September 30, 2012

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.

Wearing The Pink Ribbon

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.

September 26, 2012

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! 

September 21, 2012

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! 

September 19, 2012

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

September 17, 2012

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.

September 13, 2012

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.

03/52 Movie Star

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. 

September 10, 2012

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. 

September 6, 2012

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."

September 2, 2012

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?