January 31, 2013

Robo girl

Robo Girl

You pick up the pieces and dust them off. First Taxol/Herceptin tomorrow. Only three left after this.

January 29, 2013

How dementors make chemo suck

When you get cancer everything changes and you know your life will never be the same.

I would like to use this quote from Laura that describes everything just perfectly.
"Cancer changes everything in life. Cancer can be cured one minute, then it can come back and kill you. Chemo can make you infertile. Cancer slaps you around the face, kicks you in the stomach and pulls out all your hair, eyebrows and eyelashes one by one while you're still lying on the floor, too weak to move or fight back. It takes away your confidence, your lust for life. And slowly, it can take away your positivity."
Reading those words really gave me goose bumps because they hit so close to home. Because of her words and my chemo black hole experience I all of a sudden started to think about dementors.

The Darkness Behind Her Eyes

The "soulless creatures" from the Harry Potter books. They are the guards of the wizard prison, Azkaban. They are soul-sucking fiends who, as their name suggests, cause people who encounter them for too long to lose their minds. That would explain the whole chemo brain.

Being blind, dementors hunt their prey by sensing emotions. They feed on the positive emotions, happiness, and good memories of human beings, forcing them to relive their worst memories. The very presence of a dementor makes the surrounding atmosphere grow cold and dark.
Besides feeding on positive emotions, dementors can perform the Dementor’s Kiss, where the dementor latches its mouth onto a victim's lips and sucks out the person's soul. Chemo is like meeting the dementors!

After some research on dementors (that's the kind of geek I am) I found out Rowling created the dementors after a time in her life in which she, in her own words, "was clinically depressed". Dementors really can be viewed as a metaphor for depression. I thought that was a pretty cool fact.

However, because these dementors are immortal, very few methods exist to repel one; but Harry used a Patronus Charm to shield himself and drive them away. Chocolate is an effective first aid against mild cases of contact, which may suggest a non-magical, physiological effect on a person's endorphin level.

So how to prepare for your next chemo?
1. Bring chocolate.
2. Practise your Patronus Charm (mine is a bunny of course).

The Proper Dose Of Chocolate Chip Cookies 25/52 Hogwarts

It also made me realize chemo stinks. Why can it be fun? Why can't the pills be happy pills? Why can't the side effects be smiles and laughter and feelings of zen? We need some happy camper side effects such as absolutely beautiful drop-dead gorgeous hair grow. We want a huge aquarium in the middle of the room to decrease stress. We need furry white rabbits jump around. Why aren't there rainbows painted on the walls of chemo land yet? WHY?!

January 25, 2013

The thrill

Wednesday I saw my oncologist. Well actually I got a call 30 minutes before my appointment that I could leave 30 minutes later. This man takes so much time for his patients that his schedule is usually mixed up. Even after we arrived there, we still had to wait for another 45 minutes.

Most of his patients know this by now. Because he takes just as much time for you as well, it's not a problem. I was inside his office for 45 minutes. We talked about the last four chemo treatments and how I experienced them. It was a good conversation. It felt good to get it all off my chest. We discussed the panic attacks. He told me I am in control. I decide whether I need help or not. Basically I said I didn't want any right now, because enough is enough. I want to get through these last four and then seek help. That's my plan. He said it was good to have a plan.

Then he also checked the boobies and the scar which was very satisfying for the hypochondriac in me. Nothing strange came up.

We talked about the upcoming chemo treatment. According to my oncologist most patients experience TH as a lighter chemo version than AC. Of course there are several side effects and allergic reactions known.. but we'll just have to wait and see how I'm going respond to everything. The not knowing part, makes me nervous... but I guess when it comes down to it I'll be there. I will finish them just like I finished these previous four.

Then there's the controversial subject of eating soy. As a vegetarian I don't eat animals. I don't want to change the world, I simply love animals. I do sometimes eat soy products to replace the meat. But after reading more on the internet I realized the benefits and risks of foods such as soy, which contain plant estrogens, are not well known at this time. Until the issue becomes clearer, many websites recommend that women who take hormonal therapy or who have estrogen-receptor-positive breast cancer (like myself) avoid soy supplements because they contain high concentrations of isoflavones. But in general, it's fine to eat moderate amounts of soy foods as part of a balanced diet.

I don't believe products like soy can cause cancer. It is probably just a case of bad luck. But what if my tumor responded to the isoflavones and started to grow because of it? This whole thing makes me feel very uncomfortable and obviously leaves me with another big question. How and what am I going to eat in the future to stay healthy? My oncologist was a bit confused about the whole thing as well. He told me to look into it some more. If I am not able to make a decision for myself I should contact him and he'll look into it. Maybe I should talk to a dietitian about a plant based, soy-free diet. Or an organisation outside of the hospital specialized in cases like this. I don't know, I don't know.

Then on top of everything my mother mentioned my photography to my oncologist. She was like, "show him, show him something". Really embarrassed I showed him the 'Flowerheads' photo and he wanted to see one more. And then another one. He thought it was great! He even made a note about it and told me we should do something with this...

So all and all it was a pretty good appointment and I left feeling great and relieved. But then after a few hours, after all the cancer talk started to sink in, I slipped into my I-wish-this-wasn't-happening-to-me-and-I-feel-pretty-sad-mode. It's weird how your mood can change just like that.

Today I met with the nurse for a more detailed description of the TH treatment. I have a little more faith now than before so that's okay I guess. But it is still a matter of first seeing then believing. I also got my Dexamethason prescription (ugh). She also told me to try and break the circle. Seek for a thrill. Which things still make me happy, make me smile, give me energy and make me forget. So I decided to pick photography and my bunnies and this is what happens...

The Real Rabbit Earflap Hat

No bunnies or bald heads were injured during this shoot. But I insist you do not try this at home. It takes a lot of practice and a little photoshop to make it work. Lola needs her fur more than you do. So please say NO TO FUR!

January 22, 2013

Fighting Fancy

Last year Heather Mason Owens was diagnosed with breast at age 28. She felt thrown into a world she had deemed only for old people. Something I can relate to very much.
Now on top of that cancer can strip women of what makes them feel beautiful. Hair loss and hot flashes are just a few side affects of having cancer. Heather decided to create a bag of products that made her feel beautiful and that gave her hope.

Fighting Fancy is now a non-profit organization providing chemo bags to young women 15-39 with breast cancer. Bags include the heart tank and necklace she wore each chemo and other beauty, dental and hair products she found helpful during treatment.

I feel so honoured that her first international bag was shipped to The Netherlands... and I received it today! I have to say I'm truly amazed by all the fantastic products in this bag. So beautiful, girly, feminine and helpful! Heather you definitely made my day! Big smile because this really means a lot to me. Thank you so much!

 If you'd like to help Heather by making a donation click here. Her blog can be found here.

January 18, 2013

Adiós AC

Goodbye Adriamycin, or Doxorubicin Hydrochloride, or whatever your name is. Goodbye Cyclophosphamide. Bye bye little fuckers. You were mean and nasty to me and you seriously kicked my chemo butt! But I should be thankful for your existence. I am aware of this.

So no AC wasn't a pleasant experience and it has been hard on me. Each round was a little different but overall I got pretty sick each time for at least a week. Near the end my loss of appetite became worse and I am now way more tired than I was when I first started. With each round I also had a painful mouth, ears, and throat. The nausea was horrible, especially day 3-5. I lost a lot of weight and well constipation ain't no fun at all.


The hair loss? Before chemo somebody told me hair was overrated and I didn't really believe it. But I think it's sort of true. I have gotten pretty used to the bald head. Of course it's sad, but it's nothing compared to the other shit we get thrown into our lap.  

What will always stick with me though is that black hole, the panic attacks and the sadness. No I haven't been able to get rid of those.

So now we move on to the next round. The next challenge. Taxol/Herceptin. Next week I have two appointments scheduled where I'm hoping to find out more about these new meds and its side effects.

January 9, 2013

The fear

The Fear

This Friday. It's coming chemo #4. Breath in, breath out.

January 8, 2013

The shit we say

When you drop the word cancer your entire world changes. People will get nervous when they see you. People will drop by, they want to see you, talk to you, hug you. People will disappoint you. People want to help, but they don't know how. Some will disappear. But you'll also get support from unexpected corners of the world.

I understand if you feel uncomfortable when talking to us. We can tell these things. Just say it out loud! It's okay. But please do not bring up the following:

I am so impressed by how brave you are
I'm shit scared. It makes me feel uncomfortable. I do hope by sharing my story I will raise some awareness. Young people do get breast cancer. I can only hope I might inspire people who have been recently diagnosed. Even if it's just one. The connection with other breast cancer patients has become very important to me.

I know how you feel
Nothing could be further from the truth. Unless you yourself have undergone the same process, you know so very little about what we're dealing with right now. So please do not compare my change in appetite with your wife's pregnancy. Do not compare my story to your neighbour or best friend who had breast cancer as well.

It'll be fine
You have no ability to make this situation 'just fine,' and we all know it. Once my treatment is finished I will not get a note from the doctor saying I will live a long and happy life (I wish!). 

Keep fighting & stay positive
Are you really implying that surviving cancer is only a matter of 'fight' and willpower? I very often feel like crap and am trying to accept these feelings as well.

You look great
I'm bald, tired and lost 10 kg (22 lbs). Please only say it if it's true! If we look like shit and you lie about it, oh yeah we can tell. But we do like to hear it when we look and feel okay.

So unfair 
This statement is not only not helpful and not supportive. It has nothing to offer, no comfort whatsoever. I was diagnosed with breast cancer. The doctors don't know why and I myself do not live under the illusion I'm going to solve that mystery any day now.

Humour in the tumor 
Yes there's such thing as tumor humour. But humour me, watch our signals. We aren't always in the mood for jokes. I always felt like it's my tumor, so I'm the only one allowed making jokes about it. When I do, laugh really hard!

Do not tell me to go see Dr. X, try a certain diet or visit certain websites. Please let me make my own decisions.

I get that people are curious and are wondering what we're going through. We do not always want to talk about it. We do not always want to answer questions about our fertility, how chemo makes us really feel and what the boobies/scars look like.

So it's okay to tell us you don't know what to say. Sometimes it's best to say nothing at all. We do not always want to talk about cancer land. But do not hide your feelings, if you want to cry with me please do. You don't always need to be positive or strong. We're all people here. If you want to offer help, offer specific help. But also understand that cancer patients do not have the energy to keep up their relationship with you right now. The letters, care packages and emails I have received over the last six months really make me feel loved. It's messages like, 'I want you to know I'm thinking of you but you don't have to write back', that add no pressure. So no strings attached works best!


January 4, 2013

All things come in waves

I'm happy the Holidays are over and that things can get back to normal. Normal as in finishing my fourth chemo next week.

Yesterday I decided it was time to visit my work again. Have a cup of tea with a couple of colleagues, wish them a happy new year. After changing my mind several times I decided to wear a hat instead of my wig. I like to wear my wig when I go out and be anonymous. But when I'm around people who know I have breast cancer I always feel a little weird wearing it. I feel just as comfy with a hat. So I figured what the hell. It's actually so cold outside I usually wear two hats, or my wig with a hat! Being bald is ice ice cold!

I still had to take a few deep breaths before entering the building but it definitely wasn't as hard as last time. So then I talked to a bunch of people. Mostly about how I felt about chemo. How I have been dealing with things. Then I talked to some more people, even had lunch with a sweet colleague. Kept telling the same story over and over again. My story. My worries. My pain. My world.

All Things Come In Waves

I stayed for more than three hours so by the time I got home I was exhausted. Even today I still am pretty upset. I really believe self-knowledge is they key to everything, but I have a hard time figuring out why I feel so sad all of a sudden.

I guess it's just confronting. Telling your story over and over again. I usually write things down, but when you actually hear the words out loud I guess it's different. Being there also reminded me of the long road I still have to go. How difficult it's going to be, picking up the pieces when treatment is done. It was just all a little too much I suppose?

So we learn from the past and set new goals for the future. Back to basics. One step at a time. Oh and how a good cry and a blog post can help!