First day of summer

I keep thinking I need to update.. but then I start reading my own blog. Page after page, words written by me. How those three years changed my entire life. How I handled things. A horror story. Yet written with humour and sarcasm. The medical facts, the struggles and the forgotten memories. Broken to the core. But hopeful and creative.

I'm just so thankful I started this blog almost four years ago now. It feels quite amazing reading, experiencing, looking back. It was such a long dark road.

I think it helps to heal. The road to recovery and remembering where you came from, it'll give new insights. Today. Matters. The here. The now.

I had my annual mammogram a few weeks ago. That feeling, that you'll never be able to shake this off, will start creeping and haunting you a couple of weeks before the date. Nervous Nellie here she comes. Sometimes I barely notice it but the tension in my entire body says enough. This time it was a little chaotic, new hospital wing, they were running late, long waiting hours.  But she called out my name and that is my cue. Strip down. And smash those boobies. They hurt me so much this time. The mammogram actually left me with several bruises on my breasts. It is such a fucking torture. They need to come up with something different here. We can go to Mars but not come up with a new boobie machine?! Anyway after waiting some more I got to go home and she told me everything looked fine! I just felt extremely tired that moment, I had a nagging headache. I was relieved but not happy. I think the tension builds up so much you need to get rid off it before you can feel happiness again. The next day I had another appointment with the mammacare nurse and she confirmed as well everything looked fine. The day after that I was able to finally feel happy again (and bought myself a new bag and ordered Chinese food yessss).

Work is going quite well for me. The short version is that I decided to jump (once more) and I started working as a secretary again. Same division, different building, different people. It was hard at first... but I think it helps me as well. I'm way more visible as a secretary, can not really hide behind anything anymore. I get to meet new people, I run into former colleagues.. people who know me and my story, people I don't know but know my story (well or so they think). It is a bit of a weird experience. All the responses you get. The super weird and sometimes very intimate questions. Sometimes it is hard and I'm freaked out about it.. but I'm also able to deal with it. I'm getting stronger. I enjoy spending time with colleagues, silly office humour, the teasing, the smiles... it is good for me.  It really helps picking up the pieces for a 'normal' everyday life. I enjoy working for my boss. To be able to assist him, to help other people by doing my job. It helps with the confidence to feel useful.

Today I talked to my psych.. about many things. We are now working towards closure. I will have a few more appointments and then in December we'll try to finish and have our last one. It feels good. It really does. I'm coming to terms with things. I have come so far, and I especially realize this when reading this blog. She complimented me on this as well, I have changed so much in the last few years. Slowly, slowly I'm getting there. Finding back old pieces and creating new stories. The glue is holding it all together.

I have a vacation coming up. Which feels a bit weird because when I had my last vacation, this thing all started and I did not come back for like three years. I hope I'll be able to enjoy it after a few days. Reintegrating is pretty exhausting and it should be good. Relax a little nervous Nellie.

I do have something special planned... which I'm definitely going to write about more. You see my eyebrows never grew back after chemo. Like 5 hairs... quite sad. I'm getting so sick of drawing them on my face every morning ugh. Sometimes I'm scared I'll smudge them or when walking in the rain they will fall off. Tough life. So... I found this amazing woman who does cosmetic and medical tattoos. And she is going to tattoo my eyebrows with this special 3D microblading technique. Apart from the radiation dots I have no other tattoos. So I'm really excited about this.. but also a bit nervous! I mean, come on it must hurt to have a tattoo in your face right?! But I'll be so happy afterwards, waking up in the morning with the perfect brows! Will keep you posted!

Life got in between

Hello there, remember me?! I wanted to write another update to tell you about my progress. Because I hate blogs that aren't updated anymore and you never know what happened to that person. I just hope one day, somebody reads this and feels a little less lonely. That my words or photos will mean something to just one person. That be enough.

When I started working again last year, at the same time one of my former bosses found out he was sick. A melanoma spread to his brain and lymph nodes. I was his secretary for about 4 years. So I sent him a card and in January I wrote him a long email. He wrote me one back and was so happy to hear from me. We chatted about our treatment, hopes, distraction, loving family/friends and photography. He knew he wasn't going to get better, but there were still lights of hope. He had surgery and was going to start immunotherapy... but it wasn't meant to be. He got partly paralysed because of a cerebral hemorrhage and died at home with his wife and twins. 

I really felt the need to be at his cremation. To be surrounded by people who knew him. I have been thinking about him a lot. Mostly happy memories of a secretary. The cremation was intense, sad and personal. Music was our 'thing' and we always talked a lot about concerts.. he even gave me a CD for my birthday once. So when I heard James Bay, Venice, Dotan & Coldplay... it was just perfect. 

Afterwards I went up to his wife who also spoke during the cremation. What a beautiful soul! What a gorgeous strong person. It's strange how people you barely know can touch your soul like that! Wow. I told her my name and she said her husband showed her my photo series of the Chemo Chronicles. She gave me a tight tight hug.. and she said, "But look at you now, you're still here.. you're still standing strong"... and at that moment I realized what the term 'survivors guilt' really means. But don't get me wrong I'm really really glad I went.  It was a powerful goodbye. 

I have slowly started to cut back on the antidepressants. Well at least one of them, the ones that are making me fat and hungry. I'm still taking the Citalopram, but I kept gaining weight on the Mirtazapine. I'm a vegetarian but I felt like I could eat an entire horse every night. It really got out of hand and it made me sad, which is exactly the opposite of what its suppose to do right?! I took a 1/2 pill for 3 weeks, and now I'm on 1/4 for the second week. I have had some withdrawal symptoms but I'm determined to quit this happy-but-fatty-pill. 

I have been seeing my physiotherapist twice a week. We are working on my muscles, strength, condition, balance, flexibility etc. It is hard work! He makes me sweat like a pig. 

I am currently working 5 hours on three days.. and I also work a couple of hours at home. It still is a struggle.. mostly the fatigue and joint pain. But I enjoy being among colleagues. People seem generally happy to see me, I still get hugs and kisses when they see me. I started working as a project assistant for a pretty big project and that is something I have always enjoyed. I'm still not sure what is going to happen to me, because I'm reintegrating and I don't have a permanent job, I'm surplus. But I try to not to worry about that, and have faith what will meant to be will be. Also I might have to work as secretary again.. and that feels like taking a step back. Being back at work you see people with new jobs, who have developed and educated themselves. I talked about this with my psych and what matters now is I will feel better about going back to work. Finding back my confidence, a daily rhythm. I am still young and I have plenty of time to find out what it is I really want. 

My company doctor. Oh my, don't get me started on this guy. He actually told me.. and I quote, "Compared to other people in your situation, I think you can't do anything." Are you fucking kidding me?! I was so pissed. I told him about how hard it was for me to look at the things I have achieved and that I am working every fucking single day to look at the positive things in my life instead of the things I have lost. I was really emotional but determined! In Dutch we say, die heb ik een poepie laten ruiken.. I kicked his ass! 

So from that point on my appointments are a little more pleasant. He actually gave me a compliment last time we spoke. Ha! So always, ALWAYS stand up for yourself... but also realize you never EVER have to apologize for the way you chose to survive. Don't abandon the person you used to be.. but carry her! Be brave, be strong!

I have a thing for lists

+ I had 5 sessions of the Mindfulness training so far and it has been good! I'm so glad I took the big jump and went for it. I love the meditations techniques, the way how it's actually a lifestyle. It changes your perspective, even though it's hard and it goes very slowly. But this is something that is close to my heart. Definitely. I can recommend it. Whether you've dealt with cancer or not, depression or anxiety or stress at work.. or simply feel the need to take a deep breath. Check it out!

+ I spent a couple of afternoons at my own place. Watching TV, drinking tea, a walking meditation through the neighbourhood, rearranging my livingroom. AND I even brought the bunnies with me twice! It was so cute and emotional and it brought back so many memories. I love these sweet fur babies. Hopping through the house, finding back their old favourite spots. Next step: spending a night in my own bed. My psychiatrist told me that I still have some mourning to do, but there's only one place where I can do this and that is my home. I guess that makes sense and all. So it is not going to be easy, but eventually things will get better and I hope to feel more confident about myself.

+ I am trying to get of the couch and set new goals. So I went to the Kröller-Müller Museum with my dad and saw work of Picasso, Monet and Van Gogh! I was nervous and tired... but I did it. I also went to this children's farm/petting zoo with my parents. Hey never too old for these things. I refuse to grow up especially when I hug a goat. It was wonderful! I love animals! We also went to this beautiful protected nature area for a windy walk and it was good. Fresh air!

+ Another thing that was really important to me was visiting my friend who had just given birth to a beautiful baby girl. I was really looking forward to seeing her and her first daughter as well. So cute! So it was good talking to her and I had a lovely afternoon with lots of smiles. 

+ I also had one of my favourite little visitors coming over, my colleague's son. Who is just adorable and we played on the ground and had fun. 

+ I also celebrated Lola's 5th birthday. Can you believe it? Furbabies, they grow up so faaast! 

- The bad stuff. I'm still struggling with my anti-depressants. I am now using a mix of Citalopram and Mirtazapine and the side effects for the last four weeks have been awful. I did lots and lots of crying. I have been feeling like crap. Emotional, vulnerable, scared. I'm meeting with my psychiatrist next week so I'm hoping it either goes better by then and otherwise we have to talk about our next step. Perhaps I need to take a break from meds because I'm so tired. But this scares me as well, because I really could use some 'help' with the big steps in recovery I still have to take. We'll see, we'll see. 

+ I'd like to finish with something positive. At Mindfulness training we had to keep a list of positive things that happened during the day for a week. Because we often remember the bad stuff and neglect the good happy tiny pleasures in our life. I actually felt really good about this and decided to go on with it. I found a wonderful app called Gratitude356. Practising gratitude has been scientifically proven! You can check it out here if you're interested. Give it a try!

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.

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. 

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.

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.

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.

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...

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.

Adiós AC

Goodbye Adriamycin, or Doxorubicin Hydrochloride, or whatever your name is. Goodbye Cyclophosphamide. Bye bye little fuckers. You were mean and nasty to me and you seriously kicked my chemo butt! But I should be thankful for your existence. I am aware of this.

So no AC wasn't a pleasant experience and it has been hard on me. Each round was a little different but overall I got pretty sick each time for at least a week. Near the end my loss of appetite became worse and I am now way more tired than I was when I first started. With each round I also had a painful mouth, ears, and throat. The nausea was horrible, especially day 3-5. I lost a lot of weight and well constipation ain't no fun at all.



The hair loss? Before chemo somebody told me hair was overrated and I didn't really believe it. But I think it's sort of true. I have gotten pretty used to the bald head. Of course it's sad, but it's nothing compared to the other shit we get thrown into our lap.  

What will always stick with me though is that black hole, the panic attacks and the sadness. No I haven't been able to get rid of those.

So now we move on to the next round. The next challenge. Taxol/Herceptin. Next week I have two appointments scheduled where I'm hoping to find out more about these new meds and its side effects.

Chemo fog

So I'm back. Sort of. Made it through AC chemo #3.

The day before, I celebrated my 31th birthday with very mixed feeling. It's just not a happy time right now. I wasn't in the mood for any parties. My colleague visited the day before which was nice. On the day itself I had to get another blood test early in the morning. My dad took the day off and so did my sister. She prepared two huge bags with lovely sweet cute gifts and they were the highlight of my day! I enjoyed every single one. We had some Chinese food and that's about it.

Chemo #3 was another tough one. This time I talked a bit with two other women also being treated for breast cancer. One of them even wanted to know where I got my hats. We shared some tips and tricks about blueberry juice and ginger tea. It was okay, but I have to admit I prefer to listen to my iPod because it relaxes me.

I also talked to the nurse about being so nervous and everything. Basically she told me what everyone else has been telling me. That I just have to accept the fact I will be sick for a week and to not  struggle against it. Once I will start to feel better I should enjoy myself and go out and do fun stuff. It sounds so easy. But it's not. You can't just forget... It's not a switch you can just turn on and off  whenever you feel like it.

I remember after my first chemo I felt so relieved when I started to feel better again. But now it only seems to get harder and harder. I guess that makes sense. Although no chemo feels the same, you now know what to expect. And I hate it. I hate that black hole and everything that comes with it.

So this time I already started to feel sick a few hours after coming home. As expected I slept mostly through Christmas and I'm glad the Holidays are almost over. 2013 is peeking around the corner and it means I have to do ONE more AC. Then we're changing to TH with new meds, new side effects, new worries but also new hope.

The one without the hair

After your first chemo you know you're going to have to deal with the hair loss. An hour after my chemo I pulled out a hair and showed it to my family to let them know it started. I'm crazy like that.

Last photo with real hair

I got very anxious this week. Because it usually happens between day 14-17. The waiting, the waiting. I just couldn't take it anymore and that's when I called the wig store. Thursday I dropped by and decided to pick up my wig and I also let them shave my head.

A big decision.

For me, it was the right one. Control freak that I am, I took matters into my own hands. Not having to deal with any of that waking-up-finding-hair-on-your-pillow stuff.

A couple of weeks ago I told my mother I would scream and cry while they would shave my head. So she came along with me very well prepared with handkerchiefs. Not knowing I brought my Hello Kitty tissues. Surprisingly we didn't need them at all.

The wig

Which is strange, because my hair used to be part of my identity. I was always known as the happy bubbly girl with a lot of curly hair. But I have known it now for four months. Three days after I was diagnosed with breast cancer I stood in front of the mirror with a scarf wrapped around my head to see what I would look like.

Of course it was hard and very emotional. The sound of the electric razor. The first moment it touches your head. You keep breathing, breathing. I actually felt sick afterwards. Not to mention the morning after and you see yourself in the bathroom mirror. But I'll probably get used to it. Just like with everything else. You simply deal with it, because you don't have any other choice. This is your life. Right now. And no matter how much it fucking sucks sometimes, it's good to know you still have some control over it.

Chemo continues

So what is chemo like? Well I'm having a hard time finding the right words for it. I think most of us  would describe it as flu-like but that doesn't exactly cover it. It's worse. It's a black hole. You are very aware of the fact it's taking over your body and even your mind. It's heavy. It feels like the end of the world and you're never going to be able to crawl out of that black hole ever again.

But.

Six or seven days later.. you're doing better. Just like that. It's crazy; you're eating Dutch kale and pizza again. Or chocolate chip muffins your friend brought by! Your state of mind changes. Every now and then even the sun starts to shine again.

But of course in the back of your mind you know it's not over and you have to prepare for the next round. My first chemo I was scheduled for a double room. But because of some trouble they had that morning I hit jack pot and got to stay in the room suitable for five people. The whole experience was so overwhelming. The nurses running around. All the beeping infusions. Ringing alarm clocks. I hated it.

The radiation treatment place and the breast cancer department at my hospital were both renovated places. The atmosphere was warm and peaceful. Everything chemo department is NOT. I'm going to bring my iPod next time. Dive into my own little world.

Next time on She Still Dreams in Colour: hair loss.

The aftermath

Six days later. I feel a little better and sort of back to the land of the living.

It is difficult to write down the entire experience. It was hard and overwhelming. How do you cope with something like this? The poison going through your body and taking over. Knowing you need to go back for 7 more. It just does not seem doable. But then again, you don't really have a choice.

I suppose I experienced the most common side effects:

• Fatigue and tiredness
• Nausea 
• Headaches
• Heartburn
• Irregular heartbeat 
• Loss of appetite 
• Panic attacks 
• Constipation 
• Painful mouth, ears and throat 

Just to name a few.

Hair loss will probably be peeking around the corner as well within the next two weeks. The wig store knows I have started chemo so when I'm ready I just have to give them a phone call.

I realize I really need to go back to the original plan and take small steps. Focus on the next round and that's it. I do not need to look ahead because it's pretty pointless right now anyway. Going to tackle them one by one.

I'm going to leave it at that.. for.. now.. Zzzzzz.............

November is chemo month

Not a glass of rose wine this time, but the most feared cocktail of 'em all. Gain weight or lose weight (in other words diarrhoea or constipation). Nausea and extreme fatigue. Not to mention the bald head. These are just a couple of side effects. This is D-Day (or C-Day).

The biggest invasion to conquer planet Ciel. Goal: to destroy and kill any evil cells that are possibly still floating through my body. 

But wasn't D-Day also the beginning of liberation? It's coming. I will get my first chemo November 9th.

Today I talked to the nurse for an hour and she gave me brochures to read at home. I was informed about the entire procedure and what to expect. The regular blood tests, the appointments with the oncologist, the side effects etc. etc. So I start with 4x AC every three weeks and I will be at the hospital for about an hour and a half.

The next round of chemo 4x TH will be even harder because by that time my body won't recover that fast any more and I also have to stay longer at the hospital. However the final chapter called Herceptin (13x), should be a piece of cake.

Am I scared? Hell yeah. But I can't wait for November 9th. I have to do this. So rather sooner than later.