Tuesday 26 March 2013

Ivf is done, chemo is just about to begin.

I'm not feeling too great tonight as my ovaries have taken a beating today, and I start chemo tomorrow, but I've actually had a pretty wonderful week up until today. It was my husband's fortieth birthday on friday and we spent pretty much most of the week celebrating, going to two concerts and having two parties, in between all of our ivf appointments that is.

On Monday night I took my husband to see Bruce Springsteen and it was incredible especially when you consider he is 63 years old! We had great seats but never really sat down as we were on our feet dancing for most of the show, which went for almost 3hrs. Most of the songs went for 10 minutes, he and the entire band which included a full brass section were doing little dances, he crowd surfed, and did a move on stage that I can't even describe so I have included a photo at the end of this post, but the best part of the whole night was when my husband kept turning to me saying 'best birthday ever'.

Friday was my husband's actual birthday. We had a lovely morning at home and then little birdie and i drove him into work. He had no idea that his wonderful boss, and friend, was throwing him a surprise birthday party which we were secretly invited to. Of course little birdie was the centre of attention (see photo below) and we all had a great time.

On Saturday we had all the family over for a big BBQ/pool party. Unfortunately it was almost ruined by a call i received from ivf as all our guests were arriving. First they asked me if I could postpone my chemo (which was booked in for 3 days time), then they told me my egg collection would be a day earlier than previously planned, then they reminded me of a medication that, unlike everything else I had had to take previously, had to be purchase from a specialised chemist, that day, in the next few hours, from 40 minutes away! I got so worked up that I ended up hiding in my cupboard for a few minutes before I could go out to greet our guests. Luckily it all worked out. I calmed down and my dad and brother went and picked up the medication for me without even being asked. The rest of the day, and night, were a ball.

Then on Sunday night, two of my husbands best friends and I managed to surprise him again by taking him to a secret gig of one of his favourite bands, Leonardo's Bride, that haven't played for twelve years. He had no idea they had reformed and, needless to say we, and more importantly he, had a great night. We also stayed the night in a hotel in the city for the night as my ivf was booked for the next morning so it was a fabulous weekend all round.

Now to the ivf.
Saturday morning was my last ultrasound which showed i had 25 follicles in my very enlarged ovaries (see photo below), which I was quite happy about. Saturday night, I injected myself with my two 'trigger' injections, and was told to be at the ivf clinic exactly 36hrs later to have my eggs collected. We arrived at 6:30am this morning for a 7am procedure. I hadn't really thought about what it would feel like to have my eggs retrieved. I think I assumed it would be about as uncomfortable as a Pap smear, but I was very wrong. I was injected with some pain relief, the internal ultrasound probe was inserted, and then the dr took a needle that was at least 30cm long, and inserted it in you know where, all the way to my ovaries. It was excruciating and felt like the pain of the worst ever urinary tract infection. Eventually the medication brought a bit of relief and I was able to focus enough to look at the ultrasound screen to see the needle go into my follicles and drain the fluid which contains the eggs. The fluid drained into test tubes that were on the table next to me and i watched it change from clear, to pink, to red, which was a bit disturbing. The sharp pain from the needle kept coming and going, and I could feel the dull ache of the ultrasound probe. It wasn't all bad though. We had a Scientist in the room with us which was very cool. He would collect a test tube of fluid, take it over to his microscope which was inside what looked like a humidi crib complete with arm holes, and find each egg, all of which we got to watch on a big tv screen. He managed to find 23 eggs, a number which seemed to impress everyone in the clinic. In recovery he explained to us that in traditional ivf the eggs are put in a dish with the sperm and left alone to fertilise. For us though, they would use a process called icsi, where they inject the sperm directly into the eggs. This would give us an even better chance of having healthy embryos which was important as we won't have another chance to harvest eggs before chemo. In five days time they will freeze all suitable embryos and store them for future use so we can give little birdie a little birdie or sparrow to play with one day.

I spent most of the day resting at home as directed. I originally thought this seemed unnecessary but like i said, i totally underestimated the procedure. I have had pretty bad cramping pain all day and am so swollen that I look six months pregnant, which isn't hard to believe seeing as my ovaries are about four times their regular size from housing all those eggs! I did have to do a few things to prepare for chemo tomorrow though, so i couldn't spend the whole day resting. I saw my oncologist earlier today for my final check up before chemo, I started my steroids- ugh, and this afternoon I had to go pick up another medication before going to the GP to have it administered. It was an implant that had to be injected by a pen-refill-sized needle which will stop me ovulating while undergoing chemo. This is just another precaution that will give us even more of a chance to have another baby down the track by protecting my ovaries from the damage that chemo can do to them.

Anywho, it's now midnight and 10 hours till I start chemo, so I am going to go to bed. I'm not sure how likely it will be that I will go to sleep but I may as well try. Wish me luck!












Wednesday 20 March 2013

Life's not fair, but it sure is beautiful.

My new most hated phrase: 'But you look too young to have breast cancer'

I'm really starting to get sick of hearing this. I guess I understand people thinking this, but i still get surprised when someone actually says it, especially health professionals like doctors, nurses, and even sonographers. And what am I supposed to respond with? 'Yes I am too young to have breast cancer', 'Actually I must be older than you think', 'cancer doesn't discriminate'? Surely these people have some sense to know that telling me this is not a compliment, nor is it helpful. It certainly doesn't make me feel any better, and it just reminds me of how shit this whole situation is. At first I didn't mind too much. I guess it was a little comforting knowing that other people were as shocked as I was about my cancer, but I'm over it now. It's just the way things are. Every time I have to explain my situation to a new person, I don't need to be reminded of how ridiculous this all is. I was almost going to say 'how unfair' this is, but I stopped myself. As an adult I have learnt that there are few things 'fair' in life. Bad things happen to good people. Good things happen to bad. Incredibly strong and wonderful people can be taken from us by cancer, among many other things, and 'fairness' just doesn't come into it.

People keep telling me I am strong, and brave, but I don't know if that is true. I think I am just realistic, and maybe a little desensitised. You see, my husband and I have been through quite a lot over the last five or so years, and were unfortunately prepared for facing this kind of thing.

At the age of 22, after being married for only eight months, my husband was diagnosed with a massive brain tumour, a meningeoma the size of an orange. Watching my new husband entertain all his visitors, and fellow patients while in hospital, awaiting surgery, was inspiring. Even though he was facing one of the most terrifying things someone can be diagnosed with, his main concern was not himself, but assuring his family and friends that everything would be ok. Lucky enough for us, it wasn't cancer, but he still had to endure a 10+hr surgery to remove the tumour, as well as a small section of skull that it had fused to. Eight weeks after his surgery, he was told to reduce his anti seizure medication. At 5am one morning, he tapped me on my shoulder and woke me up. I sat up just in time to witness the most terrifying thing I have ever seen, my husband having a seizure. A grand mal seizure that only stopped once, for a few seconds, in the 27 minutes that it took for the ambulance to arrive. He spent a day in intensive care, five more in the high dependency ward, and was once again sent home. When he was given the all clear from his neurosurgeon six months later, we thought we had had all the bad luck a newly married couple could have and would be set to enjoy an uneventful life.

Unfortunately, only a few months later, my mother-in-law was diagnosed with terminal cancer. It was in her bones, her brain, her lungs... My husband had always been extremely close with his mum, not in a mammas boy kind of way, but everyone who met him just knew it. No matter what he did, he always wanted to help his mum, and she was the same. She would do anything for her family, her friends, her children, and her beloved grandchildren. In the space of twelve weeks we watched the strongest, bravest, most incredible woman fight for her life. She refused to consider not making it, and even made sure she was well enough to get out of hospital to see my husbands band play its first gig since he himself had been in hospital. Unfortunately it doesn't matter how strong you are, when your body is riddled with that much cancer, it is terminal. Helping care for her, especially in the last few weeks of her life, was an honour. Devastatingly, six months after her death my wonderful father-in-law also passed away. Up until that point in my life I had never really been exposed to anyone being sick or dying. I soon learnt that death is an unavoidable part of life. It isn't scary or spooky, it doesn't matter how much of a loving, amazing person you are, it will happen to you. And it is rarely fair.

So as i was saying, there is nothing 'fair' about anyone having cancer, be it a child, teenager, or adult. Life is not fair, so saying it is 'unfair' for me to have cancer seems a bit self indulgent. But life is also beautiful. I have an incredible little girl that makes me laugh and smile, and think how lucky I am every day. I have a loving, supportive husband, who makes me forget that I have cancer, and a scar across my lopsided chest. I have amazing parents, sister, sister-in-law, family and friends, who are doing everything possible to help me through this crappy time. So, it's not all doom and gloom, and there are plenty of things to be happy about. Right now, cancer is simply part of my (and my family's) life. But hopefully it won't be forever.

Wednesday 13 March 2013

One month + one day post op.

It's now been a month since my surgery and everything is happening. I am healing really well and have close to full movement in my arm again, yesterday I started my ivf injections, i start chemo in just under two weeks time, and we have even started work on the front yard of our house.

We spent a day in the city last week organising all my ivf treatment. First we met with the Genea nurse who explained the whole process and how things worked. Then we met with a patient liaison who explained the financial side of things. This was followed by my husband and I being sent for more tests and then a meeting with our ivf Doctor. After everything we had been told about the process and the cost of ivf that morning I was beginning to wonder if we had made the right decision in delaying chemo to freeze my eggs. My oncologist told me that chemo only decreases fertility by 15% so I started to think that maybe we would be better off trying to fall pregnant naturally in the future and if we had trouble that we could then do ivf. Just as I thought this, my doctor told me that he had received some of my test results and that my egg count was actually very low. According to my age I should have 10-20 eggs but apparently I only have 2.3 (how i have .3 of an egg i don't know) which means we won't be able to harvest as many eggs as he was hoping. Hearing this immediately made me know that we were doing the right thing. Yes it is going to be two weeks of injections, plenty of blood tests and ultrasounds, and a fair bit of money, but if it means we can give Little Birdie a little brother or sister one day then it is definitely worth it.

On Monday I had my chemo orientation, another blood test for ivf, and a heart ultrasound. I was the only person there for the orientation so it was great and obviously very personal. The nurse explained to me what drugs I will be given and all their side effects. I had no idea that there were different types of chemo, I just thought chemo was chemo, but apparently not. Even for breast cancer there are different drugs used depending on the type of cancer. The nurse explained i will be having TCH- Docetaxel (T) Carboplatin (C) Trastuzumab (H) and also explained the side effects of each drug. Everyone knows about the hair loss and nausea, but there were also some side effects that i wasn't really aware of, like nail damage, which they help treat by putting your hands in giant frozen gloves for the first hour of treatment. I honestly though she was joking when she told me that but she wasn't. She also told me some scarier things, like how I will be susceptible to viruses between 5 and 10 days after each chemo treatment, and that if I do get a fever of over 38 degrees, i will have to go straight to hospital and possibly spend a few days in there. After the orientation I went to my heart ultrasound. One of the side effects of herceptin (Trastuzumab) is that it can affect your heart muscle, so this ultrasound was to establish a base measurement. Really it was just like a regular ultrasound but on your chest. The strangest thing was that I couldn't feel it at all as she was scanning right around my scar. I hadn't even realised she had started until I looked down.

As I said earlier, I started my ivf injections yesterday. For the moment I will inject myself with a hormone once a day. Every few days I have to go for a blood test and an ultrasound. Once the nurses receive the results they will tell me what to do next. The whole thing kinda feels like some spy operation. I just have to wait for their call to know what to do next. At some point I will start having a second injection a day, and then I will eventually be told to take my 'trigger'. 36 hours later I will go in to have my eggs harvested, then fertilised and frozen. I'm just hoping all the timings work out and chemo isn't delayed again.

I decided to take some photos of my scar today, one month post mastectomy, to compare with the ones I took the day after my surgery, and have included them below. As before, I have included a photo of little birdie first as a buffer so you can avoid looking if you like. I hadn't realised how much worse it all looks now compared to a month ago. You can see that I am a lot more swollen than I was back then but I really do feel much better. I'm not even bothered by how it looks either, but i kinda wish i had had a full bilateral mastectomy though. I'm not a fan of wearing my prosthesis, and if I had done both sides then i wouldn't have to wear it and wouldn't be so massively lop sided. The most important thing is that my surgeon is very happy with how things look so I don't have to see him for another three months, which has to be a good sign.

Tomorrow I will have my first blood test since starting ivf but then I will be taking little birdie to the park to meet up with some friends which I am very excited about.







Wednesday 6 March 2013

Three weeks post op- no more drain. Yay!

Today was a big day. It's been three weeks since my mastectomy and I finally had my drain taken out, we were given the go ahead for IVF treatment to harvest and fertilise my eggs, and I have been given a date for my first chemo treatment.

As you know from my last post, my drain was driving me mad. Since my side swelled up I had lost a lot of movement in my arm and could hardly lift it above my shoulder. I tried doing the arm exercises i had done in hospital, but every time I tried to stretch my arm up, it felt like I was pulling the stitches that held my drain in. Even when resting I could feel the drain tugging at them. So you can imagine how happy I was yesterday when my drain measurement was finally down to the required 40ml and I was told I might be able to have it taken out today. My new breast care nurse, from The San Hospital where I will be having chemo, called this morning to see how I was going with everything. When I mentioned the drain she told me she could take it out for me as long as my surgeon said it was ok, and he did. This was wonderful and meant I only had to drive 15 minutes up the road to have it removed, as opposed to driving to my old hospital, which is an hour away. It was quite painful when she took it out, and seemed twice as long as my other drain that had been removed before I was discharged from hospital, but the relief was instant.

My chemo appointment was first made for the day before my husbands birthday, which I wasn't exactly happy about, but couldn't do much to change. Thankfully it was then moved to 4 days later, which is great and means we get to have a whole extra weekend to celebrate and be 'normal' before I have to start chemo and deal with being sick and tired.

Later this week my husband and I are spending half a day in the city with the IVF Doctor and Nurse to discuss my treatment plan, which will involve hormone injections, but I'm not sure what else exactly. I'm sure I'll do a new post once I find out though. For now, please enjoy this photo of Little Birdie devouring an elmo cupcake.