This is her fight song

I have been back at work for about three months now. I'm currently working three mornings at the office and I'm planning on making some extra hours at home. It still is a struggle. There are times when I'm really happy to be back. To be a part of 'something'. Complain about the weather or the computers. We talk about pets, silly things.. office humor. But I'm struggling with the damage cancer left and the current side effects. The fatigue, the joint pain and the mood swings. I try not to let it rule my world. But I have to make it a part of my daily routine some how. Which is hard.

Yeah it IS hard. Sorry, but I'm not sorry for saying that out loud. My company doctor basically called me a 'pessimist' the other day. I don't really think he understands the power this disease can have over you. Our worlds are far appart.  And that's okay. But don't you sit there in your fucking chair and judge me. Because I've seen more dark places you can ever imagine. However we agreed to keep my working hours the same for the rest of the year. I need to find some sort of rhythm, balance, peace. JOY!

Today I saw my oncologist. He told me that because of recent research it is now proven I would have benefits (like +2%) from using the Tamoxifen for 10 years instead of 5. They're not quite sure about the Zoladex yet though. So it looks like me and 'menopause' are going to be together for... a long time. Tamoxifen is the first hormonal therapy medicine choice for postmenopausal women so of course this puts me at ease. But it's also quite a lot to take in. I think I'm going to focus on the first 5 years (it will be 2 in February 2016) and will deal with the rest when I have to.

I will leave you some links that I actually found pretty interesting and perhaps you will feel the same!

• What’s it like to go through cancer treatment? You definitely must read this!
• This designer was diagnosed with Stage 3 Hodgkin’s lymphoma at age 24, going through nine months of chemo and radiation before going into remission. She designed the cards she wishes she's received from friends and family. 
• "Give yourself time to be sad, frustrated, and angry. Give yourself time to heal, accept, and to grow. Time doesn’t erase anything, but it can provide you with enough space to be able to breathe again. And then one day you wake up and your heart has a little bit of sunshine in it. And day by day people offer you pieces of their hearts to help remake your own. Allow yourself to be where you are at, to feel what you are feeling, and to experience everything that means. And during this process, look and listen for that glimmer of hope. It is there, I promise. And it is waiting for you to see it. Because one of the most beautiful things about humans is their capacity to heal, grow, and survive. Facing it. That is how you get through." - Jessica Jensen
• If you want to spread some kindness but don't know where to begin, join the Card Bombers Anonymous and become a Kindness Ninja! 
•  You MUST watch this if you need a little something to lift your spirit. Will make you cry, that's a promise! 

Like a rolling stone

A new year. New feels. New breathe. New chances. Same dreams, fresh starts. Out of my head and into the moment.

But then this happened and I think I sort of had a breakdown two weeks ago. Lets just say it involved a bathroom floor and lots of crying.

I finally realized I needed to cry out of for help again. Because I was taking 45 mg anti-depressants... but really what's the point when you're on the floor of a bathroom? So I called my psychiatrist and long story short; we're quitting the anti-depressants (this week 30 mg, next week 15 mg) and then we will meet again to talk about my other options. Let's face is, with the Tamoxifen/Zoladex there aren't that many options left. But I'm sure there's something I can try. Which means I can start all over again. New meds, new side effects, worrying if this is IT.

Despair. Frustrating.

So then I had a couple of pretty good days. I went to the hairdresser, got my first serious hair trim (well at least it felt like that) and I also let it dye. Which means new profile pic! So it looks pretty good, curly... and like the old Ciel. Except.. I am not.

But hey then I spent some time in my house. Have been restyling a bit, cleaning, etc. and it felt really good! So good I could dance (and perhaps I even did a little dance because no one was watching me).

It still drives me nuts that I can go from feeling pretty good at one point... and hit rock bottom like two minutes later. I know this is called recovery and I know partly it's the Tamoxifen/Zoladex. But still... it's pretty fucked up. It makes me feel like crap. But I know I have to work through all these feelings and emotions and when I'm ready I will release the ones that no longer serve me. Love, light, patience and kindness are the answer.

Perhaps a little mindfulness will help? I'm looking into this... if I go through with it more on that some other time.

So depression, what it feels like? Like I am drowning and everybody else around me is still breathing. Sometimes it feels like I carry this big rock around my neck, and it's so heavy. I get upset over EVERYTHING. Which is hard to understand for other people. My heart, my soul, they are in pain. Some serious pain. So I have been looking into a more spiritual way of healing.

Creating a sacred space. Be gentle with myself (really tough). Crystals and cleansing. Meditation. Becoming closer to nature. Chakra balancing. A photo a day challenge on Instagram. Today I had lunch by myself and treated myself to a big bowl of veggies and fresh mint tea. Well whatever keeps me going... It is a fascinating magical world after all.

P.S. Shut the fuck up about Blue Monday.

Hello May

Hello May. I want you to be a good month. I want sunshine and baby ducklings! Bunny hugs and bare feet! I want ice cream and well most important... I want to feel good.

Being sick for two weeks brought back a lot of the bad stuff. Almost as if they waited till I was down and then started kicking me one last time! Lots of chemo memories. Other stuff. I just want to forget it. Move on.

I had another Zoladex injection and fuck, I hate it so much. This one has got to keep me going for three months though. But seriously, I have been through a lot. Pin cushion that's me. But this Zoladex injection, even with local anaesthesia it is one tough son of a bitch. Egh!

I met with a colleague yesterday. We talked outside on a bench at the river side. It was nice. I still get upset so easily and I am tired so quickly. Sometimes this blue blanket of sadness just comes over me in the middle of the day. It could be something a stranger says, or something I read, something on TV. Last week I woke up and I was all of a sudden sitting in a hospital bed, bald. The image was so vivid. Almost real.

But I don't know, I just want to enjoy life again. Even if it is just the small things. I also have some exciting news coming up (photography-wise) and that is why I want May to be a good month. Are you with me?

Stress

Well I haven't really learned to draw the right lines yet. Again I am exhausted. When I'm tired I also turn into a cry baby. I start to go over everything and always find a billion things to worry about.

Stress has been something that pops up a lot lately. I freak out over EVERYTHING. Silly little things, they become huge inside my head and it just drives me nuts.

For example I decided the monthly Zoladex injections were too much of a burden and so my next one will be for three months. I'm already nervous about it. Because I've had barely any side effects so far and what if that changes when I get an injection for three months? What if, what if. I have to try it and just really really hope I'll be okay. I have to be okay. I couldn't do it, these injections 12 x a year... each month, it would be way too confronting. So please please let me be okay with the injections for three months, because that means I would only have to see my home doctor 4 times a year! What a big difference.

I am also feeling a bit under the weather for the first time. I have a sore throat and expect to get a cold. It goes around. But I totally freaked out about it because last time I had a sore throat I was admitted to the hospital for six days. I don't want to feel sick. I am sooo scared of actually feeling sick. Even though it is just a cold and it is nothing like chemo.... getting sick scares me so much right now.

I also have a strong trigger that goes off when I open my closet. So many clothes, so many memories. I remember exactly which hat I wore with certain outfits. I remember which sweater I wore when trying out medication. I remember every fucking little detail. So I filled two bags with clothes and gave them away. But at the same time it made me cry because I wanted to burn everything and I realized it wouldn't change a god damn thing.

So let's try to end this with some positive news. I made 25 new designs of photo cards that will go into Ann Marie's Bravery bags for chemo patients. I already had 25 designs so I now have 50 different versions and I hope they will spread a little faith and hope.

I also have been talking with an online postcard shop who are interested in bringing out a postcard set of six of my photos. Now come on that is exciting news! 

Lines

Last week I crossed my own lines. I think it took me about three days to fill up that battery again.

I saw my psych which always has a huge impact on me. I talked and cried about everything. She said that during treatment my emotions were on hold and that they are coming out now. It's not just sadness or depression, but anger and frustration as well. The thing is by not accepting... what it is... I am physically and mentally racking myself.

So then I had another visit on Wednesday at the hospital and my blood results were fine. But going there is always upsetting for me. Because everything is cancer related.

The other days I tried to pick up some pieces by going out for a while by myself. And I also visited work. I hung out with two colleagues. We sat outside on the terrace, cup of tea... it was nice. Explaining my feelings to them and where I'm at right now was tough. Of course I only start to notice this when I come home. When it's too late. But I have to learn from these things I suppose. Draw some new lines. Because it was bad.

When it's bad... I get upset about everything. The big bad monster comes out and tells me about everything that could go wrong. I feel broken. I see happy family facebook stories, I read about beautiful young people dying from cancer. It is just all so fucking wrong. People talking about their vacation and all I can think about is how to make it through another day. How I worry about the Tamoxifen and the Zoladex. Once I'm in that state of mind... there is not much I can do. Let it be. Throw it all out. Break.

After a few days I return to a more... well what should I call it? I don't have a word for it. I am a work in progress. But I realize it is wrong to compare my life to others. It isn't going to do me any good.

This is my 100th post! Milestone? Lets try to fill our hearts with what is important & be done with the rest.

Ode to an onc

Holy macaroni. I am freaking out over something that might seem a little strange.

But once you have been diagnosed with a horrible disease your doctor is your best friend. If you do not totally trust this person than go find another one.

My oncologist takes his time. Which means you usually have to wait 30-45 minutes in the waiting room. No matter how sick, anxious or horrible I felt, he was there... making sense of everything. He carefully explained every question I googled. He took the time when I had long lists with crazy questions. He emailed me back when I forwarded him research material I found on silly websites. He called me back, even if it was around dinner time. Sometimes he even made me laugh!  

When I first came to see him with a bald head he told me I looked good and he meant it, because that's the type of guy he is. We talked about other things as well such as his family, my photography and art. I even showed him some of my photography and he loved it and thought I was well.. special. 

Yesterday I found out he's leaving for another job. An important job... But he won't be my onc anymore. I wanted to cry and hug him, but I didn't.

He gave me a compliment, because things weren't easy for me during such a long period of treatment. But he told me I am definitely a fighter. He also said it was a bit strange to say because he is a doctor and I am his patient, but he was proud of me. He told me he was happy that I am taking the Tamoxifen and the Zoladex. The last step of our treatment plan and that I should now mentally work things out. That I should focus on that.

He also said it was hard for him turning over his patients to another doctor. He already found his replacement and he said it was a long process of finding the right type of person. But he thought that I would get along with the newbie. Hopefully my next appointment won't be for a while though.

So we shook hands and I thanked him for everything and he knew I meant it.

Who is in control

My psych told me to keep writing so here I am. Behind the keyboard.

It's been two weeks since I started my Tamoxifen/Zoladex trial. So far I have only experienced mood swings. Although I have to admit I've had those before I started this trial. So... I am not really sure where this is going. I tried to ignore all of this stuff and not think about it. But then I read a piece on fbook (darn internet) and I got all upset afterwards. Because most reactions weren't positive. All messages from women with horrible side effects. Even one that wrote her side effects started after three months. So now I'm not sure what to think of this anymore. My psych told me to integrate it with my life. Make it a part of my new life. I guess I just keep on going and when I reach a moment the side effects kick in and I can not handle it anymore; I know in the back of my mind I can always quit. But now that I have started... I feel like I have to do this. I want this. I want to be that positive voice that will be able to say okay Herceptin and chemo were hell on earth... but Tamoxifen/Zoladex... not so bad. I want to be that person. Please let me be that person.

I also had an appointment at work about me applying for official sick leave at the UWV. Which was tough. My brain can not cope with so much information at the same time. This guy kept going and going.. and all I could think about was how painful this is. I kept wondering if he understood that. So we have to collect all these different papers and fill them out next time. It's crazy. But I guess I have to be thankful my country has a safety net like that. I had a good talk afterwards with my boss though. I really explained some of the things I am going through right now.

One of my favorite authors came to my town and I got a signed copy of one of his books. At first I didn't want to go because I was afraid I couldn't stand in line for that long. Things like that make me really nervous. Places with lots of people. It's so totally out of my comfort zone right now. But I went anyway and it was good.

The weather has been spring like lately and I have been taking walks and feeding the ducks and swans. 

I have been drawing a lot in my art journal. A great outlet. Gives me more joy than photography right now.

Today I went shopping for new jeans (yes still weight loss) and ended up buying some cute spring clothes. Which I haven't done in ages. I was totally exhausted when I came home.

So these are good things. But I hate how the bad things always have the upper hand. How extremely tired I am. Fuck that shit. I am a 32 year old woman and I am so jealous when I see a person jogging with their iPhone. When I freak out over the smallest things. How I always have appointments scheduled at the hospital. A new mammogram is already scheduled for June. Then I read about a young girl's cancer returning. And it just breaks my heart. This horrible fucking disease I hate so much. It is always present and that makes me so sad. 

The trial

I went to see my oncologist with a picture in my head of how it all was going to be. But for a second I forgot things never go the way you plan them.

My blood work came back fine. Everything looked normal. Which is always a relieve to hear. 

I was going to say yes to the Tamoxifen and no to the Zoladex.

But my onc says we're dealing here with European guidelines. Basically it's all or nothing. First you try the whole package. If you can't handle that for whatever reason, then you look at other options.

So I have my first box of Tamoxifen at home now. Tomorrow my family doctor will give me my first shot of Zoladex (for a month, not three months like it's normally given).

I said yes. To the whole package. Because I know I can never live with myself if I said no. Do I have faith? Do I really believe I will be able to take these meds for five years? I hardly can to be honest. I know that isn't a good start. But my response to medication in the past has been well... upsetting. Definitely causing some traumatic experiences. I am SO scared to get sick. How ironic is that? These pills should prevent me from getting sick. But at the same time... they have terrible side effects.

I know, I know some people are taking them without much trouble. But because of my experiences with Herceptin and other drugs... I just feel this WILL BE the next bad experience. I am just so scared and sad. I wish it would all go away *poof* like that.

My onc told me that if I make it through all of this pain I will still have the scars. But in the end I will become a different person because of it; better and stronger. Even more interesting and colourful. I want that. I really really want all of that. I really feel like I am going through the pain. I know I am not hiding from it. But it's all taking so much time and patience and energy. It's exhausting to live your life like that. A constant struggle.

Anyway I have an appointment with my onc in five weeks and we'll discuss how everything is going. If I can't handle it we'll look at other options or perhaps I will quit the whole damn thing. A month. I'm giving myself one month. 

Hair diary update. 

Blood test first

So I saw my oncologist last week and I got to ask all my questions about the Tamoxifen. We also talked about the Zoladex injection. Which kind of freaked me out. My onc wanted to do a blood test and he will get the results back in two weeks. I will then have another appointment with him. He told me to write down my questions again (and you bet I will) and we'll make a treatment plan.

He told me perhaps I can start the Tamoxifen every other day so my body can slowly get used to it. Which sounds appealing to me.

In the mean time I have been asking around about the Zoladex injection and found out not that many women actually take it. So I'm having seriously doubts about that one. I will spare you all the menopause side effects details. But it's some scary shit.

So I am tired. Of all this crap. But somewhere, deep down, I have to believe that maybe this time... the side effects won't be so bad. That I have been through so much and that I can handle this as well. I have to believe. If not, I made a promise to myself I'm done. I will quit the shit and will try to move on. But first you try. First you have faith.

He said it takes at least 6-9 months before my body will feel a little bit better after everything its been through. I might never reach my old energy level... but then again nothing is sure in cancer land. 

Today I saw my company doctor. My company hired a new one. Although he read my file he wanted me to tell my story in my own words. I did it without crying this time. Which was pretty awkward actually. It was a good talk all and all. He was pretty nice and not pushy. July 2014 I will be sick for two years and then different rules apply. He said I won't be back at work by then. So I have to apply for sick leave at the UWV. This doesn't mean I can start working on a therapeutic basis whenever I feel like it. However I have to file like a billion papers before April now which is really just wonderful, exactly what my mind needs right now.  

Tomorrow I have an appointment with my psych. And so the story continues...