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 11, 2013
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!
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!
April 23, 2013
The sound of silence
I'm struggling.
It's been almost three weeks since my last chemo. I will have Herceptin #4/17 coming up this Friday.
I talked to a colleague on the phone this week and it really hit me that people will never understand what I went through. I know I've always realized this, but talking to her all of a sudden made it so clear and obvious. She is the sweetest person, but was completely clueless.
I think it made me feel so isolated and alienated from everybody else. During chemo I only had my family around me, a rare visitor every once in a while. But it was just my family who saw me at my worst. So how do you connect with people after going through something like this? I'm nervous for all those 'first time' conversations.
Life is so different for me now. I need to find balance and structure. A way to deal with everything that has happened. I am not the same person any more. I know that must be weird for other people. I understand it's hard talking to a 'sick' person as well. But I feel so alone in many ways. Cancer is like sitting on a freakin' deserted island. This is my worst nightmare and it goes in a bag pack that I have to carry with me for the rest of my life.
The only people who really get it are other people who have had or have cancer. It's good to have 'breast' friends.
So yeah it is hard for me to talk about everything that has happened. I think I'm really learning and experiencing what to tell to whom. This morning I read a quote on the Pinterest board as if it were meant to be:
It's been almost three weeks since my last chemo. I will have Herceptin #4/17 coming up this Friday.
I talked to a colleague on the phone this week and it really hit me that people will never understand what I went through. I know I've always realized this, but talking to her all of a sudden made it so clear and obvious. She is the sweetest person, but was completely clueless.
I think it made me feel so isolated and alienated from everybody else. During chemo I only had my family around me, a rare visitor every once in a while. But it was just my family who saw me at my worst. So how do you connect with people after going through something like this? I'm nervous for all those 'first time' conversations.
Life is so different for me now. I need to find balance and structure. A way to deal with everything that has happened. I am not the same person any more. I know that must be weird for other people. I understand it's hard talking to a 'sick' person as well. But I feel so alone in many ways. Cancer is like sitting on a freakin' deserted island. This is my worst nightmare and it goes in a bag pack that I have to carry with me for the rest of my life.
The only people who really get it are other people who have had or have cancer. It's good to have 'breast' friends.
So yeah it is hard for me to talk about everything that has happened. I think I'm really learning and experiencing what to tell to whom. This morning I read a quote on the Pinterest board as if it were meant to be:
"Sometimes it’s better to keep silent than to tell others what you feel because it will only hurt you when you know they can hear you but they can’t understand."
April 17, 2013
April 12, 2013
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.
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.
April 4, 2013
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.
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.
March 29, 2013
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.
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.
March 27, 2013
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.
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.
March 26, 2013
March 24, 2013
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.
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.
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