A new year in colour

It's time to say goodbye to 2012. To be honest, I try not to think about it too much. Yes, it was the year I was diagnosed with breast cancer. I'm still in the middle of this roller coaster ride... it seems pointless to go over and over it again.

So here comes 2013. I know for sure I will be getting treatment for at least another year. If everything goes as planned I should finish chemo somewhere in April and then the Herceptin will go on. It's weird, isn't it? Most people don't really know what the new year is bringing them. My path is pretty clear and obvious.

But that doesn't mean I can't dream a little dream (in colour).

 
FINISH AC CHEMO
First of all I need to focus on finishing this last sucker. One more. One more, sounds so much better than four.

THE COUNT DOWN
Then I will have four chemo's left. New meds, new side effects. But a real countdown can officially start.

       

HERCEPTIN
The rest of the year I will get Herceptin every three weeks 13x. I have to make this a part of my life. Again, find a new normal.

      

HOME SWEET HOME
Somewhere along the way I want to see if I can move back home together with the buns. Perhaps work a few hours a week.

     

BODY & MIND 
But I also realize after treatment I still have a long way to go and wrap my head around everything that has been happening to me. I do want to seek professional help for this. I also want to start running and pick up yoga again.

HAIR GROW
I can't wait for my hair to grow back! I'm currently drooling over fashion blogger Karla Deras' hair. So sexy!

I hope that 2013 will bring us health, happy homes, strength, courage, lots of smiles, (inner) peace, new (old) music & love. Let us eat cupcakes and macarons! Make art, not war. Hug a bunny (or two!). Last but not least, may 2013 be the year hair grows back faster than usual.

Chemo fog

So I'm back. Sort of. Made it through AC chemo #3.

The day before, I celebrated my 31th birthday with very mixed feeling. It's just not a happy time right now. I wasn't in the mood for any parties. My colleague visited the day before which was nice. On the day itself I had to get another blood test early in the morning. My dad took the day off and so did my sister. She prepared two huge bags with lovely sweet cute gifts and they were the highlight of my day! I enjoyed every single one. We had some Chinese food and that's about it.

Chemo #3 was another tough one. This time I talked a bit with two other women also being treated for breast cancer. One of them even wanted to know where I got my hats. We shared some tips and tricks about blueberry juice and ginger tea. It was okay, but I have to admit I prefer to listen to my iPod because it relaxes me.

I also talked to the nurse about being so nervous and everything. Basically she told me what everyone else has been telling me. That I just have to accept the fact I will be sick for a week and to not  struggle against it. Once I will start to feel better I should enjoy myself and go out and do fun stuff. It sounds so easy. But it's not. You can't just forget... It's not a switch you can just turn on and off  whenever you feel like it.

I remember after my first chemo I felt so relieved when I started to feel better again. But now it only seems to get harder and harder. I guess that makes sense. Although no chemo feels the same, you now know what to expect. And I hate it. I hate that black hole and everything that comes with it.

So this time I already started to feel sick a few hours after coming home. As expected I slept mostly through Christmas and I'm glad the Holidays are almost over. 2013 is peeking around the corner and it means I have to do ONE more AC. Then we're changing to TH with new meds, new side effects, new worries but also new hope.

Never lose your sparkle

The power of art

There's a song by Newton Faulkner called Uncomfortably Slow and at some point he sings: So don't take my photograph because I don't wanna know how it looks to feel like this. 

Photography has been a big creative outlet for me over the last three years. I would always describe my style as conceptual and artistic with a sense of sweetness. Fine art by a dreamer.

After being diagnosed with breast cancer I knew my photography would change as well. That black chemo hole kept haunting me for a while but after turning it into something visual I feel much better now.

I don't know how I will look back on this series in a few years... but I believe in documenting life. I believe in displacing the pain and putting it in a story or a poem, on canvas... or in a camera. The human suffering is art in its purest form.

Then it's December

I always get a little melancholic at the end of the year. With the Holidays, my birthday (December 20) coming up.. and of course another year has passed by. What do you say to someone who will continues treatment in 2013 and will be on this medical roller coaster for at least another year? Happy fucking new year?!

My second chemo was pretty much the same. Except I started to feel sick that same night. So Saturday and Sunday weren't much fun either and then Monday I hit rock bottom and reached my black hole. Four or five days later I slowly start to crawl out of it again.

I have to say, chemo is the hardest thing I've ever done in my life. It's THE most darkest, loneliest, scariest, cold place you can imagine. I feel nauseous when looking at the Instagram pictures I took during chemo. I feel sick when I see an IV on TV. Even the thought of the smell of chemo pee brings me out in a rash.

So when I physically started to feel better, mentally I was in a different state of mind. Mind and body are so out of balance these days. I will get my next, third round of chemo the day after my 31st birthday and will be sick during the Holidays. All and all I'm having the feeling number three is going to be a tough one. But once that one is over.. I will only get one more AC in 2013 and I'm very VERY happy about that! I am so hoping the TH is going to be easier and with less side effects!

So yes I'm feeling a little bit better again and I'm just going to try and enjoy the next two weeks of Holiday cheer.

Stupid dumb breast cancer

I have met so many great women after being diagnosed with breast cancer. It's a horrible disease that brought us together. But you are all beautiful, amazing and inspiring to me!

Ann Marie is one of them. She sent me this t-shirt and is fighting stupid dumb breast cancer with so much energy and power! I deeply respect her! This is her facebook page and you can find her blog over here.

The one without the hair

After your first chemo you know you're going to have to deal with the hair loss. An hour after my chemo I pulled out a hair and showed it to my family to let them know it started. I'm crazy like that.

Last photo with real hair

I got very anxious this week. Because it usually happens between day 14-17. The waiting, the waiting. I just couldn't take it anymore and that's when I called the wig store. Thursday I dropped by and decided to pick up my wig and I also let them shave my head.

A big decision.

For me, it was the right one. Control freak that I am, I took matters into my own hands. Not having to deal with any of that waking-up-finding-hair-on-your-pillow stuff.

A couple of weeks ago I told my mother I would scream and cry while they would shave my head. So she came along with me very well prepared with handkerchiefs. Not knowing I brought my Hello Kitty tissues. Surprisingly we didn't need them at all.

The wig

Which is strange, because my hair used to be part of my identity. I was always known as the happy bubbly girl with a lot of curly hair. But I have known it now for four months. Three days after I was diagnosed with breast cancer I stood in front of the mirror with a scarf wrapped around my head to see what I would look like.

Of course it was hard and very emotional. The sound of the electric razor. The first moment it touches your head. You keep breathing, breathing. I actually felt sick afterwards. Not to mention the morning after and you see yourself in the bathroom mirror. But I'll probably get used to it. Just like with everything else. You simply deal with it, because you don't have any other choice. This is your life. Right now. And no matter how much it fucking sucks sometimes, it's good to know you still have some control over it.

Chemo continues

So what is chemo like? Well I'm having a hard time finding the right words for it. I think most of us  would describe it as flu-like but that doesn't exactly cover it. It's worse. It's a black hole. You are very aware of the fact it's taking over your body and even your mind. It's heavy. It feels like the end of the world and you're never going to be able to crawl out of that black hole ever again.

But.

Six or seven days later.. you're doing better. Just like that. It's crazy; you're eating Dutch kale and pizza again. Or chocolate chip muffins your friend brought by! Your state of mind changes. Every now and then even the sun starts to shine again.

But of course in the back of your mind you know it's not over and you have to prepare for the next round. My first chemo I was scheduled for a double room. But because of some trouble they had that morning I hit jack pot and got to stay in the room suitable for five people. The whole experience was so overwhelming. The nurses running around. All the beeping infusions. Ringing alarm clocks. I hated it.

The radiation treatment place and the breast cancer department at my hospital were both renovated places. The atmosphere was warm and peaceful. Everything chemo department is NOT. I'm going to bring my iPod next time. Dive into my own little world.

Next time on She Still Dreams in Colour: hair loss.

The aftermath

Six days later. I feel a little better and sort of back to the land of the living.

It is difficult to write down the entire experience. It was hard and overwhelming. How do you cope with something like this? The poison going through your body and taking over. Knowing you need to go back for 7 more. It just does not seem doable. But then again, you don't really have a choice.

I suppose I experienced the most common side effects:

• Fatigue and tiredness
• Nausea 
• Headaches
• Heartburn
• Irregular heartbeat 
• Loss of appetite 
• Panic attacks 
• Constipation 
• Painful mouth, ears and throat 

Just to name a few.

Hair loss will probably be peeking around the corner as well within the next two weeks. The wig store knows I have started chemo so when I'm ready I just have to give them a phone call.

I realize I really need to go back to the original plan and take small steps. Focus on the next round and that's it. I do not need to look ahead because it's pretty pointless right now anyway. Going to tackle them one by one.

I'm going to leave it at that.. for.. now.. Zzzzzz.............

Short break

Chemo will start next week. I wasn't looking forward to my two week break from everything. But all I can say it's been the right decision. I have been eating food I love. Eating apfelstrudel with vanilla sauce and sipping tea with my sister. I just really enjoy these simple moments. I bought myself a Nintendo 3DS XL to get me through chemo (and it makes me feel like a little boy). Also I have started to prepare a chemo kit. Including products and medication that should make it just a little easier. Truth is, it just makes me feel a little bit more in control.

Of course there are hard times. I don't have much contact with my neighbours but so far three know about my health situation. The other day I ran into this guy who lives next door and after some hesitation I told him that I was sick. He actually asked me a while ago how I was doing and I told him everything was fine. I felt so bad for lying. So this time I was fighting to hold back tears but realized I couldn't. I think he assumed I was talking about a burn out or something like that. You don't expect your 30 year old neighbour to tell you she has breast cancer.

I'm not very good with making decisions these days. It's very hard to decide who to include in your circle. This new circle that is oh so personal.

But telling him was probably the right thing. Although I did wonder afterwards why it was so hard for me. Then I realized it was the first time I told somebody I am sick.. just like that, out of the blue. I have talked about it with people, but they already knew. It's very different when you just pull out the cancer card unexpectedly on someone like that. Very confronting.   

I also found out they are sort of going to replace me at work. Which was.. well awkward. I mean of course I understand it.. and it's okay. But it's tough that I'm here, at home. While they are out there. You know... moving, working, living.

But hey I have other things on my mind. Focus! Focus! Rush into the fray!

Hatcap

So my colleague texted me the other day saying she had a present for me. "A present for you and your mother. You and your sister. You and your friend. For you and everybody. So you never feel lonely."

 

She dropped by that same afternoon and gave me 'Hatcap'. A hat that can be worn in a variety of ways but also together with another person! Of course I had to try it together with my sister. Isn't it awesome?!

November is chemo month

Not a glass of rose wine this time, but the most feared cocktail of 'em all. Gain weight or lose weight (in other words diarrhoea or constipation). Nausea and extreme fatigue. Not to mention the bald head. These are just a couple of side effects. This is D-Day (or C-Day).

The biggest invasion to conquer planet Ciel. Goal: to destroy and kill any evil cells that are possibly still floating through my body. 

But wasn't D-Day also the beginning of liberation? It's coming. I will get my first chemo November 9th.

Today I talked to the nurse for an hour and she gave me brochures to read at home. I was informed about the entire procedure and what to expect. The regular blood tests, the appointments with the oncologist, the side effects etc. etc. So I start with 4x AC every three weeks and I will be at the hospital for about an hour and a half.

The next round of chemo 4x TH will be even harder because by that time my body won't recover that fast any more and I also have to stay longer at the hospital. However the final chapter called Herceptin (13x), should be a piece of cake.

Am I scared? Hell yeah. But I can't wait for November 9th. I have to do this. So rather sooner than later.

Level 3

Yesterday I officially finished radiation treatment. It still feels a little weird actually... You go there everyday for more than 4 weeks and then... it just stops.

Although I had mixed feelings about finishing, I did celebrate it with chocolate and rose wine. So hooray! Congratulations you made it! Go to level 3: chemo therapy.

Today I met with my oncologist who really likes surveys or so it seems. He always asks me what I remember about our last appointment and what I know about my treatment plan. He also mentioned the human body contains about 5 litres of blood and we are made of 60-70% water. How interesting.

After radiation treatment my breast looks really red right now. Especially my armpit is sensitive. Chemo could make it worse. So together (he says we decide everything together unless I come up with something really crazy) we decided to take a short break and that I will probably start within two weeks.

I already did the blood tests today. I'm meeting with the nurse this Friday. She will give me the chemo prepare package, which I'm sure will be lots of reading homework. By then I will probably also find out when my first chemo is scheduled. D-Day. Or more like C-Day.

The art of healing

With very mixed feelings I can tell you I have only two rads left. Of course I'm happy and relieved it's almost over. But then again it's not. Because the worst is yet to come. I will meet my oncologist this week to discuss the chemo plan. It has to happen sooner or later. So rather sooner. I have been buying hats like crazy. So I think I overreacted a little. Maybe. Then again... I like to have options. So ehm, I'm expecting a package from Korea with 5 more hats. Don't tell anyone.

Something different, I really want to share this mosaic with you guys. Meet Kamina Kapow.



In 2011 Kamina (at age 29) was diagnosed with stage three colon cancer. Just like me, she had to go through radiation and chemo treatment. When feeling sad or defeated, she found comfort in friends and family, writing, and in pushing herself to go for walks and enjoy nature. The greatest place she found personal strength was in art. With whatever tiny amount of energy she had, she created the most spectacular visual images that are truly amazing to me. There for her photos are very special and inspiring to me. Art is such a beautiful escape.

Look here and read here.

The visit

As I mentioned before my ears, nose and throat are always causing trouble. Instead of sharing my entire medical file let me keep this short. My Eustachian tube is a little funky and I have an overly-sensitive mucous membranes of the nose (or something like that). I already use a nose spray for this and the ENT specialist told me to keep using it during chemo and he also prescribed some salve for when things get nasty. So another thing I can cross off my list. 

And there's something else I can finally cross off my list as well... I was diagnosed with breast cancer during my summer vacation. Which means I left work with a clean desk, told everybody exactly where to find what. So after the whole "You have breast cancer-thing", I just didn't feel like going back there. Then I had surgery. Then I did the whole IVF thing which I kept a secret from everybody. Then I started radiation treatment and got very tired. Today I got home after rad #15 and then I was wondering what to do. What to do. 

I decided to visit my work. Just like that. Spontaneous. An unprepared surprise visit! I'm a project assistant, but you probably have to know I used to work there as secretary. In other words: big network, I know a lot of people. They all know my story by now.

 Sometimes you have to kind of die inside in order to rise from your own cocoon and believe in yourself and love yourself to become a new person.

But I stood at the threshold of new times... and I did it. I talked to 8 colleagues or so and it was good. It was good being there. Just being there. I realized there's stuff I don't want to talk about and I did not. That's okay. I also noticed I sometimes make jokes to lighten up the conversation. Which seems stupid but it's hard for people to talk to me as well. I get that. I'm okay with that. I'm also happy I never gave any of my colleagues the link to this blog. Because I need this place to rant. Just for me. I write them long emails with updates and with a few I have contact by phone. Most of them told me I should do whatever feels right. But then when I sometimes stay silent and not keep in touch for a while... they get all worried and upset. Seriously do you not get it? I need TIME. 

It was exhausting though. Telling your story over and over again. Everybody always has an opinion, some good advice or wants to tell you how they see things. I don't want to hear it. I'm already struggling with my emotions. That's enough. One of my colleagues asked me about my surgery and it caught me off guard. I'm so focused on radiation treatment right now. Above all it made me realize I haven't dealt with most of this shit like at all. Not to mention the whole IVF thing. Now is not the time. You just gotta move on. It will all come back later. I will probably have to get some help by then. Do I get extra points for being aware of this?

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".

Story about a ribbon

If you know me a little then you must know pink is my favourite colour. Pink is cute, sweet and soft. Pink is always happy. Pink is cosy. Well none of these things have anything to do with breast cancer.

It's almost October. Or Pinktober as some of you call it. Breast Cancer Awareness month. I'm still a newbie, but hooray, an entire month devoted to my disease.

Only 5-10% of breast cancers are inherited and linked to a gene mutation from a parent. So yes, that means that more than 85% of breast cancers are sporadic and we have no idea what's causing it. In the 1940s 1 in 22 women was diagnosed with breast cancer. Today it's 1 in 8. These aren't just numbers. These aren't just pink ribbons. These are actually people we're talking about here. Women with faces, with family... wives, mothers and daughters.

Back to Breast Cancer Awareness month. Awareness. If you do not know women can get breast cancer by now, you my friend have been living under a rock.



I watched Pink Ribbon Inc., a documentary that shows how some companies use pink ribbon-related marketing to increase sales while contributing only a small fraction of proceeds to the cause, or use "pinkwashing" to improve their public image while manufacturing products that may be carcinogenic. It's absolutely disgusting! For the millions that are raised for breast cancer research by the campaign, the film argues that not enough money goes to prevention or exploring possible environmental factors.

Don't get me wrong I think there are many great initiatives out there who help women go through this tough journey. Even if it just makes this roller coaster ride a little easier it's worth it! After all we're here, now. But again, the numbers are upsetting.

More than 60% of funds raised and donated in North America are being put back into awareness campaigns. Currently only 5% of funds raised and donated in North America are being used towards prevention research.

Same story with the Dutch Pink Ribbon organisation. By selling ribbons, magazines etc. they raised 16 million euro in 2011. Only 288.000 euro went to research; 7 million euro was still in the bank, 1 million euro was reserved for Pink Ribbon itself.

Basically we still slash, burn and poison breast cancer because we don't know what else to do with it. I just want you to know there ARE initiatives out there like Army of Women that are looking at the disease from different angles. They are not just doing studies on women who have had breast cancer and are being treated for it. But also on women who have never had the disease at all. If we could just understand the complexities then maybe one day...

So no we do not need an entire month of awareness. It makes me feel very uncomfortable because there are many other forms of cancer out there who deserve just as much attention. No we definitely do not need to buy all of that pink crap.

The first ribbon was made by 68-year-old Charlotte Haley, the granddaughter, sister, and mother of women who had battled breast cancer. She had began a peach-coloured ribbon campaign to press the National Cancer Institute to increase its budget for cancer prevention research. She was approached by Estée Lauder and Self Magazine who wanted to use her ribbons. Charlotte Haley refused to be part of what she felt was a commercial effort, so Estée Lauder and Self Magazine changed the colour of their ribbon to pink in 2005, to circumvent Charlotte Haley's efforts to stop them.

I think the ribbon needs to go back to its roots and its original intentions.

The Care Bear Stare

I started my radiation therapy. I've had two so far. So only 19 more to go.

Radiation is a local, targeted therapy designed to kill cancer cells that may still exist after surgery. The actual delivery of radiation treatment is painless. But the radiation itself may cause some discomfort over time.

1) In the area where you are receiving radiation, your skin can turn red or tan, and may be sensitive and irritated.
2) During your treatment course, you may feel tired. This feeling can last for a few weeks, even after treatment ends.

It's a strange strange world. You try to make it a part of your daily routine. But let's face.. this is not really normal. This is not what my daily life should look like.

Waiting room. Dressing room. Small hallway. Radiation room. They're using the pinprick tattoos to line up the machine accurately. They move you around until everything is perfect. There you go. Care Bears Stare!!!!! After a few minutes you're done. Small hallway. Dressing room. See you tomorrow! 

Et voilà!

I'm writing this from my own couch, watching my own TV. I'll be sleeping in my own bed tonight. I'm surrounded by my sweet furry bunnies who are hopping around the apartment. I decided to go home before radiation will start. I will start treatment next Tuesday. After radiation (21x), before chemo starts, we (= bunnies + me) will go back to my parents. From then on, we'll see how it goes. I've noticed it's better not to plan too far ahead. When you're having a good day, celebrate it. When you're having a bad day, accept it.

I have found my wig. It's short and curly. It's very me. When you take a look at the picture remember that I still have my own hair underneath there, so it'll fit better when I'm actually bald. Et voilà!

The sweet girl from the store told me that we had plenty of time left and that she could give me a hair cut that would match the wig. I always loved my long curls. They always have been my trademark sort of. But it wasn't a hard decision, I want to get used to the short length before starting chemo. I'm pretty happy with the result. It feels so light! Et voilà! Et voilà!

Enjoy your weekend everybody! 

Keep your head up (but also keep it warm)

I am a girl. I'm 30 years old but still a girly girl! Just because I have breast cancer doesn't mean I actually want to look sick. Tomorrow I have another appointment at the wig store. But of course there are other ways to cover up that bald head. 

Yesterday I ordered a bunch of stuff at several web stores. I know I won't start chemo for another 7 or 8 weeks. But I want to be prepared and get used to this whole new look. I am curious to find out what style/fabric/colour I like best. I love that bohemian, gypsy, hippie look! That's me. I made this mosaic to show you guys a couple of my favourites and also the diversity that is available. Some of these were even designed by people going through chemo themselves! But don't forget to use your own imagination as well. Spice it up a little with other hair accessories such as flowers or a vintage brooch.

Photos are from several web shops that really deserve to be checked out.
Dutch: Mooi Hoofd, Rosette la Vedette, Mutssja 
American: Topsy Turban, Turban Diva

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.

To wig or not to wig

The last few days were very hard for me. I feel as if I have so little control over my life and well it just hit me how much I miss my old life. I am being ripped away from my everyday life. Julie compared our journey to a road trip. Her comparison seemed so spot on! With each treatment they will give you time to recover before the next. But in fact it's nothing more than a short break to pee. You gotta get back into the car until the next rest stop. You stretch your legs and use the bathroom, maybe you will feel a little better. Then after a while, you start to feel trapped in your car. You start to panic about everything. Oh my god where is that next rest stop?! Then I haven't even mentioned our destination yet: live a long and healthy life. But wherever we go next... we will carry this road trip with us in a large bag pack and it will hang heavy on our shoulders.



After I found out I had breast cancer I knew right away I was going to get bald. It was only a few days later when I stood in front of my mirror with a scarf wrapped around my head to see what I would look like. My first instinct was to go with a wig. But after talking to the nurses and reading more about it online I figured it would be more comfy to wear a scarf. Then I met several people online rocking the wig and decided to change my opinion once more. I mean, why not try it all?

So today was my first appointment at a store specialised in wigs. It was weird. WEIRD. Trying them on, I wasn't sure whether to laugh or to cry. The girl helping me was very sweet but at some point I  looked like Anita Meijer. The plan is to go medium short and curly (my hair is now long and curly). The wigs they had were way too blond for me. Blond is not my colour. (It was obviously Marilyn Monroe's thing. I took the photo above in January this year for a movie star theme. I bought the wig on Ebay for 7 euro). So I'm thinking more brownish, warm, mocca, chestnut. But hey there was at least one that I sort of liked. So they are going to order it in several colours. They will also order a few more so I get to do another wig party. When I pick one out, they are going to cut my hair similar to the wig to prepare me for chemo. Yup nobody said it was easy. 

I got a tattoo

Today was my first appointment at the radiation department of my hospital. I got to meet with my doctor for an intake appointment. At first she asked me questions about my medical history. She also checked my breasts and how the scars are recovering. Then she started to explain 'the plan' to me. I will get 21 treatment sessions. We will start within 1-2 weeks.

She made it very clear to me that there are so many different rumours and weird stories going on about what you can and can not do during radiation therapy. She said, "I'm telling you right now you can do anything you want and from now on I'm your doctor." She's a very upfront lady. She even told me she once read an article claiming wearing red clothes could cause breast cancer and that things like that really piss her off.   

I also found out I was scheduled for a CT scan later that afternoon. Lying there was just so weird. One of those moments where it just hits you again. One day you're taking the bus to your work and then a few weeks later somebody is putting wires with sticky tape around your boob. They started to draw on it as well. Oh yeah and I should probably mention I got six tattoos. Okay so they are just pinprick tattoos but still! The radiographers use these to line up the radiotherapy machine accurately every time you have treatment.

Surgery: done. IVF: done. Here comes the next chapter. 

Closed chapter

Monday at exactly 12 a.m. I had to inject myself with HCG. I was expecting it to hurt, but it was pretty much like all the other injections. Wednesday, 36 hours later, the egg retrieval took place.

My favourite nurse saw my name on the list and changed her schedule to be there with me. Seriously how sweet is that? I was very nervous and it was just so nice to have her there and talk to me.

I was given the pain medication through an IV and it made me feel al warm and dizzy and that's when they started. It wasn't that bad actually. Of course it's uncomfortable and all. But nothing I could not handle.

I was told earlier this week that one of the four eggs probably wasn't big enough. So then there were three. They did actually took away all four of them and it was over in a few minutes. My favourite nurse helped me get dressed and took me to a room where I could rest for a bit. Soon I would be told how many eggs were fit for freezing.

I was hoping for three, but very soon I was told there were only two. So then there were two. Now you have to know the human egg is the largest cell in the human body. It contains huge amounts of water and its outer layer is fairly water-resistant. So very often problems occur during freezing. Today I received the final phone call that only one egg made it into the freezer. So then there was only one left. I hope it won't be too lonely.

I'm not even sure what to think about this whole thing any more. Was it a disappointment? Yes. Am I glad I did it anyway? Yes. Am I willing to give it another try? No.

Don't get me wrong, the whole IVF traject is worth doing. It offers hope for the future and peace of mind. But when the outcome is disappointing as in my case, I just don't think I can go through something like this again. From now on my health is going to be priority number one. I want to get better. I need to clear my head and not be bothered by all the hormones. I want to beat this fucking cancer.

So far my experience with IVF. Been there. Done that. Chapter is now closed.

As my dad put it, "This could be the golden egg."

Growing pains

A few days after I was diagnosed with breast cancer I remember my sister and I sitting in the car. Going somewhere to clear our heads. We were talking about how everybody around us all of a sudden seemed pregnant. Waiting at the traffic lights I remember her saying, "It's so weird... some people have babies..." and then I finished her sentence, "and some people get a tumor."

Now only a few weeks later I have started this project that might be my only chance of ever getting pregnant. Life is ironic. Oh yeah and pretty much fucked up.

Life was just happening. It was good. Perhaps not very adventurous. A little on the safe side. But I was owning my own house. A nice job, with exciting new changes coming my way. Totally in love with my two furry bunnies. Living the single life and definitely not thinking about children. Then BAM! Cancer.

So I've had another echo and the four little eggs are growing. They have to be between 15 - 20 mm before the egg retrieval can take place. I have to come back for another echo tomorrow. I'm not really looking forward to the whole retrieval thing. In case you are wondering why.. Once the doctor feels I have reached the criteria to proceed to the egg retrieval, she will tell me to inject myself with human chorionic gonadotropin (HCG), a hormone, to finalize growth and maturation of the eggs. This injection is very carefully timed so that the egg retrieval will occur at the optimal time just before ovulation occurs.

During the egg retrieval I will get some pain medication by an IV. A needle is attached to an internal ultrasound probe, which is inserted into the vagina (OOH MY GAAWD!). The doctor uses the ultrasound to see the ovaries and locate the ovarian follicles. The needle punctures each follicle, and a gentle suction is applied to remove the egg and fluid within the follicle. An embryologist then evaluates the fluid and finds the egg. Then it's hop hop into the freezer (do not put me next to the frozen meat puh-lease!). After egg retrieval, you may experience cramping and feelings of fullness or pressure. You get to go home after an hour of recovery.

Well it all sounds lovely doesn't it?

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.

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.'

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 Skarsgård).

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.

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 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!

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 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!"

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.

Underneath

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



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.

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.

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!