Changing colour

So it's been a while, Hello October. In case you were wondering, I'm ignoring Breast Cancer Awareness month. Call it denial. Whatever. I am so done with that shit.

As for the running part... that didn't go as planned. Wow nothing does go as planned did you notice?! Better all let it go and see what happens... So I ended up with some serious knee ache and decided it was better to quit for now. I cried a lot because of the quitting part yes. Because I finally had found something that made me feel normal, and not like a patient. Something that felt so good... and wow my body could handle it. Guess not. So I am not giving up on this... but for now it's back to walking. Today I walked my first 5K. It was pretty good... the music, nature, just me, myself & I... at fast pace.

I'm still experimenting with the anti-depressants. I am now on 30 mg. Because after a few weeks things were back to normal (in other words: lots of crying). But I can't really say the 30 mg is making me feel a hell of a lot better. Don't get me wrong I have good days, but it's still a struggle sometimes. I know with anti-depressants you have to give it a few weeks.. so that's what I'm going to do... and I'm meeting with my psychiatrist in a week or so.

What else, what else? I saw my radiologist which brought back lots of bad memories. Radiation treatment. The dressing room, autumn, walking through that hallway with my upper body undressed. So I try to do what my psychologist says, I let myself think about it... for a while... let it flow. Then I tell myself, you are here now, no treatment whatsoever. You're okay. And then I try to move on. Sometimes it works, sometimes it doesn't. I suppose it takes practise, but I kinda think that is the way to approach these triggers.

Next week I will have my Zoladex injection. But it's the last one this year. 

I have been keeping myself pretty busy with penpalling, snail mail, mail art, mail swaps, etc, etc. I enjoy it a lot! I also have been working on Christmas postcards for my Etsy store, they are already available if you want to check them out!

I also had my second hair cut! It really is growing and my curls are sooo coming back! I also have a pair of new specs which I really love. I have started to buy some new autumn/winter clothes as well. Which feels good. Ah and I also gained some weight. Hallelujah!

One small step

On Monday I saw my radiologist about the pain I'm having underneath my breast. I know radiation therapy can do permanent damage in many different ways so I was pretty upset about this to begin with.

My doctor examined me (big ouch) and told me I still have some fluid in my breast. That would explain why my breast and scar area are still very sensitive. She wasn't sure about the rib, so she decided to do a photo and make sure nothing was damaged. Luckily the photos came back clear and showed nothing of that matter.

The cartilage between the rib cage can become very sensitive after radiation therapy and chemo and by overuse or over-stretching of a muscle that area can even become infected. It hurts. It takes a long time to heal. Wonderful!

Yesterday I had to go to work to sign some papers because it's almost a year since I called in sick. A lot of things have changed, some mistakes were made with my contract. Things I'd rather not break my head on right now because they seem not important. Departments have moved, people have left. It was weird. But I know I have to jump back on the horse sooner or later. And it all starts with baby steps and visiting and catching up with everybody.

One colleague was totally in shock and teary eyed when he saw me. Another one just walked by me because he didn't recognize me. These situations are so god damn awkward and uncomfortable. But when I'm in a good mood, really it's a little bit funny as well. It's so weird that it's me that is making them feel uncomfortable. Little ol' me. Okay so I don't feel the same person but I'm still Ciel. Your colleague. I get their emotions. I understand it. Cancer is a scary word. I try to be open about things, explain things about treatment and that usually calms people down.

I know I have to visit more often just so they will get used to me. So they won't have any questions any more. But it's hard and confronting.

I broke down crying when I talked to the girl who is now my boss and who I also share an office with. I know it doesn't matter and it's okay for them to see me like that. As an introvert this is a big thing for me. So we talked and cried and talked and cried and it was good. It was another step.

I don't know when I will be able to go back to work or move back home, I just know right now would be way too soon. Sometimes I feel guilty about this. That I can't tell people when I'm coming back. But it just doesn't work that way. Healing needs time. Healing won't set a date. But revealing your feelings is the beginning of healing.

Let's finish with some positive news:

• The nurse said my scar looked really great and it's because I'm a non-smoker. So there you have it your reason to quit. 
• I shaved my legs for the first time in like 8 months! 
• My eyebrows, eyelashes and hair seem to be growing a little bit faster now and I can definitely see progress! HOORAY!

My bumpy road

I guess I should start by telling you about my echocardiogram which was good and showed an ejection fraction of 62% again. So the Herceptin story continued and that Friday I had H #6. Instead of the usual 30 minutes, we let it run for an hour. I still felt pretty spiritless for three days but perhaps I was back on my feet a little earlier than last time. It's hard to compare; every time is different. It was the worst weekend ever anyway, because I knew I had to do a mammogram on Monday.

I was nervous as hell. So scared, totally freaking out, going crazy. 

I had a lumpectomy but my breast is still very sensitive (more on that later) so I was a little worried about how they would 'smash' it between the plates. But the lady was very sweet and careful. Apart from all the fear and anxiety that goes with it, the mammogram itself I don't really mind. It freakin' hurts for sure, but before you can think 'f...' it's already over!

So then she told me to wait in the little dressing room and came back after a few minutes to tell me I would get the definitive results tomorrow but that I had nothing to worry about and the photos looked fine. So right there, sitting in that little dressing room with almost no light and bird wallpaper I felt it. That sigh of relieve. 

After that I had I had to do a Dexa scan and some blood tests. I will get the results when I meet my oncologist in August. They are important for hormone blocking therapy. We haven't decided when I'm going to start that one.

So then I came home. Everybody was happy and all of a sudden that sigh of relieve was gone. I felt so overwhelmed by everything. By my own story. The story that started with a mammogram about a year ago. I could not stop crying. Uncontrollable sobbing.

The next day I met with the nurse who officially told me the results of the mammogram were fine. I think I was feeling a little bit better by then but still so sad because of everything that has happened. How can I not? We talked about therapy and mindfulness but I still haven't decided whether I want that or not.
 
So I tried picking up yoga a few weeks ago, sun salutations, but my breast and armpit are still very sensitive. Which is completely normal after all the treatment I've had. But lately my rib (it could be a muscle as well) hurts as well. I started reading about long-term side effects of radiation therapy and well it didn't make me very happy. So I called my radiologist's office and asked them for an appointment. At first it wasn't possible, because she's such a busy woman with a busy schedule but I explained everything and then I got a call back. I can come see her this Monday.

Great another visit to the hospital. 

All of a sudden I got so scared and mad because of all these side effects. It's hard to accept you're a 31 year old woman with aches and pains and feeling tired all the time. I feel like it just won't stop. It's a bumpy road? Yes but it's bump after bump. Seriously what else do they have in store for me?! How do you just accept what has happened and move on. I know I have to look at all the positive things and let go of the bad. But that is a hard thing to do. A god damn hard thing to do. Sometimes everything sucks major ass.

But hey my mammogram was fine. No signs of a tumor anymore. I AM thankful for that with my entire heart.

P.S. Thank you all for your comments on my last post. It really means a lot to me! Thanks for sticking with me and reading about my journey.

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.

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".

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! 

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. 

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.