This is her fight song

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

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

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

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

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

Ode to an onc

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

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

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

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

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

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

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

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

The trial

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

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

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

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

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

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

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

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

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

Hair diary update. 

Decisions

So is this the last chapter where I am going to break my head over? The hormones estrogen and progesterone can stimulate the growth of some breast cancers. Hormone therapy is used to stop or slow the growth of these tumors.

In my case I was told to take the medicine Tamoxifen as a 5 year adjuvant treatment. I am seeing my oncologist Wednesday to talk about this.

Of course there's a catch here. The 1001 side effects... that come along with bringing a 32 old body in menopause. The risk of uterus cancer. The pressure that comes with taking medication like that, physically and mentally. Just to name a few things I am worrying about.

I also came to realize I am scared. Scared of taking another pill. I have been a 'patient' and sick for a year and a half and I'm done with it. I want my life back. I don't want to feel like a 80 year old. There's such thing as quality of life.

So I have read many stories on the internet (too many). Of course the ones where people succeed and actually take this pill for five years are few and whenever I read one it doesn't stick with me. No it's the bad ones that keep going through my head. The side effects. Because if anybody knows it's me, pills come with side effects. I am so tired. I don't know how much more of this shit I can handle.

Do I have enough energy left to get my hopes up once more?!

At some point enough is enough. 

So I have decisions to make. I made a list with all of my questions and will come prepared as always. I will talk to my oncologist and I trust him, I have faith in him. But in the end it will be my decision.

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.

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.