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.

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.

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.