But first comes number 17

I am so glad the Holidays and all that festive crap is over. I was so not in the mood. Basically I went to bed at 10.30 p.m. on New year's eve and slept through everything. I was perfectly fine with that.

So now it is a brand new year and I have 1 more Herceptin to go. One. Only weeks ago I thought I would never make it. But really, it's happening. I am doing it!

The thing is, with the Herceptin being gone... I am not done. It's the chapter Herceptin that is closed, finished. I have noticed this is hard to understand for people but I can not simply pick up the pieces and move on.

There is so much 'stuff', unfinished business, left in my head. I am scared. Because for over a year I had my life planned out. I knew I would get sick every three weeks. Everything evolved around cancer. Now I start with a new chapter, a blank page, and it scares me so damn much. I don't even know where to begin.

Thank god for psychologists and people like that. Because they actually have 'ideas' about this issue. Phew.

I am still such an emotional person. Getting up in the morning is the HARDEST part. I feel so sad and lost usually. But sometimes I have better days where I go out and do things, even if it is just groceries, take walks or visit work... I do all of these things. Little steps.

It is so hard for me to answer people's questions though. Not only because I get so emotional and always start crying. But because it is so obvious people will never understand me and I always have to explain everything. According to my psychologist it is all part of the healing. I have to learn how to say I do not want to talk about it. Or perhaps start to talk about something else. It's all one big learning process. Slowly and with a little patience.

But first comes Herceptin number 17/17 on January 24th. 

Bye bye 2013

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

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

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

Updated the hair diary.

The last 2 KM

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

So for now... no more drugs.

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

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

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

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

Happy Holidays to my dear readers! 

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

I try

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

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

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

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

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

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

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

As much truth as one can bear

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

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

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

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

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

I broke. 

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

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

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

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

My bumpy road

I guess I should start by telling you about my echocardiogram which was good and showed an ejection fraction of 62% again. So the Herceptin story continued and that Friday I had H #6. Instead of the usual 30 minutes, we let it run for an hour. I still felt pretty spiritless for three days but perhaps I was back on my feet a little earlier than last time. It's hard to compare; every time is different. It was the worst weekend ever anyway, because I knew I had to do a mammogram on Monday.

I was nervous as hell. So scared, totally freaking out, going crazy. 

I had a lumpectomy but my breast is still very sensitive (more on that later) so I was a little worried about how they would 'smash' it between the plates. But the lady was very sweet and careful. Apart from all the fear and anxiety that goes with it, the mammogram itself I don't really mind. It freakin' hurts for sure, but before you can think 'f...' it's already over!

So then she told me to wait in the little dressing room and came back after a few minutes to tell me I would get the definitive results tomorrow but that I had nothing to worry about and the photos looked fine. So right there, sitting in that little dressing room with almost no light and bird wallpaper I felt it. That sigh of relieve. 

After that I had I had to do a Dexa scan and some blood tests. I will get the results when I meet my oncologist in August. They are important for hormone blocking therapy. We haven't decided when I'm going to start that one.

So then I came home. Everybody was happy and all of a sudden that sigh of relieve was gone. I felt so overwhelmed by everything. By my own story. The story that started with a mammogram about a year ago. I could not stop crying. Uncontrollable sobbing.

The next day I met with the nurse who officially told me the results of the mammogram were fine. I think I was feeling a little bit better by then but still so sad because of everything that has happened. How can I not? We talked about therapy and mindfulness but I still haven't decided whether I want that or not.
 
So I tried picking up yoga a few weeks ago, sun salutations, but my breast and armpit are still very sensitive. Which is completely normal after all the treatment I've had. But lately my rib (it could be a muscle as well) hurts as well. I started reading about long-term side effects of radiation therapy and well it didn't make me very happy. So I called my radiologist's office and asked them for an appointment. At first it wasn't possible, because she's such a busy woman with a busy schedule but I explained everything and then I got a call back. I can come see her this Monday.

Great another visit to the hospital. 

All of a sudden I got so scared and mad because of all these side effects. It's hard to accept you're a 31 year old woman with aches and pains and feeling tired all the time. I feel like it just won't stop. It's a bumpy road? Yes but it's bump after bump. Seriously what else do they have in store for me?! How do you just accept what has happened and move on. I know I have to look at all the positive things and let go of the bad. But that is a hard thing to do. A god damn hard thing to do. Sometimes everything sucks major ass.

But hey my mammogram was fine. No signs of a tumor anymore. I AM thankful for that with my entire heart.

P.S. Thank you all for your comments on my last post. It really means a lot to me! Thanks for sticking with me and reading about my journey.

Broken wings need time to heal

Just another Monday. Two months post chemo.

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

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

Patience is just not my thing right now.

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

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

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

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



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

Trastuzumab

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

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

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

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

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

Tenderheart

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

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

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

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

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

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

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

No words, no nothing

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

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

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

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

New colours

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

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

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

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



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

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

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

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

Being a wild bird

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

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

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

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

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

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

iHeart

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

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

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

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

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

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

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

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

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 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.