was a second wave of side effects that kicked in. So, after the first week of the usual exhaustion, nausea, headaches, insomnia, confusion, dizziness and aching joints; I could look forward to body sores, mouth ulcers and bleeding gums. I must admit I was looking forward to (well, that might be too strong a term), but I thought that the diarrhoea would be a welcome change to the constipation. However, the severe diarrhoea came after a week of severe constipation. I kept having these waves of diarrhoea, dizziness and nausea all at once. I would go to the bathroom and not be sure if I was going to poop, puke or pass out! When I felt like this, I would call my mum, then sort out the poo issue. That way if I puked or passed out, I knew the cavalry was on its way with a bucket and a cold compress. On day five, the mouth ulcers, body sores and bleeding gums kicked in also. It was horrid. I couldn't eat properly, and when I did manage to eat, I had to keep rinsing my mouth out as my gums would bleed so much all I could taste was blood. It was a very effective diet, but somewhat extreme.

It was during this second week that I was exposed to a virus and was fighting a fever for five days. By the fourth night of having a high temperature, my oncologist said that if it didn't get below 38 degrees, then he would look at putting me into hospital until my chemo was finished. The thought of going to hospital for just over two months was less than appealing. As my mother was hovering above me armed with a thermometre, I was thinking cool thoughts. Thoughts of Greenland, Iceland and polar bears filled my head. As I was waiting for the thermometre to beep, I felt sick with worry. My temperature came out as 37.9 degrees, I was saved by .1 of a degree!

It was also during this second week that I think I hit my lowest point. I was tired, cranky and in pain. I was just over the whole thing and wanted it to be finished. I thought about all the people that had told me that these drugs were better tolerated than the first ones I was on. All I have to say is 'liar, liar pants on fire'. I know that everyone is different and people have different reaction to drugs, I just seemed to get every side effect possible! These drugs knocked me for six. It took me a good two weeks before I felt well enough to leave the house.

Thursday, May 27, 2010

Intravenous Domestos - part 4

As I prepared to head into intravenous domestos part four, I had become used to dealing with the side effects. The chronic exhaustion, nausea, metallic taste, dizziness and bathroom issues had become part of my daily life and I was getting used to having them around. My lead up to each chemo treatment hadn't changed - sleepless night and feeling sick at the thought of going to the clinic. I knew that the chemo was going to make me feel better and the staff were great, but I hated going and had it in my head that it was only eight trips and I could survive that. However, I had learnt that the drug I had to have for twelve months was also to be administered through my portacath, so that meant 14 more trips to the chemo clinic. So, treatment number four was half-way through, if you ignored the other 14 trips over the next 12 months. I was so disappointed to know that I would have to go through the same process, at the same place, 14 more times. The people around me were excited that treatment number four was a milestone, and I guess it was, as it was the last of the first lot of chemo drugs. However, I found it hard to celebrate anything.

The accumulation of the chemo was taking effect and it was taking me longer to get over the worst of the side effects. I was still overwhelmed with how exhausted I was. I would have a shower, then have to have a lie down to recover from the effort of showering and dressing. Some days I would need a lie down straight after the shower, so I would have the effort to get dressed. During this time Barney was my constant companion. Even whilst I was showering, he would be lying on the mat, sticking his nose in the shower, just to be close to me.

Another thing that I felt hard to deal with was how much I had changed physically. I would catch my reflection in a window and wouldn't even recognise myself. I had gone from looking like me, to Kojack to Uncle Fester. I was bald, pasty, pale and had dark rings under my eyes. It was not a good look and I avoided mirrors as much as I could. When I did look in a mirror, I wouldn't connect that the person looking back at me was me. I had joked that the half-boob job, new hair and new figure were all part of the extreme cancer make-over, but it was hard to see anything past Uncle Fester.

Once intravenous domestos four was finished, I started to think about the new drugs. For the first time since my diagnosis, I looked on the internet for information about these drugs. I went to the pharacutical company's website and downloaded information about the side effects. The list was long and horrid for both drugs. Just when I was learning to deal with the side effects of the past three months, I had new ones to deal with. I do have to admit though, I was looking forward to the severe diarrhoea, it would make for a nice change from severe constipation I had been living with. I was trying to balance being informed and being scared about what was ahead of me. It was good to read the side effects as some of them seem quite minor, like swollen ankles, but if they occur you have to head straight up to hospital as it could be a sign of heart failure. Another side effect that was good to know was that your nails can turn black, flake and fall off. Good times ahead!

Monday, May 24, 2010

Things I have learnt.....

As my journey to Shitville continues, there are a few lessons I have learnt along the way. I have learnt that no matter how many times I brush my teeth or eat mints, the metallic taste in my mouth is not going away. I have learnt that people react to bad news in very different ways and I can't expect people to react in the same way I would. Most people have be amazing and supportive, but there have been a few people who have just disappeared. I know that sometimes it is hard to know what to say, but it is better to call and say 'I don't know what to say' rather than say nothing at all. I have learnt that no matter how my mother tries to disguise egg and make me eat it, I always know it is in there! I have learnt that googling anything medical is not a good idea. I have learnt that sleeping tablets do not work as fast as general aneasthetic and counting back from ten doesn't work. I have learnt that I don't always have to put on a brave face and I can show people how I am feeling. I have learnt that I have a good shaped head to be bald and have a strange brown mark on my scalp. I have learnt that having eyebrows really makes a difference to how your face looks.

I have learnt to be more aware of changes in my body. Not feeling the 3cm tumour and the 17 enlarged lymph nodes scared me and now I notice everything! I noticed a strange tube like thing running down my side from my wound. I showed a few doctor friends and they were not encouraging. After having a look at it one replied 'Ewwww, I have never seen anything like it before. That is the strangest thing I have seen'. I had the same reaction from the radiologist, which was also less than encouraging. It turned out to be nothing, but it was good to have it checked. I have learnt to listen to my body, when I need a sleep, I just sleep. I have learnt that worrying about things doesn't change the outcome. I have learnt when any medical professional says, 'This may cause some discomfort...', that you should brace for pain and go to your happy place. I have learnt to appreciate being healthy and happy. I have learnt that sometimes having four anti-nauesea tablets isn't enough to stop you from being sick. I have learnt that my mother will do absolutely anything for me and at the age of 35 I still need her. I have learnt that no matter how sick I am feeling, I always feel better after a shower. I have learnt that I have amazing friends and family. I have learnt that I can't help but smile when I see Barney.

Sunday, May 23, 2010

Intravenous Domestos - part 3

Round three of intravenous domestos came around very quickly. I had been pretty fortunate so far that my side effects hadn't been as horrific as I had thought. The benefit of having a very active imagination is that the reality is never as bad as what you create in your head. The thing with chemo is that it is accumulative. So it's not like the more you have the more your body gets used to it and the side effects lessen. The more you have, the worse it gets. I was well prepared for chemo treatment, I had lathered on the numbing cream to the point where I couldn't feel half my chest. However, I still find the whole plunging a needle into my chest thing quite uncomfortable. Again, I think that is due to my over active imagination and the not so distant memory of having the needle plunged into my chest seven times.

I had my blood tests done and my white cell count was very low. This meant that my immunity was getting hammered, which is a sign that the chemo is doing its job, which is good, but not good for my immunity. I had to have an injection to increase my white cell count the day after chemo. This particular injection cost $2000. I have vowed never to complain about paying my health insurance ever again! I was told that this was done in your bone marrow and can cause discomfort - but only in the parts of your body that you have bones. So basically from head to toe I was going to be in a world of pain. Usually the week of chemo I keep a very low profile and stay at home. However, I ventured out the next day to the doctor to have my injection. I know it is sad, but I was excited to be venturing out of the house, which is a sad reflection of my social life. The days following the injection, I felt like an old man - tired, cranky, bald, hadn't pooped in days and and aching in my bones.

As it happened, this was also the week I had to go back to the fertility doctor for my pubis pellet implant to stop my ovulation. I had to have this done every 28 days to try and preserve the eggs I have left. It is not dissimilar to having a dog microchipped and involved another very large needle going through my skin. I also employed the use of the numbing cream for this process. Having well and truly succombe to 'chemo brain', I could never remember which side the pellet had to be implanted, so always ended up smearing far too much cream and couldn't feel my pubis for a good three hours. However, I felt lucky to be getting out of the house twice in a week! I think my poor body went into shock with the chemo, bone injection and pubis pellet implant in the space of five days. It took a good ten days to go back to feeling less horrid.

Round three was done, which meant one more round of these drugs and then onto the new drugs, which caused another level of anxiety!

Wednesday, May 19, 2010

Things I miss....

When your life is thrown into chaos, there are many things that change. There are a few things I miss and will never take for granted again. Just litttle things - such as I miss having hair. I put all my hair products and appliances in a box and realised just how much stuff I had for my hair. Not that I am particularly high maintenance, but I still managed to have a lot of hair stuff. Going from having long hair to no hair in the space of a few weeks was quite a change. I miss having eyebrows and eyelashes. It is hard to give someone the evil one eyebrow raise when you have none. At the moment, I look like a pasty Whoopi Goldberg. I was wearing mascara in the hope that it would help keep my eyelashes. However, after one shower, I came out and I looked in the mirror. I was bald and pasty with dark rings under my eyes. I reminded me of someone famous, it took me about five seconds to realise that I looked like Uncle Fester! I miss being able to walk around without people looking at me wondering why I have a scarf on my head. I also miss not being in pain. Waking up every time I rolled over in bed because it would hurt, didn't make for restful sleep. I miss my social life. I really miss being able to make plans for the future. Not that I am all doom and gloom, but I feel like there is a big black cloud hanging over me at the moment. I can't just say 'yes' to invitations, I always have to check about when chemo or doctor's appointments are scheduled. I also miss being alone and my independence. I miss being able to go to work every day and make a contribution. I miss being able to enjoy food and not have a chronic metallic taste in my mouth. I really think the pharmacutical companies should make chemo mint flavoured, this metallic taste is horrid. I would even be happy with rum flavoured chemo when there is a rugby game on, just to give me that rumbo feeling! I miss being able to get in my car and drive up or down the coast on the weekend. I miss not feeling nauseous and dizzy. I miss feeling happy. This time a year ago, I was really happy- my life was going well. I miss having a few rums at the rugby and flirting with boys. Nobody wants to flirt with a female Kojack. I recall one Friday night when my parents were heading out to dinner. I was getting ready for bed (at the late hour of 7.30pm) and my mother kept coming into my room asking my opinion about shoes and accessories. I remember thinking how nice it was that they still went on dates after 42 years of marriage. After they left, I started crying. I missed getting dressed up and going on dates. I miss having energy and not feeling exhausted all the time. I miss being able to see my friends when I want to and not have to see who is blowing their nose or coughing. I really miss seeing my nieces and nephews when I want. Not wanting to get too graphic, but I miss going to the bathroom and not having it be a drama. I miss not having to discuss my bathroom activities with anyone! At the moment bathroom visits can last either twelve seconds or two hours. I remember after one particularly crippling bathroom visit, my dad gave me some topical cream to ease my discomfort. The list of side effects included - dizziness, fainting, nausea, headaches and anal leakage. I weighed up the side effects with how I was feeling and felt that the risk of all of those was better than how I was feeling. If I never have to discuss or experience manual evacuation again, I will be a very, very, very, very happy woman.

I know that this is all temporary and I will be able to return to my old life, but in the meantime, there are days where is sucks to be me. I am aware that things could always be much worse and I am fortunate that I am going to get the opportunity to get better and do all those things that I miss once again.

Tuesday, May 18, 2010

Intravenous Domestos - part 2

I had made the decision that the weekend before each chemo Monday, that I would treat myself and do something nice, rather than waiting around with a feeling of dread about chemo Monday. This weekend I treated myself to a weekend at the Noosa Sheraton. My friend had flown up from Sydney, and we spent the weekend lazing around the pool. I was feeling ok, so it was lovely to have a weekend of indulgence.

Heading back into the chemo clinic on Monday, I felt better prepared about what was ahead, however there were still a few surprises. The first treatment I had my portacath implanted and the needle and tube was already in place. This was done under general aneasthetic, so I didn't feel a thing. However, as they have to access the portacath each chemo treatment, I had heard about a numbing cream which helps numb the area where they plunge the needle into my chest. What I hadn't heard about the numbing cream is that it takes about an hour to take effect. So, whilst I was sitting in the waiting room, with the cream sitting uselessly in my bag, I thought I could put it on when they give me the first of my anti-nausea drugs which also takes an hour to kick in. What I was not aware of was that they plunge the needle into your chest before that for a blood test. I thought I would just suck it up and could cope with a needle being plunged into my chest once. Unfortunately for me, my portacath is quite a deep one and they had a few issues accessing it and getting blood from it. After the seventh attempt, the nurse noticed I was getting quite distressed and decided to take the blood from my arm instead. As I have said before I hate needles, so being stuck seven times was not pleasant. I can't even look at the needles, but I did hear that the last one they stuck in me was 2.5 inches long. My mother was sitting and holding my hand during this process and she said it was like a nail going into my chest. Ever since that experience I make sure that I have tube of the numbing cream in every bag I own. I have never forgotten it since!

Unlike the first chemo treatment, I went home after the treatment had finished. The nurses had advised me that it is wise to get the drugs out of my system as quicky as possible, so I had to drink lots of water. I am always anxious the night after treatment, as I am unsure of how I will wake up the next day. I remember being so worried about not drinking enough water that I drank and drank and drank and ended up getting up about eight times to go to the bathroom through the night, so I woke up exhausted the next day. I had made an effort not to google anything about the drugs I was taking. I thought that if I read everything bad that could happen, then it might become a self fulfilling prophacy. Although, I did read a book called 'understanding chemotherapy', which was a great read. It was good to have general knowledge about what to expect, but not to be so focused on the bad side effects. I just kept thinking that no matter how bad the side effects are, or how sick I got - it is better than having cancer. I kept focused on the fact that it was the cure that was making me sick, not the disease. I knew from the start that they were going to blast me, so I just had to make it through the fall out.

One thing I did find very hard to deal with was the fact that my social life had come to a grinding halt. My friends have rallied around me and have been a great support, but I am a very social person and it has been hard not being able to plan things and just say yes. I always have to think about where I will be in my chemo treatment before deciding to attend anything. Not that the social life was particularly exciting during this time, as I was usually in bed by 8pm. My friends have been great and do not object about dinner bookings for 6pm.

I remember watching Grey's Anatomy season five during this time. As it happened it was the season where Izzy became sick and was having chemo. I was lying in bed watching the episode when she got married. I remember being really upset as her husband was putting her to bed and some of her hair came out. He gave her a big hug, kiss and kept telling her that she was beautiful. I was thinking where is my hot doctor husband telling me that I am still beautiful when I look like Kojack?????? My friends, family and Barney have been great, but it would be nice to have that one person to turn to for support.

Monday, May 17, 2010

Life as Kojack

In the days that followed the head shaving, my hair continued to fall out, but only in certain spots. I was examining my head in the bathroom mirror one day when my mother walked in. I said to her, 'I look like a......', she finished the sentence with '....a mangey dog'. It was brutal, but true. It was at that point I decided to lather my head with shaving cream and shave the remaining hair off. I would rather look like a female Kojack or a chuppa chup than a mangey dog. I have been told that I have a good shaped head to be bald, but still do not feel comfortable to leave the house without anything on my head.

During this time I had returned to work. It was a novelty to leave the house and not have to go to a hospital or doctor's appointment. I was determined to keep my life as normal as possible. I wasn't doing any recruitment, and was only working a few hours a day in the weeks I was up to it, but it was a great boost to my spirit. My work have been incredible. When I was first diagnosed I was worried that I should resign because I was not sure what was ahead of me. Being in recruitment and working in a sales based commission role, being out of the office isn't exactly good for the office budget. I was reassured by my manager, regional director and international ceo that resigning was out of the question and I had their full support throughout this process. It was a huge relief to know that one thing I didn't have to worry about was my job.

I work in the city and was surprised by the amount of people who looked at me because I had a scarf on my head. I would often get people just staring and also supportive smiles from middle age women who could empathise with my situation. I thought that I wouldn't go down the wig route and just stick with scarves. That was until people started staring at me. I had noticed people with wigs and they look like they are wearing wigs, which means they are bald underneath which defeats the purpose of wearing a wig to hide the fact you are bald. I had bought my season tickets to the Reds and thought that if I was going to the rugby, then I wanted to be as inconspicuous as possible amongst 20 000 people. I went shopping with my mum and my six year old niece. We tried on a few wigs, except the knee length pink one my niece picked out, which would defeat the purpose of being inconspicuous. We walked out of there with my new $600 hair cut in a bag. I have been surprised how warm it is to wear hair!

I have found that some strangers have been amazingly supportive and other people have been horrid. I remember being out one night with a friend, having a drink before going to a movie and the manager of the bar came up to us and gave me a $100 bar voucher. I asked him why and he said that there was a man who wished to remain anonymous, but saw me sitting there with a scarf on my head. His fiance had just finished chemotherapy and he wanted to give me a present. I was very touched by the kindess of a total stranger. As I said, some people have been horrid. I went to a large bottle shop to buy a present for a friend. As it was raining and we were without and umbrella, my mum dropped me off as close to the door as possible, which just happened to be a disabled spot. As it was in the early afternoon and the car park was not busy, mum stayed in the car as I popped in to get what I wanted. My mother never parks in disabled car parks, but as it was raining, I wasn't going to be long and there were other disabled parks available, she thought it wouldn't cause any inconvenience to anyone. I was lining up to pay less than five minutes after entering the shop. There was only one lady serving customers, she stopped serving customers and went outside to where my mother was parked. She started shaking her walking stick at my mother and yelling 'Are you disabled?', mum replied that she wasn't, but was just waiting for me. The lady starting yelling at my mother again, 'If you don't have a disabled sticker, then you don't deserve to park there'. I was somewhat mortified by this display and thought that when I was served, I would explain to the lady that my mother was waiting for me, as I couldn't afford to get wet in the rain. I was standing holding on to my trolley looking tired and weak when I was served. I apologised to the lady and said that my mother was waiting for me. She looked up at me and said, 'If you don't have a disabled sticker, then you don't deserve to park there'. I said that we were not going to be long and that I couldn't afford to get wet in the rain. She just looked at me and again said that I didn't deserve to park there. It was only when I got into the car that I wished I had said to her, 'You don't get a disabled sticker when you have breast cancer'. My mother had moved the car to the other side of the car park, so I had to walk in the rain to get to the car. I told my mother what the lady had said to me and I have never seen my mother so angry. She parked the car again and walked back in the shop and yelled at the woman! My mother is usually a very calm person, so I took this as a sign as she was somewhat stressed! It was upsetting and unneccessary that she had to explain my medical condition to a total stranger all because of using a car park for less than 10 minutes.

When I was first told that I would have to have treatment every three weeks, I thought the time would drag out. However, being totally laid out for the first week or week and half made the time go very quickly. Before I knew it, I was heading back to hospital for intravenous domestos round two.

Monday, May 10, 2010

The arrival of Barney

The week at the coast was very relaxing. Not that it could be anything else, I had no energy for anything apart from relaxing. It was good to get down to the beach every day and even managed to make it to a movie. It was a relief to have the first chemo treatment over with. I think what scared me the most was the unknown - not knowing how I would react to the treatment. By the end of the week, I was feeling better, not great, but not horrid either. During that week I had done some google research about dogs. I liked a groodle - cross between a poodle and a golden retriever. I found a place that had some and drove there to have a look. I was given very strict instructions from my mother that if I didn't fall in love straight away, then don't buy him. Armed with two friends for support, we had a look at the two groodle puppies. When I picked up a puppy and his big black eyes and black nose looked up at me, I believed in love at first sight.

People were split about the idea of getting a puppy. Some people thought it was a great idea and exactly what was needed for this year. Others thought that it was not a good idea and I am still unsure as to why. How could a puppy be a bad idea? Especially one that is soft and golden and looks like a teddy bear? Now I am not one of those crazy dog people that treats their dog like a child, dresses them up and gives them two names. And this blog is not going to turn into a long running summery about Barney and his activities. However, I will say that he has been a delight. There was a point that we thought he was part poodle and part weedle, as those seem to be his two favourite activities. In my research about groodles, I found that they grew to about 20-25kg. However, as Barney's paws grew at a very rapid rate and got as big as my palm at four months of age, I started to feel a little uneasy about his size. I am sure we will be able to put a saddle on him and let the kids ride him around the yard. I keep telling myself that it means that there is just more of him to love. This year has been tough, but Barney has managed to bring a smile to my face every day. I take him to the dog park when I have the energy and other days I kick a ball around the back yard with him. On the days when I want to stay in bed all day and do nothing, there is always a little fuzzy paw knocking at my door at about 8am to tell me to hurry up and get out of bed.

Exactly two weeks after my first chemo treatment, my hair started falling out. I found this to be the most traumatic part of the whole process. I knew it was going to happen and I had cut my hair short in preparation, but nothing can prepare you for when your hair starts falling out in large clumps. I think I was also worried that it was the first time that I was going to look like a sick person. Going from having long hair to being able to pull out my Carol Brady style in chunks was very upsetting. Although, since I hated the hair cut I had at the moment, part of me was happy it was evacuating from my scalp. I had made the decision that when my hair started to fall out, I was going to shave it. I had seen some people at the chemo clinic who were clinging to their last strands of hair, no offense to them, but it really isn't a good look. I didn't want to be like a middle age man clinging to the last strands of hair and trying to hide my baldness with a comb over. I did have very thick hair and even after three days of it falling out, you couldn't really tell. My mum said that I shouldn't shave it just yet, I should wait until it started to thin more. I couldn't imagine anything worse than watching my hair fall out in clumps for a week and then having to shave it. It was just delaying the inevitable.

Early one Sunday morning I went to my best friend's house and had her husband shave my head. She cut it into a mullet first, so I was definitely happy when it was shaved off. I started out with a three blade, then went to two blade and came home with a one blade. I remember being really upset when I got home. I just went to my bed and started crying. Mum knocked on the door and said that there was someone who wanted to see me. I didn't want to speak to anyone, but she walked into my room and put Barney on my bed. Barney snuggled into my neck with his little golden nose and promptly fell asleep. I must have fallen asleep as well, because I remember being woken up a little while later by Barney hiccuping.

One good thing that came out of the whole hair falling out process, was that my brother made a movie called 'Missing Imfollicle'. Loosely based on Mission Impossible (and not breaking any copywrite laws) he made this movie with all my nieces and nephews to help them understand what was going to happen to Aunty Karen's hair. I was worried about how the kids were going to take a bald Aunty Karen, but they have coped very well. My niece Lucy now thinks I have silk hair, thanks to the large range of Oroton scarves that are always wrapped around my head. After my head was shaved, I went a bit nuts at Oroton and bought quite a few scarves. I told the sales lady that if I am going to be bald, I am going to be stylish! She didn't quite know how to take that. Looking back at that time now, I am very glad that I shaved my head when I did and I am also glad that Barney came into my life. He is just divine and makes me smile every day.

Sunday, May 9, 2010

Intravenous Domestos - part 1

I had made it through the operation and the egg harvesting, so I could now tick those off my list. For someone who hates needles, I didn't make a fuss about my regular visits to the surgeon for him to drain my wound with an enormous needle! Luckily he knew which nerves he had cut in the initial surgery, so he went through numb spots. However, faced with six months of chemo, I was starting to feel nervous. Heading into an operating theatre for the third time in four weeks, I was used to the process. I did make a special request that they slow down the saline IV, so there was no repeat of the highly mortifying bed wetting incident. The operation involved the implanting of a portacath, which has a tube that is fed through a blood vessel which wraps around my heart. They are recommended for people who are having a lot of chemo, as they don't have to stress out your veins by plunging large needles into them each chemo treatment. The operation was incident free and I woke up with tubes coming out of my chest. I found myself being wheeled into a room with another patient. Now, I am a very generous person, but I am not a fan of sharing certain things and hospital rooms tops the list. The lady I was sharing with was a fan of crappy tv shows and required a lot of medical attention through the night. Unfortunately, for me, the curtain the separated our beds was not made of iron and when closed didn't create a cone of silence. As a result I heard all about her intimate medical issues and didn't sleep at all. The next day I was visted by my friend and we decided to take a walk to escape my room mate and her terrible taste in television. I was dressed in normal clothes, but had two hospital tags on my wrist, two hospital tags on my ankle and a dressing on my chest with tubes coming out of it. As we wandered down the street and into a cafe, I enjoyed being outside, but did detect a few curious looks from people. I remember walking into the golf shop (sign of how desperate we were to escape the hospital), and the salesman asked if he could help with anything. I said we were just looking and he looked at me strangely and asked if I was supposed to be out of bed. The answer was probably not, but I was living on the edge! I realised that perhaps I had been gone for too long, when the nurse looking after me called my mobile and told me I had to return to the hospital.

I remember having a sense of dread that day - just waiting to be taken down to the chemo clinic. I was not looking forward to how I was going to feel that night or the next day. My mother joined me for the wait until it was time to be taken down to the chemo clinic. I remember walking in and thinking that I didn't belong there. The receptionist walked with us to show us where to sit, as they said to me, 'Karen this is your chair', I felt like I had been punched in the stomach. This was getting serious, this wasn't my life, these things happen to other people. It was at that point that my mother started to cry and the kind nurse took her for a short walk, while another nurse settled me into my recliner chair. People had advised my mother that she had to be strong for me and not cry. Although, I am not a big crier myself, I believe in crying. I felt that this was not only happening to me, but it was also happening to my friends and family. It was a horrid situation and tears were appropriate! Crying doesn't mean that you are not strong, crying means that you care what is happening to someone you love.

The nurse came and introduced herself and explained the process. I had read a booked called 'understanding chemotherapy', so I felt across what was going to happen. The nurse offered for me to watch the dvd, but since I had read the book, I didn't think it was necessary to sit through the movie - as they are never as good as the book. My sister joined my mother and I for the first chemo session. Before they start with the drugs, you have to give blood to make sure you are healthy enough for you to stand the chemo. Then you are given your first anti-nausea drug an hour before chemo starts. You also have to answer about 894898943 questions about how you are feeling in almost every part of your body, as if there are any changes you have to alert them straight away. The most disturbing thing about chemo is that you do not know you are allergic to the drugs until they are in your system. As they are going through the portacath and directly to my heart, I would know if anything was wrong within about ten seconds. Just as the nurse was about to start injecting me, an alarm went off, she excused herself and all the nurses ran into a room. When the nurse returned I asked what had happened, and she said that someone who was having their first treatment had an allergic reaction. I have to say, this didn't install me with a great amount of confidence. However, I figured if anything bad happened, I was already at the hospital, so didn't have far to go for help. The first drug I had looked like raspberry cordial, and as it slowly made its was through the tube into my chest, I was holding hands with my mother and sister. One cool thing about this drug, apart from the fact that I wasn't allergic and didn't have to be revived after receiving it, was that it made your tears and urine bright red. I tried to cry and get a photo of red tears, but I didn't managed to squeeze out a tear - not even a fake one!

The next drug was clear, so didn't have any cool side effects. The whole process took about four hours. It is amazing how exhausting it is sitting in a recliner chair with your worried looking family next to you. By the time I was wheeled back to my room, I was feeling ok, but just exhausted. The tubes had been removed from my chest, which was a relief. The horrible metallic taste I had been told about had arrived, and the congealed hospital dinner left in my room wasn't looking to appetising. Luckily my excellent friend bought me some super tasty spicy Thai soup, which cut through the metallic taste. I was feeling surprising ok, just really tired. I had also managed to get a single room for that night, so the combination of exhaustion, drugs and quiet allowed me to have a much better sleep than the night before. I did wake up during the night as I was worried about how I would feel the next day. The next day came and I didn't feel as horrid as I had expected. I did feel nauseous on the drive home, but luckily one of the four anti-nausea drugs kicked in and I felt better. I even managed to head into town that afternoon with my mother. Looking back now, it was a silly thing to do, but you live and learn. A few days after chemo I was packed up in the car and taken down the coast for a week with my parents. The side effects of the chemo had kicked in, I was overwhelmed with exhaustion. The list of side effects was long and unpleasant, but the exhaustion is what really hit me the most. I would wake up and have a shower, then have to have a rest from the exertion. I have a huge admiration for women who go through this with kids to look after. I barely had the energy to shower and dress myself. My oncologist had told me that it was important to keep moving. No matter how sick or tired I was feeling, I had to get up and keep going as it would make me feel better than lying around all day in my pajamas. It is now five months into chemo and not once have I spent the day in my pajamas. No matter how rubbish I am feeling - I always get up, get showered and get dressed and it makes me feel better. During that week at the coast, we had discussions about getting a dog. Mum thought that since I would be spending a lot of time at home, it would be good to have some furry canine company. So, the day we returned from the coast - Barney came into our lives and he instantly made me feel better.

Thursday, May 6, 2010

Merry Christmas and a Crappy New Year

Once the egg harvesting was done, I had a few blissful weeks without any painful medical procedures. It was Christmas and I had managed to regain some independence and was back living in town. I had my long hair cut to shoulder length, so I could manage to wash it with one hand whilst cradling my traumatised boob with the other. I am a fan of long hair and absolutely hated the 70's Carol Brady the butcher of a hairdresser gave me. I should have been more specific when I said 'shoulder length with layers'. Those few weeks were not easy, but I was happy to be able to have some time alone. I had my mobile on silent for about a month as there were so many phone calls and messages. I felt incredibly supported by family and friends and I don't know how I would have survived that first month without them.

It was the festive season and everyone was fired up for Christmas - me, not so much. My parents had a houseful of relatives, which gave my mother something else to focus on other than what was ahead of us. I remember those weeks over Christmas forcing a smile on my face. I thought if I faked being happy, then it would happen. I would lie awake every night and cry, thinking about 2010. My friends had rallied around me and had organisd to go to a ball for new years eve. I am not a fan of nye and would happily stay at home on the couch and sleep through the forced merriment. I hate having to pay entry into bars which are usually free, wait 34 hours to buy an overpriced drink and having to wait 4893349834589 hours to get a cab home, by which time you are sober and couldn't have driven yourself home anyway. This year was no exception, however my friends would not allow me to stay home alone. I admit rather than my cheery 'I am not out on nye' night at home, I may have wallowed, but that would have made me happy. NYE came around and I found myself being frocked up for a black tie ball. My good friend was staying over and had arranged for a girl to come and do our hair. It was nice to spend the afternoon with french bubbles being pampered. The ball was fun, but as midnight rolled around I felt myself developing a feeling of dread. The more people that said 'happy new year' to me, I kept thinking that 'crappy new year' would be more accurate. I found that my smiles were wearing out and tears were about to flood my face and ruin my make-up. Not being a fan of crying in public, I said very quick good-byes to my friends and power walked home, with friends in tow. Once in my apartment I remember getting in the shower, so then I couldn't tell which were tears and which was the water from the shower. I didn't want to allow myself to cry, because I thought if I started, I am not sure when I would ever stop. I was glad not to be staying alone that night, it felt good to have my friend give me a big hug. She didn't tell me that things were going to be ok, she was honest and realistic and said that 2010 was going to be shit, but we will all get through it.

I was very worried about the next stage of my treatment - chemotherapy. I knew it was going to be the longest and hardest part of my treatment. It was six months of chemotherapy and then a further 12 months of a drug called Herceptin. I remember when my brother had chemotherapy, he was so sick and weak all the time. I was only about 8 when he got sick, but I remember that the house smelt like a mixture of cleaning products and vomit. I remember him being pale, bald and having black rings under his eyes. I didn't want that to be me. One thing I didn't do at all was google anything. I didn't want to hear about horror stories and statistics, I thought I am me and I will cope with what ever was thrown at me in my own way. I had faked being brave with the operation and with the egg harvesting, but the thought of chemotherapy scared the crap out of me. I was not afraid to admit that I was scared. Barely a week into the Happy New Year - I was back in hospital to have my portacath implanted, ready for the six months of intravenous domestos.

Wednesday, May 5, 2010

Making half-babies - part two

The next week was a blur of appointments with the fertility doctor. Each appointment involved a vaginal ultrasound. I was most disappointed to discover that they didn't come with a vibrate or massage option. As it turns out I was very fertile and had a large number of eggs developing nicely. So barely two weeks after my lumpectomy, I was scheduled for another operation - egg harvesting. Exactly 36.5 hours before my operation, I had to give myself a 'trigger shot'. As I waited for the precise time to come, I read through the side effects I could expect. The usual side effects were there - headache, nausea and cramping. The only side effect I experienced was insomnia - from waiting for the side effects to kick in!

The next morning saw me visit the Wesley hospital yet again. I wasn't feeling as nervous as the last time I had to put on the backless gown and paper undies. As I was lying on the bed, waiting to be wheeled in, the anaesthetist came and spoke to me. I gave my usual information about always vomitting after anaesthetic, so please give me lots of the anti-vomit drugs. She kindly asked if I had any questions and there was only one question going through my mind. I thought about being wheeled into the theatre, where I would recognise only three of the 12 faces staring at me from behind their blue masks. The question was that if I had to be in stirrups for the procedure - as I wasn't that comfortable with strangers looking at my va-jay-jay! Since I was going to be in stirrups, I had one request which was that she ensure that I am well and truly unconscious before my ankles went anywhere near a stirrup. I knew I was going to lose my dignity, but I didn't want to witness it.

The operation was a success with 21 eggs harvested. Apparently the doctor told me this during recovery, but I can't remember. However, also whilst in recovery I can clearly recall using a bed pan and overflowing it and living through the nightmare of having my sheets and paper undies changed by two nurses in my semi-conscious state! I thought the body was supposed to shut out traumatic events such as being attacked by a shark, hit by a bus and wetting your bed as an adult! Especially when you are incapable of cleaning up after yourself. On the whole, the egg harvesting process wasn't as traumatic as I thought (apart from the bed wetting episode). I am not sure if it was the doctor of my body's ability to cope with the influx of hormones, but I did pretty well, so I was grateful for both.

Looking back at that first few weeks I was in a daze. It had just been over three weeks since my diagnosis and so much had happened. I was fortunate to have doctors who guided me. It wouldn't have occurred to me to get my eggs harvested. I know the IVF road is a tough one, but I think compared to what else I had to deal with, it was just another week in my imploded life. People keep telling me that I was so strong and brave. I don't think I was either, I just did what the doctor's were telling me to do. If there was an option of a cure by sitting on a tropical island drinking cocktails for a week - I would be there in an instant! I was scared and woke up often at 2am and cried thinking about what was ahead of me. I thought that the only way to get to the end of this journey was to go through it, so I put my head down and forged ahead.

Tuesday, May 4, 2010

Making half-babies - part one

Sitting in the IVF clinic with my wound gunge bag and my mother, surrounded by couples, it struck me that I was not your typical IVF patient. The doctor was very kind, sensitive and laughed at all my jokes - so I liked him immediately. I had gotten used to being poked and prodded around my top half, now the same was going to be down to my bottom half. We had to start the IVF process that day. It was a big decision to make, but I felt that it was something that I would regret not doing, but not something that I would regret doing. It wasn't something that I could decide to do later, staring down the face of infertility. I wasn't put off though, I thought I don't have any issues (that I knew of), so things might be ok.

Speaking through the process with the IVF nurse, the emotion of the past week hit me. The fact that I was discussing egg harvesting because I had breast cancer and facing chemotherapy which will make me infertile - I broke down and cried. I am not a big crier, but this was all getting too much to deal with. Even now, a few months on, I still get emotional when I think about that first day. Going through the forms, the nurse was crossing out all the parts which referred to sperm, fertilisation and partners, since that wasn't relevant. It made me sad to think even my eggs were single and at a disadvantage. Unfertilised eggs have a lower success rate of thawing, but I thought it was worth the risk. I have friends who have gone through the IVF process. Some felt it was very ambitious aiming for 20 eggs in one cycle. One friend's response was 'bullshit' when I told her the outcome we hoped for! I was told to prepare for mood swings, headaches and cramps. I started twice a day nasal spray and daily hormone injections. For someone who has a strong aversion to needles, I wasn't looking forward to sticking a needle in myself each morning. That week was a busy week. Going to the fertility doctor every other day and the surgeon in between, this being sick business was a full time job! The egg harvesting was going along well and the eggs were growing at a good rate. My tolerance for the hormones surprised me - I had no side effects at all. Either I am very lucky or the other women are soft! I was hoping that my tolerance for the hormones would transfer to chemo and I would be side effect free through that process as well.

That week was my 35th birthday and I was hoping to have my wound drain removed so I could go to the Powderfinger concert. I had been planning a four day birth festival - but those plans were changed. The day before my birthday I was back at the surgeon hoping that he would remove my drain. Living with the drain was very limiting. Going from living alone to having my mother help me shower and dress was strange. I hated losing my independence, but was aware of how lucky I was to have such a supportive family. Since I was still unable to drive, it was a good thing that my mother and I get along so well, because we were spending a lot of time together. We were still able to make each other laugh, even in the face of breast cancer. The surgeon was a little concerned about how much fluid was still coming from my wound, but said he would remove it if I had a really good reason for wanting it out. I appealled to his softer side and said it was my birthday and I wanted to see Powderfinger that night. He said that was good enough for him and removed it. My goal of going to the concert was reached, with the help of an afternoon nap, a few pain killers and a lift door to door. To celebrate my birthday the next day, I had planned a quiet day - or so I had told my mother! However, it involved breakfast with my work team (including an awesome present from the Queensland Reds!), morning tea with another friend, lunch with some other friends, afternoon tea with my sister and her kids and dinner at home with some friends. I was very spoilt that day. I have to say having breast cancer ups the ante on birthday presents! The Reds are one of our clients and our contact there knows what I fan I am and very generously put together a present for me. I rang her to say thank-you that afternoon and she was asking how I was going and if I was going to manage to go to any of the games next season. I told her that I already had my season ticket and was hoping to make all of them! I told her to tell the boys that I was going to get out of my chemo bed to make it to the games - so that they had better win! She laughed and said that the boys were coming in for a meeting that day and would I mind if she told them that. I was very happy for her to give them some motivation. I don't want to take all the credit, but the Reds are having their best season in 10 years!!!!!!

The result

I had a rather uncomfortable and restless night after the operation. I had two wound drains coming out of my left side and an IV stuck into my left hand. As you can imagine rolling over and going to the bathroom was quite a challenge. There was also the issue of the man down the hallway who expectorated very loudly every minute or two. One thing I don't like about hospitals is that you leave your dignity at the door on the way in and pick it up on the way out. I know that I needed a lot of support in those first few days, but the indignity of being showered, dried and dressed by a male nurse was almost too much to bare! Luckily I was doped up on morphine so I didn't care as much as I usually would. Unfortunately, when returning home, I also needed the same assistance, without the morphine cocktail to numb the humiliation.

The surgeon came to see me very early on Wednesday morning, the news was a little bit good and a little bit surprising. Turns out I had the most aggressive grade (grade 3) of the most aggressive type of breast tumour you can have. He removed all 17 lymph nodes on my left side and 16 had malignant cells in them. He said he was surprised that there were so many lymph nodes involved. He was surprised - it shocked the hell out of me! It is believed that the cancer cells travel from the breast tissue through the lymph nodes before travelling to other parts of the body. Which basically means, I had one spare one. Once again, I was thankful I had the itch when I did. Since I was young and have no other medical issues - they were going to blast me with heavy chemotherapy. The next few days in hospital past in a blur of visitors, floral deliveries and vital sign checks. Friday afternoon I had a visit from the oncologist and fertility specialist. It was quite an information overload in the space of 2 hours. The next few months were going to be quite a challenge.

Saturday morning I was allowed to go home with one wound drain (affectionately called my wound gunge bag) still inserted. The weekend past quickly with the days filled with more visitors, a car accident, pain killers and wound gunge care. Monday morning saw me back at the hospital - to the IVF clinic. I had no idea where my cycle was at and no idea if my eggs could be harvested. The fertility doctor had been advised by the oncologist that he had only one cycle in order to harvest my eggs. As it turns out, that Monday was day one of my cycle. So just two short days after leaving hospital, I started IVF.

Monday, May 3, 2010

Half-boob job

I remember lying awake for hours in that first week trying to wrap my head around the enormity of the situation. I remember feeling reassured that there was a plan to be executed, and that the surgeon didn't tell me to go home and make myself comfortable. I decided it was easier to break the process down into stages - operation, egg harvesting, portacath implant, chemotherapy and radiation - too easy! My operation was scheduled for a week after my initial diagnosis. It was fantastic to have things move so quickly, but gave me no time to reflect of process anything. Sitting here, a few months after the operation, the speed of everything didn't leave me any time to freak out or get scared. The night before my operation we had a quiet night at home with visits from my two brothers and the local priest. My eldest brother flew up from Canberra to spend a few hours with me. He had faced a similar life changing situation and he gave me strength to face to the next day. My other brother had also beaten cancer, so he was also full of supportive and good advice. I tried to be positive and think that what I was about to face wasn't scary - really it was half a boob job. The scary part was the week before when I didn't know that I had something so toxic in my body causing havoc. The night before the operation I slept sporadically, which surprised me that I slept at all. Driving to the hospital early Wednesday morning, armed with my parents and all my test results, I felt physically sick. I wanted to shake myself up from the deep sleep I was in and escape this nightmare. However, on the outside, I was of course, the definition of cool, calm and collected! Being checked into the hospital, being processed, getting labelled and changed - it all felt surreal. Like I had walked into someone elses life. Lying and waiting to be wheeled into the operation theatre, I thought I still have the veneer of calm until every one that walked past me told me not to look so worried. Easy for them to say - they are not the one wearing a backless dress with paper undies.

I have an enormous aversion to needles, they completely freak me out, but I do love the feeling of being put under general anaesthetic. One second you are awake and the next you wake up and it's all over. I remember the surgeon being very kind and holding one hand whilst the sadistic anaesthetist with the world's biggest needled stabbed my other hand. I have no recollection of being in recovery, but I remember being wheeled into my room and being in pain. My parents welcomed me with anxious faces. The news was positive, the tumour had clear margins, but there were a lot of lymph nodes involved. The news was about to get better - morphine was on its way. There is something magical about being in so much pain and then having it dissolve away in an instant - my world was a happy place again. I found myself watching Pride and Prejudice (the BBC version of course!) and making a few phone calls. I thought I was handling myself very well. The last call I made was to my sister, who advised that I was high as a kite and I should put down the phone and sleep it off. I told her I was fine, but I would attempt to have a sleep. After a three hour sleep and 75 text message replies to a message I can't remember sending, I felt that morphine maybe somewhat strong - think drunking dialling on steroids! Even now, a few months on, I find out that I called a few more people than I realised at the time. To all those people, I apologise and promise to never called when hopped up on morphine again!

Stage one was over, now the wait was for the pathology results.