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.

Hair

I had a tough week. I realized I really am my own worst enemy. I am being so hard on myself. I need to let go of a lot of things. But I'm having a hard accepting my current life. Which is crazy. But let's talk about that another time.

Because I finished my chemo in April 2013 and started to document my hair growth on a monthly basis. So 12 months have passed... and I'm not really all that happy with the way my hair looks right now (it's the out of bed look, but worse... like an explosion). At the same time I treasure every hair on my head and I'm so happy to see that it looks like my natural curly/wavy is coming back. I just WISH it would grow faster. I think I'll be more happy with it in a few months.

I got rid of the hats somewhere between month 4 and 5. Picture 5 also shows the first time I dyed it again. Grey hairs gone. 

So here you have it 12 months of hair growth.

It's a milestone

My very first official haircut!

It seemed worth a post after all the drama.

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. 

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.

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!)  

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!

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.