This is really one of the most frustrating things - I'm gaining weight like crazy now, and I can't seem to do anything about it. I'm so tired this week (this was supposed to be my off week where I felt great - NOT!) and achy and yukky feeling, I can't muster any energy to exercise, much less the time to do so. All the steroids they put me on each week isn't helping either. I'm going to really focus on my eating habits. This is something I can control, so why not start there. Not that we've been eating poorly, but paying closer attention will help. It's funny, anything that is processed, I can't taste very well - all fresh vegetables and fruits taste wonderful to me. So, can't get a better hint than that, eh?
I'm a bit frustrated as well this evening, with the need to be me, and not able to be because of this treatment, and the fear that I'll forget who I was when this treatment is all over with. I played outside with my girls this afternoon and got so tired, I had to come in after 30 minutes. Madeline pleads with me to stay outside, and Ginger cries as I pick her up to come back inside, and I just feel awful. I mean, at least we got outside this afternoon at all - right? I just feel so guilty that I cannot be the mom I want to be to them. On the other side of this, we do all laugh a lot, and cuddle, and kiss and hug an awful lot. I try to do fun things with each of them everyday - I just wish I could do more. I will, I know, it's just hard.
We've got a busy weekend planned, I get to finally meet someone tomorrow night that I've been wanting to meet for awhile - someone that reached out to me through a friend of mine, who lives in my community, is around my age and has a similar situation as mine. It will be nice to talk to someone who knows what I'm going through, and trying to raise her family at the same time. I have a high school friend visiting us from back east on Sat. I haven't seen this friend for 20+ years, I'm really looking forward to it. Sunday is my niece Brittany's birthday so we'll head down to Phoenix for lunch with her - that will be nice. Well, I had one weekend of hibernation at least!
I'm really kinda funky tonight and wicked tired. I haven't been able to get myself into bed this week until well after midnight, and I'm gong to try to get to bed earlier tonight. I'm hoping for an attitude adjustment here pretty soon too, need to get past this funk this week and get to fighting this thing again. It's funny, my off weeks always seem to screw with my head. Stupid cancer.
Thank you for all your prayers, we are forever grateful. Bring on the bean sprouts!!!!!
God Bless -
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Thursday, July 30, 2009
Wednesday, July 29, 2009
Does this new side effect come with fries?
Madeline was a little under the weather today so we missed our playdate, which is a bummer - but the last time I went ahead and went when she was sick she just got even sicker, so this time we stayed home. We had a pretty good day regardless, when I put Ginger down for her morning nap Madeline and I had a tea party, with the BIG GIRL tea set. It was lovely. Animal crackers and water never tasted better! She is getting to be such a big girl, I'm just loving this age. She is really starting to joke with you and laugh and be silly. It's fun.
I should post a picture of what my head looks like now - this is the strangest thing. I'm growing hair - not all over like normal, but a thin layer all over. And it's really super light - blondish white colored. I'm calling it my chemo hair. Seriously, it's long enough so when I take my scarf off it's all kind of lying down now in this weird pattern - I have serious scarf head. Maybe this is because my regime is so different from anyone I've met - I've already had more treatments than most have to endure. Most chemotherapy patients do it for 'preventative' reasons after surgery, so it's like 6 treatments 3 weeks apart. I go once a week for three weeks for 6-12 months. So maybe my body is learning to live with it quicker since it gets it more often? Or maybe it's because I continue to take my prenatal vitamins? Who knows, everybody is different, boy am I learning that. Everyones experience is very different.
I'll post a pic of my chemo hair when the chemo cam posts - it's almost here, I promise, PJ is actually working on that right now. See - I really wanted to work on it, but the software is on his main computer which is in his office, which is in our garage. Now, I can tolerate a lot of things, bugs, are not one of them. I don't do the whole bug thing - I won't even pretend to. So when you are working in the garage at night, in the summer, in Arizona, you have to keep the doors open cuz it's frickin HOT in the evenings. Then all these bugs come in - and remember, I don't do bugs. So, PJ is working on the chemo cam software. Yay for him.
I got to experience another wonderful side effect that I thought I had already experienced, until today. I knew that nose bleeds were a side effect of the Avastin, and I've had minor ones here and there, mostly after I blow my nose to hard or something, made sense. Today however, was a whole new ballgame. I was just sitting in my girls room playing with Ginger when the second one hit, blood just came running out of my nose out of nowhere. I yelled for Madeline to bring me Kleenex, which she did, she is such a good helper to me - but this happened 3 times today - just out of nowhere. The last one this evening happened when I was cleaning the kitchen, I had to lean over the sink! It lasted for a good 10 minutes or so before I got it to stop. This, is really yukky. I'm going to call my dr in the am and just let her know for her records, this is probably totally normal, I've just never experienced something like this before, so it was a little freaky. Plus in front of my kids was a weird feeling too - although Madeline seemed more eager to help than be freaked out. She rocks.
On another note, I had 3 different friends today tell me things they were hesitant to because of what I'm going through. First off, I am so touched they were thinking of me - that, was a lovely gesture on their part. But what I realized was me being their friend was as much of a part of who I am as them being mine. Does that make sense? I want to show up for them, because that is what they deserve, just as I have deserved them showing up for me. Cancer or no cancer, I'm still Dina, and so want the 'normal friendship' I once shared with my friends. I don't want my friendships to just be about me and my cancer - because that is my life right now, yes, but everyone has their lives too, and even though they may not be experiencing cancer, thank God, they still have shitty things happen and awesome things happen. It's all relative - we all have crap we're dealing with - you can't put a grade on the crap - no ones is better or worse than then other, it's all just pretty much crap. I have to admit, I've lost a couple friendships over this, and I may not ever really know why, and that frustrates the shit out of me, because I ask 'why' a lot you see, way too much. But the ones I do have, and the new ones I've formed out of this, are so incredibly awesome, I can't even explain.
Then I realize, it's really hard for me to give like I gave before treatment - to give of myself to others, to help out, to volunteer, etc. Sometimes, I am trying so hard to remain like normal Dina, but it's hard. Before treatment I felt like there weren't enough hours in the day to get done everything I wanted to get done - now? I have trouble even remembering what I was supposed to do. I forget things, I feel like I'm moving through Jello some days - every day is different. It's so hard to be the 'mom on the go' with cancer. I just hope I can still be the friend to my friends that I was before cancer. I hope they want me to be. And by friends, I mean family too - some of my family members are my very best friends - who can say that with a straight face? I know treatment won't go on forever, I know this, but life doesn't stop just because Dina is in treatment (but wouldn't that be nice it it did, just for a day or so, give everyone the weekend off or something! I'd go buy a new hat I think!). In fact right now, I am very frustrated writing this - I can't seem to have a consistent stream of thought. Nor do I feel like I am expressing what I want to express in these words. Arg.
Well, I think I better cut my losses this evening. Madeline just came in all sleepy eyed and asked me about the horse in her bed (she is sleep walking here you see, something I can use when she is 16 or so and brings her boyfriend home to meet me) So I am going to go make sure she is snuggled all back in her bed now, and go to bed myself I think. Sleep is something that seems to cure just about everything with me, let's see if 'brain fart' is one of those things.
Thank you to Sarah for bringing me yummy dinner tonight, I always feel so much healthier when I eat your food - and SCORE on the wine, who knew organic wine would be the one wine I could actually taste - it was awesome.
God Bless -
I should post a picture of what my head looks like now - this is the strangest thing. I'm growing hair - not all over like normal, but a thin layer all over. And it's really super light - blondish white colored. I'm calling it my chemo hair. Seriously, it's long enough so when I take my scarf off it's all kind of lying down now in this weird pattern - I have serious scarf head. Maybe this is because my regime is so different from anyone I've met - I've already had more treatments than most have to endure. Most chemotherapy patients do it for 'preventative' reasons after surgery, so it's like 6 treatments 3 weeks apart. I go once a week for three weeks for 6-12 months. So maybe my body is learning to live with it quicker since it gets it more often? Or maybe it's because I continue to take my prenatal vitamins? Who knows, everybody is different, boy am I learning that. Everyones experience is very different.
I'll post a pic of my chemo hair when the chemo cam posts - it's almost here, I promise, PJ is actually working on that right now. See - I really wanted to work on it, but the software is on his main computer which is in his office, which is in our garage. Now, I can tolerate a lot of things, bugs, are not one of them. I don't do the whole bug thing - I won't even pretend to. So when you are working in the garage at night, in the summer, in Arizona, you have to keep the doors open cuz it's frickin HOT in the evenings. Then all these bugs come in - and remember, I don't do bugs. So, PJ is working on the chemo cam software. Yay for him.
I got to experience another wonderful side effect that I thought I had already experienced, until today. I knew that nose bleeds were a side effect of the Avastin, and I've had minor ones here and there, mostly after I blow my nose to hard or something, made sense. Today however, was a whole new ballgame. I was just sitting in my girls room playing with Ginger when the second one hit, blood just came running out of my nose out of nowhere. I yelled for Madeline to bring me Kleenex, which she did, she is such a good helper to me - but this happened 3 times today - just out of nowhere. The last one this evening happened when I was cleaning the kitchen, I had to lean over the sink! It lasted for a good 10 minutes or so before I got it to stop. This, is really yukky. I'm going to call my dr in the am and just let her know for her records, this is probably totally normal, I've just never experienced something like this before, so it was a little freaky. Plus in front of my kids was a weird feeling too - although Madeline seemed more eager to help than be freaked out. She rocks.
On another note, I had 3 different friends today tell me things they were hesitant to because of what I'm going through. First off, I am so touched they were thinking of me - that, was a lovely gesture on their part. But what I realized was me being their friend was as much of a part of who I am as them being mine. Does that make sense? I want to show up for them, because that is what they deserve, just as I have deserved them showing up for me. Cancer or no cancer, I'm still Dina, and so want the 'normal friendship' I once shared with my friends. I don't want my friendships to just be about me and my cancer - because that is my life right now, yes, but everyone has their lives too, and even though they may not be experiencing cancer, thank God, they still have shitty things happen and awesome things happen. It's all relative - we all have crap we're dealing with - you can't put a grade on the crap - no ones is better or worse than then other, it's all just pretty much crap. I have to admit, I've lost a couple friendships over this, and I may not ever really know why, and that frustrates the shit out of me, because I ask 'why' a lot you see, way too much. But the ones I do have, and the new ones I've formed out of this, are so incredibly awesome, I can't even explain.
Then I realize, it's really hard for me to give like I gave before treatment - to give of myself to others, to help out, to volunteer, etc. Sometimes, I am trying so hard to remain like normal Dina, but it's hard. Before treatment I felt like there weren't enough hours in the day to get done everything I wanted to get done - now? I have trouble even remembering what I was supposed to do. I forget things, I feel like I'm moving through Jello some days - every day is different. It's so hard to be the 'mom on the go' with cancer. I just hope I can still be the friend to my friends that I was before cancer. I hope they want me to be. And by friends, I mean family too - some of my family members are my very best friends - who can say that with a straight face? I know treatment won't go on forever, I know this, but life doesn't stop just because Dina is in treatment (but wouldn't that be nice it it did, just for a day or so, give everyone the weekend off or something! I'd go buy a new hat I think!). In fact right now, I am very frustrated writing this - I can't seem to have a consistent stream of thought. Nor do I feel like I am expressing what I want to express in these words. Arg.
Well, I think I better cut my losses this evening. Madeline just came in all sleepy eyed and asked me about the horse in her bed (she is sleep walking here you see, something I can use when she is 16 or so and brings her boyfriend home to meet me) So I am going to go make sure she is snuggled all back in her bed now, and go to bed myself I think. Sleep is something that seems to cure just about everything with me, let's see if 'brain fart' is one of those things.
Thank you to Sarah for bringing me yummy dinner tonight, I always feel so much healthier when I eat your food - and SCORE on the wine, who knew organic wine would be the one wine I could actually taste - it was awesome.
God Bless -
Tuesday, July 28, 2009
Title
It finally occurred to me today, the last time I had all these medications was when I completely broke down in front of that poor church lady who came to visit me. Ya know, now that I think of it, I haven't heard from her again. In any case, I remembered that this particular concoction of drugs took me about 5 days to recover from. Didn't feel real great again today, and a new side effect to add to the bag of tricks, is night sweats. Yes, they warned me chemotherapy could possibly send me into early menopause, and I believe this is exactly what is happening to me. We all know how much I LOVE sweating anyway, so this is just a real treat. So now, I'm taking 2 showers a day and changing my pillowcases daily. I know, you're jealous.
I did break down and cry this time too, only this time it was at my prayer circle. Thank you God for this, such a safe place for me to be, and share, and let go. I am so blessed to have this place and these people to go to each week. I've been a bit worn out about everything this past week - and just needed to let it out then let it go. My thanks to my lava lamp, otherwise known as Pastor Mary, and all my prayer warriors. Lisa, who seems to always know where I'm coming from without me having to speak a word, and of course my Jennifer. Jennifer said something remarkable to me today when I was leaving, she said that Thank God I didn't know about my breast cancer until after I had Ginger, because if I had known sooner, I never would have gotten pregnant. I never thought of this before, but she is exactly right. What a gift I have been given. And thank you Jennifer, for reminding me of just how precious my Ginger is. God certainly knew what he was up to.
Tonight has been a transition night for me - usually I am anxious in my off weeks because by not having my weekly treatment, I don't feel like I'm actively doing anything to fight this thing. This week, not in such a hurry to get back in there. I'm slowly building my momentum back up to start the next half of this fight next week. I'm getting there. Sometimes the side effects just get to me, they frustrate me, they piss me off, they make me cry, they tear me down, they give me pain like I've never felt before, they wear me out, they play on every insecurity I've ever had about myself. But then I remember what's really important - and I move on. I am allowing myself to experience all these feelings - because they are all very real feelings. Some people like to try to tell me how to feel - or like Pastor Mary says "Don't let people 'should' all over you". People 'should' all over me quite a bit - but these are my feelings, I own them, I feel them, I express them, then I plow right through it. See, I'm a big girl, I know when I'm being whimpy or whinny, I don't let myself stay there for long - but I let myself be that way if I need to.
I need to share with you something one of my dear friends in NY shared with me this morning, talking on this very subject - this is just an amazing expression of thought:
I would not wish what you’re going through on anybody Dina, truly. But don’t you think that everyone should go through SOME form of adversity? Just to gain the gift of knowing? Knowing that nothing is really in our control ultimately, but that it’s OK? I know it may sound a bit corny, but the whole idea of life is NOT to run through the maze searching madly for that piece of cheese and getting it, out of breath and frantic, but learning nothing of how we got there? WALK through, enjoy the journey (even if you are hungry), because “we may not be back this way again”?
Absolutely beautifully expressed. In fact, PJ and I were thinking about just this last night - wishing it didn't take what we are dealing with to give us the eyes we have now.
So I walk - at times hungry, very hungry, and enjoy this journey - it has already brought me so much beauty.
Thank you all who continue to pray for me and send me good vibes. I really needed it this week.
I'm getting all sweaty now, gotta go ;-)
God Bless -
I did break down and cry this time too, only this time it was at my prayer circle. Thank you God for this, such a safe place for me to be, and share, and let go. I am so blessed to have this place and these people to go to each week. I've been a bit worn out about everything this past week - and just needed to let it out then let it go. My thanks to my lava lamp, otherwise known as Pastor Mary, and all my prayer warriors. Lisa, who seems to always know where I'm coming from without me having to speak a word, and of course my Jennifer. Jennifer said something remarkable to me today when I was leaving, she said that Thank God I didn't know about my breast cancer until after I had Ginger, because if I had known sooner, I never would have gotten pregnant. I never thought of this before, but she is exactly right. What a gift I have been given. And thank you Jennifer, for reminding me of just how precious my Ginger is. God certainly knew what he was up to.
Tonight has been a transition night for me - usually I am anxious in my off weeks because by not having my weekly treatment, I don't feel like I'm actively doing anything to fight this thing. This week, not in such a hurry to get back in there. I'm slowly building my momentum back up to start the next half of this fight next week. I'm getting there. Sometimes the side effects just get to me, they frustrate me, they piss me off, they make me cry, they tear me down, they give me pain like I've never felt before, they wear me out, they play on every insecurity I've ever had about myself. But then I remember what's really important - and I move on. I am allowing myself to experience all these feelings - because they are all very real feelings. Some people like to try to tell me how to feel - or like Pastor Mary says "Don't let people 'should' all over you". People 'should' all over me quite a bit - but these are my feelings, I own them, I feel them, I express them, then I plow right through it. See, I'm a big girl, I know when I'm being whimpy or whinny, I don't let myself stay there for long - but I let myself be that way if I need to.
I need to share with you something one of my dear friends in NY shared with me this morning, talking on this very subject - this is just an amazing expression of thought:
I would not wish what you’re going through on anybody Dina, truly. But don’t you think that everyone should go through SOME form of adversity? Just to gain the gift of knowing? Knowing that nothing is really in our control ultimately, but that it’s OK? I know it may sound a bit corny, but the whole idea of life is NOT to run through the maze searching madly for that piece of cheese and getting it, out of breath and frantic, but learning nothing of how we got there? WALK through, enjoy the journey (even if you are hungry), because “we may not be back this way again”?
Absolutely beautifully expressed. In fact, PJ and I were thinking about just this last night - wishing it didn't take what we are dealing with to give us the eyes we have now.
So I walk - at times hungry, very hungry, and enjoy this journey - it has already brought me so much beauty.
Thank you all who continue to pray for me and send me good vibes. I really needed it this week.
I'm getting all sweaty now, gotta go ;-)
God Bless -
Monday, July 27, 2009
Chemo Can't Kill Acne???
You'd think, despite all that one's body must endure going through chemotherapy, that perhaps you would be alleviated, at least through treatment, of the occasional blemish. But nooooooo, I have this bulbous red nose right now from a blemish. I complained to PJ this morning while I was putting on my make-up, "You'd think chemo would kill a couple zits since it's killing everything else!" and he replied "Nope, zits are like the cockroaches of your face - nothing kills them." Well, isn't that a lovely mental picture. My man, I love him.
PJ and I took Madeline to the movies this morning, and had a wonderful time. It was weird just being the 3 of us out, but a nice change too - a chance to give Madeline some one on one time. Then we had to drop off some remaining paperwork to Social Security. PJ and I had some great moments today. Funny, last post I mentioned we were kinda in our separate corners throughout the weekend. I think sometimes you need to separate for a minute to become closer. That's what happened to us today. Although we had normal days, we had some of the most intense, sporadic conversations. We talked about how blessed we are, that we live here, that we have such a network of friends and community around us supporting us, that our family is so incredibly wonderful and loving. We couldn't imagine doing this in NY - there is no way we would have this journey in NY. Not even close. (not knocking NY here, just choosing this journey through cancer over another potential journey is all - want to be clear to my fellow NY'ers) We talked about how we see so many things differently now, clearer, things mean more, certain things mean way less - that kind of stuff - and how some people have risen to the top as really getting it and showing up for us in ways we couldn't even imagine, and others we thought would show up for us quickly dashed out the back door. Then we talked about how if we could, would we trade all this back for not having this cancer - and sometimes, truthfully and honestly, we want to - but mostly, no. Who we are now, is who we were meant to become - and that continues to grow.
I had an emotional moment this too, really out of nowhere - once we got the kids to bed I headed to the bedroom quite quickly. I've been feeling really claustrophobic lately, and just had to change into my pajamas. My breasts have just been feeling, well, different lately. Like they don't fit my body - they just don't feel the same - and this must be the changes the Taxol is doing to me. My OB told me it was clear to him that estrogen has pretty much stopped in my body due to the chemotherapy, he could tell. (how I will not go into, but interesting to know). I stood there in the mirror and looked at my chest, scarring from the excisional biopsy on my right breast, my port and the tube you can clearly see outlined on my skin on the left side, and I just stared at my breasts - they looked pretty much the same, despite the above. But they don't feel the same - on the inside. I don't think I can really explain this the way I'm feeling - funny, that seems to be happening a lot during this process for me, and I always thought I was pretty good at expressing myself. They just feel, different. And I just cried - PJ came in and just held me - told me he loved me, and that he wasn't going anywhere - that he would always be right by my side. My body is just changing, and it feels different and weird and I can't control it and that is frustrating and scary to me all at the same time. It's like, you never knew your breasts felt any certain or particular way at all until they suddenly didn't feel that way anymore. It's so unsettling to me, a period of adjustment I suppose. Another one.
My husband is my best friend. He is the one person I always want to hang out with, the one I tell everything to, the one I laugh with, the one who not only do I cry with, but who cries right along with me, the one who lifts me up. We had the best night of talking tonight in a long time. It's true again, just when you think you can't get any closer to someone, you do - and it's amazing. My husband also told me tonight that I was the light of spirituality in our family that draws them all in, near and dear to God. I told him I don't much feel like a light very often, but he dismissed this comment. My family is my blessing - that is all I know.
I want to close with a line from an article PJ read to me this evening from Men's Health (hey, at least we're READING about people who exercise). This article was about a man and woman who had everything they could have ever dreamed, $$, Manhattan apt, kush jobs - then lost it all - and found out now that they are living with their parents, they were really hadn't lost that much at all, and had gained immensely in family and personal relationships. I know it sounds cliche, but the end of the article really hit home for me - it read:
Adversity, when embraced, tenders gifts - never the ones we want, but often the ones we need.
What this cancer has produced in me are gifts indeed. Although, sometimes embracing this feels like I'm wrapping my arms around a porcupine, but I guess even a porcupine has the ability to relax its quills. Timing, its all in the timing.
Thank you all for your continued prayers and good vibes -
God Bless -
PJ and I took Madeline to the movies this morning, and had a wonderful time. It was weird just being the 3 of us out, but a nice change too - a chance to give Madeline some one on one time. Then we had to drop off some remaining paperwork to Social Security. PJ and I had some great moments today. Funny, last post I mentioned we were kinda in our separate corners throughout the weekend. I think sometimes you need to separate for a minute to become closer. That's what happened to us today. Although we had normal days, we had some of the most intense, sporadic conversations. We talked about how blessed we are, that we live here, that we have such a network of friends and community around us supporting us, that our family is so incredibly wonderful and loving. We couldn't imagine doing this in NY - there is no way we would have this journey in NY. Not even close. (not knocking NY here, just choosing this journey through cancer over another potential journey is all - want to be clear to my fellow NY'ers) We talked about how we see so many things differently now, clearer, things mean more, certain things mean way less - that kind of stuff - and how some people have risen to the top as really getting it and showing up for us in ways we couldn't even imagine, and others we thought would show up for us quickly dashed out the back door. Then we talked about how if we could, would we trade all this back for not having this cancer - and sometimes, truthfully and honestly, we want to - but mostly, no. Who we are now, is who we were meant to become - and that continues to grow.
I had an emotional moment this too, really out of nowhere - once we got the kids to bed I headed to the bedroom quite quickly. I've been feeling really claustrophobic lately, and just had to change into my pajamas. My breasts have just been feeling, well, different lately. Like they don't fit my body - they just don't feel the same - and this must be the changes the Taxol is doing to me. My OB told me it was clear to him that estrogen has pretty much stopped in my body due to the chemotherapy, he could tell. (how I will not go into, but interesting to know). I stood there in the mirror and looked at my chest, scarring from the excisional biopsy on my right breast, my port and the tube you can clearly see outlined on my skin on the left side, and I just stared at my breasts - they looked pretty much the same, despite the above. But they don't feel the same - on the inside. I don't think I can really explain this the way I'm feeling - funny, that seems to be happening a lot during this process for me, and I always thought I was pretty good at expressing myself. They just feel, different. And I just cried - PJ came in and just held me - told me he loved me, and that he wasn't going anywhere - that he would always be right by my side. My body is just changing, and it feels different and weird and I can't control it and that is frustrating and scary to me all at the same time. It's like, you never knew your breasts felt any certain or particular way at all until they suddenly didn't feel that way anymore. It's so unsettling to me, a period of adjustment I suppose. Another one.
My husband is my best friend. He is the one person I always want to hang out with, the one I tell everything to, the one I laugh with, the one who not only do I cry with, but who cries right along with me, the one who lifts me up. We had the best night of talking tonight in a long time. It's true again, just when you think you can't get any closer to someone, you do - and it's amazing. My husband also told me tonight that I was the light of spirituality in our family that draws them all in, near and dear to God. I told him I don't much feel like a light very often, but he dismissed this comment. My family is my blessing - that is all I know.
I want to close with a line from an article PJ read to me this evening from Men's Health (hey, at least we're READING about people who exercise). This article was about a man and woman who had everything they could have ever dreamed, $$, Manhattan apt, kush jobs - then lost it all - and found out now that they are living with their parents, they were really hadn't lost that much at all, and had gained immensely in family and personal relationships. I know it sounds cliche, but the end of the article really hit home for me - it read:
Adversity, when embraced, tenders gifts - never the ones we want, but often the ones we need.
What this cancer has produced in me are gifts indeed. Although, sometimes embracing this feels like I'm wrapping my arms around a porcupine, but I guess even a porcupine has the ability to relax its quills. Timing, its all in the timing.
Thank you all for your continued prayers and good vibes -
God Bless -
Sunday, July 26, 2009
A Shot of Optimism Please - Hold the Lime
This weekend has been exactly what we wanted - hibernation. Which is always a double edged sword with me - I want to hibernate and be quiet, then once I'm quiet, I can't sit still. Aaarrrggg - aggravating. Unfortunately, I've pretty much felt like crap all weekend. Achy, feverish, and this intense bone pain in my sternum and lower hip area, all very typical side effects of all the drugs they gave me last week. This time, it seems to tease me though. I will start to feel better, then BAM - start feeling shitty - then start to feel better, then BAM - you get the picture. And, it seems to happen when I am playing with my girls, which is REALLY frustrating. So we can add a layer of anger on top of this, how delightful. PJ and I kinda were in our separate corners this weekend as well, something I'm always caught off guard by when it happens, but understand it is needed in our relationship. I mean, we are together ALL THE TIME - literally. I'm sure he wants to just pull what's left of his hair out at times too - bless his heart. I like to think I'm an easy patient, but, everyone thinks they're that way - and well, you do the math.
I had meant to share a story that happened to me when Hailee was here - this is so funny. Since I've been in treatment, I've found myself really drawn to this body spray made by Bath and Body Works - it's from their aromatherapy selection called Eucalyptus Spearmint and it's known for it's "Relax" functionality, as far as aromatherapy goes. I had this since Madeline was born actually, to scent the room when we thought we were going to have her the 'natural' way - then we found out she was 9lb 4 oz 2 weeks before my due date - needless to say, natural childbirth was no longer on my list of things to do. In any case, I found this stuff under my sink and was really drawn to it since I started chemo, and I had noticed I was running low. So, I went to the mall to purchase more. Now, I'm sure I'm not the only one this happens to, but whenever I seem to like anything at Bath and Body Works, they discontinue it. But this scent I know I had seen for some time, because they make a hand soap as well, and I had recently bought some of that. So here I go to purchase some more of this body spray - and guess what - they've discontinued the body spray. (but they are now making the pillow mist, which they discontinued years ago but it has now reappeared - ??) I am extremely frustrated. Now the saleslady tells me that they have discontinued ALL the body sprays for the aromatherapy line - WHA? 'You mean everything!?" I ask incredulously. "Yes, all but one" she says to me. "Really, well which one are you carrying?" No lie - she says to me "This one, it's called Optimism". You're frickin kidding me, right? Well, I'm not an idiot - of course I'm going to buy a bottle of Optimism, wouldn't you? And ya know what, it doesn't smell half bad. Kinda flowery, but pretty. PJ likes it - that's good. To funny. If that wasn't a sign, I don't know what was. Now, I feel compelled to wear it all the time, like I'm committing some sort of 'aromatherapy bad karma' if I don't. Maybe that's the whole point? - Arg! They got me!
I've found myself quiet this weekend, like I wanted to be. And I think I was hoping for some answers or revelations, but none came. I wanted to know why I met my friend who passed this week - what was the purpose of this short lived friendship - to scare me? To make me fight harder? To open my eyes even further to this disease? I don't know. Then I thought of my childhood friend who took his own life this week - and wondered what that was supposed to teach me - or anyone - especially his family. I have such mixed emotions about that scenario - I switch from anger to grief and back and forth. I guess when you believe that everything happens for a reason, you also need to remember that the reason may not be revealed right away. It may take time to play out. Problem is, I'm not real patient when it comes to these things, so I need to pray for patience, and a clear heart to recognize it when it is revealed. Sometimes I think we can be so clouded by bullshit we don't see the message. And I need to see the message. These events are too vivid in my heart to not have some sort of intention revealed to me. And, please know, this is not about ME, I fully understand that - I want to see the message revealed, whomever it may concern, if that makes any sense.
My husband and I are going to take Madeline to her last summer movie tomorrow morning. I'm so excited to do this. Just the 3 of us. And, sorry to say the 'chemo cam' is delayed a bit - we've got all the footage off the camera, now I just need to take the time to learn this new software and edit this sucker down so you aren't sitting there watching like, 2 hours of me snoring on my pre-meds. So - we'll get it up this week for sure, just not sure when this week.
I can't thank you all enough for reading, for praying, for sending me good vibes - all that good stuff. Again, it is indeed working. Here's to my off week - no chemo, no blood work, no nothing this week - LET THE PLAYDATES COMMENCE!!! I love being Madeline and Ginger's mommy. :-)
God Bless -
I had meant to share a story that happened to me when Hailee was here - this is so funny. Since I've been in treatment, I've found myself really drawn to this body spray made by Bath and Body Works - it's from their aromatherapy selection called Eucalyptus Spearmint and it's known for it's "Relax" functionality, as far as aromatherapy goes. I had this since Madeline was born actually, to scent the room when we thought we were going to have her the 'natural' way - then we found out she was 9lb 4 oz 2 weeks before my due date - needless to say, natural childbirth was no longer on my list of things to do. In any case, I found this stuff under my sink and was really drawn to it since I started chemo, and I had noticed I was running low. So, I went to the mall to purchase more. Now, I'm sure I'm not the only one this happens to, but whenever I seem to like anything at Bath and Body Works, they discontinue it. But this scent I know I had seen for some time, because they make a hand soap as well, and I had recently bought some of that. So here I go to purchase some more of this body spray - and guess what - they've discontinued the body spray. (but they are now making the pillow mist, which they discontinued years ago but it has now reappeared - ??) I am extremely frustrated. Now the saleslady tells me that they have discontinued ALL the body sprays for the aromatherapy line - WHA? 'You mean everything!?" I ask incredulously. "Yes, all but one" she says to me. "Really, well which one are you carrying?" No lie - she says to me "This one, it's called Optimism". You're frickin kidding me, right? Well, I'm not an idiot - of course I'm going to buy a bottle of Optimism, wouldn't you? And ya know what, it doesn't smell half bad. Kinda flowery, but pretty. PJ likes it - that's good. To funny. If that wasn't a sign, I don't know what was. Now, I feel compelled to wear it all the time, like I'm committing some sort of 'aromatherapy bad karma' if I don't. Maybe that's the whole point? - Arg! They got me!
I've found myself quiet this weekend, like I wanted to be. And I think I was hoping for some answers or revelations, but none came. I wanted to know why I met my friend who passed this week - what was the purpose of this short lived friendship - to scare me? To make me fight harder? To open my eyes even further to this disease? I don't know. Then I thought of my childhood friend who took his own life this week - and wondered what that was supposed to teach me - or anyone - especially his family. I have such mixed emotions about that scenario - I switch from anger to grief and back and forth. I guess when you believe that everything happens for a reason, you also need to remember that the reason may not be revealed right away. It may take time to play out. Problem is, I'm not real patient when it comes to these things, so I need to pray for patience, and a clear heart to recognize it when it is revealed. Sometimes I think we can be so clouded by bullshit we don't see the message. And I need to see the message. These events are too vivid in my heart to not have some sort of intention revealed to me. And, please know, this is not about ME, I fully understand that - I want to see the message revealed, whomever it may concern, if that makes any sense.
My husband and I are going to take Madeline to her last summer movie tomorrow morning. I'm so excited to do this. Just the 3 of us. And, sorry to say the 'chemo cam' is delayed a bit - we've got all the footage off the camera, now I just need to take the time to learn this new software and edit this sucker down so you aren't sitting there watching like, 2 hours of me snoring on my pre-meds. So - we'll get it up this week for sure, just not sure when this week.
I can't thank you all enough for reading, for praying, for sending me good vibes - all that good stuff. Again, it is indeed working. Here's to my off week - no chemo, no blood work, no nothing this week - LET THE PLAYDATES COMMENCE!!! I love being Madeline and Ginger's mommy. :-)
God Bless -
Friday, July 24, 2009
You Can't Juggle On Chemo
I woke up this morning expecting to feel shitty, and surprisingly didn't - I was tired, but not sick feeling. So this was hopeful I thought. I thought about calling Nancy and telling her not to come over, but didn't. She came and I went back to bed as soon as she arrived, and seemed to sleep most of the day. Woke up around 2pm and felt good enough to send her home, then about an hour later, the achy feverish feeling started. This usually happens in the mornings when I wake up on Fri, so it was a little surprising to have it happen this late in the day, but as I continue through this process, nothing seems to stay the same, the experience is never the same, the way I feel never seems to repeat itself exactly as it happened the previous time. Strange. One thing that is consistent is the yukky taste in my mouth - I am constantly drinking water trying to wash this away, which is good too I guess.
PJ came in from working and I went back to bed for a bit, then he and the girls woke me up for dinner. Thank you Joanna for pizza, it certainly hit the spot tonight, and easy clean up was even more of a joy for me this evening. Thank you.
So I spent most of my day in my bedroom today, I have my desk and my computer in my bedroom, and when I haven't worked on my computer for a time, it defaults to start flashing through all the pics on my hard drive - which is a various array of things. I have come to terms in seeing myself before this fight - me with the long hair, the 'normalcy' of things it seemed, or as it can seem in pictures. I mean, don't you have those pictures you look at of yourself and you can remember exactly what was going on 'behind' the smile in certain pics? A strange exchange with someone, a small quarrel with your significant other, an inside joke that was shared just before the picture was taken, those types of things. I notice these things in pictures. And for the longest time, I was sad when I looked at these pictures, but now, I look at them and I just feel like I don't hardly know who that person is any more - and it was only 4 months ago! Not only do I look completely different now, I feel so completely different now. And I don't find myself particularly sad about this, not really. But, today, I looked at the pictures of PJ, and I realized today that he looks different now too - despite the fact that he shaves his head for me, those physical changes are obvious, but he too is a completely different person. We talked about this, that when you are just going on in life, you set these goals for yourselves, simple things like home improvement, major purchases, child rearing - those kinds of goals. The personal growth stuff you don't seem to plan on, do you? Then something like this happens, and the person next to you that you chose as your life partner, that you thought you couldn't ever be closer to, suddenly gets that much closer to you, and your relationship takes on a whole new light, raised to a whole new level. I know this doesn't happen to all people, and do not be fooled, I thank God every day for my husband - I was meant to meet him when I did, and live my life with him by my side, he is a gift to me. It's just really cool to know what once you think you've achieved the most, you get a 'bonus boost' in your relationship so to speak, and, well, so it took cancer to get it, what a blessing that is anyway, right? I mean without cancer, we wouldn't even know this level in our relationship. So as much as it saddens me to look at those pictures of him before this all went down and to almost covet the naivety on his face, on both of our faces, it blesses me to know the knowledge and understanding on each of our faces in current pictures. What we know now, is priceless.
I am going to try to call in an early night tonight. I have to say, it is the weirdest feeling to sleep all day - it brings me back to those days in my early 20's when you'd sleep till like, noon on Sat - I feel all lazy and loser-like - then I think, well, I won't be able to fall asleep tonight now, but I do. Sleep just seems to be the remedy for me, which isn't all bad. Thank God I have the people around me that allow me to do this with 2 young children. Thank God. I'm certainly not getting better all on my own, this is most definitely a group effort. It takes me, of course, but it takes God, my family, my friends, my church, my doctors, everyone who reads my blog, everyone who prays for me, everyone I don't know who holds me up in prayer - we thank all these people every night as a family when we say grace before dinner. Every night. Can you believe, little Ginger in her high chair, folds her little 15 month hands when we pray, is quiet while we pray (and she's not quiet very often) then says 'Amen' with her own unique intonation, when we're done. What my children are learning about people, about humanity, about goodness, and about God is immeasurable. Simply immeasurable.
I'm going into hibernation for the weekend, so please have a good one everyone. Going to have the remainder of the homemade ice cream then go to bed. My mommy made me homemade chocolate ice cream with white chocolate chips for my b-day last weekend. Tell me I'm not spoiled!
God Bless -
PJ came in from working and I went back to bed for a bit, then he and the girls woke me up for dinner. Thank you Joanna for pizza, it certainly hit the spot tonight, and easy clean up was even more of a joy for me this evening. Thank you.
So I spent most of my day in my bedroom today, I have my desk and my computer in my bedroom, and when I haven't worked on my computer for a time, it defaults to start flashing through all the pics on my hard drive - which is a various array of things. I have come to terms in seeing myself before this fight - me with the long hair, the 'normalcy' of things it seemed, or as it can seem in pictures. I mean, don't you have those pictures you look at of yourself and you can remember exactly what was going on 'behind' the smile in certain pics? A strange exchange with someone, a small quarrel with your significant other, an inside joke that was shared just before the picture was taken, those types of things. I notice these things in pictures. And for the longest time, I was sad when I looked at these pictures, but now, I look at them and I just feel like I don't hardly know who that person is any more - and it was only 4 months ago! Not only do I look completely different now, I feel so completely different now. And I don't find myself particularly sad about this, not really. But, today, I looked at the pictures of PJ, and I realized today that he looks different now too - despite the fact that he shaves his head for me, those physical changes are obvious, but he too is a completely different person. We talked about this, that when you are just going on in life, you set these goals for yourselves, simple things like home improvement, major purchases, child rearing - those kinds of goals. The personal growth stuff you don't seem to plan on, do you? Then something like this happens, and the person next to you that you chose as your life partner, that you thought you couldn't ever be closer to, suddenly gets that much closer to you, and your relationship takes on a whole new light, raised to a whole new level. I know this doesn't happen to all people, and do not be fooled, I thank God every day for my husband - I was meant to meet him when I did, and live my life with him by my side, he is a gift to me. It's just really cool to know what once you think you've achieved the most, you get a 'bonus boost' in your relationship so to speak, and, well, so it took cancer to get it, what a blessing that is anyway, right? I mean without cancer, we wouldn't even know this level in our relationship. So as much as it saddens me to look at those pictures of him before this all went down and to almost covet the naivety on his face, on both of our faces, it blesses me to know the knowledge and understanding on each of our faces in current pictures. What we know now, is priceless.
I am going to try to call in an early night tonight. I have to say, it is the weirdest feeling to sleep all day - it brings me back to those days in my early 20's when you'd sleep till like, noon on Sat - I feel all lazy and loser-like - then I think, well, I won't be able to fall asleep tonight now, but I do. Sleep just seems to be the remedy for me, which isn't all bad. Thank God I have the people around me that allow me to do this with 2 young children. Thank God. I'm certainly not getting better all on my own, this is most definitely a group effort. It takes me, of course, but it takes God, my family, my friends, my church, my doctors, everyone who reads my blog, everyone who prays for me, everyone I don't know who holds me up in prayer - we thank all these people every night as a family when we say grace before dinner. Every night. Can you believe, little Ginger in her high chair, folds her little 15 month hands when we pray, is quiet while we pray (and she's not quiet very often) then says 'Amen' with her own unique intonation, when we're done. What my children are learning about people, about humanity, about goodness, and about God is immeasurable. Simply immeasurable.
I'm going into hibernation for the weekend, so please have a good one everyone. Going to have the remainder of the homemade ice cream then go to bed. My mommy made me homemade chocolate ice cream with white chocolate chips for my b-day last weekend. Tell me I'm not spoiled!
God Bless -
Thursday, July 23, 2009
What A Mixed Bag of Tricks
I woke up this morning and immediately went to check my email. I never do this. Something made me check it early this am. It was about 7 am. I saw an email from my friends husband who I mentioned in my last post - I had emailed them to see if we could come and visit. It seems now I was too late. My friend passed on Monday. She had triple negative breast cancer and she was in her early thirties. I am in tears at 7am on a Thurs morning. I know I only knew her a short time, but she touched my life - I connected with her in a way that is hard to describe. My doctor had told me when she had seen her just last week, she wanted her to tell me that she was so glad she met me, and that I was part of her journey. How precious is this gift? That she wished to send a message to me, someone she didn't know for very long either, a message, knowing we would never see each other again. Amazing, powerful, humbling, sad, and absolutely crushing. I know it is not for us to know 'why' - but I find myself wanting to know - why - why her - why did she get triple negative and I didn't - why did she not get to have children and I did - why why why. I do find peace in knowing she is not hurting anymore. The last time I saw her and she was having the reaction to her treatment, I could just see the fear on her face, and I was so compelled to somehow, someway take this fear away from her. I can't imagine the fear of your body reacting in ways you don't understand, and in ways you can't control. I mean, I kinda have a sense of that, but my fight isn't nearly what hers was. I can't imagine having something running wild with such a death vengeance through your body, how scary that must have been for her. It makes me cry every time I think about it. Her husband did say that she spent her last week with all of her family and friends around, eating all of her favorite foods. That, brought me peace. Who would want to go that way - surrounded by the people you love, with a wonderfully satisfied and full belly. Sounds almost heavenly. He also told me to keep fighting. I will keep fighting, for her, for me, and for everyone else with this bitch of a disease. At the risk of sounding completely infantile, it's just not fair. Please keep her family and friends in your prayers.
Needless to say, this week has run the gamut of emotions for me. PJ and I are in 'surreal' mode - we are laughing one minute and crying the next.
My doctor had given me some #'s regarding the mass removed from my right breast from the excisional biopsy - she measures this area every visit, and they believe all this is simply scar tissue from the surgery at this point, but it has shrunk from 4 x 3.85 on 5/27 to 2 x 1.7 on Wed, 7/22. Amazing. How blessed am I - this shit is really working, and it's working fast. They even used the "R" word for me when I'm off chemo (remission) as they would then place me on hormonal therapy - but I would continue the calcium treatments once a month to ensure my bones stay strong. Even though the cancer would no longer be 'active' in my bones, it still did it's damage in weakening my bones, so best to keep the calcium flowing. We're not sure if we are going to have another scan in Aug or not, my doctor says we will play it by ear. Fair enough. I need to just enjoy this news. As hard as that has been this week.
I wore my wig out this evening, totally spur of the moment. It felt kinda nice to 'blend in' for a change, but funny enough - I felt like I was hiding something. Isn't that funny? Like I was trying to pull one over on everyone. Madeline said "mommy, do you have a wig on your hair? Can I touch it?" Which of course I let her do, then she said "Is it real? You look very pretty with your new hair mom." Ginger would just look at me, she'd look at my face, then at my hair, then at my face, then at my hair - back and forth - kinda confused - it was very funny. We'll see how often this happens again, it was really weird.
I'm looking forward to a quiet weekend, resting and just being with my family. We need to regroup a bit here at the Mountcastle House. We haven't had a weekend to ourselves in a month now, and it's time. I think we're just going to hibernate this weekend, kinda shut the world away.
I wish I had more insight this evening, more things to say, but to be honest, I'm just kinda numb. I'm tired, starting to not feel real great, and with the gamut of emotions that has gone on this week, I think I just need to be quiet and still. Does that make sense? So that is what I'm going to do - go be quiet and still, and see if that helps.
I thank you all again for your prayers. They are certainly working. Thank you for your prayers for my friend. I miss her already.
God Bless -
Needless to say, this week has run the gamut of emotions for me. PJ and I are in 'surreal' mode - we are laughing one minute and crying the next.
My doctor had given me some #'s regarding the mass removed from my right breast from the excisional biopsy - she measures this area every visit, and they believe all this is simply scar tissue from the surgery at this point, but it has shrunk from 4 x 3.85 on 5/27 to 2 x 1.7 on Wed, 7/22. Amazing. How blessed am I - this shit is really working, and it's working fast. They even used the "R" word for me when I'm off chemo (remission) as they would then place me on hormonal therapy - but I would continue the calcium treatments once a month to ensure my bones stay strong. Even though the cancer would no longer be 'active' in my bones, it still did it's damage in weakening my bones, so best to keep the calcium flowing. We're not sure if we are going to have another scan in Aug or not, my doctor says we will play it by ear. Fair enough. I need to just enjoy this news. As hard as that has been this week.
I wore my wig out this evening, totally spur of the moment. It felt kinda nice to 'blend in' for a change, but funny enough - I felt like I was hiding something. Isn't that funny? Like I was trying to pull one over on everyone. Madeline said "mommy, do you have a wig on your hair? Can I touch it?" Which of course I let her do, then she said "Is it real? You look very pretty with your new hair mom." Ginger would just look at me, she'd look at my face, then at my hair, then at my face, then at my hair - back and forth - kinda confused - it was very funny. We'll see how often this happens again, it was really weird.
I'm looking forward to a quiet weekend, resting and just being with my family. We need to regroup a bit here at the Mountcastle House. We haven't had a weekend to ourselves in a month now, and it's time. I think we're just going to hibernate this weekend, kinda shut the world away.
I wish I had more insight this evening, more things to say, but to be honest, I'm just kinda numb. I'm tired, starting to not feel real great, and with the gamut of emotions that has gone on this week, I think I just need to be quiet and still. Does that make sense? So that is what I'm going to do - go be quiet and still, and see if that helps.
I thank you all again for your prayers. They are certainly working. Thank you for your prayers for my friend. I miss her already.
God Bless -
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