So, I finally got my appt today at CTCA. I had been waiting and waiting and waiting for my interventional radiologist to call me back, which, he never did. In retrospect, this is not entirely a bad thing. Because I have a new interventional radiologist now, who is awesome and treats me like a person. Anyway, saw him today and he gave me an entirely different interpretation of my last CT scan. Get OUT - right? So, he says he can't really be sure that there is new growth on the right side - can you believe it? He described to me what cancer looks like on a CT scan and this didn't really look like that. He didn't really know what it was - vascular irritation was a possibility. So he recommend I have a PET scan so we can really see what we're dealing with, then either schedule another quadrasphere if it is, or take some time off if it's not. And as I still am dealing with so much pain when I breathe in on my right side, he did a full ultra sound on my abdomen, all of which came out fine. My bloodwork came back fine, my liver function is normal, my white and red blood cells are perfect, and my tumor markers were even down. Isn't that crazy! So we decide that I will start taking Alieve for the pain instead of popping all these Advil, see if that helps, schedule the PET scan for the first of March then see if we need a quadrasphere or not. Sounds awesome right? Right, it is. Except here's where everything went in a totally different direction today.
My shoulder has been hurting, I think I've mentioned this here before. So he does this physical exam which generates some pain, then he decides to do an ultra sound himself on it, just to take a peek. Nothing. We agree to try to strengthen it up by doing some stretching at home, to see if that improves. Ok.
Off I go to my oncologist appt - check up time. He reviews everything that I just went through with the interventional radiologist and upon his physical exam of me - he notes my pain when I breathe in like before, and my shoulder pain. He says he wants an xray of my chest and my shoulder. Just like that - they send me back down to imaging and there I immediately have my xrays - so frickin cool that this happens this fast - and the results are given within like, 10-15 min, no lie. He reports to me that my chest is clear - thank you Jesus. My shoulder however, has a hole in it. Yea, you read that right - my shoulder bone as a hole in it - about the size of a nickel. I respond with 'what?!?' and he says "yep". I look at him and say 'well, it's cancer isn't it? what else could do that?" and he says he doesn't know. That he's never seen it in this particular bone before, so that part just doesn't make sense to him. I just continually seem to baffle everyone. He and PJ then begin to chat that perhaps this is degenerative, or maybe I've always had this. Nobody knows. Point is, he doesn't want to wait to find out - so now I have a PET scan scheduled for Monday morning. Ugh.
AND - to boot, I accidentally OD'd on Vit D today - did you know you could do this? Well, I did with this new supplement I've been taking - and my naturpath informs me that the dose I was taking is at toxic levels. Well, I certainly felt toxic - it was awful. Better now though - thank God.
So I have to admit, I was freaked out at this news. Freaked out. Then, as I vented to PJ (thank God he was with me) I was able to calm down. I told Dr. Nixon that I was scared - and he said, well, if it makes me feel any better, if it is cancer, we just shoot it with radiation to kill it and stop your pain. What we are treating on the liver is way more important than this, that there is an easy fix to this. Yes, that does make me feel better actually. So I process this through, while feeling these awful flu like symptoms from the stupid Vit D - then something just kicked into gear for me. I looked at PJ and said "well, ya know - this whole hole in the shoulder bone thing could really earn us some extra money. I could be a new game at the county fair, have people like, toss a small ball through it to win a prize". Then we began to brainstorm on all the uses for this, you could string your purse through it, you could put an earring through it, you could go hardcore and pierce it with some sort of spike or something. If I was really desperate, I'm sure the adult film community could find a use for it. (kidding) Point is, is I need to tune into my sense of humor. I've lost that so much lately, and if I sit and be sad and scared and wallow in this sea of self pity - then not only is life passing me by while I do this, including my children lives, it totally plays into the fear. I refuse to do this anymore. I can hear the Holy Spirit guide me through this (which dr and which procedure is right) trust the Lord has my back here, and live my life. Yes, my life has a lot of dr appts and tests and other things in it that remind me of my cancer all the time - and I continue to have moments that it totally pisses me off - it reminds everyone of my cancer - but there are other parts of my life that aren't centered around that. That's what I'm going to intentionally focus on. I have been in this fog the past couple of weeks, and I'm telling you, it's like this news lifted this fog right out of my brain. Am I tired of being in pain, yes, and this can only be one more step towards ending this toxic way of thinking. I'm missing everything when I think like this!!!! So that's what I'm working on.
I'll know more on Monday - so until then, I'm livin life the best I can, pain or no pain. We'll figure this out. This may sound totally hokey - totally 'Jesus Freakish' - I don't care - I'm as surprised as anyone else that this is where my brain is just a couple hours after receiving this news. Perhaps my beautiful prayer circle was heard loud and clear yesterday, eh? My devotion for today said this:
I am above all things: your problems, your pain, and the swirling events in this ever-changing world. When you behold My Face, you rise above circumstances and rest with Me in heavenly places. I guarantee you will always have problems in this life, but they must not become your focus. When you think of yourself sinking in the sea of circumstances, say "Help Me Jesus!" and I will draw you back to Me.
I'm telling you, my brain just went there - I think it was kind of a decision, but more like an unconcious shift in perspective. Crazy.
So there we have it. Thanks for you prayers - they help so much I can't even explain. I've been asked to give my testimony for the church this month, which really just warms my heart. I know I am supposed to share - be it speaking, music, leadership - I know I am supposed to share and serve. I just know it.
God Bless
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Wednesday, February 8, 2012
Sunday, January 29, 2012
Getting my BRAIN back in the GAME.....
Well the results were as follows: left side seems stable still (yay!) but the right side now shows new small tumors. So, I am going to have to have more quadrasphere procedures, which, I have to admit, made me literally feel like I was going to throw up as I was speaking to the interventional radiologist. Now, they did tell me from the get go that it was typical to have 'multiple' treatments. Ok. So I'm not the exception to the rule, which I really wanted to be, so that is ok. At least this is normal, and I take some sort of sick comfort in that. Next, I really thought the new tumors on the right side was scary information, but then it was explained like this by my case manager. She put it this way (paraphrasing of course): it takes like a million cancer cells to show up on these CT scans, and the quadrasphere procedure not only kills the cancer cells, they apply it to the blood supply of the tumor, cutting it off - essentially killing it from both sides. Now, that blood has to go somewhere, so they figure what is showing on the scan now has always been there, they just couldn't see it till now. Again, I take some sick comfort in this as well. Oh, and did I mention that treating the left then the right is considered ONE treatment? Yea, didn't know that either. And I'm probably going to need 3 - count them - 3 - treatments. Which means 4 more times for this crap. Breathe Dina, breathe. I can do this, I don't want to do this, but I can do this. And, I found out the chemotherapy they are using is Adrymiacin - otherwise known in my unfortunately every growing breast cancer community as 'the red devil'. No wonder I've been so sick!!
Now, I just need to vent here a minute- because this last treatment was worse than the previous, and I now have more information as to why. The tumors they treated on the right side of my liver were very close to the very edge of the organ, which was then very close to my diaphragm, very close to my lung. I just spoke to a interventional radiologist, as I've been trying to speak with MY interventional radiologist (I just like typing that out a zillion times) but he never called me back after 2 weeks so I finally got this great guy who called me on Friday night around 6pm. He explained this to me - which probably explains why I've had these sharps stabbing pains in my side when I breathe in deeply, severe right shoulder pain, I've basically had pleurisy for the past week. Do you know what I thought it was? Tight muscles or me just not moving enough - so you know what I've been doing all week? Planting my ass on the treadmill at the gym making myself push to to the weight loss setting and 3 miles in 40 minutes. With pleurisy!!! Isn't that hysterical!!! There I am, having trouble breathing thinking 'wow it's hard to breathe, I better adjust the incline a little higher and work this out'. DUH!!!! So, those of you out there getting this procedure, heads up - ask where the tumors are that they are treating and if this is any possibility so you know what to possibly expect in your recovery time. And then if you feel those things - don't get on the treadmill!!!!! Oy. Seriously.
There, I feel much better now. So now I have to go in for an ultra sound on my gall bladder (still trying to figure out why that is important to check - Sean?) before we schedule another quadrasphere. So I figure I'm clear the month of Feb, which, to be honest, I'm quite excited about. The more I do this, the more I'm learning, that's for sure - just a real shitty way to feel while I'm learning, ya know?
I'm not sure how I feel emotionally. Sad I think, at first, and I'm working through that. I really wished I would be the one person who miraculously could have been done just after one procedure. But I am not. It's just that this, this procedure, has been the worst throughout all of this journey - and I will do it again, I will, but I really gotta work super hard and getting my brain back in the game, cuz it's not right now. I just want to feel better so I can run and jump and play with my kids. I want to feel better so I can run and jump and play with my husband ;-) and such. It's like just when I start to feel better, here we go again. And they haven't done many of these at CTCA so it's not organized or anything, again, very frustrating. All of that put together kinda puts you into a weird mindset, not a 'giving up' mindset, but an exasperated one I suppose. I asked the doc at the results appt 'how many times do I have to do this?' and he responded with 'this isn't a cure you know, we are just trying to extend your life as much as possible'. Ouch. Do I know that from his standpoint that this is true? Yes. Do I 'feel' like this is true? No. I'd be lying though if I say I haven't thought these thoughts: 'I don't think it's the cancer that's gonna kill me, I think it's the treatments'. This is just an ass kicker, and it scares me. Do I keep doing it? My oncologist is so gung ho about it, and I wholeheartedly trust him, so I take comfort in that. They did say there is a new infusion chemo that they have in their back pocket if we find this isn't working, so there's that. I just wish we could find it, ya know? I wouldn't mind having chemo every 2 weeks - or having quadrasphere every 6 months, if we knew it was keeping this thing at bay - ya know? I just want to find what it is so I can wrap my brain around it, tell myself to suck it up and then just frickin do it. I hate this flip flopping around trying all this different crap - hate it. Am I blessed that there are things to try? Lord yes, please don't think I'm not grateful for just having options, and maybe I need to remember that a little more. I just want something to work - finally. At least for a little while.
On a completely different note, I am actually able to pull my hair into this teeny tiny ponytail - I haven't been able to do that since I cut it all off way back in 2009. Kinda cool. And also a pain because it takes me way long to blow it out now. Am I complaining about having to DO my HAIR??? Hell no!!! Happy Happy Happy to just have hair, thx.
Still working on the whole trust thing. I do trust God, I do trust Jesus. I trust whatever they have in store for me - fact is, they aren't done with me yet - cuz I'm still here - walking around - so I just try to remember to make it count. To not waste time with BS, to make sure my kids know to be real and genuine and loving, and to make a difference, in whatever way possible. When I find myself wallowing in my own crap I make myself get up and get out and help someone else, that always just seems to put it all in perspective for me. Always does. And I find I hear the Holy Spirit working inside me much clearer when I do things this way. Some days it's easier than others, but for the most part, it just takes practice. So I'm still practicing.
Reading 'Battlefield of the Mind' by Joyce Meyers - which I highly recommend. And try to get it off Amazon, not her website. No offense, but since they now know me from her website, they will NOT LEAVE ME ALONE! I just wanted to read the book!!! Jeesh. Not that her ministry doesn't do great things, it does - but - OY. Anyway, I digress - I'm finding this book most helpful in fighting the things that come into my mind. About myself, others, strangers - you name it. Quite remarkable concept - so check it out.
Have a great week - I'll keep you posted.
God Bless -
Now, I just need to vent here a minute- because this last treatment was worse than the previous, and I now have more information as to why. The tumors they treated on the right side of my liver were very close to the very edge of the organ, which was then very close to my diaphragm, very close to my lung. I just spoke to a interventional radiologist, as I've been trying to speak with MY interventional radiologist (I just like typing that out a zillion times) but he never called me back after 2 weeks so I finally got this great guy who called me on Friday night around 6pm. He explained this to me - which probably explains why I've had these sharps stabbing pains in my side when I breathe in deeply, severe right shoulder pain, I've basically had pleurisy for the past week. Do you know what I thought it was? Tight muscles or me just not moving enough - so you know what I've been doing all week? Planting my ass on the treadmill at the gym making myself push to to the weight loss setting and 3 miles in 40 minutes. With pleurisy!!! Isn't that hysterical!!! There I am, having trouble breathing thinking 'wow it's hard to breathe, I better adjust the incline a little higher and work this out'. DUH!!!! So, those of you out there getting this procedure, heads up - ask where the tumors are that they are treating and if this is any possibility so you know what to possibly expect in your recovery time. And then if you feel those things - don't get on the treadmill!!!!! Oy. Seriously.
There, I feel much better now. So now I have to go in for an ultra sound on my gall bladder (still trying to figure out why that is important to check - Sean?) before we schedule another quadrasphere. So I figure I'm clear the month of Feb, which, to be honest, I'm quite excited about. The more I do this, the more I'm learning, that's for sure - just a real shitty way to feel while I'm learning, ya know?
I'm not sure how I feel emotionally. Sad I think, at first, and I'm working through that. I really wished I would be the one person who miraculously could have been done just after one procedure. But I am not. It's just that this, this procedure, has been the worst throughout all of this journey - and I will do it again, I will, but I really gotta work super hard and getting my brain back in the game, cuz it's not right now. I just want to feel better so I can run and jump and play with my kids. I want to feel better so I can run and jump and play with my husband ;-) and such. It's like just when I start to feel better, here we go again. And they haven't done many of these at CTCA so it's not organized or anything, again, very frustrating. All of that put together kinda puts you into a weird mindset, not a 'giving up' mindset, but an exasperated one I suppose. I asked the doc at the results appt 'how many times do I have to do this?' and he responded with 'this isn't a cure you know, we are just trying to extend your life as much as possible'. Ouch. Do I know that from his standpoint that this is true? Yes. Do I 'feel' like this is true? No. I'd be lying though if I say I haven't thought these thoughts: 'I don't think it's the cancer that's gonna kill me, I think it's the treatments'. This is just an ass kicker, and it scares me. Do I keep doing it? My oncologist is so gung ho about it, and I wholeheartedly trust him, so I take comfort in that. They did say there is a new infusion chemo that they have in their back pocket if we find this isn't working, so there's that. I just wish we could find it, ya know? I wouldn't mind having chemo every 2 weeks - or having quadrasphere every 6 months, if we knew it was keeping this thing at bay - ya know? I just want to find what it is so I can wrap my brain around it, tell myself to suck it up and then just frickin do it. I hate this flip flopping around trying all this different crap - hate it. Am I blessed that there are things to try? Lord yes, please don't think I'm not grateful for just having options, and maybe I need to remember that a little more. I just want something to work - finally. At least for a little while.
On a completely different note, I am actually able to pull my hair into this teeny tiny ponytail - I haven't been able to do that since I cut it all off way back in 2009. Kinda cool. And also a pain because it takes me way long to blow it out now. Am I complaining about having to DO my HAIR??? Hell no!!! Happy Happy Happy to just have hair, thx.
Still working on the whole trust thing. I do trust God, I do trust Jesus. I trust whatever they have in store for me - fact is, they aren't done with me yet - cuz I'm still here - walking around - so I just try to remember to make it count. To not waste time with BS, to make sure my kids know to be real and genuine and loving, and to make a difference, in whatever way possible. When I find myself wallowing in my own crap I make myself get up and get out and help someone else, that always just seems to put it all in perspective for me. Always does. And I find I hear the Holy Spirit working inside me much clearer when I do things this way. Some days it's easier than others, but for the most part, it just takes practice. So I'm still practicing.
Reading 'Battlefield of the Mind' by Joyce Meyers - which I highly recommend. And try to get it off Amazon, not her website. No offense, but since they now know me from her website, they will NOT LEAVE ME ALONE! I just wanted to read the book!!! Jeesh. Not that her ministry doesn't do great things, it does - but - OY. Anyway, I digress - I'm finding this book most helpful in fighting the things that come into my mind. About myself, others, strangers - you name it. Quite remarkable concept - so check it out.
Have a great week - I'll keep you posted.
God Bless -
Friday, January 13, 2012
Scared - Trust - Breathe - Scared - Trust - Breathe
So Happy New Year and Merry Christmas and all that crap! We actually had the most beautiful Christmas - I was exhausted because of my recovery yes, but also because my girls did not go to sleep until 11pm Christmas Eve then PJ and I (mostly PJ I have to admit, but I helped at the end) had to set up the 14 foot trampoline that Santa somehow fit in his sleigh (luckily no questions emerged about this) in our back yard. We finally got in bed around 2:30 am and the girls were wide awake around 5. But, such is the life of Christmas time with small children. It was a blast, yawning all the way through it. Then we decided to celebrate New Years on NY time, so we were in bed shortly after 10pm. Nice. And yes, I sound like I'm 80 and don't really care to be honest. I own a shawl too by the way, and use it on occasion.
My niece from back east came and visited us just after new years and was here for 10 days, so I've really felt like the holidays are just now over for me - as I put her on the shuttle the other night. But here I sit at CTCA just finished my CT scan and am awaiting results and a check up with my doctor. I was so pumped up by the results last time, I'm trying to not feel like 'this is where the other shoe drops' for this one. Why do I subconsciously feel like that? Is it my innate nature to expect the worst but hope for the best? I hate this part - it doesn't get any easier, cuz I've been in this 'waiting' mode many, so many times before - I keep thinking I should be used to it by now, but I'm not. I just repeat the same things in my head that I always need to be reminded of - things like "I'm not going to let scan results determine how I feel' and 'nothing will ever shake me from my faith - not even cancer' and 'Father God will take care of me no matter what the results' and 'I will continue to ask for healing because that is what His word says he wants for all who believe in Him' and 'you still have to get everyone to school and work on Monday so let's just get in there and get this done so I can get back to my life thank you very much!' It doesn't get any easier. Now that I mention it, it doesn't get harder either, which is a blessing I guess. I think I receive information better now that's for sure - whatever it may be. My trust continues to strengthen which is also good. It takes work though that's for sure - I can feel it in my heart when I haven't tended to my faith like I should. I feel a distance, a kind of 'jaded independence' if you will. Don't like that. So I get back on my knees at my bedside each evening, that works for me. I like to fall asleep with Him on my heart rather than Mob Wives in my brain, although it is VERY tempting. Church of course, and running my MOPS group which is so near and dear to my heart. I was at a loss as to what to pray about with my girls at night. I knew I wanted to pray with them, but I just didn't have the patience for the 'God please bless my pillow, and my toys, and the Angry Birds game on mommy's phone.....'. I mean that's fine I guess, but they obviously aren't getting what this is truly about yet, and they're little, they shouldn't. So we've started just reciting The Lords Prayer at night with our girls before bedtime and it's been really cool - they totally have it memorized already! Pretty cool.
Anyhoo - I am always so conflicted on how to pray at these appointments. Do I pray for complete healing? Yes. Do I pray for strength in whatever the results may be? Yes. Do I tell Jesus I trust Him and fully commit to know that He knows best and I will handle whatever I get? Yes. Do I pray that this will be the last 'procedure' I ever have to have so I can eventually turn into one of those '3 month check up' people? Holy Crap Yes!!!! I guess there is no wrong thing to pray for - even though they are all different things. I find this part confusing.
I've decided to take some things off my plate to give me a little more breathing room. It's been hard, but so incredible helpful, I'm still getting used to it. I have backed off of my Wed bible study group - just for this semester. I found this last time I attended a class that I was turning into more than just an attendee - and was having a hard time saying NO to other things. So, I'm taking a break. I'm getting ready to back away from another commitment but - and I already know the response here - I'm considering auditioning for a play. I haven't had my acting shoes on in, let's see, almost 10 years? Really? Yikes. So, I'm really praying about it because the role is pretty demanding, as is the rehearsal schedule. I want to make sure I have the strength and energy to commit. We'll see - but so cool that I even want to do this. I am taking a class at the local theater for one person shows - and it's coming along quite nicely. Maybe I should focus on that only for now - not sure. Again, praying about this.
So - off I go downstairs now for my check up. Say some prayers if you could - and thank you all who do anyway for me. I can feel your energy coming my way. Those days when I'm so tired I don't think I can make it up off the couch to change the laundry, but I do? I know that is totally prayer giving me the energy. It's certainly not me!
I'll be in touch - God Bless -
Dina
My niece from back east came and visited us just after new years and was here for 10 days, so I've really felt like the holidays are just now over for me - as I put her on the shuttle the other night. But here I sit at CTCA just finished my CT scan and am awaiting results and a check up with my doctor. I was so pumped up by the results last time, I'm trying to not feel like 'this is where the other shoe drops' for this one. Why do I subconsciously feel like that? Is it my innate nature to expect the worst but hope for the best? I hate this part - it doesn't get any easier, cuz I've been in this 'waiting' mode many, so many times before - I keep thinking I should be used to it by now, but I'm not. I just repeat the same things in my head that I always need to be reminded of - things like "I'm not going to let scan results determine how I feel' and 'nothing will ever shake me from my faith - not even cancer' and 'Father God will take care of me no matter what the results' and 'I will continue to ask for healing because that is what His word says he wants for all who believe in Him' and 'you still have to get everyone to school and work on Monday so let's just get in there and get this done so I can get back to my life thank you very much!' It doesn't get any easier. Now that I mention it, it doesn't get harder either, which is a blessing I guess. I think I receive information better now that's for sure - whatever it may be. My trust continues to strengthen which is also good. It takes work though that's for sure - I can feel it in my heart when I haven't tended to my faith like I should. I feel a distance, a kind of 'jaded independence' if you will. Don't like that. So I get back on my knees at my bedside each evening, that works for me. I like to fall asleep with Him on my heart rather than Mob Wives in my brain, although it is VERY tempting. Church of course, and running my MOPS group which is so near and dear to my heart. I was at a loss as to what to pray about with my girls at night. I knew I wanted to pray with them, but I just didn't have the patience for the 'God please bless my pillow, and my toys, and the Angry Birds game on mommy's phone.....'. I mean that's fine I guess, but they obviously aren't getting what this is truly about yet, and they're little, they shouldn't. So we've started just reciting The Lords Prayer at night with our girls before bedtime and it's been really cool - they totally have it memorized already! Pretty cool.
Anyhoo - I am always so conflicted on how to pray at these appointments. Do I pray for complete healing? Yes. Do I pray for strength in whatever the results may be? Yes. Do I tell Jesus I trust Him and fully commit to know that He knows best and I will handle whatever I get? Yes. Do I pray that this will be the last 'procedure' I ever have to have so I can eventually turn into one of those '3 month check up' people? Holy Crap Yes!!!! I guess there is no wrong thing to pray for - even though they are all different things. I find this part confusing.
I've decided to take some things off my plate to give me a little more breathing room. It's been hard, but so incredible helpful, I'm still getting used to it. I have backed off of my Wed bible study group - just for this semester. I found this last time I attended a class that I was turning into more than just an attendee - and was having a hard time saying NO to other things. So, I'm taking a break. I'm getting ready to back away from another commitment but - and I already know the response here - I'm considering auditioning for a play. I haven't had my acting shoes on in, let's see, almost 10 years? Really? Yikes. So, I'm really praying about it because the role is pretty demanding, as is the rehearsal schedule. I want to make sure I have the strength and energy to commit. We'll see - but so cool that I even want to do this. I am taking a class at the local theater for one person shows - and it's coming along quite nicely. Maybe I should focus on that only for now - not sure. Again, praying about this.
So - off I go downstairs now for my check up. Say some prayers if you could - and thank you all who do anyway for me. I can feel your energy coming my way. Those days when I'm so tired I don't think I can make it up off the couch to change the laundry, but I do? I know that is totally prayer giving me the energy. It's certainly not me!
I'll be in touch - God Bless -
Dina
Monday, December 19, 2011
She doesn't have any arms yet mom!
Ginger says this is why Charlie (our chihuahua) can't jump up onto my lap. I think it's funny.
So, can I say pain? Can I say liver pain? How weird is that to even type out, liver pain. I didn't even know your liver could hurt - so weird. This last week has been painful - living on pain meds, and finally, I think I found the right concoction - 1 pain pill + 2 Advil = BINGO!!! So I did that finally on Sunday and finally, I think I found some relief. I mean, I'm still functioning, I don't want to paint the picture that I'm just lying there in the recliner all day, snickering to myself in a pain med trance and randomly laughing at nothing, I kind of do that anyway (just not in a recliner) I am functioning just fine, it just hurts is all. But finally, relief. Today was monumental - just Advil this morning, and didn't need a pain pill till 1pm. Yipee!!!
Whenever you read anything, you obviously form a mental picture in your mind, and I guess I feel the need to let everyone know that throughout this whole ordeal, I was able to rest in the hospital, and then the weekend day or two upon my return from the hospital - but for the most part, I run around just like everyone else - taking my kids to school, Brittany to her functions, running errands, volunteering, etc. All my stuff and my life continues to happen - despite any 'procedure' I endure. Maybe a little slower at times, but I'm still behind the wheel of my minivan singing Christmas carols with my girls. And ya know what? That's exactly the way I like it. My mother likes to say 'take it easy on yourself' or 'you need to rest more and take care of yourself better' and I guess it's your mom's job to say these things - but, just because I am out being a mother, aunt, wife, friend, member of my community - doesn't mean that I'm NOT doing those things, ya know? I really had to think about this - I mean, I am very, very in tuned to my body - I think most cancer patients are - I know when I need to stop, I know when I need to rest - I know when I can push it a little further and when I can't - and I respect my body telling me these things - I have to, or the consequences could literally be fatal. But, I'm not going to stop living - not ever. And I guess I need to admit, right here, right now, that I am a hopeless night owl. I am my fathers daughter. I will stay up late watching the most ridiculous things on tv, just because. I have no reason for it, I think it's in my DNA. There - I said it - I feel much better now.
Got my Christmas cards out - which, becomes more and more important again as a cancer patient. If people you don't talk to on a regular basis not hear from me with the card, they may think I died or something. I'M STILL HERE!!! CHRISTMAS CARD CONFIRMS IT!!! And I'm so looking forward to watching my girls on Christmas morning. They are really getting it this year, and watching them watch Christmas come is by far one of the coolest parts about being a parent. We have lots of traditions we've started, maybe too many - we have our elf of course, Elfie. Then we do 'What God Wants For Christmas' which is an interactive nativity scene we do together as a family and it's so awesome in teaching my kids about the birth of Christ - I wrap Christmas books and we open one a night and we read it together by the tree, we sprinkle reindeer food on Christmas eve out in our front yard. Yes - I am Christmas CRAZY. And now my kids are too. Something must be working because I've caught PJ singing Christmas carols like 3 times already, and that NEVER happens. Welcome PJ - welcome, finally, to my madness. I ordered one of those microphones that plays Christmas music and also turns your voice in an elf voice - have you seen this thing??? It is hilarious - PJ and I haven't even shown it to the kids yet - I hid it in our closet and we were in there tonight playing with it - he was trying to sound all Barry White sexy in this elf voice, and I grabbed it and started saying 'I'm a chemo elf, my liver hurts' in this elf voice. Hilarious.
I digress - so now I wait to see if they scan me or not - I guess there is a possibility they will not, which wouldn't make much sense to me. How else would they know if this is still working or not? In any case, waiting to hear back from scheduling to book that next appt. Knowing I get a break brings me sweet peace. We need to allow my liver to heal and repair itself after these invasive procedures. Liver failure was always a possibility with quadrasphere, something I didn't mention before, but it was. Still is I guess since these chemo filled beads continue to release for 2 weeks following the procedure. But again, I am careful to respect my body and the messages it sends me on how to tend to it.
Each Christmas since my diagnosis means something different to me. I continue to grow in my relationship with Christ, and I continue to draw closer to my family, and what 'holidays' are really all about. I look back at Christmases past, and can totally see how I just didn't 'get' it then, but, in retrospect - I only knew what I knew. I was all about buying the right gift for the right person, going way overboard with my kids, making sure the pictures on my Christmas card were the best, and I would be so stressed, so pissed off all the time, rushing trying to get everything done, and just making everyone miserable around me - only to lead up to Christmas morning and suddenly just expect everyone to 'hurry up and enjoy this!!! it's Christmas!!' And, I'm ashamed to admit it, but I used to really be concerned what people were getting me for Christmas! Now, I don't have this mastered yet, I'm still a work in progress, but this year I'm just so excited to be with my family. I look at my kids faces, I look into the eyes of my husband, I hold my mothers hand in mine, and I know it sounds corny, but I'm just so blessed to be in their presence - to spend Christmas with each other - and share food, smiles, tears, gifts, love, each other - that is what I am just so excited about. I just love Christmas, and each year, the reason is just a little different, a little deeper from the year before. Sounds like a God thing to me.
Merry Christmas
Dina
So, can I say pain? Can I say liver pain? How weird is that to even type out, liver pain. I didn't even know your liver could hurt - so weird. This last week has been painful - living on pain meds, and finally, I think I found the right concoction - 1 pain pill + 2 Advil = BINGO!!! So I did that finally on Sunday and finally, I think I found some relief. I mean, I'm still functioning, I don't want to paint the picture that I'm just lying there in the recliner all day, snickering to myself in a pain med trance and randomly laughing at nothing, I kind of do that anyway (just not in a recliner) I am functioning just fine, it just hurts is all. But finally, relief. Today was monumental - just Advil this morning, and didn't need a pain pill till 1pm. Yipee!!!
Whenever you read anything, you obviously form a mental picture in your mind, and I guess I feel the need to let everyone know that throughout this whole ordeal, I was able to rest in the hospital, and then the weekend day or two upon my return from the hospital - but for the most part, I run around just like everyone else - taking my kids to school, Brittany to her functions, running errands, volunteering, etc. All my stuff and my life continues to happen - despite any 'procedure' I endure. Maybe a little slower at times, but I'm still behind the wheel of my minivan singing Christmas carols with my girls. And ya know what? That's exactly the way I like it. My mother likes to say 'take it easy on yourself' or 'you need to rest more and take care of yourself better' and I guess it's your mom's job to say these things - but, just because I am out being a mother, aunt, wife, friend, member of my community - doesn't mean that I'm NOT doing those things, ya know? I really had to think about this - I mean, I am very, very in tuned to my body - I think most cancer patients are - I know when I need to stop, I know when I need to rest - I know when I can push it a little further and when I can't - and I respect my body telling me these things - I have to, or the consequences could literally be fatal. But, I'm not going to stop living - not ever. And I guess I need to admit, right here, right now, that I am a hopeless night owl. I am my fathers daughter. I will stay up late watching the most ridiculous things on tv, just because. I have no reason for it, I think it's in my DNA. There - I said it - I feel much better now.
Got my Christmas cards out - which, becomes more and more important again as a cancer patient. If people you don't talk to on a regular basis not hear from me with the card, they may think I died or something. I'M STILL HERE!!! CHRISTMAS CARD CONFIRMS IT!!! And I'm so looking forward to watching my girls on Christmas morning. They are really getting it this year, and watching them watch Christmas come is by far one of the coolest parts about being a parent. We have lots of traditions we've started, maybe too many - we have our elf of course, Elfie. Then we do 'What God Wants For Christmas' which is an interactive nativity scene we do together as a family and it's so awesome in teaching my kids about the birth of Christ - I wrap Christmas books and we open one a night and we read it together by the tree, we sprinkle reindeer food on Christmas eve out in our front yard. Yes - I am Christmas CRAZY. And now my kids are too. Something must be working because I've caught PJ singing Christmas carols like 3 times already, and that NEVER happens. Welcome PJ - welcome, finally, to my madness. I ordered one of those microphones that plays Christmas music and also turns your voice in an elf voice - have you seen this thing??? It is hilarious - PJ and I haven't even shown it to the kids yet - I hid it in our closet and we were in there tonight playing with it - he was trying to sound all Barry White sexy in this elf voice, and I grabbed it and started saying 'I'm a chemo elf, my liver hurts' in this elf voice. Hilarious.
I digress - so now I wait to see if they scan me or not - I guess there is a possibility they will not, which wouldn't make much sense to me. How else would they know if this is still working or not? In any case, waiting to hear back from scheduling to book that next appt. Knowing I get a break brings me sweet peace. We need to allow my liver to heal and repair itself after these invasive procedures. Liver failure was always a possibility with quadrasphere, something I didn't mention before, but it was. Still is I guess since these chemo filled beads continue to release for 2 weeks following the procedure. But again, I am careful to respect my body and the messages it sends me on how to tend to it.
Each Christmas since my diagnosis means something different to me. I continue to grow in my relationship with Christ, and I continue to draw closer to my family, and what 'holidays' are really all about. I look back at Christmases past, and can totally see how I just didn't 'get' it then, but, in retrospect - I only knew what I knew. I was all about buying the right gift for the right person, going way overboard with my kids, making sure the pictures on my Christmas card were the best, and I would be so stressed, so pissed off all the time, rushing trying to get everything done, and just making everyone miserable around me - only to lead up to Christmas morning and suddenly just expect everyone to 'hurry up and enjoy this!!! it's Christmas!!' And, I'm ashamed to admit it, but I used to really be concerned what people were getting me for Christmas! Now, I don't have this mastered yet, I'm still a work in progress, but this year I'm just so excited to be with my family. I look at my kids faces, I look into the eyes of my husband, I hold my mothers hand in mine, and I know it sounds corny, but I'm just so blessed to be in their presence - to spend Christmas with each other - and share food, smiles, tears, gifts, love, each other - that is what I am just so excited about. I just love Christmas, and each year, the reason is just a little different, a little deeper from the year before. Sounds like a God thing to me.
Merry Christmas
Dina
Sunday, December 11, 2011
Oy, my liver - that smarts!!
Well, 2nd quadrasphere is done. I have to say that I was really glad that I knew what to expect this time, and super glad I was put under for it as well. However, wanna hear something ironic? Remember the whole morphine pump that was supposed to make everything better? Well, it works much better if its plugged in. Can you believe it? I really think this is hysterical to be honest. There I am, pushing this button, like 4-5 times, not hearing anything, and nothing happening because, you got it, it wasn't plugged in. So, once we got that figured out, then it did seem to help me quite a bit, however, everytime I would wake up out of a morphine sleep, I'd feel really great and rested, then immediately have to throw up. So I once again was sick like, 3-4 times this time again. But again, I knew what this felt like, so I was ready for it, and moved right through it. I must admit as well, that I prayed all the way through these moments too, something I didn't do last time because I was way too scared. This too helped. By Fri morning, I knew I had to switch from Morphine to Percocet - and that seemed to do the trick. No more throwing up, thank God. Now, the pain, the liver pain I'm experiencing this time, is much more intense than the last time, so I am trying to manage that.
Also, this is strange, but everything I drink tastes sugary - makes sense I guess considering what the function of your liver is - I just think it's so interesting how this organ, and having major trauma happen to it, can effect your overall body operation. Managing this pain has been a challenge this weekend, a real challenge. My husband, children, niece, mother and friends who have watched my kids and fed me have literally been a God send. Where would I be without these gifts God as given me?
I'm going to try to get back into the saddle again tomorrow, but I am still not moving around real fast yet, which is just real frustrating. The deal is now that I will go back in a month, get scanned, see what the deal is, and 'take a break' which, is fine w/ me. I will welcome a break, if it is safe for me to do so. My doc says we need to be careful not to hit the liver to hard too fast because of the possibility of liver failure, minor detail. I just want this thing gone. I'm so over this.
So I've heard from Rep Paul Gosar, and Senator John Kyl, and Senator John McCain kinda blew me off. But the other two are going to bat for me, and I'm thrilled. I keep praying that I will continue to receive this ground breaking treatment, and stay with this awesome team of people who just seem so focused on fighting this thing with me. I get such an 'army' feeling from them, ready to conquer this on my behalf.
I'm fading a bit now, but wanted to check in and let everyone know I am ok, and am adequately medicated, oh my am I medicated. I'll write more later this week.
God Bless -
Dina
Also, this is strange, but everything I drink tastes sugary - makes sense I guess considering what the function of your liver is - I just think it's so interesting how this organ, and having major trauma happen to it, can effect your overall body operation. Managing this pain has been a challenge this weekend, a real challenge. My husband, children, niece, mother and friends who have watched my kids and fed me have literally been a God send. Where would I be without these gifts God as given me?
I'm going to try to get back into the saddle again tomorrow, but I am still not moving around real fast yet, which is just real frustrating. The deal is now that I will go back in a month, get scanned, see what the deal is, and 'take a break' which, is fine w/ me. I will welcome a break, if it is safe for me to do so. My doc says we need to be careful not to hit the liver to hard too fast because of the possibility of liver failure, minor detail. I just want this thing gone. I'm so over this.
So I've heard from Rep Paul Gosar, and Senator John Kyl, and Senator John McCain kinda blew me off. But the other two are going to bat for me, and I'm thrilled. I keep praying that I will continue to receive this ground breaking treatment, and stay with this awesome team of people who just seem so focused on fighting this thing with me. I get such an 'army' feeling from them, ready to conquer this on my behalf.
I'm fading a bit now, but wanted to check in and let everyone know I am ok, and am adequately medicated, oh my am I medicated. I'll write more later this week.
God Bless -
Dina
Wednesday, December 7, 2011
Twas The Night Before Quadrasphere..........
Well, here we go again. Scheduled for another zap of the cancer cells tomorrow morning. Pre-op at 8am and procedure at 9. I am so optimistic, it's strange. I'm actually a little excited. I think because I know it's working it a huge part of it, but also because I'm feeling so good these days, maybe for the same reason. Who knows. I'm just full of hope.
Alright, I am scared too. I can't help but be afraid to think I am going right back in there to feel super shitty again, for like, 14 days afterwards - but at least I know what the worst feels like. And again, knowing that it's working, makes the blow a whole lot more bearable. Plus, as soon as that fear creeps in, gotta let God creep right in and take it. Practice makes perfect.
We had a great time at the Polar Express this past weekend. It was so great. The girls were just so excited, and I think the best part was one of the most unplanned things. We got there, had a great lunch at a local diner, checked in to our room, picked up the tickets, played in the snow, got into our jammies, took the train to the North Pole, had cookies and hot chocolate, met Santa, had dinner, then settled in for the night. Then, when we are all tucked into bed - PJ and Ginger in one bed, and Madeline and I in the other, I turn the TV onto 'Its A Wonderful Life'. The 4 of us laid there and watched the whole thing. Madeline asking questions the whole time, and really getting into the story. Of course one of her first questions was 'why doesn't this movie have any color mom? why is it in black and white?' but once we got past that, she was way into the story line. I have to say it was one of the coolest life moments I think I've ever experienced. I am so blessed. I have just the best little family ever.
I need to share a passage from a book I've been reading off and on here for awhile, and this passage is one that I read before I went in for my scan and results of the quadrasphere. It's one of those ironic moments - well, ironic is probably not the right word. In any case, here it is:
'God will speak to you too - straight to your heart. I can't promise everything will be okay. It may be; it may not be. But I promise, based of the faithfulness of God, that you can be okay. Just don't pull up that anchor. And never let go of the rope.'
I just think this is awesome. I needed a reminder like this. I wish I could write more here, but I should probably get to sleep since we have to hit the road by 6am. As of midnight I can't have anything to eat or drink till my procedure tomorrow. I'm starting to think maybe Taco Bell wasn't the greatest choice for dinner before this procedure where I don't eat for 2-3 days. Hmmmm. I'm going to go drink a big glass of water.
I can't thank you enough for your prayers, and if you could spare a few more, send em up around 9am tomorrow, cool? Bring It On!!!
God Bless -
Dina
Alright, I am scared too. I can't help but be afraid to think I am going right back in there to feel super shitty again, for like, 14 days afterwards - but at least I know what the worst feels like. And again, knowing that it's working, makes the blow a whole lot more bearable. Plus, as soon as that fear creeps in, gotta let God creep right in and take it. Practice makes perfect.
We had a great time at the Polar Express this past weekend. It was so great. The girls were just so excited, and I think the best part was one of the most unplanned things. We got there, had a great lunch at a local diner, checked in to our room, picked up the tickets, played in the snow, got into our jammies, took the train to the North Pole, had cookies and hot chocolate, met Santa, had dinner, then settled in for the night. Then, when we are all tucked into bed - PJ and Ginger in one bed, and Madeline and I in the other, I turn the TV onto 'Its A Wonderful Life'. The 4 of us laid there and watched the whole thing. Madeline asking questions the whole time, and really getting into the story. Of course one of her first questions was 'why doesn't this movie have any color mom? why is it in black and white?' but once we got past that, she was way into the story line. I have to say it was one of the coolest life moments I think I've ever experienced. I am so blessed. I have just the best little family ever.
I need to share a passage from a book I've been reading off and on here for awhile, and this passage is one that I read before I went in for my scan and results of the quadrasphere. It's one of those ironic moments - well, ironic is probably not the right word. In any case, here it is:
'God will speak to you too - straight to your heart. I can't promise everything will be okay. It may be; it may not be. But I promise, based of the faithfulness of God, that you can be okay. Just don't pull up that anchor. And never let go of the rope.'
I just think this is awesome. I needed a reminder like this. I wish I could write more here, but I should probably get to sleep since we have to hit the road by 6am. As of midnight I can't have anything to eat or drink till my procedure tomorrow. I'm starting to think maybe Taco Bell wasn't the greatest choice for dinner before this procedure where I don't eat for 2-3 days. Hmmmm. I'm going to go drink a big glass of water.
I can't thank you enough for your prayers, and if you could spare a few more, send em up around 9am tomorrow, cool? Bring It On!!!
God Bless -
Dina
Friday, December 2, 2011
Joy To The World...the death of cells......la la la la la
So that is the final word after my scan last week - tumors are stable and dying. The awesome word again was used, necrosis which means via Microsoft 'lookup word search': the death of cells in a tissue or organ caused by disease or injury. Praise God!!!! I have to say - it was soooo difficult to walk in there and know that I needed to trust Him no matter what the results, but I give Him all the credit for the results. The left side, where the largest tumor sat like a big fat gross guy (I picture the snot guys from the Mucinex commercials - weird, right?) is dying - and the small ones he shot with the beads on the right side are as well. There was one tiny one that he did not get that was on the right lower side that is a bit bigger, but that is what they will address when we go back in and shoot it again next week. I can't imagine they will just go in for that tiny one, I have a feeling they will shoot the left side again, which, I am totally prepared for now. After discussing how awful this first time was, we came up with a plan to maybe fix somethings this time in. I'll be put under for it, yay, and then hooked up with a morphine pump right afterwards in recovery so it is all in place when I go up to my room. Plus, I went for a check up with my onc yesterday my dietitian said that my liver may not react as dramatically this next time. Kinda makes sense I guess, I mean when I had my very first chemo treatment my body completely rejected it - duh - it's poison - so it makes sense my liver would react the same way. I'm just so ready, now that I know it's working, to get in there and have them zap it again. Bring it ON!!! I can't tell you how blessed I am to have these results. Many don't, and I know that. I remember when I received these similar results after my first check up after theresphere, and I've decided I'm not comparing this experience to that - I can't. What I can do differently this time, is believe my healing is possible, and give Him all the credit for it. That is what I'm working on now. Also, my blood work yesterday showed by white and red blood cells completely normal which is awesome, my tumor markers down, and my liver enzymes much improved from the last set of labs. Yay! And I ask them too "Is this normal normal or cancer patient normal?" They say its normal normal. Yay!
So, I had mentioned I'd been struggling with my new role of taking in my special needs niece. I have. But I think I have made a huge jump with this struggle this week that I feel I need to share here. My dear friend who has special needs daughters, introduced me to a place called YEI - Yavapai Exceptional Industries and it is, mind blowing. It is a facility that subcontracts with companies to do piece work, thus finding employment for these special needs individuals. They provide jobs for every need level, and gives them an opportunity to earn a wage, albeit small, an honest wage and take part in society. They work at their own pace, with their friends, have lunch together, take breaks, go bowling, to the Y and exercise, have Hawaiian shirt day, go to the movies - such great stuff - all together, with each other. These are the same people Brittany has met through her SNAP program, so she already knew a greater portion of the people there. She craves purpose, and it is awesome to suddenly be able to provide her with a peer group. I filled out a buttload of paperwork and it all went through I guess, and she started this past Wed. For now, she will go 2 times a week, and it just gives her such purpose. I can't tell you how cool this is, and had no idea such programs were available for the special needs individuals in our community. Fighting with DDD right now as I was denied that benefit too, but I have appealed that as well, and we will see where it ends up. That will help with rides and respit care and just general funding and assistance, so let's see if I can get that pushed through too. Oy! What is with me and government programs!! I can't get out of one for me, and can't get one in place for my special needs niece!!! Doesn't make any frickin sense to me at all. Good thing I don't take NO for an answer, no matter which direction it goes.
We are now getting ready for the Polar Express this weekend, just the 4 of us are going and we are excited. Good snow yesterday, so it's going to be adequately Christmassy - and we are excited to usher in the Christmas spirit this way. Super excited.
Thank you all for your prayers, they have been answered. I am so blessed. What a perfect Christmas gift, I couldn't ask for anything more. I do ask for continued prayers for continued healing as I head into this next quadrasphere. There very well may be another after this. (rule of 3 - how oddly appropriate for me eh?) And all I read, over and over, and I get something different every time I read it, is Proverbs 3, Psalm 91 and now I've added Daniel 3. I am just in awe of such trust. I humbly hope to replicate this trust every day of my life. What an awesome release.
God Bless -
Dina
So, I had mentioned I'd been struggling with my new role of taking in my special needs niece. I have. But I think I have made a huge jump with this struggle this week that I feel I need to share here. My dear friend who has special needs daughters, introduced me to a place called YEI - Yavapai Exceptional Industries and it is, mind blowing. It is a facility that subcontracts with companies to do piece work, thus finding employment for these special needs individuals. They provide jobs for every need level, and gives them an opportunity to earn a wage, albeit small, an honest wage and take part in society. They work at their own pace, with their friends, have lunch together, take breaks, go bowling, to the Y and exercise, have Hawaiian shirt day, go to the movies - such great stuff - all together, with each other. These are the same people Brittany has met through her SNAP program, so she already knew a greater portion of the people there. She craves purpose, and it is awesome to suddenly be able to provide her with a peer group. I filled out a buttload of paperwork and it all went through I guess, and she started this past Wed. For now, she will go 2 times a week, and it just gives her such purpose. I can't tell you how cool this is, and had no idea such programs were available for the special needs individuals in our community. Fighting with DDD right now as I was denied that benefit too, but I have appealed that as well, and we will see where it ends up. That will help with rides and respit care and just general funding and assistance, so let's see if I can get that pushed through too. Oy! What is with me and government programs!! I can't get out of one for me, and can't get one in place for my special needs niece!!! Doesn't make any frickin sense to me at all. Good thing I don't take NO for an answer, no matter which direction it goes.
We are now getting ready for the Polar Express this weekend, just the 4 of us are going and we are excited. Good snow yesterday, so it's going to be adequately Christmassy - and we are excited to usher in the Christmas spirit this way. Super excited.
Thank you all for your prayers, they have been answered. I am so blessed. What a perfect Christmas gift, I couldn't ask for anything more. I do ask for continued prayers for continued healing as I head into this next quadrasphere. There very well may be another after this. (rule of 3 - how oddly appropriate for me eh?) And all I read, over and over, and I get something different every time I read it, is Proverbs 3, Psalm 91 and now I've added Daniel 3. I am just in awe of such trust. I humbly hope to replicate this trust every day of my life. What an awesome release.
God Bless -
Dina
Subscribe to:
Posts (Atom)