May 22, 2013

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.

May 11, 2013

Kids say the darndest things

I'm still struggling and trying. Some days are better than others.

Just an anecdote for today.

Winter is over. Chemo is over. So I figured I would wear my wig more often but I still prefer my comfy hats. Of course now that it's spring... you start to notice the glances. I'm not really bothered by it, although if they do stare too long I have the tendency to stare back (=not the sweet face).

I was at a garden furniture store together with my parents when a girl dressed in pink and silver glitter came up to me. She must have been 10-12 or so. She told me she liked my hat. I smiled and thanked her. When I wanted to turn around, she asked me why I was wearing a hat and whether I was cold or not.

My chemo brain was a little shocked. What was I gonna say? Another couple was listening to our conversation. I was standing in the middle of a store. Am I really going to have 'this' conversation with a kid.

I decided to be honest and told her I have no hair underneath it. She nodded, as if she already knew. Then she popped the question which surprised me the most, "So you're doing that chemo thing?" Happy I didn't have to explain anything to her I said yes.

"So that means you have cancer right? What kind of cancer do you have?"

Right. I guess she got it right, so why lie about it. My turn. I asked her why she wanted to know all these things. She told me she brought food on behalf of the church to this woman with breast cancer. She started a somewhat confusing story about this woman. I think the whole thing definitely left an impression on her and she tried to tell me in her own words the things that stuck with her. She kept saying the woman would start chemo very soon and that she would get sick.

"Chemo is like little beams?"

Oh boy I had to think quickly here. I explained her chemo will go through an IV which they put in your hand and that you're usually sick for a week and then you will start to feel better again. "Right and then you'll lose your hair!" Yes exactly. I told her I shaved my head after two weeks. She told me that sometimes when they unraveled her dreadlocks she was afraid her hair would fall out as well. We actually talked some more about my hat collection and my wig.

So yes I was caught off guard in the middle of that store. But there's just something about the innocence of a child so pure, open and trusting... with no evil intention. 

May 1, 2013

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!