August 30, 2012

Hello hormones

Okay. I should probably reverse my last post. The hormones kicked in. Yikes.

The mood swings are awful. I am not able to make any decisions right now. I'm freaking out over everything. I had to start with the second injection yesterday. So I'm having the full package right now: three pills, two injections. Didn't really like the injection in my leg, so we're back to the muffin top.

If there were let's say 10-15 eggs I could at least defend to myself why I am putting my body through this. But with only four eggs... this whole thing is just another disappointment. I'll be so happy when it's over.

August 29, 2012

Stupid world of egg stacking

Starting this IVF thing was a hard and emotional decision. As I mentioned in my last post my gynaecologist told me there is a fair chance my fertility is likely to be affected by chemo. By measuring levels of AMH (a blood test that detects Anti Mullerian Hormone, secreted by early ovarian follicles) in my blood, they are able to predict your egg reserve. My predictions were lousy.

My suply of eggs really leaves something to wish for. So after starting the IVF treatment I now have four eggs. Can you believe it?! Four. They need about 15-20. Of course I can always try getting another batch of eggs by doing a next round. But I'm not sure yet if I'm up for that. I'm really hoping these four are going to make it though.

So I can't really say the hormones are torturing my body (or my family). The good thing is the egg retrieval part (which apparently is very painful) will be over quick with only four eggs. Hey you gotta think positive. Like they said in the hospital, 'Every little egg, is a little chance.'

August 28, 2012

The egg project

If you think I'm taking it easy after surgery to recover from everything.. well boy are you wrong. You know it's not just the whole cancer thing that is thrown in your face. You have to make so many other decisions as well. The effects of chemotherapeutic drugs can lead to infertility. As a young single female this is not something you want to deal with. 

So the hospital told me to go talk to a gynaecologist specialised in cases like mine. Until very recently, embryo freezing was a reasonable option with good pregnancy rates, but egg freezing was a long shot. This made it very difficult for women like me, without a prince charming, to preserve their fertility. A single woman could freeze her eggs and not really know if she had a reasonable chance of pregnancy from those eggs. Or she could consider embryo freezing, with a much more predictable pregnancy rate, but the downside of having to commit to using donor sperm to create the embryos. Not a desirable option (although I did consider writing a letter to Johnny Depp and Alexander SkarsgÄrd).

Today, thanks to dramatically increased pregnancy rates in the last few years, egg freezing is a realistic option for preserving fertility, one that has success rates that are approaching success rates for frozen embryos. So cancer patients can now freeze eggs knowing there are very reasonable pregnancy rates. Good. So let's do this.

Now to be honest this whole thing was very emotional for me. Every time I had to talk about it I started crying. Dealing with cancer is one thing, but to have this taken away from me that is just (first time I'm using this word) unfair. Truth is I don't even know whether or not I want children. Maybe with the right person. One day. But then again, maybe after everything my body has to go through, all the treatment and such.. kids are the last thing on my mind. Being healthy will be my priority.

After several tests my gynaecologist told me there is a fair chance my fertility is likely to be affected by chemo. Of course there is no way to predict what nature will do. Fact is the younger you are, the more likely you are to have normal periods again and still be able to have children once the chemotherapy has ended.

So I have officially started the egg project. It might sound easy peasy. Well it's not. There's a tight schedule. Everything has to be done precisely as described at a certain time. The pills and the hormone injections. Yes you have to put needles in your muffin top. I started last Friday and I'm wondering when the hormones are going to kick in. When will I turn into crazy Ciel?! I will have another echo tomorrow.    

I'm glad I'm doing this so future Ciel will have no regrets.

August 25, 2012

The plan

So what are your plans for the future? Well I'll be fighting cancer. I've had my appointment with the surgeon and it was another long and confronting talk.

Let's start with the good news: after more research the sentinel lymph node was again negative for cancer. The tumor was 1.8 cm and was removed completely. So goodbye to you little fucker. The wounds/scars are healing and I do feel somewhat better. 

The bad news is that it was a grade 3 cancer. Obviously a high grade aggressive cancer that grows faster and is more likely to spread. This means lots and lots of treatment. Not only was my tumor hormone-receptor positive but it was also found her2-positive (a protein thing).

So in short this is the plan:

1) Within 4-6 weeks I will start radiation therapy. About 25-30 times. Probably 5 times a week.
2) My chemo will start about two weeks after finishing radiation therapy (hopefully about 6-8 times).
3) During the chemo my herceptin will start and will continue after finishing chemo (not sure yet how many times but probably a lot). Herceptin has far fewer immediate side effects than chemotherapy. For example, there is usually no nausea or hair loss. However, there is a small but real risk of heart damage and possible lung damage.
4) Last but not least: hormone blocking therapy for five years.

So yeah.. that's a lot. To handle. For one person. I'm pretty scared of how my body is going to cope with all of this. Not to mention the mind. But it's not like I have a choice. So crazy medical roller coaster... here I come.

August 20, 2012

The week after

I can't believe it's almost been a week since I've had surgery. I'm still in pain, mostly my arm and armpit. My breast not so much although it's completely yellow/blue right now. The scar is about the size of my index finger. The one under my armpit is smaller.

Want to hear something dirrrty? I can not use deodorant nor shave for about 2/3 weeks. So I'm having a huuuuge smelly armpit party!

I also haven't been able to sleep without a bra so I'm still wearing one 24 hours a day.

Remember those horrible Tell Sell commercials promoting something called the Ahh Bra? Well who would have thought they are perfect after having breast-conserving surgery?! Of course I didn't get the real thing but instead ordered the cheap knock off stuff, but still... aaahh very comfy!

August 17, 2012

The one after surgery

While things still seemed a bit unreal the last couple of weeks, I can now no longer deny the truth. Just one look in the mirror and the scars will be there forever.

However there is positive news to tell! The sentinel lymph node did not contain cancer.

I had to be at the hospital at 7.15 a.m. and then they showed me to my private room. Perfect for this diva. I was being prepared for surgery right away. Not a lot of waiting in between so that was good. At 8 a.m. they took me downstairs. They kept asking me all sorts of questions and started to repeat them over and over again such as my name and my date of birth. I even had to draw a cross with permanent marker on my breast. A very nice lady gave me an IV. I got to talk to the surgeon and also met the rest of the team. Then I was taken to the OR. Again a big list with questions and they even asked me if I could describe the surgical procedure. Really had a small E.R. moment there. At 8.20 a.m. they started surgery and my mother received a phone call at 9.30 a.m. that everything went fine!

I woke up about an hour later and was told immediately that they removed the tumor and that the sentintel lymph node did not contain cancer. Such a relieve!

A couple of hours later I was already eating soup and even took a short walk through the hallway. Yes I was quite the diva, wearing my pink night shirt that my colleagues made for me. It had a print of my bunnies on it. To complete the outfit I wore my Hello Kitty bathrobe and my pink Birkenstocks. My parents gave me a pink cuddly bunny so my private room turned into a pink one very quickly as well.

On a less happier note, spending the night at a hospital really sucks! The pain started to kick in and I only slept for like two hours. Everything seems so much worse at night. I am now staying at my parents place together with the bunnies. Yay for painkillers and a home sweet home.

I got to take a shower 48 hours after surgery and removed the bandages. I have two wounds and the smallest one, underneath my armpit hurts the most. My breast is quite a work of art. The permanent marker is still on there and the rest looks really blue/green/black/yellow. I was very nervous about removing the bandages but in the end it didn't upset me as much as I thought it would. Obviously it needs time to heal. It's just a scar and it's a part of me now. 

I have another appointment next week with the surgeon for the definitive results.

August 13, 2012

The sentinel lymph node

Today I had to go to the hospital for the sentinel lymph node thing. A low-activity radioactive substance wass injected near the tumor. After a gentle massage (had to rub my breast in public) I had to wait for two hours. Then they took photos and marked my sentinel lymph node. A lovely blue cross is now covering my armpit. 

Tomorrow about 15 minutes before my operation the physician injects a blue dye in the same manner. One or several nodes may take up the dye and these nodes are designated the sentinel lymph nodes. The surgeon then removes these first lymph nodes and sends them to a pathologist for rapid examination under a microscope to look for the presence of cancer.

This is probably what I'm most nervous about. The concept of sentinel lymph node surgery is to determine if the cancer has spread to the very first draining lymph node or not. If the sentinel lymph node does not contain cancer, then there is a high likelihood that the cancer has not spread any further. But I try not think about it too much, it would not really change my path after all. Because I will still have to do the radiation, chemo and hormone blocking therapy.

I have to be at the hospital very early in the morning (as in you have to get up in the middle of the night). I'm not much of a morning person but this is quite a relieve actually. Better get it over with.

As Arnie always put it, "I'll be back!"

August 12, 2012

Everything is cancer

A few days after I was diagnosed with breast cancer I was taking a walk with my sister. People were staring at me. It felt as if the word 'cancer' was written on my forehead.

When the cashier at the grocery store wishes me a happy weekend I just cringe and want to get the hell out of there.

When a guy uses his car horn to impress me I just wanted to scream at him he won't be using that after I have turned into miss Baldy.

Everything is different now. Everything has a different meaning all of a sudden. But it's me who's changing and not the rest of the world. I am the one who's much more aware of everything happening around me. I notice things that I would not have noticed before.

Watching a romantic movie? The girl dies of leukemia. Looking out of the window? A woman wearing a scarf wrapped around her head passes by. Reading a magazine. Why is the one with Sylvie van der Vaart lying on top?

It was al there before this happend. It just never hit so close to home.

August 11, 2012


Something must be wrong. There is nothing wrong. You're okay.

29/52 Underneath

But I can feel it crawl underneath my skin. It creeps and it crawls. I've got monsters living under my skin. It's a wilderness of despair up there. Oh what a tangled web they have woven. But they're not getting this soul of mine.

August 8, 2012

It's all happening

Today I found out I’m having surgery next week. So it’s all happening... The first step.

It’s not just the cancer that sucks. There’s a whole lot more to it. Genetics, do you really want to know? Infertility, temporarily or not? Without a crystal ball it’s almost impossible to make all these kind of decisions.

And then all of a sudden the hypochondriac inside of you has woken up as well. Every lump, pain or complain can now mean something. You no longer trust your own body. I used to be one of those people that went with my feelings, trusted my instinct. But I cannot depend on that anymore. It’s out of the window.

I am now living in a different world. A world that exists of chemo and radiation therapy. A world where people are sick and lose their hair. The future can no longer be taken for granted.

August 7, 2012

The first

When I posted this photo in 2009 on Flickr, never ever did it cross my mind that I was taking a picture that would become my story.

Be Aware

I'm not even sure how to start this story.. Once upon a time there was a girl that discovered a skin dimpling in her right breast. Or maybe I should start with a date? July 12 is a day I will never forget.

I wasn't really alarmed by what I had felt. But after a few weeks I started to feel something hard underneath my skin and it also started to hurt sometimes. My doctor told me to go to the hospital and made an appointment for me. They told me I had to do a Mammogram, an echo and a biopsy. It was painful, but not that bad. I have to tell you here, I never ever thought it would be cancer. I'm 30 years old. It's just not something you expect. It doesn't run in my family either. But then I was called back in and it was bad news. It was cancer. The lump in my breast is a tumor. Well my world just collapsed. It was like a bad dream and I wanted to wake up.

I knew right away this is something I'll never forget. This is going to influence the rest of my life… This is going to stick with me and I'll be scared forever. Things will never be the same again. I will always be scared of the cancer, now that it's been in my body.

So then I went through the MRI to check the rest of my body/breasts. A few days later I had to go back for another appointment and they told me that I will have surgery within the next 3 weeks and they will remove the tumor and that I get to keep my breast (yay). No spreading was seen (another yay), but they have to check again during the operation, just to be safe. They will then have to do more testing and determine what type of cancer it is, which stage etc. I will have to recover from surgery and then get another appointment and they will tell me about my follow-up plan. Which, considering my young age, most likely will be radiation therapy, chemo and hormone blocking therapy.

I guess I should live day by day.. and just hold on to the good things. Take one step at a time. Obviously I’m in for a hell of a ride. It’s not going to be pretty. But hey you never know how strong you are until being strong is the only choice you have! I’m going to kick this $%&@#$* disease in the ass!