He was. He was checkin out my new rack. It was pretty awesome I must say. And I have finally embraced the need to NOT wear a bra - I mean, I don't need one. At all. If I'm wearing white, yes, mostly cuz you can sort of see my scars across the top - but for the most part, I'm braless. It's pretty cool. I also went through a spell recently of no underwear, but I have since corrected that. Not sure where I thought I was going with that train of thought, but it didn't end up in a productive place at ALL. That's all I'll say about that.
So I encounter one of the employees at the Y today and once I hear her comment I realize that I am wearing one of my cancer t-shirts. These have become great workout shirts now, and I just forget that I'm wearing them. In any case, I'm wearing a black t-shirt that says "Imagine A World Without Cancer - save the TaTa's' and the woman laughs and says "I've got to get one of those for my sister, save the tatas, that's funny". Now, I know she didn't mean anything by it, but I was suddenly pissed off. More so than my usual constant 'pissed off' ness. I give her the preverbial half smile and a little 'hmm' under my breath and proceed to take my lovely children to their prospective areas while I work out. I examine this reaction of mine while on the elliptical and wonder where my sense of 'cancer cordiallity' has gone. I used to greet everyone with a smile and consistently have that underlying 'don't mess with me cancer!' attitude - where has that gone? Now I just want everyone who doesn't know me to just leave me alone. Guess I better stop wearing these t-shirts because they do, among other thing, invite conversation with people I may not want to have 'cancer exchanges' with right now. I mean, the fight is still there, I don't believe I've lost that, I just can't shake this 'pissed off' feeling. I remember expressing this right when I was diagnosed and someone told me from the Advanced Breast Cancer website that I would always be pissed off, that would never go away. I think she was right. It just morphs into different degrees of 'pissed off' ness - and I seem to be at a high at this point. I know in my heart it is doing me no good, no good at all to stay in this toxic place. I need to look forward and move forward - all this looking back and what I WISH I had is not doing me any good. Boy that is hard to do sometimes.
My good friend gave me some awsome advice last night - she said I need to be super picky about what I let into my life, because stressful things will just distract me from this fight which, much like the 'chess game', requires focus, attention, and all the strength I can muster. Anything I invite in or try to entertain that takes away from that is toxic - I have to avoid stress as much as possible or it will completely give in to this disease. Life in general can be stressful, I know this - but being aware of this 'filter' can be really beneficial. I believe this. My 'attitude' is one of these things, and I need to work on it. I think I just need to start praying about it - because I haven't been able to tackle this on my own. I've been in this frame of mind for over a week now and it's exhausting.
I know I need to just cry about this too - as silly as that may sound. Maybe I'm in pissed off mode because I haven't allowed myself to just cry about this. Believe it or not, I haven't had time to do this - I need to schedule my emotional breakdown - spoken like a true mother of two - right? I know me, and I know I just need to cry. Spend some time crying and praying can do wonders for me.
Well, enough for now - Ginger just woke up so I am off to mother her. Thank you Jesus.
God Bless -
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Tuesday, June 29, 2010
Thursday, June 24, 2010
Who do I sue for Cancer Harassment?
Ya know - it's funny. I think I really thought, subconsciously, that I would go through a bunch of really heavy crap with this, it would then either be gone or not - and it turned out to be gone, thank you Jesus, then I would take my new founded enlightened view of life and live it. I didn't think this would be a continuous fight - and I'm not sure why. I have been finding myself continually in this 'pissed off' mode - not scared, just angry. My girlfriend put it beautifully - she said 'what is this? it really seems like harassment - cancer harassment". That's exactly how I feel. I just want a frickin break - ya know? But alas, this is not my path. Something else, it's interesting to see how people react as this journey of mine continues to play itself out. My tight knit group are in it for the long haul - they always have been. Then there's that next layer of people who just don't know how to react. It's like they showed up for the 'Hurrah! Let's Fight!' portion, but now just don't know how to react to this next phase. It's almost like - 'I ran out of inspirational things to say, what do I say now?' kind of looks. Then there are the people that just aren't there anymore. Weird. I'm not hurt, or upset, I don't really feel anything actually - I'm really just so curious about how this plays out for myself, and the people around me. I get so inspired by people who send me messages though - there are so many people who put their words out there for me to read, either on this blog or on Facebook or in personal emails - and each and every one of them make me fight harder. For that, I am truly blessed to have so many people in cyberspace, if you will, rooting for me. Thank you. I won't let you down.
Obviously needed to purge THAT out of my heart tonight. Went down to Phx today for a fill and since we need to push my surgery back a bit, we're going to do my fills every 2 weeks instead of every week. This actually will work better now I think - I don't have to rush down to 115 degree weather every week (not kidding, you should have seen Madeline react to her first Phx summer weather - she told me she needed a cold cloth for her head). Plus, this will give my chest time to compensate for the fills. Needless to say, feeling 'perky' today. I'll have to post some recent pics. OH - that reminds me. I'm sitting in the waiting area of my plastic surgeons office today explaining to Veronica my current medical situation. I don't broadcast what's happening to me, but I'm not worried about people overhearing either - don't really care who hears what anymore. Anyway, this older couple is sitting there in the waiting area as well, I'd say the woman was maybe late 50's. She approaches me after Veronica leaves and says 'I didn't mean to overhear but did you have a mastectomy?' to which I respond 'yes' she tells me she did as well then pulls down her top to show me her implants. I was literally, maybe a foot away from this woman when she popped em right out there for me to see. Wow. Then she was called next and off she went. I was taken aback at first, but then, well, just kinda thought - whatever. Isn't that funny. So not a big deal. I wonder if I'll do that. Do I do that now? Hmmmm. Hers looked pretty decent actually. I think I was coveting someone else's reconstruction.
I was thinking the other day that I really just need to believe that I am getting better. I let my mind wander sometimes, really wander, and I don't think that is serving me well at all. I talked about this with PJ and I think it really is that simple. Just believe my liver is getting healthier and healthier. Kinda what Pastor Mary said, even when you don't want to smile, smile and your emotions will eventually catch up with your face. I've been trying this out today and it really does work. When I start wandering in my head, I start smiling and saying to myself 'my liver is healthy my liver is healthy my liver is healthy'. Mind you, I look like a frickin psycho - but it really does work. It really is that simple. I know I need some rejuvenation in the prayer area, that will help as well. But it really is that simple. It completely changes my mind. Cool.
Well, it's been a long day and time for me to turn in. My day was one of swim lessons, working out, Ginger attached to my leg, driving to Phx where my mom watched my kids while I drove to my dr appt (thank you mom and Brit!) picked them up to have Ginger screaming crying for me, drove home, baths & dinner w/o my hubby cuz he's working his ass off then preparing for my retreat this weekend. I love that I have the energy to do this, how blessed I am.
God Bless all -
Obviously needed to purge THAT out of my heart tonight. Went down to Phx today for a fill and since we need to push my surgery back a bit, we're going to do my fills every 2 weeks instead of every week. This actually will work better now I think - I don't have to rush down to 115 degree weather every week (not kidding, you should have seen Madeline react to her first Phx summer weather - she told me she needed a cold cloth for her head). Plus, this will give my chest time to compensate for the fills. Needless to say, feeling 'perky' today. I'll have to post some recent pics. OH - that reminds me. I'm sitting in the waiting area of my plastic surgeons office today explaining to Veronica my current medical situation. I don't broadcast what's happening to me, but I'm not worried about people overhearing either - don't really care who hears what anymore. Anyway, this older couple is sitting there in the waiting area as well, I'd say the woman was maybe late 50's. She approaches me after Veronica leaves and says 'I didn't mean to overhear but did you have a mastectomy?' to which I respond 'yes' she tells me she did as well then pulls down her top to show me her implants. I was literally, maybe a foot away from this woman when she popped em right out there for me to see. Wow. Then she was called next and off she went. I was taken aback at first, but then, well, just kinda thought - whatever. Isn't that funny. So not a big deal. I wonder if I'll do that. Do I do that now? Hmmmm. Hers looked pretty decent actually. I think I was coveting someone else's reconstruction.
I was thinking the other day that I really just need to believe that I am getting better. I let my mind wander sometimes, really wander, and I don't think that is serving me well at all. I talked about this with PJ and I think it really is that simple. Just believe my liver is getting healthier and healthier. Kinda what Pastor Mary said, even when you don't want to smile, smile and your emotions will eventually catch up with your face. I've been trying this out today and it really does work. When I start wandering in my head, I start smiling and saying to myself 'my liver is healthy my liver is healthy my liver is healthy'. Mind you, I look like a frickin psycho - but it really does work. It really is that simple. I know I need some rejuvenation in the prayer area, that will help as well. But it really is that simple. It completely changes my mind. Cool.
Well, it's been a long day and time for me to turn in. My day was one of swim lessons, working out, Ginger attached to my leg, driving to Phx where my mom watched my kids while I drove to my dr appt (thank you mom and Brit!) picked them up to have Ginger screaming crying for me, drove home, baths & dinner w/o my hubby cuz he's working his ass off then preparing for my retreat this weekend. I love that I have the energy to do this, how blessed I am.
God Bless all -
Sunday, June 20, 2010
Oh My Crackling Feet!
Well, what an emotional journey this continues to be. Weekend was awesome - had PJ's dad with us this weekend and it is always a joy to have him around. The girls LOVE their Grandpa Monte - so they loved pulling him here and there - showing him all their 'stuff' and making him watch movies I'm sure he has no interest in seeing. (our house is on a permanent repeat of Alice In Wonderland - being the Tim Burton fans we are) I'm trying to teach Madeline the line 'I love a fat pig belly for my aching feet'. Nice.
I didn't have much time to really wallow in this new founded Friday information as I had to do my Miss Dina Toddler Story time at the library Sat morning with Madeline. PJ reminded me how important it is for her to see me doing this. She is such a great helper too - and it is fun. The kids are so cute. Did laundry while PJ cut the grass in the back and then let the girls run through the sprinklers in the late afternoon while PJ and I shared a beer. Lovely. I have been so liberated by the 'chess game' frame of mind. Not to say that I'm thrilled about this - I'm still pretty pissed off as a matter of fact - but what good is that going to really do in the long run? We just need to find the right concoction is all. I'm willing to try anything at this point. Anything before we have to back to the BIG GUNS - I don't want to do that again. But yes, I will if I have to.
I find it so hard to know what to pray for these days - when prayers go unanswered, to me anyway, it confuses me. I mean, I still take great comfort in knowing that I am walking through this with Him, but I find myself not knowing what to pray for. When I prayed for a break, I didn't get it. When I prayed for healing, I didn't get it. I know I need to trust the journey - because I am supposed to experience all these things - it is the only way to continue to be closer to Him, but I'd be lying if I hadn't thought 'enough is enough already!'. These 'treatments' are for life - and I don't think I really got that until now. I thought that I would 'go through' this stuff, it would hopefully work then I'd be done. But stage IV isn't like that. It's already spread - so you really just are managing the disease for the rest of your life, trying to keep it at bay. What a bitch, right? There's not going to be a beginning middle and end - well, there will be, just not in the frame of mind that I thought it would be, like a story or something. Sucks. Just plain sucks.
PJ and I have been operating as of late as two people living along side each other - which isn't really like us. He's been so wrapped up in his job, and me with everything else, we haven't come together in the way we always have been in the past lately. It had to have been God on Friday that brought our conversation to fruition because we, as a married couple, weren't even close to this type of conversation when we had it - if that makes any sense. But we easily fell right back into it - which is a blessing in so many ways. Not only because of how it resonated with me - and I am the MOST skeptical when people try to give me any sort of 'pep' talk. I'm like, please - seriously? But not this time. Also because we needed this connection - or at least I did. I hadn't felt it in awhile and I missed it. I miss him.
Fathers Day was amazing today. Went to church, met Sean and Joe there then we all went to the park and had lunch. It was lovely. I can't begin to explain what it means to watch my husband with my children. They love him so much - and he is so wonderful with them. Then I went and saw my daddy this afternoon and had a great talk with him. It felt so good to tell him how lucky I am to have him as my dad. I am truly blessed, so blessed.
Well, took a Larazipan tonight - doc trying to get me off the percocet so this seems to be the answer. It works, gives me some crazy dreams, but it works.
God Bless
I didn't have much time to really wallow in this new founded Friday information as I had to do my Miss Dina Toddler Story time at the library Sat morning with Madeline. PJ reminded me how important it is for her to see me doing this. She is such a great helper too - and it is fun. The kids are so cute. Did laundry while PJ cut the grass in the back and then let the girls run through the sprinklers in the late afternoon while PJ and I shared a beer. Lovely. I have been so liberated by the 'chess game' frame of mind. Not to say that I'm thrilled about this - I'm still pretty pissed off as a matter of fact - but what good is that going to really do in the long run? We just need to find the right concoction is all. I'm willing to try anything at this point. Anything before we have to back to the BIG GUNS - I don't want to do that again. But yes, I will if I have to.
I find it so hard to know what to pray for these days - when prayers go unanswered, to me anyway, it confuses me. I mean, I still take great comfort in knowing that I am walking through this with Him, but I find myself not knowing what to pray for. When I prayed for a break, I didn't get it. When I prayed for healing, I didn't get it. I know I need to trust the journey - because I am supposed to experience all these things - it is the only way to continue to be closer to Him, but I'd be lying if I hadn't thought 'enough is enough already!'. These 'treatments' are for life - and I don't think I really got that until now. I thought that I would 'go through' this stuff, it would hopefully work then I'd be done. But stage IV isn't like that. It's already spread - so you really just are managing the disease for the rest of your life, trying to keep it at bay. What a bitch, right? There's not going to be a beginning middle and end - well, there will be, just not in the frame of mind that I thought it would be, like a story or something. Sucks. Just plain sucks.
PJ and I have been operating as of late as two people living along side each other - which isn't really like us. He's been so wrapped up in his job, and me with everything else, we haven't come together in the way we always have been in the past lately. It had to have been God on Friday that brought our conversation to fruition because we, as a married couple, weren't even close to this type of conversation when we had it - if that makes any sense. But we easily fell right back into it - which is a blessing in so many ways. Not only because of how it resonated with me - and I am the MOST skeptical when people try to give me any sort of 'pep' talk. I'm like, please - seriously? But not this time. Also because we needed this connection - or at least I did. I hadn't felt it in awhile and I missed it. I miss him.
Fathers Day was amazing today. Went to church, met Sean and Joe there then we all went to the park and had lunch. It was lovely. I can't begin to explain what it means to watch my husband with my children. They love him so much - and he is so wonderful with them. Then I went and saw my daddy this afternoon and had a great talk with him. It felt so good to tell him how lucky I am to have him as my dad. I am truly blessed, so blessed.
Well, took a Larazipan tonight - doc trying to get me off the percocet so this seems to be the answer. It works, gives me some crazy dreams, but it works.
God Bless
Friday, June 18, 2010
A Necessary Inconvenience
Isn't that the most wonderful description of what has unfolded today. Thank you Dr. Lindquist - you continue to show yourself as such a gift to me. Here we go:
Seems it is getting bigger. Went from 1.6 cm to 2.3. Sooooo - here we go. She initially wanted to start me back on the Taxol/Avastin chemo regime, but didn't want me to lose my lovely hair again so we explored some other options. To be honest, the hair was really the least of my worries, it was all the other crappy things I felt with the Taxol that I would really prefer never to experience again if it can be helped. Apparently, there are many other chemo drugs we can try before having to go back to the 'big guns'. Thank God?
We've decided to add Avastin back into my treatment plan in conjunction with the Xeloda chemo pills. It worked really great for me in the past, and the major side effect I experienced was nose bleeds - so I can live with that. Sucks that it is an infusion, and I will go every other week. If I respond to it, I'll do this for the rest of my life. We'll do a CT scan in 2 months to see how I'm responding.
Emotionally? I'm bummed. I really just wanted a break this time - for once. But that is not in my plan for whatever reason. This will push back my final reconstruction surgery as well since I can't have surgery while on this drug. So we're looking at Sept for that now instead of Aug. I asked her start the Avastin today - why waste time, right? PJ had a great take on this information that we're going to adopt as our way of thinking at this point. I'll wallow in this 'bummed-ness' for a spell, then we're going to just look at this whole thing as a chess game. A chess game between me and cancer. I make a move, it makes a move. I think about the move it makes and make my next move. It does not play fair - and neither will I. I'm giving it a big FUCK YOU right now and shooting it with a blast of avastin. PJ says 'you want to play this game for the rest of my life? so be it - I've got all the time in the world'. Amazing man I am married to - and this frame of mind sits well in my psyche. So here we are.
Part of me doesn't want anyone to know - to hide this and act like everything is fine to everyone. But I know that is not what God teaches us to do. I need to share my pain and frustration with those who love and care about me - that is the only way to travel through such emotions. Straight through them, and not look back. I just cringe at the thought of the looks - the pity looks. I know people mean well, but sometimes it's all that I can bear. I just want to scream "I'm Fine!" Funny thing is, I feel perfectly fine. Best I've felt as a matter of fact - guess that's blessing too. Oh, I lost 5 lbs. That's a good thing too I guess. At least this news didn't make me want to go and eat something fattening. Drats.
I will always have 'why?' in the back of my mind. But I am constantly reminded of Jeremiah 29:11 - this verse was in an email to me this morning and this was the verse that was presented to me at the very beginning of this journey. I will hold tight to this and move forward and not look back. We got home today and I immediately went outside and filled the little pool for my girls and watched them giggle and swim. Then we all cuddled on the couch and watched Toy Story 2. It was the ultimate best feeling. That's what fills me up - my girls, my family, my friends, my Lord. I'm fighting this thing with every ounce of strength I can muster. In short - I don't have time to have cancer.
God Bless -
Seems it is getting bigger. Went from 1.6 cm to 2.3. Sooooo - here we go. She initially wanted to start me back on the Taxol/Avastin chemo regime, but didn't want me to lose my lovely hair again so we explored some other options. To be honest, the hair was really the least of my worries, it was all the other crappy things I felt with the Taxol that I would really prefer never to experience again if it can be helped. Apparently, there are many other chemo drugs we can try before having to go back to the 'big guns'. Thank God?
We've decided to add Avastin back into my treatment plan in conjunction with the Xeloda chemo pills. It worked really great for me in the past, and the major side effect I experienced was nose bleeds - so I can live with that. Sucks that it is an infusion, and I will go every other week. If I respond to it, I'll do this for the rest of my life. We'll do a CT scan in 2 months to see how I'm responding.
Emotionally? I'm bummed. I really just wanted a break this time - for once. But that is not in my plan for whatever reason. This will push back my final reconstruction surgery as well since I can't have surgery while on this drug. So we're looking at Sept for that now instead of Aug. I asked her start the Avastin today - why waste time, right? PJ had a great take on this information that we're going to adopt as our way of thinking at this point. I'll wallow in this 'bummed-ness' for a spell, then we're going to just look at this whole thing as a chess game. A chess game between me and cancer. I make a move, it makes a move. I think about the move it makes and make my next move. It does not play fair - and neither will I. I'm giving it a big FUCK YOU right now and shooting it with a blast of avastin. PJ says 'you want to play this game for the rest of my life? so be it - I've got all the time in the world'. Amazing man I am married to - and this frame of mind sits well in my psyche. So here we are.
Part of me doesn't want anyone to know - to hide this and act like everything is fine to everyone. But I know that is not what God teaches us to do. I need to share my pain and frustration with those who love and care about me - that is the only way to travel through such emotions. Straight through them, and not look back. I just cringe at the thought of the looks - the pity looks. I know people mean well, but sometimes it's all that I can bear. I just want to scream "I'm Fine!" Funny thing is, I feel perfectly fine. Best I've felt as a matter of fact - guess that's blessing too. Oh, I lost 5 lbs. That's a good thing too I guess. At least this news didn't make me want to go and eat something fattening. Drats.
I will always have 'why?' in the back of my mind. But I am constantly reminded of Jeremiah 29:11 - this verse was in an email to me this morning and this was the verse that was presented to me at the very beginning of this journey. I will hold tight to this and move forward and not look back. We got home today and I immediately went outside and filled the little pool for my girls and watched them giggle and swim. Then we all cuddled on the couch and watched Toy Story 2. It was the ultimate best feeling. That's what fills me up - my girls, my family, my friends, my Lord. I'm fighting this thing with every ounce of strength I can muster. In short - I don't have time to have cancer.
God Bless -
Saturday, June 12, 2010
When Dina Got Her Boobs Back...........
Well, I've got a lot of catching up to do here. First of all, when I went for my fill appt last week, Veronica started filling the right boob (which I'm starting to feel the needle more and more which is good I guess?) it started turning pink. She stopped. She only filled me with 30 cc's on each side and had Dr. Mo come in and take a looksy. Considering what I went through in Dec, I was freaking out a little to be honest. He looked, said he thought everything was fine, but did I want him to prescribe some antibiotics for prophylactic reasons? Well, I immediately recalled him not thinking anything was wrong last time when my breasts were scorching red and he sent me home only to have infection later pour out of one of them, so needless to say I said a great big YEA! to the drugs. I've been on 2 different antibiotics since then and the pinkness has subsided. Seems the scar tissue is pulling apart as well which feels strange but at least they are starting to fill out and both look more round. They are really looking like boobs now - very hard, non-pliable boobs that make Ginger look at me and say 'ow!' when she lays on me - but boobs just the same. Went back on Tues of this past week and he said all is looking good, but wants to hold off on another fill until I'm done with the antibiotics and have another week off them under my belt. So there we are. If all now continues to go as planned, I'll probably have the big 'switch' surgery around the middle of August. I figured it would be better to wait until I get a week of Madeline in Kindergarten before I move forward. (wow, that's another blog entirely).
I think I haven't written here because I've been so busy living, which is good, but I've had moments of wondering if I'm in denial about my situation, or am I just busy? Or do I just not have time for cancer? Yea, maybe that's it. That feels right. I luuuuv being busy - especially with volunteer stuff - giving back fills my soul like nothing else. And nothing, not even cancer, is going to keep me from doing this is some form or another. I won't allow it. I decide. I do it. That is my primary.
Speaking of volunteering I was acting out Bible stories all week for 1st thru 5th graders at Vacation Bible School. I acted out a different story each day, four times a day for about 40 kids each time. It was exhausting, yes, and I'm surprised I have a voice now - but it was a blast. These kids were amazing. And of course, in true 'Dina style' - it wouldn't be me if there wasn't some sort of glitch or weirdness that occurred. That did - on Wed. Wed was the day I played the role of Paul who was bitten by a poisonous snake yet survived. Now, like I said before, I had all ages ranges here - my first group of the morning were about 40 5th graders, my oldest group. So I have them all gather round the campfire, get real close, and tell them that the island they are on is crawling with snakes. Get them all good and scared - then I decide to put some more wood on the fire, so grab stick, stick, then SNAKE! Then I am supposed to scream while waving this rubber snake around and pretend that it is biting me - then I grab it and throw it to the ground, thus killing it. That's the way is was SUPPOSED to happen. First round went fine, but one of my helpers advised me to maybe tone down the scary factor on the second group of kids coming in because they were younger - they were like 2nd graders. Cool I thought - I'll just be more 'hokey' about waving the snake around. So that part came up, they're all gathered round the fire with me, all good an spooked, when I get to the 'stick - stick - SNAKE' and I jump up and start waving it around and it accidentally flies out of my hand and hits this little boy in the front square in the face. Now, he was already afraid, as was everyone, when I got up and started screaming, but NOW? He's crying. Nice Dina, real nice. I immediately feel I've scarred this poor little blond boy for life causing his parents years of therapy. I kick into MOM mode immediately, go over to him, begin to hug him, apologize to him and tell him it was an accident. Then, I kid you not, it was either the Improv Gods I worshiped for so long (from like what, 1996-2003?) or God Himself, but I stood up - and started into this completely made up script - I said to everyone "Did everyone see what Carter (someone corrects me that it's Cooper) Cooper just did?!?!?!?!? He grabbed this snake and killed it for me! Did you see that ! Cooper you are my hero! Come up here with me - everyone give Cooper a hand! God worked through Cooper to save me! How cool is that?!?! - then we eventually fell back into the script. Oy vey. Can you believe this? Thank GOD this kid was smiling, laughing and high-fiving me by the end - but I felt like such a complete shit. Wow.
Now, I'm starting 'toddler time' at the local tiny library here. I just sing a song, feed them goldfish, read a book, sing another song, then we're done. It'll be cute. I do that for 6 Saturdays. Oy.
OH - and I forgot to share the best part! I was commissioned as a Steven Minister last Sunday and it was so cool. We went to greet everyone as they left and who comes up to shake my hand but my brother in law Sean and his partner Joe and my father in law. It was AWESOME!!!! I am rarely surprised by much, but this brought tears to my eyes. I was so touched they drove up to see this. How blessed I am. I also got to assist in giving communion which was a pretty awesome experience I must say. As each person comes up to receive communion you can just see on their faces how different of an experience it is for each and every person. Some seem connected, some seem like they do it out of obligation, some are looking for connection - it was like I could feel each person's different energy as they walked past me. Incredible.
So - I've been seeing a chiropractor and I have to say - AMEN. Finally, someone who is smart, listens to me, and is actually bringing me relief. He is awesome. His name is Dr. Stultz for anyone who is interested, because he is awesome and bringing me relief after 4 years of pain.
I have my calcium treatment this week, and the much anticipated PET scan on Wed. (heavy sigh) I feel something different about this every day I think. I'm scared one day, worried the next, fine the next, denial the next, pissed off pretty much all the time that I even have to do this. My feet have actually been showing the signs of the side effects of the Xeloda this week - wicked dry, red and starting to crack a bit. Feels like I have a sunburn on the bottom of my feet - I guess I need to tell my onc about this. I don't want to reduce the medication, I want to take the full dose - but I remember her saying "Dina, you don't have to be super woman with this, if you're feeling a side effect tell me and we'll adjust". I'll tell her when I see her on Friday. Hard to fight 'The Burn Means It's Working' mentality though.
So send prayers please for Wed - I'll hopefully not be as tired this week and will be able to post more. I'll probably need to anyways, for my own sanity.
I forget that what I'm doing is volunteering sometimes. I get so much out of it, I forget that is also helping other people. As tiring as this past week was for me, mostly because it was my ON week for chemo pills as well, it totally filled me up. I loved working with these kids - it was pretty frickin awesome - even if it may have sent a few to therapy. ;-)
God Bless and have a great weekend.
I think I haven't written here because I've been so busy living, which is good, but I've had moments of wondering if I'm in denial about my situation, or am I just busy? Or do I just not have time for cancer? Yea, maybe that's it. That feels right. I luuuuv being busy - especially with volunteer stuff - giving back fills my soul like nothing else. And nothing, not even cancer, is going to keep me from doing this is some form or another. I won't allow it. I decide. I do it. That is my primary.
Speaking of volunteering I was acting out Bible stories all week for 1st thru 5th graders at Vacation Bible School. I acted out a different story each day, four times a day for about 40 kids each time. It was exhausting, yes, and I'm surprised I have a voice now - but it was a blast. These kids were amazing. And of course, in true 'Dina style' - it wouldn't be me if there wasn't some sort of glitch or weirdness that occurred. That did - on Wed. Wed was the day I played the role of Paul who was bitten by a poisonous snake yet survived. Now, like I said before, I had all ages ranges here - my first group of the morning were about 40 5th graders, my oldest group. So I have them all gather round the campfire, get real close, and tell them that the island they are on is crawling with snakes. Get them all good and scared - then I decide to put some more wood on the fire, so grab stick, stick, then SNAKE! Then I am supposed to scream while waving this rubber snake around and pretend that it is biting me - then I grab it and throw it to the ground, thus killing it. That's the way is was SUPPOSED to happen. First round went fine, but one of my helpers advised me to maybe tone down the scary factor on the second group of kids coming in because they were younger - they were like 2nd graders. Cool I thought - I'll just be more 'hokey' about waving the snake around. So that part came up, they're all gathered round the fire with me, all good an spooked, when I get to the 'stick - stick - SNAKE' and I jump up and start waving it around and it accidentally flies out of my hand and hits this little boy in the front square in the face. Now, he was already afraid, as was everyone, when I got up and started screaming, but NOW? He's crying. Nice Dina, real nice. I immediately feel I've scarred this poor little blond boy for life causing his parents years of therapy. I kick into MOM mode immediately, go over to him, begin to hug him, apologize to him and tell him it was an accident. Then, I kid you not, it was either the Improv Gods I worshiped for so long (from like what, 1996-2003?) or God Himself, but I stood up - and started into this completely made up script - I said to everyone "Did everyone see what Carter (someone corrects me that it's Cooper) Cooper just did?!?!?!?!? He grabbed this snake and killed it for me! Did you see that ! Cooper you are my hero! Come up here with me - everyone give Cooper a hand! God worked through Cooper to save me! How cool is that?!?! - then we eventually fell back into the script. Oy vey. Can you believe this? Thank GOD this kid was smiling, laughing and high-fiving me by the end - but I felt like such a complete shit. Wow.
Now, I'm starting 'toddler time' at the local tiny library here. I just sing a song, feed them goldfish, read a book, sing another song, then we're done. It'll be cute. I do that for 6 Saturdays. Oy.
OH - and I forgot to share the best part! I was commissioned as a Steven Minister last Sunday and it was so cool. We went to greet everyone as they left and who comes up to shake my hand but my brother in law Sean and his partner Joe and my father in law. It was AWESOME!!!! I am rarely surprised by much, but this brought tears to my eyes. I was so touched they drove up to see this. How blessed I am. I also got to assist in giving communion which was a pretty awesome experience I must say. As each person comes up to receive communion you can just see on their faces how different of an experience it is for each and every person. Some seem connected, some seem like they do it out of obligation, some are looking for connection - it was like I could feel each person's different energy as they walked past me. Incredible.
So - I've been seeing a chiropractor and I have to say - AMEN. Finally, someone who is smart, listens to me, and is actually bringing me relief. He is awesome. His name is Dr. Stultz for anyone who is interested, because he is awesome and bringing me relief after 4 years of pain.
I have my calcium treatment this week, and the much anticipated PET scan on Wed. (heavy sigh) I feel something different about this every day I think. I'm scared one day, worried the next, fine the next, denial the next, pissed off pretty much all the time that I even have to do this. My feet have actually been showing the signs of the side effects of the Xeloda this week - wicked dry, red and starting to crack a bit. Feels like I have a sunburn on the bottom of my feet - I guess I need to tell my onc about this. I don't want to reduce the medication, I want to take the full dose - but I remember her saying "Dina, you don't have to be super woman with this, if you're feeling a side effect tell me and we'll adjust". I'll tell her when I see her on Friday. Hard to fight 'The Burn Means It's Working' mentality though.
So send prayers please for Wed - I'll hopefully not be as tired this week and will be able to post more. I'll probably need to anyways, for my own sanity.
I forget that what I'm doing is volunteering sometimes. I get so much out of it, I forget that is also helping other people. As tiring as this past week was for me, mostly because it was my ON week for chemo pills as well, it totally filled me up. I loved working with these kids - it was pretty frickin awesome - even if it may have sent a few to therapy. ;-)
God Bless and have a great weekend.
Tuesday, June 1, 2010
Drive By Douching
Time flies, right? Had a really awesome Memorial Day weekend. Did yard work, planted flowers, killed my rosebush - typical kind of stuff. Had a barbecue on Sun here at the house and had my dad and Nancy over as well as our neighbor Terry. It was lovely. Just relaxing good conversation, good food, good life moment. I love it when it all falls into place for moments like these - it was awesome.
I am constantly reminded however of what this stupid disease has done to my body. Correction, what the medication that fights this stupid disease has done to my body. I just can't move around comfortably anymore. It's my back, my leg, my this, my that - there is always something that hurts and it makes me feel so many things. Angry, frustrated, pissed off, sad, guilty. Then I look at my husband and I wonder if he's ever just as frustrated. I mean, he hears it all - all of the bitching and moaning I do and I think to myself sometimes, 'look what he gets - so not what he thought he was getting when he married me'. Does this make him love me less? I don't think so - but I feel guilty that he isn't getting the 100% of the Dina that he married. All of this happening to me directly effects him, and it makes me feel bad. Just can't help it.
Oh - I will explain this post title. This is so random. I've seen this piece of trash on the side of the street on 3 different occasions in the same place, and it just makes me so curious. In the rocked area by my nail girl, there lies an empty Summers Eve Disposable Douche box. I see this and have to wonder - how the hell did THAT get there? Did someone need one so bad they had to take it out in the car then tossed the box out the car window? OR did someone in a car throw it at someone walking to give them a hint? OR was someone walking with this in a bag and just couldn't wait any longer and HAD to open it up while they were walking? What a strange piece of trash, right? Hmmmmmmmm.
Anyway, we were in Phoenix last night because Ginger had her EEG test this morning at Phoenix Children's Hospital. She had to sleep on her own through this test, and after keeping her up a bit last night, a good swim this morning, and lots of prayer - she did just beautifully. I got to lay there with her and she and I just laid there together on the gurney with her Dora blanket covering us while the nurse attached a bunch of these electrode thingys to her head. She was asleep before the test even started, bless her little heart. Total open mouth sleeping - she was out. I didn't really break down until the drive home actually, when I realized how much Ginger resembled my niece with her head all bandaged up holding these electrode things on her. My niece was diagnosed with brain cancer at the age of two - she is 22 now, but these memories are clearly defined in my brain, and this was just a huge flashback moment for me. In any case, she did great and I will call for the results tomorrow. Keep prayers coming of 'unremarkable' results please.
I'm seeing a chiropractor now to see if I can get any sort of relief in my right leg. It has been a problem for, no lie, the past 4 years. Some have said it is sciatic, I don't know. It feels lower back related and the last chiropractor I went to for this found nothing - not even the cancer on my spine - so needless to say I'm not seeing him again. This guy was recommended, and so far so good. I'm going to hear what he is proposing tomorrow morning. I'll have to try acupuncture or something if this doesn't work, so I'm praying this guy can help me.
I had this moment of fear recently, when I had to describe my current situation to my father. The thought of this upcoming PET scan not showing positive results of this medication sent a thread of fear through my heart. I don't want to go back to the BIG GUNS. I don't want to lose my hair again, I don't want that life again of going through chemo treatment. I want this current medication to be working, for it to kill this stuff inside me. I guess I was so busy living my life, I had forgotten where we were in this disease journey. Have I been in denial? Is it me ignoring the reality of where I am? I hope not, I think I've just been living. And loving it. I want more and more of it. I sound selfish now that I'm writing this. I need to be grateful for what I have. But I continue to ask God for more. Every day.
Off to study my acting role in the upcoming Vacation Bible School. When I went equity, I had no idea I'd be preparing for THIS kid of role.
God Bless -
I am constantly reminded however of what this stupid disease has done to my body. Correction, what the medication that fights this stupid disease has done to my body. I just can't move around comfortably anymore. It's my back, my leg, my this, my that - there is always something that hurts and it makes me feel so many things. Angry, frustrated, pissed off, sad, guilty. Then I look at my husband and I wonder if he's ever just as frustrated. I mean, he hears it all - all of the bitching and moaning I do and I think to myself sometimes, 'look what he gets - so not what he thought he was getting when he married me'. Does this make him love me less? I don't think so - but I feel guilty that he isn't getting the 100% of the Dina that he married. All of this happening to me directly effects him, and it makes me feel bad. Just can't help it.
Oh - I will explain this post title. This is so random. I've seen this piece of trash on the side of the street on 3 different occasions in the same place, and it just makes me so curious. In the rocked area by my nail girl, there lies an empty Summers Eve Disposable Douche box. I see this and have to wonder - how the hell did THAT get there? Did someone need one so bad they had to take it out in the car then tossed the box out the car window? OR did someone in a car throw it at someone walking to give them a hint? OR was someone walking with this in a bag and just couldn't wait any longer and HAD to open it up while they were walking? What a strange piece of trash, right? Hmmmmmmmm.
Anyway, we were in Phoenix last night because Ginger had her EEG test this morning at Phoenix Children's Hospital. She had to sleep on her own through this test, and after keeping her up a bit last night, a good swim this morning, and lots of prayer - she did just beautifully. I got to lay there with her and she and I just laid there together on the gurney with her Dora blanket covering us while the nurse attached a bunch of these electrode thingys to her head. She was asleep before the test even started, bless her little heart. Total open mouth sleeping - she was out. I didn't really break down until the drive home actually, when I realized how much Ginger resembled my niece with her head all bandaged up holding these electrode things on her. My niece was diagnosed with brain cancer at the age of two - she is 22 now, but these memories are clearly defined in my brain, and this was just a huge flashback moment for me. In any case, she did great and I will call for the results tomorrow. Keep prayers coming of 'unremarkable' results please.
I'm seeing a chiropractor now to see if I can get any sort of relief in my right leg. It has been a problem for, no lie, the past 4 years. Some have said it is sciatic, I don't know. It feels lower back related and the last chiropractor I went to for this found nothing - not even the cancer on my spine - so needless to say I'm not seeing him again. This guy was recommended, and so far so good. I'm going to hear what he is proposing tomorrow morning. I'll have to try acupuncture or something if this doesn't work, so I'm praying this guy can help me.
I had this moment of fear recently, when I had to describe my current situation to my father. The thought of this upcoming PET scan not showing positive results of this medication sent a thread of fear through my heart. I don't want to go back to the BIG GUNS. I don't want to lose my hair again, I don't want that life again of going through chemo treatment. I want this current medication to be working, for it to kill this stuff inside me. I guess I was so busy living my life, I had forgotten where we were in this disease journey. Have I been in denial? Is it me ignoring the reality of where I am? I hope not, I think I've just been living. And loving it. I want more and more of it. I sound selfish now that I'm writing this. I need to be grateful for what I have. But I continue to ask God for more. Every day.
Off to study my acting role in the upcoming Vacation Bible School. When I went equity, I had no idea I'd be preparing for THIS kid of role.
God Bless -
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