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".