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!

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.

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. 

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.

A new year in colour

It's time to say goodbye to 2012. To be honest, I try not to think about it too much. Yes, it was the year I was diagnosed with breast cancer. I'm still in the middle of this roller coaster ride... it seems pointless to go over and over it again.

So here comes 2013. I know for sure I will be getting treatment for at least another year. If everything goes as planned I should finish chemo somewhere in April and then the Herceptin will go on. It's weird, isn't it? Most people don't really know what the new year is bringing them. My path is pretty clear and obvious.

But that doesn't mean I can't dream a little dream (in colour).

 
FINISH AC CHEMO
First of all I need to focus on finishing this last sucker. One more. One more, sounds so much better than four.

THE COUNT DOWN
Then I will have four chemo's left. New meds, new side effects. But a real countdown can officially start.

       

HERCEPTIN
The rest of the year I will get Herceptin every three weeks 13x. I have to make this a part of my life. Again, find a new normal.

      

HOME SWEET HOME
Somewhere along the way I want to see if I can move back home together with the buns. Perhaps work a few hours a week.

     

BODY & MIND 
But I also realize after treatment I still have a long way to go and wrap my head around everything that has been happening to me. I do want to seek professional help for this. I also want to start running and pick up yoga again.

HAIR GROW
I can't wait for my hair to grow back! I'm currently drooling over fashion blogger Karla Deras' hair. So sexy!

I hope that 2013 will bring us health, happy homes, strength, courage, lots of smiles, (inner) peace, new (old) music & love. Let us eat cupcakes and macarons! Make art, not war. Hug a bunny (or two!). Last but not least, may 2013 be the year hair grows back faster than usual.

The Care Bear Stare

I started my radiation therapy. I've had two so far. So only 19 more to go.

Radiation is a local, targeted therapy designed to kill cancer cells that may still exist after surgery. The actual delivery of radiation treatment is painless. But the radiation itself may cause some discomfort over time.

1) In the area where you are receiving radiation, your skin can turn red or tan, and may be sensitive and irritated.
2) During your treatment course, you may feel tired. This feeling can last for a few weeks, even after treatment ends.

It's a strange strange world. You try to make it a part of your daily routine. But let's face.. this is not really normal. This is not what my daily life should look like.

Waiting room. Dressing room. Small hallway. Radiation room. They're using the pinprick tattoos to line up the machine accurately. They move you around until everything is perfect. There you go. Care Bears Stare!!!!! After a few minutes you're done. Small hallway. Dressing room. See you tomorrow! 

Meeting the oncologist

Today I had my first appointment with my oncologist. Appointments that are never easy. These are the moments where you have to face the facts over and over again.

The facts: the tumor is gone. When I do absolutely nothing I have a 80% chance of living my life like a normal person. When I go through all the treatment (the full package) the survival rate goes up to more than 90%. So a girl does what a girl gotta do. Two weeks after finishing radiation I will start my first chemo. I will get 8 rounds of chemo and 13 rounds of Herceptin (in cancer land we call this: 4x AC, 4x TH and 13x H). So you do the math... this means this whole thing is going to keep me busy for more than a year.

I sort of knew. But when you're being told like that.. well it's not easy. "It's not going to be easy", my oncologist said. He was convinced my body was able to handle it all, but being fit mentally is just as important. If I need help, all I have to do is ask. He seemed like a very nice and calm guy who makes time for you. Absolutely willing to answer all of my questions. He also knew exactly when to make a joke. After I told him I google a lot for information about breast cancer he asked me whether or not I googled him as well (haha I am so going to now).

I seriously want to focus on my radiation. But it's so hard because there is so much other information and preparations you have to deal with (dentist, ENT specialist, the wig and so on and on). It just never stops.

The egg project

If you think I'm taking it easy after surgery to recover from everything.. well boy are you wrong. You know it's not just the whole cancer thing that is thrown in your face. You have to make so many other decisions as well. The effects of chemotherapeutic drugs can lead to infertility. As a young single female this is not something you want to deal with. 

So the hospital told me to go talk to a gynaecologist specialised in cases like mine. Until very recently, embryo freezing was a reasonable option with good pregnancy rates, but egg freezing was a long shot. This made it very difficult for women like me, without a prince charming, to preserve their fertility. A single woman could freeze her eggs and not really know if she had a reasonable chance of pregnancy from those eggs. Or she could consider embryo freezing, with a much more predictable pregnancy rate, but the downside of having to commit to using donor sperm to create the embryos. Not a desirable option (although I did consider writing a letter to Johnny Depp and Alexander Skarsgård).

Today, thanks to dramatically increased pregnancy rates in the last few years, egg freezing is a realistic option for preserving fertility, one that has success rates that are approaching success rates for frozen embryos. So cancer patients can now freeze eggs knowing there are very reasonable pregnancy rates. Good. So let's do this.

Now to be honest this whole thing was very emotional for me. Every time I had to talk about it I started crying. Dealing with cancer is one thing, but to have this taken away from me that is just (first time I'm using this word) unfair. Truth is I don't even know whether or not I want children. Maybe with the right person. One day. But then again, maybe after everything my body has to go through, all the treatment and such.. kids are the last thing on my mind. Being healthy will be my priority.

After several tests my gynaecologist told me there is a fair chance my fertility is likely to be affected by chemo. Of course there is no way to predict what nature will do. Fact is the younger you are, the more likely you are to have normal periods again and still be able to have children once the chemotherapy has ended.

So I have officially started the egg project. It might sound easy peasy. Well it's not. There's a tight schedule. Everything has to be done precisely as described at a certain time. The pills and the hormone injections. Yes you have to put needles in your muffin top. I started last Friday and I'm wondering when the hormones are going to kick in. When will I turn into crazy Ciel?! I will have another echo tomorrow.    

I'm glad I'm doing this so future Ciel will have no regrets.

The plan

So what are your plans for the future? Well I'll be fighting cancer. I've had my appointment with the surgeon and it was another long and confronting talk.

Let's start with the good news: after more research the sentinel lymph node was again negative for cancer. The tumor was 1.8 cm and was removed completely. So goodbye to you little fucker. The wounds/scars are healing and I do feel somewhat better. 

The bad news is that it was a grade 3 cancer. Obviously a high grade aggressive cancer that grows faster and is more likely to spread. This means lots and lots of treatment. Not only was my tumor hormone-receptor positive but it was also found her2-positive (a protein thing).

So in short this is the plan:

1) Within 4-6 weeks I will start radiation therapy. About 25-30 times. Probably 5 times a week.
2) My chemo will start about two weeks after finishing radiation therapy (hopefully about 6-8 times).
3) During the chemo my herceptin will start and will continue after finishing chemo (not sure yet how many times but probably a lot). Herceptin has far fewer immediate side effects than chemotherapy. For example, there is usually no nausea or hair loss. However, there is a small but real risk of heart damage and possible lung damage.
4) Last but not least: hormone blocking therapy for five years.

So yeah.. that's a lot. To handle. For one person. I'm pretty scared of how my body is going to cope with all of this. Not to mention the mind. But it's not like I have a choice. So crazy medical roller coaster... here I come.