Bye bye 2013

Goodbye 2013. You were by far the worst year of my life. I can not describe in words the pain you caused me. At the end of this year it feels like I have put you in a way too big bag and I carry you around on my shoulders. Yes the entire weight of 2013 is on my shoulders.

So I want to say goodbye to 2013 and start a new beginning. However I still have to do do two more Herceptin and that isn't easy with something so heavy holding your heart and pushing you down. But I must finish these two first. Hopefully my new year will start in February. I know I still have a lot of stuff to deal with, that huge bag among other things. But baby steps. I want to see the sun shine again. I have been crying so much, I want to smile again.

So here comes 2014 and it better be good. May it be a a healthy and a happy one for all of you! I want to pick up the pieces, find back old treasuries. Draw and paint with new colours. I want peace and balance. Bunny snuggles. Life through a lens. Here comes 2014, here comes the sun...

Updated the hair diary.

The last 2 KM

So after my adventure with the Fluvoxamine anti-depressants and talking to my psychiatrist I (we) decided to try something else. Something just for my anxiety called Pipamperon. Now you have to know I love watching The Walking Dead but actually turning into a zombie now that's a complete different story. It did exactly the opposite as the Fluvoxamine did. I do have to admit it helped with my anxiety but other than that it was horrible. I felt no joy any more. I couldn't even have a normal conversation with my parents! They said I had no facial expression. I couldn't sleep, constant head aches and I was trembling on the inside but looked numb on the outside. So freaky weird.

So for now... no more drugs.

I seriously was about to quit the last two Herceptin, that's how bad I felt. A dead battery; no energy left. But now that I quit those damn pills, okay I'm still nervous as hell... but I do feel better. I feel like myself again. I started painting in my art journal and I enjoy taking walks. Although I don't feel festive and I will be so happy when the Holidays are over... I think I need to finish this treatment even if it's a struggle.

I talked to my psychologist today. She said, "You're not going to quit 2 KM before the finish line right?"

So tomorrow is my birthday, I am turning 32. I am trying not to think about this year too much. I read somewhere, "Don't look back because you're not going into that direction", and it seems very fitting.

I think I will start my New Year in February instead of January. It will be something different for a change.

Happy Holidays to my dear readers! 

Some days there won't be a song in your heart...  SING ANYWAY!

It's a milestone

My very first official haircut!

It seemed worth a post after all the drama.

Got any power left?

Anti-depressants + me = bad idea.

So I will keep this short because it is what it is. But I do feel like I have to share my story and well, this too is part of it.

The side effects that usually occur the first two weeks started to kick in the second day. Even though I was only on 25mg. It was bad. I've never experienced anything like it before. Basically the next four days I spent on the couch crying hysterically. That anxious, nervous feeling I felt before, double it by 3x. I felt nauseau all the time. The Lorazepam I was taking as well did not calm me down. I was so upset and I felt like my head was about to explode.

The thing that scared me most was that Herceptin #14 was coming up. I knew I couldn't do it, not like this. I was a mess.

So after five days I called my doctor and told him I couldn't do it. I couldn't live like this for another two weeks and hoping and keeping my fingers crossed the medication would work within 6 weeks. That's no life. Not for me at least, not after everything I've already been through. I need something, and I need it now. So he said it was okay to quit of course, but it would be couple of days before everything was out my system.

So Herceptin #14 was horrible. I was so god damn nervous. Which involves lots of crying and choking. But I made it through another one. Now there's three left. Three. I suppose I have to find a little strenght to finish these last. But seriously, this is not normal. I just wish I could snap my fingers and *poof* cancer gone. Cancer you need to be gone. Out of this fucking world. Nobody, young or old, should have to deal with you. Did I mention how fucking much I hate you?!

Updates: my crazy hair which I have no longer control over. 

Just an ordinary week

MONDAY
I saw my psychologist. For some reason I feel our conversations are getting harder for me. Perhaps because she is getting to know me. Our discussions are intense and confronting. My head is a mess when I leave her office. I try to be completely open though, and tell her what is on my mind. Even though it hurts so much. "I don't know whether it's my soul or my heart", I told her, "but it physically hurts." It's oh so heavy. There's a circle of darkness and it needs to be broken.

TUESDAY
I found out my appointment with my psychiatrist wasn't scheduled for Friday like I thought it was. He called me later that day and told me it was his fault and we made a new appointment. Fortunately he still had some time left on Friday. 

WEDNESDAY
Visiting my oncologist is always a big deal. I prepare myself very well with a list of questions. He told me that he's a bit worried about me starting the Tamoxifen with the state of mind I am currently in. Because it causes depression. So we agreed to wait until I finish my Herceptin in January and we will meet again in February to see how I am doing. I am actually feeling quite relieved about that. Even though he told me I am not an average patient and sometimes you have to mix up the protocols a bit to make it work. He also told me I should be so proud of myself I finished chemo. Herceptin, only four left. It should make a stronger person.

I am always so happy to undress for him ha! Does that sound weird?! I think if you're a bc cancer patient you'll understand. He checks my breasts and lymph nodes and everything looked fine. I am always incredibly relieved after that. He asked me whether I checked myself. I told him I did, but the one where I've had surgery on just feels weird and I never know what to think of it.

He also told my mother I was a bit of 'special' one. He obviously thinks I'm a bit different than his other patients I am not sure why. It must be because of the photography and the art I think. He's probably also amused by the fact I do so much research on the internet.

So then my mother came up with the idea to do another blood test and my onc agreed. Wonderful. So off we went. In the waiting room I told her that my onc asked me whether or not I checked my breasts. But it was a bit loud in there and she didn't understand what I was saying. Next to me was this huuuuge bald guy so I whispered again; "He asked me whether or not I checked my breasts". My mum still did not understand so I got annoyed and all of a sudden yelled, "HE ASKED IF I CHECK MY BOOBIES!" The big bald guy started laughing and his face turned all red. It was so aaawkward.

THURSDAY
So you guys know I started taking calcium because of the whole osteoporosis thing I mentioned a few posts ago.Well apparently calcium has side effects too because I was having diarhoea and cramps for a week now. I called with the nurse and she told me to stop taking them for a while and she will call me back in three weeks. We can either lower the dose or perhaps start taking them every other day. Are you fucking seriously?! Is there any medication out there WITHOUT side effects?! I am so god damn tired of this shit.

FRIDAY
To end the week I had another appointment with my psychiatrist to talk about anti-depressants. I did some research in advance, even talked to my own pharmacist. Eventually we both came up with the same name. It's an anti-depressant that, once I start taking Tamoxifen, won't mess with it. Complicated stuff. I will start with 25mg this week and will double my dose next week. I am so scared. Scared of yes, side effects. But it's worth the try. So please keep you fingers crossed for me this thing is going to work without too much trouble. Because I've had it with everything. Please let this be my happy pill. No seriously, just some peace, some breathing... breaking that damn circle.

Mixed feelings

I am not sure if it's smart to write a blog the evening before getting another Herceptin IV. Because I am not myself, so nervous and emotional.

But there's stuff. Things I need to get off my chest. And well it's not like I have many happy days these days anyway.

Before all this cancer crap fell down on me I was working as a project assistant. Before that I worked as a secretary for almost ten years at the same company but at different departments. It was a nice job to start with when you're in your twenties. I've learned a lot about the job and about people.

I am not much of a career person. I prefer a place with a nice atmosphere where I feel comfortable. But when I saw the big 30 coming up, I felt I was ready for some change. I applied for a job as a project assistant within the company. It was a big step for me. I don't like change. I got hired and I knew it was a temporarily job for as long as the project would last. I was sort of hoping it would turn into something permanent and they told me maybe it would. So it was all good. I needed the experience. I would start a new chapter and again learn and develop myself.

About 9 months later cancer hit my world.They never officially replaced me but the project is now finished. My contract will end December this year. Basically my contract says I will go back to being a secretary again. This hit me hard. I don't know why because the thing is, if cancer wouldn't have showed up in my life this would have happened as well. But I would have had more control over it. I would have been able to look around for another job.

Now it feels like something cancer is taking away from me as well. I am god damn tired of cancer taking and taking. It feels like another step backwards in my life.

When I reason this with my mind instead of my heart, I know it's not that bad. I should be happy I still have a job during these hard times. I dare saying I was a good secretary or management assistant as we called it. I know the drill and when I do get back to work, I will at least start with something that is familiar to me. Perspective, perspective! I have a bunch of great colleagues and they will always support me and be there for me. I was there last week and spoke to two colleagues and it felt really good. No big groups of people. Just two of my fave colleagues. That is what I need. No worries about money. Because being a secretary again means lower pay grade. I really have to remind myself health is more important. Happiness is more important.

But all and all it was enough to make me cry for a while.  I am so glad it's almost November. I will meet with a psychiatrist about anti-depressants and my oncologist this month.

The sleepy girl

I'm tired and that's a fact. I would like to explain that there are different ways to feel tired. Because it's an important factor to deal with when you're a cancer patient.

Treatment takes its toll on your body. Chemotherapy and radiation therapy obviously have a huge impact and can make you feel exhausted, even years after finishing treatment. The build-up of toxic substances that are left in the body, yes even when you're done with treatment, can cause extreme fatigue. Doctors do not know all the reasons cancer patients have fatigue. Many conditions may cause fatigue at the same time. It's confusing for both sides I guess. But it makes sense when I tell you that your body needs extra energy to repair and heal body tissue damaged by treatment right?!

Side effects. Yes a lot of us need to take the five year pledge of Tamoxifen. A fantastic drug with a billion side effects and fatigue is one of them. I mean serious business here. I've read stories of 30 year old women whom felt like 90-year-old-walker-grannies. This is one of the reasons why I am so scared to start taking this little pill. Depression is the other one.

The emotional stress of cancer can cause physical problems, including... yes fatigue. It's common for cancer patients to have changes in moods and attitudes. Anxiety and fear are big words all of a sudden. So we often reach a point where we feel both tired mentally and physically. A tough place to be in. Throw in depression. You'll get one big messy pile. Oh so fragile. 

I have FIVE Herceptin left. So I decided to approach this matter in a positive way in my art journal. But when I was done I felt like crap. Five is still a lot and it was so overwhelming. I hate the fact I won't be able to finish my treatment this year but that I have to do two more in 2014. 

So my mood swings are horrible. They go up and down - up and down during the day. I get upset over the smallest things. I worry worry worry. All while I try not to get upset and not to worry. Get it? How this contradiction is wearing me out. 

I am so sensitive. I open facebook and I read another story about breast cancer. I cry. All the Pink Awareness crap I have unsuccessfully tried to ignore. I am sorry if that sounds cruel. But there's another contradiction there. I get so much strength from reading everybody's stories that are similar to mine. And then again, they make me so sad as well and sometimes I just want to avoid breast cancer in general. I don't know if that makes sense. Fight Club quote: "You met me at a very strange time in my life." True story.

So what else is new? I am now taking calcium and vitamin D medication because of the whole osteoporosis thing. I'm seeing my therapist next week again. Psychiatrist and Oncologist are scheduled for November. Wonderful. 

I noticed a small change inside of me. A positive one. The introvert I used to be is slowly turning into someone who thinks communication is a wonderful outlet. Even though it's within a small safe zone, it's progress. When something is bothering me, I now ask myself; am I going to worry about this for three days or just say what is on my mind? It usually comes down to it that I speak my mind. So that's a good thing and I'm hoping to develop it further.

Hair diary update! It's starting to look curly on the back. But hello I want curls on top as well. Guess it's still too short for that. 

Dementor's kiss

You can exist without your soul, you know, as long as your brain and heart are still working. But you'll have no sense of self anymore, no memory, no... anything. You'll just -- exist. As an empty shell. And your soul is gone... lost.

Autumn blanket

I was doing okay for a while. But then it comes back like a blanket. Now I just want to hide underneath there. Makes me wonder if I really am depressed.

I try. I try so hard. But every morning is a struggle. Getting up is the hardest part of the day. Taking it day by day. Step by step. I've never felt so tired before. Physical and emotional. Trying to keep it all together. Like I said I want to hide underneath my blanket and have somebody wake me up when it's February. No more Herceptin.

I seek distraction. I go grocery shopping. I take walks. I snuggle with my bunnies. I sometimes take photos. I focus on my art. I visit work. The last time I was there it didn't go so well though. There were only a few people I do not really care for. At some point I was talking in the hallway to 5 or 6 people and then this one girl showed up that, well let's just say is not a fave colleague of mine. If we used to run in each other during our break we never even said 'hello'. But now... she stood there next to me listening and asking questions. And I was thinking to myself, 'what the fuck are you doing here?!' I just felt like her interest in me wasn't sincere. I was just a story to her. An interesting break from her work or something like that.

It really is hard to get excited or to look forward to something. My art journal has become important to me. I usually draw/paint something after I talk to my psych as well. It has become an important way for me to express myself. I like talking to my psych even though it's very emotional and hard. When I come home I'm usually not a 'happy' person. It's confronting, it goes deep. But I guess it's all part of the recovery process.

I'm kinda sick and tired of October Awareness month as well. It's too confronting right now. I can't take it. I try to close my eyes for everything out there but it almost seems impossible. It's pink in your face. There's a part of me that wants to read everything and I feel that I have to know everything about my disease. But then again, a big part of me wants to block it. Because it's too painful.

There was one thing that really spoke out to me though. The Dutch website for young women with breast cancer asked people younger than 35 to write a one time blog about what it is like to be diagnosed at such young age. So I wrote my story down in 800 words and it was published on their website this week. Writing my story down in my mother tongue was very confronting for me. The story and how it all pretty much began, kept going through my head for a couple of days. But I'm proud of it anyway. I got some really great responses and people could identify to it.

Because my bunnies are one of the few things that still make me smile here are some cute fluffy pictures I took for World Animal day.

Not a pink ribbon

Sweet-jesus-on-a-cracker tomorrow will be October. Last year I wrote a long Breast Cancer Awareness month plea. I’m going to do it again this year. Last year I was the newbie on the block, this year is different… Because I can officially say: been there, done that.

The reason I’m writing this piece is because it’s something I feel very strong about and I want other people to become more aware of what is really going on.

So what is wrong with the pink ribbon? It has become a marketing tool. We are supposed to feel good about buying pink stuff with pink ribbons on it. But in other words these products mean major profits and advertising for a corporation or organization. The sad part is that sometimes not even one dollar/euro or even a penny will go to breast cancer research. So when you’ll see that pink scarf designed by a famous star, or lip gloss, bracelets and pink shoes you normally would not buy; PLEASE READ THE LABEL. Rethink pink. I’m telling you right now you don’t even have to race for the cure. Just simply write your favourite charity a check. It’s that easy.

I’ve always felt ashamed of the fact this lasts an entire month. Because there are so many other diseases that do not even ‘get a day’. Why do we need an entire month of awareness? To listen to all the courageous stories? Cancer doesn’t care if you’re courageous. The pink ribbons and balloons do not speak of those with metastatic breast cancer. Because this would not be good for the fundraising campaigns.

That pretty little ribbon. Oh such a pretty feminine colour. Well let me tell you it has nothing, absolutely NOTHING to do with breast cancer. Because cancer will haunt you for the rest of your life. It will change your future. Cancer blows up in your face. It punches you in the stomach with fear and panic. Cancer takes your hair, eyebrows and eyelashes. It takes and takes… and then some more. Cancer makes you feel empty, like you’re stuck in a black hole. It isolates you from the rest of the world. You will get test after test, you will be shoved into crazy loud machines and waiting for results seems to take forever. You will be poked at with needles, IV’s with hardcore cocktails, and the side effects are always horrible. Cancer takes away your confidence, and eventually your positivity. BUT NEVER YOUR HOPE.

It’s time to get the knots out of the ribbon.

Up

I talked to my psych again. She wanted me to tell about the person I was before I got cancer. Which was hard. Because it reminded me of my old life. Little old me. The curly care free silly dreamer that turned into a neurotic sad little bird.

I told her I believe I'm not depressed, during our previous appointments, that I am just sad and anxious. But today she sort of made me think maybe I am. When I came home it was quite a shock to me. I hate labels. But I suppose it doesn't really matter whatever the fuck I'm calling it. It is what it is. I feel what I feel. I already came a long way accepting my feelings and I firmly believe positivity will not save you. I hate to break it to you but in my opinion it's true. You have to accept your negative feelings, make room for them and listen to them. Give them a voice as well so they don't become a silent panic within you.

I started an art journal which feels really good. It's mixed media, so I draw, paint, scrap book etc. etc. It feels good to have another outlet next to photography and writing. I also became a member of postcrossing. Which is a postcard exchange project that invites everyone to send and receive postcards from random places in the world. So I'm really trying to seek distraction. 

 

So accept all of your feelings but also make sure there's a spark. Things that will make you happy. I know 'happy' is a word that some days do not apply. But try. Really try to find things close to you. Think of picking up a new hobby, or blow life into an old project. Because you need that strength, that energy, to keep going and going. We can't quit. We can't give up now. Up we go. 

P.s. My hair diary is updated.  

Fall

I did the 24 hour pee test. I collected my urine for 24 hours and brought it to the lab. In October I will have another appointment with an internist where I will get the results back from the urine and the blood test. Then I'll find out if I need to take medication as a precaution for osteoporosis.

I also saw my radiologist which was just a regular check up. Everything was fine.

This week I met our company doctor for the first time. We have been having our conversations over the phone for the last year. The appointment itself went okay I suppose. He understands I have to finish my Herceptin treatment before even thinking of going back to work. Which is good. It's just that I feel uncomfortable talking to another person about everything.

I still get upset so easily. Even when my boss just asks about my appointment with the company doctor. I get suspicious and anxious. People that are asking me about living with my parents. I really find it hard to talk to people again. I'm so scared of being judged. I realize I'm just very tired and vulnerable at the moment and that every word, every sentence they speak might be too much for me right now.

If that wasn't enough I also had another echocardiogram. Passed it with a steady ejection fraction of 62%. So at least that's good news. Her-crap-tin may continue.

I have been getting lots of reactions to my hair lately. Even three compliments by complete strangers who do not know any of my cancer story. Although I can not wait for my curls to come back,  I have to admit that did feel pretty damn good.

Today on the other hand, my neighbour did not recognize me with my post chemo hair. Awkwaaaard. 

I also had a really weird sincere moment with one of my parents' neighbours. He came to check out my dad's new Vespa. I was standing outside in my pink pyjamas and my bunny slippers and he walked towards me and just hugged me and told me they were thinking a lot about me. I felt so overwhelmed by this and got teary eyed right away. It just felt so honest and sincere.

Love and hope. How important.

Beast of burden

I'm exhausted. I spent the afternoon at the hospital yesterday. Today I had to see my radiologist. In other words; another trip to my favourite place in the whole wide world.

These appointments are still hard for me. They make me feel so sad. You think you would get used to it, but really you don't. Because #1 they are confronting you with your disease. And #2 there's always something new around the corner.

I spoke with a nurse about Osteoporosis because it runs in my family. My test results from the Dexa scan weren't that upsetting but it's very likely I will develop Osteoporosis later on in life (a lot of people do). So in order for them to make a plan and keep monitoring me I had to do more blood tests. Best of all, I get to do a 24 hour urine test. Really. I have to collect all of my pee for 24 hours. Sigh. Really makes you wonder where it will end?

All these appointments and tests are such a heavy burden. It's so hard to forget and just continue your day. I can't do that. Which brings me to my psych. I talked to her again and time fly by this time. Which is a good sign I suppose. I can also officially say, I think she's a good match for me now. She understands me. My character. She gets it. 

I don't know if I mentioned this, but I currently use Lorazepam for my anxiety and she wants me to talk to a psychiatrist about different options of medications. I have very mixed feelings about using an anti-depressant but then again... if it could make my life just a little easier right now. It seems worth checking into. 

We talked about being in the now. Which is very important for me because I'm struggling so much with the Herceptin and everything else (all the bears). We also talked (I cried like a baby) about chemo. I told her about my photography and how I feel it got me through chemo. She was very curious so I gave her my card and she said she would take a look at my work. I hope we get to talk about it next time. 

She told me that photography got me through rough times. The hardest part is over. I have to find my strength back. Things that inspire me, that give me back my drive. Things that make you forget the C-word for a while. Block those thoughts (and no there's no button). I have to start the count down on the Herceptin. I have to promise myself fun stuff, I need things to look forward to. So I will be able to finish this chapter of my treatment as well.

I try

Did you know there is a direct relationship between the lack of estrogen after menopause and the development of osteoporosis? After menopause, bone resorption (breakdown) outpaces the building of new bone.

Although the results of my Dexa scan and blood works were okay. My onc gave me a call and told me he wants me to see a Osteoporosis nurse anyway. I think he wants me to be on Calcium and vitamin D supplements or something like that. He told me it's because I still have such a long road to go with the Tamoxifen and all. So it's all a precaution.

But for me it's another appointment at the hospital. Medications I have to take related to my cancer. I fucking hate it. I'm so tired. I have 4 hospital appointments scheduled in September, one at work... and this Friday it's Herceptin nummero 10/17.

Waking up in the morning is the worst. I have never been a morning person... but there are times I don't know how I'm going to cope with everything. I try. Man I try. To be positive. The stuff I tell myself... but it just doesn't always work. You're just happy to make it through another day. 

I still get so sad sometimes. About everything. But also about the lack of understanding from other people, especially when they're close to you. Words that can hurt so much. I tell myself they haven't walked in my shoes, so they don't know. They can't possibly know.

I did visit work again, which was good. It still feels weird and uncomfortable being there. But it's important for me as well. To interact with my colleagues. I get so overwhelmed though, when I'm in a room and all of a sudden six people show up and they all want to know how I'm feeling.

Of course there's lots of comments about the hair. There are days I love my hair, I love every single hair on my head. But when I look in the mirror I'm also reminded of the story and the pain behind it.

The one with the shrink

After I made the decision it was time for me to see a psychologist I had some visions of what that would be like. Yes most of them were influenced and inspired by TV and movies.

Big white offices. Interesting art. Gigantic comfortable sofas. Big tissue box on the table.

So I was a little surprised when I met my psychologist and she took me to this broom closet; big enough to fit a desk, two comfortable chairs and a small table. A boring framed beach photo. It was a little dark as well. No tissue box WTF?! But it is going to be my safe haven. The place where I can say anything, cry, scream and laugh without being judged.

That's exactly how it felt. She seemed nice, understanding, interested and at the same time she wasn't judging me. It was just our first meeting, but I didn't expect to tell her so much already. Basically we discussed what happened in my life after being diagnosed. WAY too much material to talk about when you have 50 minutes. But I think I gave her a pretty good sketch of my life right now, the girl I used to be and that I'm a little lost and sad right now.

I don't know what's gonna come from this. I don't expect miracles. But I'm hoping for some guidance, so I'll be able to finish my Herceptin. But I also think just talking to a stranger who doesn't know me at all... is a good thing. Because talking about it is so hard. Let's face it, we all have thoughts we don't share with anyone. So to be able to share them with someone without being judged must relieve some of the tension. Maybe, maybe she'll be able to help me a little bit more in the long run when I'm ready to pick up some of the pieces.We'll see how it goes.

Updated my hair diary. 

Here comes crazy

Exactly one year ago I had my surgery, a lumpectomy. I try not to think about it too much. What's the point?!

I'm here now.

A long road it was and still is. I think that is the hardest part. The part that other people will never understand. That cancer is always on my mind these days. Finding distraction is so hard. After a year of treatment I feel like I have barely any strength/energy left. I still have to do six months of Herceptin. And it's Her-crap-tin.

There's so many small things, it's too much. Little things. A normal person wouldn't even bother to give it even one thought. But after a year on this crazy roller coaster I can cry over almost anything now. The Tamoxifen I haven't started and I'm so scared about the side effects. All the Herceptin I still have to do. Telling my story. Answering questions. It's hard to say it out loud, "I'm not doing so good right now." The side effects from chemo and radiation therapy. Confrontations. My hair which of course isn't growing as fast as I want to. Losing a nail. You name it. I cry about it.  



So I have some news, I'm finally going to see a psych! I will have my first appointment on Monday. Really nervous. But then again, if you can name one thing I'm not nervous about these days I'll applaud you.

Also wanted to thank those that found my blog and emailed me. I'm sorry I haven't taken the time to respond personally but it's just so hard. Sometimes I just don't know what to say... but do know I appreciate every single email. 

Follow the peace

There's lots of pain and drama I write about. I don't focus enough on the good things (I seriously could be my own therapist).

I spontaneous went to the city by myself and bought a new record and then I decided to take my hair to the hair dresser. Yes for real. The weather has been so hot, way too hot to wear hats and I decided to dye it chestnut light brown. I already feel so much better when I look in the mirror. I'm starting to look more and more like a real person. And less like a patient. Of course I still want it to grow grow grow into a beautiful curly pixie cut. But at least this is a first step. So good stuff.

I mean after all you gotta give them something walking into a hair salon with that little hair. So I told part of my story but never crossed any borders I didn't want to. Again good stuff. Progress is progress no matter how small. 

Yesterday I went to this colleague with a big garden and she held an 'open garden'. She was so surprised to see me. Even though it was a short visit it was pretty good. These visits are hard for me and I should pat myself on the back because I did it.

I have Herceptin 9/17 coming up and well it's hard. I'm nervous. I hate it. But since this was suppose to be a positive post... I'm going to tell myself to be brave. Be brave. Be brave.

There are a billion things I'm worrying about... but right now there's not much I can do about it. So gotta let it go... Let it be. (Have you tried it? It really is a pain in the ass and oh so effing hard!)  

Being brave

I talked to my onc last Thursday. Made a list with things I wanted to talk about before I went. I spent like 45 minutes in his office. He is wonderful for taking the time like that. How important is it to have a good relationship with your doctor. Seriously. I trust this man. I sit there sobbing in his office but he's still able to make me laugh.

So we talked a lot. About everything. He convinced me I'm completely normal. He also complimented me on coming to him asking for help. So he's going to search for a psychologist for me... According to him there needs to be a certain chemistry between a patient and a pshych so he's going to try and find me a good match.

Tamoxifen also came up. But since I'm not feeling so great right now... and Tamoxifen has like a billion side effects and depression is one of them. My onc decided he wants me to see a psych first and feel better. Which is quite a relieve actually. I have enough on my plate for now. The results from the blood test showed that I haven't hit menopause yet... but it's coming close.

In the meantime I'm working very hard on the being the in now and not thinking about my next Herceptin treatment. One word: DISTRACTION. I sand and paint old furniture, I draw, make cards, send out packages, take photos, I take walks, hug the bunnies, I bought a record player... that sort of things.

Today I had my first walk outside without my hat. My hair is still really short but it's too hot for a hat right now. I think it'll look better in one or two months. Maybe I can even dye it by then and get rid off the grey hairs.

I also donated 50 of my photos for Ann Marie's Bravery Bags. She's making bags filled with goodies to lift spirits of those fighting the C - battle as well. My photos feature strong and inspiring words with sweet and pretty backgrounds. So happy to be part of this project! 

As much truth as one can bear

That is actually the title of an album by one of my favourite singers yet to be released. However it seems fitting for this post.

Life after chemo has been hard on me. With a sad face I want to pout, 'Herceptin isn't anything like they promised it would be. You liars, it reminds me way too much of chemo.'

I know I always described chemo as my black hole. The darkest, coldest, loneliest place on earth. But this weekend I think I hit rock bottom. It was freakin' hot and sweaty with lots of salty tears.

I have been feeling so sad for the last couple of months. My heart aches. I am nervous about everything. Everything. I seriously do not have any control over my nerves any more. I don't enjoy the things I used to. I'm so sad about everything that has happened to me. So scared about everything that is still coming up, the Herceptin I won't finish until January 2014. I see bears on the road everywhere. I'm done. It's been over a year and I'm done. I could not make it one step further.

So there I stood... in the middle of the room with my hands clinging to the dining table. Crying uncontrollably and screaming out loud I was going crazy. With my dad on my right side and my mum on my left side. Holding me.

I broke. 

So it's time. To reach out. I realized I can't do this all by myself any more.

So we called my oncologist and his secretary forwarded my appointment to next week. I am going to tell him how I feel and that I'm ready to see a psychologist.

Advice is like snow - the softer it falls, the longer it dwells upon, and the deeper in sinks into the mind. 

Yes. I finally made my decision and I realize that I won't be healed in a week or forgotten everything after a year. No this will be my bagage for the rest of my life. So I better make sure I give it a nice place. A little corner. Because I deserve that.

Fuck cancer

So there are a few terms in cancerland I really loathe. Today is the perfect day to explain myself and let you know why I feel this way.

Let's start with Cancerversary. Because after all today would be my one year Cancerversary. Really?! A Cancer-fucking-versary?

An anniversary is a day that celebrates a past event that occurred on the same date of the year as the initial event. 

I'm sorry but the appropriate response to a "Cancerversary", is just NOT “congratulations”. There is nothing good about having cancer. I get that some people see it as a date to celebrate life and the fact they pulled through. I don't feel like that. Maybe when I am done with treatment and step by step putting this behind me, when I will feel 'whole' again, like a person. A new me. Better, stronger and improved. Hell, maybe even carefree some days. I will celebrate that new woman's life and enjoy every single minute of it. But I do not need a stupid fucking Cancerversary for that.

The other term I'm really uncomfortable with is survivor. Just like Cancerversary it's just not something we use in my language related to cancer. Yup no concept of “cancer sur­vivor” in Dutch. Maybe that is one of the reasons why I would never call myself like that. 

Survivor is someone or something that still exists after an event that could have killed or destroyed them.

Last night I was watching Homeland (great show) and Brody said, "Don't call me a hero, I was captured and shoved in a hole and all I did was not die." And I could relate to that. Maybe I don't give myself enough credit here. Maybe it's unfair to all the pain I felt and am still feeling. But what word do we have for the people who fought just as hard and didn't make it? And why only cancer? We don’t say the same thing when someone has con­gestive heart failure.

So today I cried. Bawled my eyes out, exactly like one year ago. Only this time it's because I'm so sick and tired of everything cancer. 

"Remember how far you’ve come, not just how far you have to go. You are not where you want to be, but neither are you where you used to be. "

How are you

It's always weird when strangers confront you with your illness. I mean seriously, I know I would never do that to a person I do not know. But apparently there are people out there confident enough and see no problem with it. I was with my sister at this health store buying Weleda products. I was wearing my hat not my wig.

The lady at the counter asked me whether I used these products before. Yes yes I'm a fan. She then asked me whether or not I tried the pomegranate line. I told her I'm not familiar with those products. She then said, "I'll give you some samples, may you use lotion and oil products? I ask because I have a friend... and well I know there were products she couldn't use during treatment."

Okaaaay. Weird. I felt weird. A little uncomfortable. There were people standing in line behind me. Quickly I told her I already finished chemo and I can basically use anything. "Oh gooood", she said, "and your prognosis?" Wow. Really. "Yeah I'm fine, everything is fine!" I said.

Aw-kward.

Truth is. I'm not fine. I'm having a hard time lately. Three months since my last chemo and I have been crying for the last two weeks. It just takes me off guard sometimes. These feelings. My head becomes a dark hole. My heart weights so heavy. The pain is intense. I do not have any control over my nerves. The tears just keep coming and coming.

I think I have accepted these pretty pretty tears by now. It makes sense right?! After all the shit I've been through, I also have to go through this. I have to process what happened to me. I was worrying so much about not knowing how to pick up the pieces but I'm not even there yet. First you mourn I guess.

So yes I have been thinking about seeking help or reading a book about dealing with cancer. But again: not there yet. Today I realized I need to seek distraction in things that aren't cancer. Things that make me happy such as art, being creative, shopping, bunnies, books, TV series.

Since my hair is working hard on a serious come back I decided to dedicate a page to it. You can find it on the menu on the right or just click here. I will update this page every month.

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.

Broken wings need time to heal

Just another Monday. Two months post chemo.

I'm obsessed with hair. Or lack of it. I don't understand why some women have full heads of hair after 3/4 months post chemo and others (I'm talking about myself here) get the old bald man look with no hair on top. Okay so it's growing back, but it's scarce. This is just extremely frustrating. It makes me sad and angry and basically I hate everybody with pretty long curly hair right now. Sorry it's nothing personal.

I don't expect miracles. I just want that sexy pixie haircut and I promise I'll shut up. So hair... please grow grow grow!

Patience is just not my thing right now.

The next two weeks are going to be tough for me. Wednesday I have another echo coming up and if everything is okay I will have Herceptin 6/17 Friday. Not really looking forward to it, because last time I had quite a few side effects. Really have to keep my fingers crossed this time will be better.

Then Monday it's coming. My first mammogram after being diagnosed. Of course my breast knows this and I have been feeling all sorts of weird stuff lately. I am really nervous and oh so scared. So scared. Lots of scenarios went through my head. The bad ones. Then on top of everything I will also get a Dexa scan and a blood test. I will get the results the next day. I am thankful for getting these tests and my aches and pains will be taken seriously because I once had cancer. But oh boy I just know these things will never get easy. Always in the back of your mind... there's that little voice.

So I still cry my eyes out from time to time. I actually had some bad news about my job shoved into my face as well. As if dealing with breast cancer isn't enough. But there is nothing I can do about it right now. So I have decided not to worry about it.

So obviously there are ways to stir your soul. They don't always work, but sometimes they do. So I try. I keep trying. Sometimes this results in creative projects like keeping a little notebook with positive quotes. A colleague visiting with his son. Sending packages and being in contact with my breast friends. Unexpected gifts from sweet people. Or a bike ride all by myself for the first time after chemo. Maybe just feeling some sun beams on my pale teary-eyed face. You keep trying, if not today then tomorrow.



Most of you know that I took photos during chemotherapy. And it was one of the few things that kept me going. It resulted in something I now call the Chemo Chronicles. You can view the entire series on my portfolio website here. Or click the link in the menu on the right.

Trastuzumab

So it's pretty obvious by now that after chemo there was no switch that magically flipped back and turned life back to normal. If only things would work like that...

Herceptin treatment continues. At the same floor, with the same nurses. Which basically means major chemo flashback! This whole thing really upsets me. It brings back so many bad memories. I got to take pills for nausea this time. I have to admit I didn't want to take any more pills after chemo. Enough poison went through my body. But the nurse told me to choose between being nausea for the rest of the year or pop a pill every now and then. So I gave in and took the pills.

I am actually a bit disappointed by the whole Her-'crap'-tin. I think it was sort of described as a walk in the park after chemo. But during the last round I got diarrhoea the first day and I was very tired for the next three days. I had to take naps during the afternoon again. First you try to resist because again: major chemo flashback! But you better just give in and I have to admit I really do feel better after three days. But it's just not what I was expecting. Of course the side effects are mild compared to chemo and I know I have to accept them and get used to it. Make this part of my routine. Because I'll be getting Herceptin for the rest of the year (and then some more).

The Herceptin flows through the IV in 30 minutes. I wonder if I have less side effects if they like for example set it to an hour. I really have to ask next time. The nurses have been sweet and understanding, but also strict. I appreciate their advice but sometimes I also believe I have to follow my own path. I still haven't made up my mind about whether or not I want to go into therapy or something like that. But my last chemo was only six weeks ago, (yes that short!). So I have to give it time and I can reach out for help any time I want to. For now I just want peace & balance.

Oh and a little patience would be nice. With people. With hair growth. People asking about hair growth. That sort of thing.

Kids say the darndest things

I'm still struggling and trying. Some days are better than others.

Just an anecdote for today.

Winter is over. Chemo is over. So I figured I would wear my wig more often but I still prefer my comfy hats. Of course now that it's spring... you start to notice the glances. I'm not really bothered by it, although if they do stare too long I have the tendency to stare back (=not the sweet face).

I was at a garden furniture store together with my parents when a girl dressed in pink and silver glitter came up to me. She must have been 10-12 or so. She told me she liked my hat. I smiled and thanked her. When I wanted to turn around, she asked me why I was wearing a hat and whether I was cold or not.

My chemo brain was a little shocked. What was I gonna say? Another couple was listening to our conversation. I was standing in the middle of a store. Am I really going to have 'this' conversation with a kid.

I decided to be honest and told her I have no hair underneath it. She nodded, as if she already knew. Then she popped the question which surprised me the most, "So you're doing that chemo thing?" Happy I didn't have to explain anything to her I said yes.

"So that means you have cancer right? What kind of cancer do you have?"

Right. I guess she got it right, so why lie about it. My turn. I asked her why she wanted to know all these things. She told me she brought food on behalf of the church to this woman with breast cancer. She started a somewhat confusing story about this woman. I think the whole thing definitely left an impression on her and she tried to tell me in her own words the things that stuck with her. She kept saying the woman would start chemo very soon and that she would get sick.

"Chemo is like little beams?"

Oh boy I had to think quickly here. I explained her chemo will go through an IV which they put in your hand and that you're usually sick for a week and then you will start to feel better again. "Right and then you'll lose your hair!" Yes exactly. I told her I shaved my head after two weeks. She told me that sometimes when they unraveled her dreadlocks she was afraid her hair would fall out as well. We actually talked some more about my hat collection and my wig.

So yes I was caught off guard in the middle of that store. But there's just something about the innocence of a child so pure, open and trusting... with no evil intention. 

Tenderheart

My first Herceptin definitely brought back some of those horrible chemo memories. I felt nauseated for a few days. Very tired as well, but I guess that's still from chemo. So Herceptin, like my nurse said, ain't no rose water... but chemo is like a billion times worse.

I still did a lot of crying the past week. Now that my little safe chemo circle fell down all of a sudden it's hard to interact and meet again with people. My aunt and uncle, my neighbour, people your family knows, random strangers. I'm still really struggling with that. But I'm trying.

Today I had to go to the hospital for my echocardiogram and this girl my age walked by and turned her head. I can't help myself but wonder what she was thinking. Did I scare her? Did she think I was dying, or perhaps did she find me to look pretty good and totally in fashion despite my cancer head/hat.

It's me versus the world. I don't know where I stand exactly yet, but I do know this whole thing has changed me. It will change me. People look at me differently. I wrote about this earlier that people can be really ignorant. If you don't know what to say, please say so. Especially right now that I'm having such a hard time... it's like living the nightmare over and over again describing my journey to other people. 

I do want to share one story with you guys. My last Neulasta injection was given by a woman because mister Neulasta was sick at the time. She was just there for the injection. She sat beside me and started asking me all these questions. What kind of cancer I had, whether I still had my breast or not, how chemo was going. She asked if my hair was already growing back and almost ripped my hat off my head! I swear! To top it off, she asked me about my fertility! Yes! I could just kill here right there, right then. People can be so RUDE! I really didn't handle it well and I should have shut her up at the first question. But I'm learning. I'm learning because of you ignorant noisy b****.

On to the good news.. My ejection fraction was 62% this time. So I get to continue the Herceptin for now. To a steady heart muscle!

P.S. Yes this title refers to the Care Bears. Yes I bought three on Ebay! 

The sound of silence

I'm struggling.

It's been almost three weeks since my last chemo. I will have Herceptin #4/17 coming up this Friday.

I talked to a colleague on the phone this week and it really hit me that people will never understand what I went through. I know I've always realized this, but talking to her all of a sudden made it so clear and obvious. She is the sweetest person, but was completely clueless.

I think it made me feel so isolated and alienated from everybody else. During chemo I only had my family around me, a rare visitor every once in a while. But it was just my family who saw me at my worst. So how do you connect with people after going through something like this? I'm nervous for all those 'first time' conversations.

Life is so different for me now. I need to find balance and structure. A way to deal with everything that has happened. I am not the same person any more. I know that must be weird for other people. I understand it's hard talking to a 'sick' person as well. But I feel so alone in many ways. Cancer is like sitting on a freakin' deserted island. This is my worst nightmare and it goes in a bag pack that I have to carry with me for the rest of my life.

The only people who really get it are other people who have had or have cancer. It's good to have 'breast' friends.

So yeah it is hard for me to talk about everything that has happened. I think I'm really learning and experiencing what to tell to whom. This morning I read a quote on the Pinterest board as if it were meant to be:   

"Sometimes it’s better to keep silent than to tell others what you feel because it will only hurt you when you know they can hear you but they can’t understand."

Skeleton leaves

No words, no nothing

So my last chemo is a fact. I actually set up a post two days ago with all these numbers and facts. And then deleted it. I'm not really sure what to think or how I feel. That would explain my crazy internet shopping. I mean crazy over the top and not making sense kind of shopping. The last few weeks I've ordered new clothes, slippers, shoes, stack rings, bunny stationery and some other stuff I can't even remember. Just like that, out of the blue. Anything to keep me busy. It's a good thing I'm not seeing a therapist (yet).

I've also tried different things to distract me, like reading, meditation and scrap booking. But nothing seems to work. So chemo might be over but it doesn't feel like that at all. I still sit here on the couch, not feeling so great. No hair on my head. For the first time in six months I really really miss my hair. I also went outside for the first time again today. It was like a 5 minute walk and I felt like a 80 year old. I'm mostly sad and confused because of all the stuff that has happened. I have been crying a lot. I know it isn't over.

The results from the MUGA scan were pretty much the same as the echo. Which means we'll try the Herceptin again, followed by another echo. All I can hope for is that my ejection fraction will stay the same or go up a few percentages now that I'm done with chemo.

I know I will start to feel better and that I need to give it time (yes even or maybe especially the hair grow). The past six months were... well I'm not even going to try to describe them. Words won't do all the pain, suffering and fear any justice.

New colours

Oh these long haired hippie bunnies of mine are very high maintenance. But I love them. It's kind of sweet and funny taking care of their fur while I have no hair at all myself.

Now I'm exhausted. But I wanted to come here and write because after all, tomorrow is my last chemo. I still can't believe it actually. Number 8, finally.

November 9th 2012 I started with the AC treatment 4x every three weeks. February 1st 2013 I started my first Taxol/Herceptin, 4x every three weeks and I was suppose to finish on April 5th 2013.

As you could read in my previous posts, unfortunately after three treatments my ejection fraction dropped down to 53%. I did a MUGA scan last Tuesday and will have the results back next week.



So I will be finishing chemo, Taxol... but no Herceptin for me until... well until I talk to my oncologist next week.

So this is not exactly the way I was expecting to finish chemo. April 5th is a date that has been in my head since November. It's hard when things don't go as planned. I'm having a hard time letting go. I don't know what I'll do if they tell me I can't do the Herceptin at all. I really hope we're going to give it a try and that they keep monitoring me closely.

But for now let's focus on finishing that chemo chapter. It's scary. I know the story will continue. But I also hope there will be some light at the end of this chemo drug hole tunnel. It's very emotional. Because I've been through so much. Now comes the time I'm probably going to realize it.

May number 8, the last one, be gentle with me.

Being a wild bird

So looking back at my previous post it would be fair to say I had a few things on my mind that were bothering me.

So yesterday when I got out of bed I figured hey this is my life we're talking about. My heart. Let's take back control. And it felt really really good.

I decided to email my oncologist instead of waiting for him to call. That same afternoon he replied. Basically he told me he wants do a MUGA scan and until the results come back no Herceptin for me.

A MUGA scan creates video images of the ventricles (lower chambers of the heart that hold blood) to check whether they are pumping blood properly. It shows any abnormalities in the size of the ventricles and in the movement of the blood through the heart. Today the hospital called me and we scheduled the scan for next week Tuesday.

So there you have it. I feel a little more at ease and also very determined on finishing these Herceptin treatments. Which is kinda crazy of course... Because at first I was so not looking forward to them. But now I realize this treatment was prescribed for a reason and that is why it is so god damn important I finish every single one of them.

Of course if the results from the MUGA scan are seriously fucked up and the risk is too high... well then it becomes a different story. You see I don't want to die of a heart attack. That would be a bit ironic.

iHeart

The question is... how much more can a person handle?

So I've done three out of four Taxol/Herceptin treatments. I need to do one more. Then the Herceptin will continue for the rest of the year. Although Herceptin is no chemotherapy. This drug has some serious side effects I found out today.

Okay I actually knew all the details before starting treatment. But going in for my first echocardiogram and ECG today, I was totally convinced everything would be fine.

Herceptin treatment can result in heart problems, including those without symptoms such as reduced heart function. It was a weird appointment. Not sure what to think of my cardiologist. Apparently my heart muscle is only doing its job for 53% (it should be between 50-70%). So that's really on the low side and with all the treatment I have left this is a serious issue.

I don't understand why they didn't do an echocardiogram before I started chemo (they assume you're young and healthy and perhaps it costs too much money?). Because now I have nothing to compare my current numbers with. Are these numbers really that low because of three times Herceptin? Or do my first four AC chemo's have something to do with it as well?

My cardiologist is going to contact my oncologist and then we'll have to discuss what is going to happen next. He also told me he wants another echo in a month (instead of every three months).

So I went home crying. Upset. Overwhelmed. Totally unexpected. But I'm also scared to shit. This is my heart we're talking about. My tumor is gone so I need it. Again there is something going on inside my body and I didn't even know it. Last but not least I'm pissed. I'm so god damn angry. Because I don't understand why it keeps raining over here.

I'll have some Lorazepam now, yes thank you.

Lucid dreams

Number se7en

It started with two days of crying and sobbing. I still don't really know if that's the Dexamethason messing with me or if these feelings are really coming from inside. I do believe the chemo drugs are seriously fucking with me. This stuff is hardcore. Since chemo travels to each cell in the body via the bloodstream, it obviously must have an affect on your thinking. It seems I pulled through pretty well this time. Just keeping my fingers crossed for next week when the white blood cells will drop. The weather is so cold over here. No infections. No nothing please. 

At the end of the week I all of sudden realized I have only one chemo left and started reading about Herceptin and Hormonal therapy. So basically I ended the week like I started it, with lots of crying and sobbing. A few hours later I decided to put on the big girl panties, the wig and some make-up. I went out for some groceries. Which sounds lame, but it was exactly what I needed.

So yeah I have to admit for a while I wasn't living in the now any more. I have one chemo left. One. I have some seriously mixed feelings about this. I know, of course I'm thrilled it's over. Chemo was one of the hardest things I ever had to go through in my life. I've never felt so sad and alone. I've never been to darker corners in my life before. But now what? Will my body be okay. Will it back me up when I need it the most. Can I depend on it again? I guess we have to trust each other again, and that  takes time.

My family keeps reminding me of all the fun stuff I get to do once chemo is over. How much better I will feel. This drama queen started yelling she didn't want hear it! I'm not ready. I can't see it yet. I don't feel it. I have so many worries left. Such a long path lies still ahead of me. The Herceptin for the rest of the year and I will probably soon start the Hormonal therapy for five years. Which is not just a pill, but one with many consequences. So many things to worry about. I will get my mammogram and dexa scan in June with a follow-up appointment. My first echocardiogram this week. How can a person not worry about that?!

My life will never ever be the same. Not when I finish chemo. Never.

But.

It's spring. Soon it will be summer. My favourite time of the year. Things will get better. I'll find my way.. even if it's through a wilderness of despair. 

Here comes nervous Nellie

It's chemo week again. Friday I have number 7 in front of me. Which means: distraction! I have been working on creative projects, updated my photography website and took lots of photos. I went shopping today. None of my jeans fit me any more because of the weight loss.

I also sort of wrote a BC guide. You can find it on the menu on the right or just click here. No medical advice, because every case is different. I see it more like a guide with products and other helpful tips that helped me through surgery and treatment. I hope it will be helpful for those just stepping into this crazy roller coaster.  

Distraction, I actually overdid it a bit I think. The thing is, I am still wondering when I'm going to break down. When am I going to lose control?! What a mindfuck!

I worry about so many things it's crazy. A peek inside my head? What are my neighbours going to say when they see me. When do my colleagues expect me back at work. Will everybody assume I'm okay once I have hair again. How do I maintain a healthy lifestyle without obsessing over it. How will I get back into shape. Will I ever get through a day without thinking about cancer. What's going to happen with all the scans and mammograms I still have to do. Will I ever be truly happy and carefree again. That worst-case-scenario, what if. Will I ever be able to talk about fertility and the invisible scars. (...)

Well you get the point.

I do realize these thoughts are actually pretty normal, going through something like this. But it's hard to keep things under control. That is why my friend Ashley and I set two goals for this week. I decided to take pictures to help me practise them.

1. Being in the now: most of us are actually elsewhere, rather than in the here and now. We can't control the future. We can't change the past. Being present is almost like meditation. There’s a concept called Flow. Basically it's about losing yourself in whatever you’re doing — reaching that magical zone where you forget about the outside world and are completely doing what you’re doing, whether that’s writing, drawing, yoga, running, taking pictures or whatever. It’s a wonderfully productive zone to be in, and a state that also makes you happier. Productive and happier at the same time. Hard to beat that.

2. Let go: worry is a mindset, a habit. Energy flows where you focus your attention. Understand that we can choose to focus on positive rather than negative thoughts. The best way find relief from constant worrying is to learn to let go. Worrying does not bring you any closer to solving problems. In fact, it only makes it more difficult to find clarity in your head.

Get your hat leave your worries

Another ER visit

My last post was published at 7:28 p.m. (Central European Time) and one hour later I found myself once again in the ER.

Seriously. After my appointment with my oncologist I had enough excitement for a day... but no I spent 4 entire hours at the ER before being dismissed.

I had noticed this burning feeling while peeing the last couple of days but didn't give it much thought. Even my oncologist mentioned it that morning, it's just one of the many side effects of chemo. Completely normal!

Then when I took a shower early in the evening I all of a sudden felt the need to urinate even right after I emptied my bladder (no not in the shower). The pressure and cramping became worse and worse so I called the Oncology department and they told me to come right away and bring a pyjama just in case I had to stay.

Then the torture started. I am absolutely not afraid of needles but I really felt like a pin cushion this time. The first blood tests were incorrect so they needed more blood. My veins didn't agree and well I'm poked all over. They even tried my finger and it took forever to fill a tube.

Then I had to pee in a pot. Three times! Three freakin' times! But I delivered!

Finally after all the test results came back and it was determined I had a bladder infection I got antibiotics in my IV. When the doctor told me I could go home I did a little happy dance and a big cheer. Still have to take crap tasting antibiotics for 7 days though. Ugh.

Never ending

Today I saw my oncologist. If you follow my blog, well then you know how I usually feel after these appointments. I don't know what to write. How to write. I feel like I'm about to explode with all these different kind of emotions. I'm extremely sad, desperate, angry, worried, upset, hurt, confused... Crying, screaming, sobbing, barely breathing.

It was another tough day for sure.

I like my oncologist but I am so sick of this cancer world. Next time we're going to talk about the hormone blocking therapy and when it would be best to start. I never thought hormone blocking therapy could start next to the Herceptin and I seriously question if this is a good idea. But I guess he wants to discuss all options.

Now sit tight. I will have my first echocardiogram this month and they will continue every three months. In June I have to do a new mammogram and echo. Some detailed blood tests and my first Dexa scan. Which is a measuring of bone mineral density. Then I'll have appointments with my surgeon and radiologist. Terrific! Fan-freakin'-tastic!

Once again you realize it's a never ending story. 

Breathing Flowers

Two left

It's officially March! Can you believe it?! I have one more chemo in March - and one more chemo in April.

So how did the last one go? Well it was definitely not as bad as the previous one. So no puking in the parking garage or sleepovers at the hospital. Good.

It was no walk in the park either. I was so happy though, that I finally had a private room this time. It really helped me control my nerves. My parents were both with me. We were even finished an hour earlier than I expected.

The next day mister Neulasta dropped by (yes I have my personal hot 'shot' now) and gave me my first injection. He was actually surprised I made it so far without any of these miracle injections.

I experienced a full week of extreme fatigue, some uncontrollable sobbing, bloody noses, muscle and bone pain. My eyelashes and eyebrows are pretty much leaving me. I still have those damn mouth sores. But it looks like with a little extra Neulasta support, my natural defences pulled through and we made it. 



It feels really weird knowing I have two chemo's left. I will be so happy and relieved. I can't wait for my hair to grow back. Oh man and home sweet home. I want to feel great and healthy. I am longing for sunshine. I want to go out and be happy again.

But I'm also very very scared. How am I going to cope with everything, things can never go back to normal. I will never be the same person. Without chemo will my body be okay? The thought of going back to work makes me nausea.

I know I just have to take it easy. After all I still have to do Herceptin every three weeks for the rest of the year. Of course there will be lots and lots of appointments scheduled at the hospital. It's not like they're leaving me to my own devices.

Lots of hand-holding before I'm ready to step back into the world. I just have to take my time. Sometimes you take three steps forward, one step back, no step the next day, and then a side step before making forward progress again. I will probably find back pieces of my old self. I just have to use them and paint (or shoot) a new picture with new colours.

Chemo brain

Through the veins

Yesterday I talked to my oncologist on the phone. We talked about me staying at the hospital for six days and what other options we have to prevent such thing. He decided we're going to try a Neulasta injection with my next chemo treatment.

This injection will be given the day after chemo and stimulates the bone marrow and promotes the growth of white blood cells. These white blood cells help your body fight against infection. Most common side effects: bone pain. 

So yeah that doesn't exactly sounds like a treat. I already read way too many stories about it on the internet. I'm just so scared. All the poison going through my body. What's going to happen this time? Will my body cope? Will I be in a lot of pain? There's no way to predict. You just have to accept it, deal with it, hope for the best and let it run through your veins...

Syringe me with a little colour

Hospital horror

Two weeks ago I had my first Taxol/Herceptin treatment. It already seems so long ago because a lot has happened. But this is the story. Uncensored.

I was incredibly nervous. By nervous I mean having to puke in the hospital's parking garage. By nervous I mean having to puke in the car six hours later. It was the first time I had to stay that long and I hated every single bit of it. The smell of chemo department is just... obnoxious. It's just so disgusting, even now.. when I think about it I feel sick to my stomach.

The first few days I was very tired. I slept a lot. Then I started to have the famous flu-like side effects. By the time it was Wednesday I had a very sore throat, nose bleeds and muscle pain. On Friday it got so bad I could barely swallow and I also had a fever. We called my doctor who dropped by that afternoon and told me to go to the ER for some blood tests.

I was under the assumption I would leave there with some antibiotics but was told right away I would be admitted to the hospital because of my fever. They also did a picture of my lungs. When the blood tests came back it was obvious my white blood cells were way too low and I had a throat infection. I was given antibiotics through an IV right away.

When starting chemo you know it isn't going to be easy. You know you're going to get sick. But at least you're home. In your own bed. I'm not much of a hospital person. I already knew this. But it was very hard for me to accept that I had to stay there. So I cried my eyes out. I felt so out of control.

The first two days I had the room all to myself - thank god. On Monday I got a roomie who barely spoke any Dutch. I'm all for privacy in hospitals. And big screen TV's. I really had a hard time trying to keep calm but as days passed I more and more started to adapt to the situation. Being admitted to the hospital once was my worst nightmare when this whole breast cancer story started. So all and all considering I didn't do so bad.

The not knowing part drives me crazy though. Not knowing when you get to go home. Not knowing when you're having lunch, when it's pill taking time, when the doctor will see you... you have to depend on so many other people it's frustrating! A couple of the nurses were really sweet for me though. One even brought me ice cream for my throat.    

At first they told me I would probably get antibiotics for like two days through an IV and then I would change to pills. However, eventually they kept me on the IV for 6 days. At some point my veins got all blue and hard and they had to give me another one. I had to do a blood test every other day. I still feel and look like a pincushion!

After a few days I my throat started to feel better and my fever went down as well. I got to enjoy the lovely hospital food. Insert sarcasm here. 

After six days, on my mother's birthday (Valentines day) I finally got to go home. I still have to take antibiotics for three more days. But I'm home. At last. Reunited with my furry bunnies.

The fact I have three more of these treatments scheduled make me feel very nervous. My oncologist will give me a call Monday or Tuesday and I definitely have a some questions for him and will tell him about my worries. For now I'm hoping to rest and gain back some of my strength because believe it or not, treatment is scheduled next Friday. Time flies... when you're busy being sick.

Robo girl

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

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 "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).



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?!