Go on

Radiation treatment. I finished #14 and have only 7 more to go. After my third week I started to feel tired. My breast looks a little red/purple but it's definitely not as bad as I thought it would be. I try not to think about it too much and just go there everyday as if it's a normal thing. Yeah sure because undressing your upper body in a cold room and getting radiation treatment is a completely normal thing to do when you're 30 years old. Not to mention the waiting room. I haven't seen anybody my age. The youngest are in their 40s, but most are over 60 I think. So it's always a surprise when it's my turn and they call out my name... and I get up instead of my mum or dad.

I have an appointment at the ENT specialist next week. My ears, nose and throat always have been a 'weak spot'. After being diagnosed with breast cancer I don't really trust my instincts any more. Going to the doctor will never be the same. What else are they going to find?! I just want to make sure everything is al right before starting chemo. My oncologist agreed and got me this appointment. 

The last three months I have been reading lots of similar stories to mine. Although most started with a lump. Mine did not. 

I remember exactly. May 2012, sitting on my couch, wearing my favourite Beatles shirt, not wearing a bra. All of a sudden I noticed a dimpling in my right breast. A dimpling is weird. Is it really there? When I was wearing a bra you could barely tell. So what's the first thing you do? You google.

I wasn't alarmed by all the websites I found. I remember reading that most changes found in the breast turn out to be benign (not cancerous).

But.

I did regular self-examinations after that and soon I noticed more changes. Again... no lump. Instead something I would describe as an area of thickening underneath the dimpling. Early July my breast started to hurt sometimes. Time to see a doctor. Who also told me that most changes found in the breast turn out to be not cancerous. But he took my story very serious and made an appointment at the hospital. I was 99% sure it wasn't cancer. After a mammogram, echo and biopsy I was told otherwise.

I just wanted to share and write down my story more detailed than I have before. None of these breast cancer stories are the same. We have to remember that not only the medical facts are different with each person but also the way a person actually deals with everything. I sometimes read stories about people who kept working during radiation treatment and chemo... and it makes me feel bad because I don't. But this is my disease and I have to do whatever will gets me through. I should not feel guilty for taking the time to cope with all of this. I am so focused right now on my treatment I don't want to deal with anything else. I have to set my own boundaries. I will. Even when people aren't always going to understand them.

Let's do some highlights:

• One of my photos was published in a book called 101 Ways by the Impossible Project. The selection presented in the book shows a wide range of ideas what to do with an Impossible photo once ejected by your Polaroid camera. You can buy the book here.    
• Celebrated World Animal Day with the bunnies and baked them cookies. Also made a donation to the shelter where I got Charlie from. 
• It's been a while but I laughed so hard I almost peed my pants. My sister never rides her bike.. but when she does, it was raining cats and dogs! So I offered her this lovely plastic purple poncho and she looked hilarious!  

P.S. It's still October Awareness Month. Say NO to "Pinkwashing".

Meeting the oncologist

Today I had my first appointment with my oncologist. Appointments that are never easy. These are the moments where you have to face the facts over and over again.

The facts: the tumor is gone. When I do absolutely nothing I have a 80% chance of living my life like a normal person. When I go through all the treatment (the full package) the survival rate goes up to more than 90%. So a girl does what a girl gotta do. Two weeks after finishing radiation I will start my first chemo. I will get 8 rounds of chemo and 13 rounds of Herceptin (in cancer land we call this: 4x AC, 4x TH and 13x H). So you do the math... this means this whole thing is going to keep me busy for more than a year.

I sort of knew. But when you're being told like that.. well it's not easy. "It's not going to be easy", my oncologist said. He was convinced my body was able to handle it all, but being fit mentally is just as important. If I need help, all I have to do is ask. He seemed like a very nice and calm guy who makes time for you. Absolutely willing to answer all of my questions. He also knew exactly when to make a joke. After I told him I google a lot for information about breast cancer he asked me whether or not I googled him as well (haha I am so going to now).

I seriously want to focus on my radiation. But it's so hard because there is so much other information and preparations you have to deal with (dentist, ENT specialist, the wig and so on and on). It just never stops.

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.

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.

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.



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!