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.

Lucid dreams

Number se7en

It started with two days of crying and sobbing. I still don't really know if that's the Dexamethason messing with me or if these feelings are really coming from inside. I do believe the chemo drugs are seriously fucking with me. This stuff is hardcore. Since chemo travels to each cell in the body via the bloodstream, it obviously must have an affect on your thinking. It seems I pulled through pretty well this time. Just keeping my fingers crossed for next week when the white blood cells will drop. The weather is so cold over here. No infections. No nothing please. 

At the end of the week I all of sudden realized I have only one chemo left and started reading about Herceptin and Hormonal therapy. So basically I ended the week like I started it, with lots of crying and sobbing. A few hours later I decided to put on the big girl panties, the wig and some make-up. I went out for some groceries. Which sounds lame, but it was exactly what I needed.

So yeah I have to admit for a while I wasn't living in the now any more. I have one chemo left. One. I have some seriously mixed feelings about this. I know, of course I'm thrilled it's over. Chemo was one of the hardest things I ever had to go through in my life. I've never felt so sad and alone. I've never been to darker corners in my life before. But now what? Will my body be okay. Will it back me up when I need it the most. Can I depend on it again? I guess we have to trust each other again, and that  takes time.

My family keeps reminding me of all the fun stuff I get to do once chemo is over. How much better I will feel. This drama queen started yelling she didn't want hear it! I'm not ready. I can't see it yet. I don't feel it. I have so many worries left. Such a long path lies still ahead of me. The Herceptin for the rest of the year and I will probably soon start the Hormonal therapy for five years. Which is not just a pill, but one with many consequences. So many things to worry about. I will get my mammogram and dexa scan in June with a follow-up appointment. My first echocardiogram this week. How can a person not worry about that?!

My life will never ever be the same. Not when I finish chemo. Never.

But.

It's spring. Soon it will be summer. My favourite time of the year. Things will get better. I'll find my way.. even if it's through a wilderness of despair. 

Here comes nervous Nellie

It's chemo week again. Friday I have number 7 in front of me. Which means: distraction! I have been working on creative projects, updated my photography website and took lots of photos. I went shopping today. None of my jeans fit me any more because of the weight loss.

I also sort of wrote a BC guide. You can find it on the menu on the right or just click here. No medical advice, because every case is different. I see it more like a guide with products and other helpful tips that helped me through surgery and treatment. I hope it will be helpful for those just stepping into this crazy roller coaster.  

Distraction, I actually overdid it a bit I think. The thing is, I am still wondering when I'm going to break down. When am I going to lose control?! What a mindfuck!

I worry about so many things it's crazy. A peek inside my head? What are my neighbours going to say when they see me. When do my colleagues expect me back at work. Will everybody assume I'm okay once I have hair again. How do I maintain a healthy lifestyle without obsessing over it. How will I get back into shape. Will I ever get through a day without thinking about cancer. What's going to happen with all the scans and mammograms I still have to do. Will I ever be truly happy and carefree again. That worst-case-scenario, what if. Will I ever be able to talk about fertility and the invisible scars. (...)

Well you get the point.

I do realize these thoughts are actually pretty normal, going through something like this. But it's hard to keep things under control. That is why my friend Ashley and I set two goals for this week. I decided to take pictures to help me practise them.

1. Being in the now: most of us are actually elsewhere, rather than in the here and now. We can't control the future. We can't change the past. Being present is almost like meditation. There’s a concept called Flow. Basically it's about losing yourself in whatever you’re doing — reaching that magical zone where you forget about the outside world and are completely doing what you’re doing, whether that’s writing, drawing, yoga, running, taking pictures or whatever. It’s a wonderfully productive zone to be in, and a state that also makes you happier. Productive and happier at the same time. Hard to beat that.

2. Let go: worry is a mindset, a habit. Energy flows where you focus your attention. Understand that we can choose to focus on positive rather than negative thoughts. The best way find relief from constant worrying is to learn to let go. Worrying does not bring you any closer to solving problems. In fact, it only makes it more difficult to find clarity in your head.

Get your hat leave your worries

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.

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. 

Breathing Flowers

Two left

It's officially March! Can you believe it?! I have one more chemo in March - and one more chemo in April.

So how did the last one go? Well it was definitely not as bad as the previous one. So no puking in the parking garage or sleepovers at the hospital. Good.

It was no walk in the park either. I was so happy though, that I finally had a private room this time. It really helped me control my nerves. My parents were both with me. We were even finished an hour earlier than I expected.

The next day mister Neulasta dropped by (yes I have my personal hot 'shot' now) and gave me my first injection. He was actually surprised I made it so far without any of these miracle injections.

I experienced a full week of extreme fatigue, some uncontrollable sobbing, bloody noses, muscle and bone pain. My eyelashes and eyebrows are pretty much leaving me. I still have those damn mouth sores. But it looks like with a little extra Neulasta support, my natural defences pulled through and we made it. 



It feels really weird knowing I have two chemo's left. I will be so happy and relieved. I can't wait for my hair to grow back. Oh man and home sweet home. I want to feel great and healthy. I am longing for sunshine. I want to go out and be happy again.

But I'm also very very scared. How am I going to cope with everything, things can never go back to normal. I will never be the same person. Without chemo will my body be okay? The thought of going back to work makes me nausea.

I know I just have to take it easy. After all I still have to do Herceptin every three weeks for the rest of the year. Of course there will be lots and lots of appointments scheduled at the hospital. It's not like they're leaving me to my own devices.

Lots of hand-holding before I'm ready to step back into the world. I just have to take my time. Sometimes you take three steps forward, one step back, no step the next day, and then a side step before making forward progress again. I will probably find back pieces of my old self. I just have to use them and paint (or shoot) a new picture with new colours.