Well, my hair started to really come out on Thurs night. I should have known because my scalp had actually been bothering me all week. The feeling you get when you've had a ponytail in all day, or when you wear a hat all day? That's how it was feeling, and I didn't have a ponytail or a hat on - so I was totally in denial and suspicious. In any case, when I took a shower Thurs night it was very apparent that my hair was coming out - as I had handfuls of it when I washed my hair. Sigh. Here we go again.
Then, Sat morning, I went to take a shower and it was like someone had shaved my head in my sleep - tons of hair falling out - like clog the drain in the shower amounts. Great. I kinda had decided prior to this that I would just let it thin out and maybe wear hats for awhile, till it got too much to bear. Last time PJ shaved me right when it started falling out - and I mean shaved to the scalp - I kinda didn't want to jump right into that this time. So I get out of the shower, and as I start combing my hair - I realize I have huge, matted clumps stuck in my hair - my hair was coming out so badly, it actually was getting stuck in the hair that was still attached. I call PJ in to help me, and I'm trying desperately to comb it out - and it's just falling, in this huge pile of hair on the bathroom floor and I just cried. He held me, and after about 15 minutes, I had combed so much out I had this huge bald spot on the side of my head. My Ginger asked me what was happening, and I told her that the medicine that mommy was taking to kill her cancer also, apparently, makes her hair fall out. I tried to not break down in front of her, but I was crying. She left, got tissues, brought them to me, then told me 'its ok mommy'. I just wasn't mentally prepared to be here quite yet - I didn't think this was where I would be after 1 treatment - 1!!! I told PJ that I wanted to call Mary Jo at the Wig Wam, which is this little local wig shop and hair salon as she had helped me in the past, and ask her to shave my head. I wasn't about to walk around with this horrific bald spot on my head - and God forbid a strong wind catch me, I swear it all would have gone flying - I'm serious, I couldn't believe how much was coming out.
I decided we were all going to go - make this a family affair. So, we all piled in the van, and headed to the Wig Wam for mom's head shaving party. To be honest, if actually felt really good once she was done, because my scalp was aching so much - it was a nice relief. Just so hate the way it looks. But more than that - the worst part about this losing my hair thing? Now, I look like I'm sick to everyone else. I really, really liked being the 'no one would ever know what you're going through' Dina. Now, I'm the frickin 'cancer patient' looking Dina - AGAIN - and I hate that part. I hate the looks, the awkward silences, the constant reminder to me even, that this is where I am - AGAIN. And, unlike the first time I lost my hair - now I get to deal with even MORE of the pitiful looks from those that knew this happened before - because people are probably thinking 'well, she's really going downhill now, I mean this is the 2nd time she's done this, how many more can someone take?' So frustrating. So revealing. Like someone forced you to take the most vulnerable part of you and plaster it on a t-shirt for you to walk around wearing for all to see.
Ironically, I feel great. I have energy, I'm sleeping well, my pain level is little to nothing, and I have no hair. ?
My girls are handling it pretty well - Madeline gets this way more now at 6 than she did at 3 - so she and I have some pretty heavy out of the blue discussions, and Ginger told me she didn't want to cut off her hair. I told her she didn't have to and she seemed relieved. I just have stubble so I can still have a hair line for as long as it lasts, so Ginger likes to rub it and tell me it feels like daddy's whiskers. PJ was having a tough time yesterday - he was processing it all too. I mean, he gets it the same way I do - he gets the looks too, as the spouse of the cancer patient, and it just sucks. But once again, as if he and I couldn't get any closer - we have. I didn't realize it, but I was afraid to lean on my husband for a greater part of me dealing with this disease. I knew he was 'dealing' with it in his own way and didn't want to worry him with anything more, including my thoughts, fears, feelings - and that was wrong. The past couple of months we have really tackled this head on, and it's taken our marriage to a new level. That, plus our faith really growing together which is an entirely different level too - is pretty frickin awesome. I am so blessed to have found this man. Well, it's totally God, thank you God for PJ. He takes such good care of me - what a privilege to be his wife. And yes, he shaved his head once we got home. Even Brittany offered to shave her head, bless her little heart. I told her thank you but no, she didn't have to do that. So sweet.
So I go get my blood drawn again tomorrow morning and we'll see where we are. If I can just finish this cycle, then I can get my Nulasta shot and we're on our way! Have to finish the cycle in order for me to get one of these, so that is key.
I have the Jesus Calling app on my phone, and I absolutely love it. It is freaky the way it applies to me - and maybe it does this for everyone, but sometimes, it's just amazingly appropriate. Check this out:
" Make friends with the problems in your life. Though many things feel random and wrong, remember that I am sovereign over everything. I can fit everything into a pattern for good, but only to the extent that you trust Me. Every problem can teach you something, transforming you little by little into the masterpiece I created you to be. The very same problem can become a stumbling block over which you fall, if you react with distrust and defiance. The choice is up to you, and you will have to choose many times each day whether to trust Me or defy Me.
The best way to befriend your problems is to thank Me for them. This simple act opens your mind to the possibility of benefits flowing from your difficulties. You can even give persistent problems nicknames, helping you to approach them with familiarity rather than with dread. The next step is to introduce them to Me, enabling Me to embrace them in My loving presence. I will not necessarily remove your problems, but My wisdom is sufficient to bring good out of every one of them. "
I think I'll call my cancer Gladys. God, meet Gladys. Thank you for Gladys, for she has made me a better person, a better mother, a better wife, a better child of God. She has brought out pieces of me I didn't even know existed. She has shown me life in a way that is difficult to explain. She also brought me closer to you and your son, which has changed my life entirely. Now, if you wouldn't mind, I'd really appreciate it if I could drop Gladys off at your house, and you could ask her in for dinner, then, when she goes to the restroom to freshen up, you would poison her with the chemo I'm currently receiving, so we would never have to deal with her again. That would be great - thanks.
God Bless -
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Sunday, March 4, 2012
Thursday, March 1, 2012
Enough already.............................................................
So - I've been trying really hard to get to bed earlier, which is why I haven't posted in awhile - so I have a bit of catching up to do.
Seems my first dose of the new treatment has done quite a number on me. I went in for my next treatment last week only to be refused because my white blood cell count went from 10,000 to 2,000. Not good. And apparently they couldn't' give me the Nulasta shot, wait a day, then give me my chemo. I asked. My Dr said I was one of the few patients of his who was trying to bargain with him for chemo. I was so upset. I've never, ever, had a problem with my labs - my counts have always been good - so this was shocking to me. So we were sent away, and I was to have my labs done up here on Wed (yesterday) then they would be faxed to CTCA and I'd know if I could have treatment this week - like, tomorrow. Can you frickin believe they are worse now? I was instructed to stay away from crowds, to not eat any fresh fruit or vegetables, and was put on an antibiotic just to be safe. What the chicken is going on???????? Now, when I didn't get the treatment the first time I asked if I was losing ground here on killing this cancer - that me having to wait on treatment was giving a 'leg up' on the cancer. My Dr told me no, that this just meant that the drug was still working in my system. Hmmmm. Didn't know that. Now this time, today being refused treatment yet again, I think I get it a little more. And here's why - I'm showering this evening, and guess what?? My hair is coming out in hand fulls. Can you frickin believe this? It was like I was thrown back to when this all started. I can't believe this. Am I really going to lose my hair again? Really? I guess this means the drug is certainly still working in my system - I mean if it's doing this to my immune system, now the hair, after 1 dose, I would most certainly, prayerfully assume that it's killing the cancer. It didn't bother me in the shower - but when I called PJ in to tell him, I just broke down. I find such comfort in being held by my husband. I didn't realize it, but I haven't allowed myself to be needy of him in this way much through this journey. I was too busy trying to protect him from worrying about me. Once again, God is connecting us deeper. Anyway, just pissed about my hair because I just really like being the one to choose who knows I'm sick and who doesn't. When you're bald - it's kinda obvious. Sucks.
I just need to focus more. I need to focus more on healing, on resting, on taking care of me I guess. I feel like I am, but I guess I'm not. I mean, I'm doing what every mom is doing by taking care of her children, and her husband. I realize not all moms have their mom down the street who is also going through chemo who needs tending to, their special needs niece living with them needing tending to in addition to her own 2 kids and hubby. I know that I listen to my body more now than I have before - I rest when I need to - I don't feel like I'm out there trying to be super mom or anything, I'm doing what I'm supposed to be doing. It apparently isn't enough. It's scary to hear you don't have what you need to fight off infection or illness. If I'm not careful, I think I have the power to talk myself into being sick, ya know?
Jennifer and I spoke today and we discussed that when I initially started chemo way long ago we were so focused. I was focused on my treatment and getting better - 110%. Now it's more like treatment is something I do because it's on my schedule. I get that - I also get how easy it has been to just try to have a life - my life - while dealing with this disease. It just got a little more serious this time, and maybe I've not taken the serious mindset along with the serious situation of my cancer progressing. Maybe that's it. Gotta get my brain back in the game. Well, there's nothing like a frickin bald head staring at you in the mirror to remind you of how serious this is.
So I'm quarantined here at the house for the weekend starting tomorrow. Can't even go to church on Sunday. The care manager told me today that when Dr. Nixon read my blood test results he was baffled. I'm really, really tired of baffling people - what gives? Why won't my body respond like everyone else's? Why? I'm whining in this post aren't I? Sorry. I just feel like I keep getting beat down - I pick myself up and I get pounded again and again.
Then - I look at my kids faces. Then - I look at my husbands face. And I'm driven, yes. I'm also scared to death. Am I giving myself too much credit to think they can't survive without me? The mom is the driving force of the family - at least I am for mine - what happens when mom goes down? So scary - so scary. I mean, luckily my 'auto pilot' is to fight - just point me in the fighting direction and I go - but I'm much more effective at it if I am intentional about the fight - if that even makes sense. Right now, I feel like I'm on auto pilot. I gotta get intentional.
When I told Madeline I was back on chemo she said 'oh man! are you going to lose your hair again mom?' and I told her I didn't know - I hate that this is what my kids have to watch. That this evening I had to explain to her what cancer cells do inside my body, and that the chemo is what kills the cancer cells. She's a hell of a lot smarter this time around - her questions are going to get tougher to answer. But I will always be honest with my kids - no lies, no real elaboration either - short and to the point.
Well, my pain meds for my shoulder are taking effect so I best be getting off to bed. Ya know, it's funny. My days I get to spend with Ginger while Madeline is in school are so awesome lately. She is really a great hang. Funny though, she constantly catches me talking out loud - and she will ask me 'mom - who are you talking to?' and I say 'Jesus hun'. I do - I talk to Him numerous times throughout the day - I just need to be more intentional in listening to Him. I certainly have the talking part down, need to put my listening ears on.
God Bless
Seems my first dose of the new treatment has done quite a number on me. I went in for my next treatment last week only to be refused because my white blood cell count went from 10,000 to 2,000. Not good. And apparently they couldn't' give me the Nulasta shot, wait a day, then give me my chemo. I asked. My Dr said I was one of the few patients of his who was trying to bargain with him for chemo. I was so upset. I've never, ever, had a problem with my labs - my counts have always been good - so this was shocking to me. So we were sent away, and I was to have my labs done up here on Wed (yesterday) then they would be faxed to CTCA and I'd know if I could have treatment this week - like, tomorrow. Can you frickin believe they are worse now? I was instructed to stay away from crowds, to not eat any fresh fruit or vegetables, and was put on an antibiotic just to be safe. What the chicken is going on???????? Now, when I didn't get the treatment the first time I asked if I was losing ground here on killing this cancer - that me having to wait on treatment was giving a 'leg up' on the cancer. My Dr told me no, that this just meant that the drug was still working in my system. Hmmmm. Didn't know that. Now this time, today being refused treatment yet again, I think I get it a little more. And here's why - I'm showering this evening, and guess what?? My hair is coming out in hand fulls. Can you frickin believe this? It was like I was thrown back to when this all started. I can't believe this. Am I really going to lose my hair again? Really? I guess this means the drug is certainly still working in my system - I mean if it's doing this to my immune system, now the hair, after 1 dose, I would most certainly, prayerfully assume that it's killing the cancer. It didn't bother me in the shower - but when I called PJ in to tell him, I just broke down. I find such comfort in being held by my husband. I didn't realize it, but I haven't allowed myself to be needy of him in this way much through this journey. I was too busy trying to protect him from worrying about me. Once again, God is connecting us deeper. Anyway, just pissed about my hair because I just really like being the one to choose who knows I'm sick and who doesn't. When you're bald - it's kinda obvious. Sucks.
I just need to focus more. I need to focus more on healing, on resting, on taking care of me I guess. I feel like I am, but I guess I'm not. I mean, I'm doing what every mom is doing by taking care of her children, and her husband. I realize not all moms have their mom down the street who is also going through chemo who needs tending to, their special needs niece living with them needing tending to in addition to her own 2 kids and hubby. I know that I listen to my body more now than I have before - I rest when I need to - I don't feel like I'm out there trying to be super mom or anything, I'm doing what I'm supposed to be doing. It apparently isn't enough. It's scary to hear you don't have what you need to fight off infection or illness. If I'm not careful, I think I have the power to talk myself into being sick, ya know?
Jennifer and I spoke today and we discussed that when I initially started chemo way long ago we were so focused. I was focused on my treatment and getting better - 110%. Now it's more like treatment is something I do because it's on my schedule. I get that - I also get how easy it has been to just try to have a life - my life - while dealing with this disease. It just got a little more serious this time, and maybe I've not taken the serious mindset along with the serious situation of my cancer progressing. Maybe that's it. Gotta get my brain back in the game. Well, there's nothing like a frickin bald head staring at you in the mirror to remind you of how serious this is.
So I'm quarantined here at the house for the weekend starting tomorrow. Can't even go to church on Sunday. The care manager told me today that when Dr. Nixon read my blood test results he was baffled. I'm really, really tired of baffling people - what gives? Why won't my body respond like everyone else's? Why? I'm whining in this post aren't I? Sorry. I just feel like I keep getting beat down - I pick myself up and I get pounded again and again.
Then - I look at my kids faces. Then - I look at my husbands face. And I'm driven, yes. I'm also scared to death. Am I giving myself too much credit to think they can't survive without me? The mom is the driving force of the family - at least I am for mine - what happens when mom goes down? So scary - so scary. I mean, luckily my 'auto pilot' is to fight - just point me in the fighting direction and I go - but I'm much more effective at it if I am intentional about the fight - if that even makes sense. Right now, I feel like I'm on auto pilot. I gotta get intentional.
When I told Madeline I was back on chemo she said 'oh man! are you going to lose your hair again mom?' and I told her I didn't know - I hate that this is what my kids have to watch. That this evening I had to explain to her what cancer cells do inside my body, and that the chemo is what kills the cancer cells. She's a hell of a lot smarter this time around - her questions are going to get tougher to answer. But I will always be honest with my kids - no lies, no real elaboration either - short and to the point.
Well, my pain meds for my shoulder are taking effect so I best be getting off to bed. Ya know, it's funny. My days I get to spend with Ginger while Madeline is in school are so awesome lately. She is really a great hang. Funny though, she constantly catches me talking out loud - and she will ask me 'mom - who are you talking to?' and I say 'Jesus hun'. I do - I talk to Him numerous times throughout the day - I just need to be more intentional in listening to Him. I certainly have the talking part down, need to put my listening ears on.
God Bless
Sunday, February 19, 2012
Don't worry - you won't catch my chemo
Well, first treatment is done and overwith. I am no longer in the pain I was in before treatment, which is sooooo good. Considering the doc said I would have to wait 3-5 days after my first treatment for pain relief and I felt it the next morning, I consider this divine intervention, and give Jesus all the praise - thank you .
Friday was interesting - I was able to meet w/ my onc then the mind body spirit guy and he and PJ and I had a great talk. Really helped me. He says things to me that are just to the point, no 'making nice' which is a sweet relief. Reminded me to just let things be, and focus on healing, and allowing the treatments to do their thing. He said a lot more, reminding me to put me first, something I needed reminded to do. Told me not to fall into the typical 'breast cancer super mom' stereotype that he sees over and over again. Relieved me from feeling like I have to take care of everybody in my family - and we touched on some mother issues I need to spend some time in prayer about. Some deep shit, but good - all good. Then my onc walks in and says he has spoken in the quadrasphere guy and he wants to go ahead with that once I get on the Halivan routine - what??? My eyes felt like they popped out. I can't imagine doing both of these treatments simultaneously - but we will see. Right now I'm just focusing on this chemo treatment. Infusion was good I guess - and these new pumps give me all my premeds at once - so cool!!! I don't have to wait for one after the other - I get the steriod, the anti nausea med and the benedryl all at the same time - then my actual chemo drug is a push that takes 2-3 minutes. So they watched me for a bit, then I just realized that if they let me I'd just sleep in that chair for as long as they'd let me, I'd snooze myself to sleep. So I got my ass up and out we went. Groggy, but fine. I was pretty much fine until last night, that's when the steroid flush came upon me, oh how reminded I am now of all this side effect fun! Yes, I had forgotten actually that I was supposed to have a mommy & Madeline sleepover last night where we just got a hotel room locally and hung out. So we do this even though I'm starting to feel the side effects of my treatment (red face, nothing tastes right) and Madeline has the stomach bug that Ginger had last week - yay!!! But we had fun nontheless. Luckily she is old enough now to take some of these over the counter meds to find relief quickly for her - bless her heart. But we went swimming, hot tubbing, burnt popcorn in the room, ordered room service - we had a blast. Then off to church this morning to meet the rest of the family. That's where my encounter happened. I'm sure it was just a TMI moment, but it struck me as funny. See, I have found lately that when I tell my story - and I mean my whole story, it makes people a little, ok a LOT uncomfortable. It's like - tragedy overload for some people - and I can feel myself as I tell it, I can hear myself thinking 'ok, don't get too sucked in here, cuz there's more coming' it's like I almost have to lessen the reality of my own story to save the person I'm telling the pain of hearing it - does that make sense? It's ridiculous!
So, I had mentioned my meeting with one of the new pastors at my church sometime back, where I just wanted some spiritual guidance I guess, had hit a wall and wanted to talk it through - well, this was one of those moments. So, I haven't been back since, but I do get the longer hand shake and hug from him when we meet at church, and that is good and quite comforting to me. Well, this morning, I guess I felt like I had to share my divine intervention - I mean this pain gone this is a HUGE deal to me - I've been in pain where it hurt so bad to sneeze or yawn, I looked like I was giving birth each time either one of these things happened, now, I'm learning how to do these things normally again - I thought this was monumental. So when I get approached for the hug I mention that I started chemo onFriday which ilicited a quick stink face and a couple steps back. Hmm - ok. Then I try to make it ok by saying 'but my pain was gone instantly it was totally Jesus!' and I get 'I just wanted you to know I was praying for you' and off he went lickity split. Now, I only bring this exchange up because I find it ironic - I'm not upset by this,not in the least, I'm fine. I just think it's funny that here I go trying to appease others 'uncomfortableness' with my situation, yet again. I hate that this disease is all some people see now when they see me. I wish they saw me - but they don't. That's the part that I wanted to talk about. And it's not just this pastor, it's people who just don't know me. I liked it better when people didn't know me they really knew nothing about me - now - they all seem to know I have cancer - and that's all they know about me. So I get the pity look, or the shoulder touch, or the smile with the head tilt. Sucks. Because I think I have something to learn from certain people, and they just can't get past the cancer part. Sucks again.
So I'm drinking water with frozen fruit in it (tastes really good actually) and that's really about it - everything else tastes awful. Back I go to eating all natural which I was doing OK before, but now that I can't taste anything with preservatives, I'm going to go all organic and start a plant, fruit and fish based diet. Some chicken, but no meat - little dairy - that's it. My friend is going to show me how to shop like this this week - very excited. Ready for some new fresh ideas - ya only know what ya know - gotta change up what I know - ya know?
So I'm asking for positive prayers, sending out the bad thoughts that creep into my brain with a big FU to Satan and then the awesome catch phrase Pastor Dan gave me this morning, God's Got my Back. That has worked wonders so far today. Thank You!!!
Need to watch my Sunday eve zombie show with my hubby so I bid u farewell. Glad to have nothing to do tomorrow. Need one more day of rest, gotta get into a groove here. Not there yet. Clearly.
I read the following passage today for the first time ever and it just filled me with such - life? Not sure how else to explain it. It's Habakkuk 3:17-19. I know - I never even LOOKED and this book in the Bible - anyway, I'll just share the last line, but please check this out - it is amazing:
' The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to go on the heights.'
This visual is just so comforting to me. I love it. Check in tomorrow - God Bless.
Dina
Friday was interesting - I was able to meet w/ my onc then the mind body spirit guy and he and PJ and I had a great talk. Really helped me. He says things to me that are just to the point, no 'making nice' which is a sweet relief. Reminded me to just let things be, and focus on healing, and allowing the treatments to do their thing. He said a lot more, reminding me to put me first, something I needed reminded to do. Told me not to fall into the typical 'breast cancer super mom' stereotype that he sees over and over again. Relieved me from feeling like I have to take care of everybody in my family - and we touched on some mother issues I need to spend some time in prayer about. Some deep shit, but good - all good. Then my onc walks in and says he has spoken in the quadrasphere guy and he wants to go ahead with that once I get on the Halivan routine - what??? My eyes felt like they popped out. I can't imagine doing both of these treatments simultaneously - but we will see. Right now I'm just focusing on this chemo treatment. Infusion was good I guess - and these new pumps give me all my premeds at once - so cool!!! I don't have to wait for one after the other - I get the steriod, the anti nausea med and the benedryl all at the same time - then my actual chemo drug is a push that takes 2-3 minutes. So they watched me for a bit, then I just realized that if they let me I'd just sleep in that chair for as long as they'd let me, I'd snooze myself to sleep. So I got my ass up and out we went. Groggy, but fine. I was pretty much fine until last night, that's when the steroid flush came upon me, oh how reminded I am now of all this side effect fun! Yes, I had forgotten actually that I was supposed to have a mommy & Madeline sleepover last night where we just got a hotel room locally and hung out. So we do this even though I'm starting to feel the side effects of my treatment (red face, nothing tastes right) and Madeline has the stomach bug that Ginger had last week - yay!!! But we had fun nontheless. Luckily she is old enough now to take some of these over the counter meds to find relief quickly for her - bless her heart. But we went swimming, hot tubbing, burnt popcorn in the room, ordered room service - we had a blast. Then off to church this morning to meet the rest of the family. That's where my encounter happened. I'm sure it was just a TMI moment, but it struck me as funny. See, I have found lately that when I tell my story - and I mean my whole story, it makes people a little, ok a LOT uncomfortable. It's like - tragedy overload for some people - and I can feel myself as I tell it, I can hear myself thinking 'ok, don't get too sucked in here, cuz there's more coming' it's like I almost have to lessen the reality of my own story to save the person I'm telling the pain of hearing it - does that make sense? It's ridiculous!
So, I had mentioned my meeting with one of the new pastors at my church sometime back, where I just wanted some spiritual guidance I guess, had hit a wall and wanted to talk it through - well, this was one of those moments. So, I haven't been back since, but I do get the longer hand shake and hug from him when we meet at church, and that is good and quite comforting to me. Well, this morning, I guess I felt like I had to share my divine intervention - I mean this pain gone this is a HUGE deal to me - I've been in pain where it hurt so bad to sneeze or yawn, I looked like I was giving birth each time either one of these things happened, now, I'm learning how to do these things normally again - I thought this was monumental. So when I get approached for the hug I mention that I started chemo onFriday which ilicited a quick stink face and a couple steps back. Hmm - ok. Then I try to make it ok by saying 'but my pain was gone instantly it was totally Jesus!' and I get 'I just wanted you to know I was praying for you' and off he went lickity split. Now, I only bring this exchange up because I find it ironic - I'm not upset by this,not in the least, I'm fine. I just think it's funny that here I go trying to appease others 'uncomfortableness' with my situation, yet again. I hate that this disease is all some people see now when they see me. I wish they saw me - but they don't. That's the part that I wanted to talk about. And it's not just this pastor, it's people who just don't know me. I liked it better when people didn't know me they really knew nothing about me - now - they all seem to know I have cancer - and that's all they know about me. So I get the pity look, or the shoulder touch, or the smile with the head tilt. Sucks. Because I think I have something to learn from certain people, and they just can't get past the cancer part. Sucks again.
So I'm drinking water with frozen fruit in it (tastes really good actually) and that's really about it - everything else tastes awful. Back I go to eating all natural which I was doing OK before, but now that I can't taste anything with preservatives, I'm going to go all organic and start a plant, fruit and fish based diet. Some chicken, but no meat - little dairy - that's it. My friend is going to show me how to shop like this this week - very excited. Ready for some new fresh ideas - ya only know what ya know - gotta change up what I know - ya know?
So I'm asking for positive prayers, sending out the bad thoughts that creep into my brain with a big FU to Satan and then the awesome catch phrase Pastor Dan gave me this morning, God's Got my Back. That has worked wonders so far today. Thank You!!!
Need to watch my Sunday eve zombie show with my hubby so I bid u farewell. Glad to have nothing to do tomorrow. Need one more day of rest, gotta get into a groove here. Not there yet. Clearly.
I read the following passage today for the first time ever and it just filled me with such - life? Not sure how else to explain it. It's Habakkuk 3:17-19. I know - I never even LOOKED and this book in the Bible - anyway, I'll just share the last line, but please check this out - it is amazing:
' The Sovereign Lord is my strength; he makes my feet like the feet of a deer, he enables me to go on the heights.'
This visual is just so comforting to me. I love it. Check in tomorrow - God Bless.
Dina
Monday, February 13, 2012
All Aboard The Chemo Train...........
Last night and all day today, I prayed for peace. I prayed for peace to wash over me, no matter what the news turned out to be today. Did I pray for healing? Absolutely, in fact, I've been quite adamant about praying for healing as of late. And I will not back down. I did get what I prayed for today however, I got peace. Complete peace when faced with this new news. This new path of which I am about to head down. It seems that yes, cancer is indeed what has caused the damage to my shoulder bone. In fact, I have reactivated bone mets (short for metastasis) in the places where the old ones were, and new ones. To be specific, I have bone mets on both shoulders, both legs, my spine and my ribs. They believe the pain I have been experiencing on my right side is indeed that, the bone met on that side. Once I received this news my doc has me whisked off to imaging again to have all my bones xrayed to make sure they weren't further damaged like my shoulder was - at risk for breaking. Blessedly, they are not - they are in good shape. It's like a breast cancer tumor is just sitting there on the bone, in the places I've mentioned. Needless to say, PJ and I were quite taken aback - I was prepared for the met on my shoulder, that just made logical sense to me, but not all the others. I also am a little annoyed that I haven't had a PET scan for over a year, we were so focused on the liver, we kind of let that slip I guess, but, there's nothing to do about this now - so let's move forward.
The test also showed conflicting information regarding my liver. In fact, my doc said that 2 radiologists were 'arguing' over my scan. ?? It shows the tumor areas as smaller than before, but reading hotter for cancer cells. This is completely contradictory of one another. (of course it is! it's me!) so I am settling for no change. AND to make things more confusing, my blood work again is perfect, and my tumor markers are DOWN. What the chicken?
We are putting the kabosh on quadrasphere - which, I have to say, I am thanking the Lord above. I am so happy to not have to do that again, I was ironically telling PJ that I would almost welcome that chemo chair before doing quadrasphere again - well, be careful what you wish for. Yes, I will be starting a new chemo treatment plan on Friday. It's a new drug, recently approved by the FDA by the name of Halaven. It is a 21 day cycle - I have treatment day 1 then day 8 then take a week off. Back to the chemo chair. Side effects are minimal this time, thank God. And this is my first experience at CTCA for chemo infusion - who are much more proactive with side effects and such rather than reactive - in fact, my care manager and I have already begun to discuss how to start handling some of the side effects now.
Now that the facts are out of the way, I can get to the feelings part. I am not afraid of this news at all. I have no idea why - wait - yes I do - I got what I prayed for, I got peace. I know this is manageable - bone mets are way easier to tend to then the liver thing - and knowing that I'm starting a chemo infusion with minimal side effects that will treat both? I'm oddly excited to get started. I know - crazy right? This new drug is made from a sea sponge - how frickin cool is that? Am I pissed I have to plant my ass back in that chemo chair? Absolutely - pissed and horribly inconvenienced - but - I am supposed to be relieved of this pain that I have been feeling for the better part of 3 months now, within 3 days of my first treatment. The pain I have been experiencing has been sending me into a dark place thought wise - a place I do visit on occasion, which is normal, but I have spent the better part of the past 3 months in this space, and have been keeping it entirely to myself. On the ride down to CTCA, I finally and quite spontaneously opened up to PJ about this, I explained to him that I was usually pretty good about talking and praying myself through these times, but lately I just couldn't do it - and I don't want to be in this dark place. I don't want to think about myself dying, of never seeing my kids grow up, of not being able to take care of my family - and this has always been shit I've thought of, but when you are in pain, it makes it much more vivid and real and scary. Long story short - I asked for help. From him, and then today, I asked for help from CTCA. I'm not used to doing this, and what I noticed myself doing was me showing up for these CTCA appts and treating them just like something on my To Do list. Putting the tough girls face on, smiling, joking, like I always do. Never have I thought of them as the place for me to let my guard down and just open up completely. Shame on me. This was difficult, and I'm not ashamed in the least to say I'll be seeing their psychologist here pretty soon. Looking forward to getting some help from someone to help me put this in perspective and hopefully gaining some tools to help me climb out of these dark moments. And, I realized it's not fair to my husband to keep this to myself either - he wants to help me, and he can't if I don't share what I'm thinking. So this was extremely powerful for me this visit - and I feel very positive about it.
I don't know how long I have, 10 min, 10 days, 10 months, 10 years, 40 years - but I don't want to spend whatever time that is being scared or fearful - I want it to be full of life, and love, and family, and friends, and giving and helping others. No time for bullshit or other peoples bullshit or drama, life is just way too short. I want to surround myself with people who want these same things out of life, learn from them, and hopefully be an example to those who haven't quite got it yet. To be completely dorky and quote Mandisa, 'I want the Truth that I believe to be the definition of me'.
So I start treatment on Friday - so prayers please that I react ok to this new drug, that it does what it is supposed to do, and also prayers that PJ's job will work with us on allowing him to take me to treatments. It is so much to ask I know, but he is the most trust worthy guy, I hope they know that and will allow him to make it up elsewhere - because he will.
I want so badly to keep our lives on course, as much as I can. I want to keep our plans to go to NY for Thanksgiving, to have a sleepover with Madeline this weekend, to give Ginger the bday party with a princess that she wants, to try to take a weekend away with just PJ and I, to see PJ's cousins and their kids over Easter - all of it - life doesn't stop because of cancer, life doesn't stop because of chemo. Everything keeps going - and don't want to miss any of it. Please, Lord, give me the strength, the healing, to power to go through this and keep going as a wife, a mother, a woman of God, and sister in Christ. Please, give me the strength.
God Bless -
Dina
The test also showed conflicting information regarding my liver. In fact, my doc said that 2 radiologists were 'arguing' over my scan. ?? It shows the tumor areas as smaller than before, but reading hotter for cancer cells. This is completely contradictory of one another. (of course it is! it's me!) so I am settling for no change. AND to make things more confusing, my blood work again is perfect, and my tumor markers are DOWN. What the chicken?
We are putting the kabosh on quadrasphere - which, I have to say, I am thanking the Lord above. I am so happy to not have to do that again, I was ironically telling PJ that I would almost welcome that chemo chair before doing quadrasphere again - well, be careful what you wish for. Yes, I will be starting a new chemo treatment plan on Friday. It's a new drug, recently approved by the FDA by the name of Halaven. It is a 21 day cycle - I have treatment day 1 then day 8 then take a week off. Back to the chemo chair. Side effects are minimal this time, thank God. And this is my first experience at CTCA for chemo infusion - who are much more proactive with side effects and such rather than reactive - in fact, my care manager and I have already begun to discuss how to start handling some of the side effects now.
Now that the facts are out of the way, I can get to the feelings part. I am not afraid of this news at all. I have no idea why - wait - yes I do - I got what I prayed for, I got peace. I know this is manageable - bone mets are way easier to tend to then the liver thing - and knowing that I'm starting a chemo infusion with minimal side effects that will treat both? I'm oddly excited to get started. I know - crazy right? This new drug is made from a sea sponge - how frickin cool is that? Am I pissed I have to plant my ass back in that chemo chair? Absolutely - pissed and horribly inconvenienced - but - I am supposed to be relieved of this pain that I have been feeling for the better part of 3 months now, within 3 days of my first treatment. The pain I have been experiencing has been sending me into a dark place thought wise - a place I do visit on occasion, which is normal, but I have spent the better part of the past 3 months in this space, and have been keeping it entirely to myself. On the ride down to CTCA, I finally and quite spontaneously opened up to PJ about this, I explained to him that I was usually pretty good about talking and praying myself through these times, but lately I just couldn't do it - and I don't want to be in this dark place. I don't want to think about myself dying, of never seeing my kids grow up, of not being able to take care of my family - and this has always been shit I've thought of, but when you are in pain, it makes it much more vivid and real and scary. Long story short - I asked for help. From him, and then today, I asked for help from CTCA. I'm not used to doing this, and what I noticed myself doing was me showing up for these CTCA appts and treating them just like something on my To Do list. Putting the tough girls face on, smiling, joking, like I always do. Never have I thought of them as the place for me to let my guard down and just open up completely. Shame on me. This was difficult, and I'm not ashamed in the least to say I'll be seeing their psychologist here pretty soon. Looking forward to getting some help from someone to help me put this in perspective and hopefully gaining some tools to help me climb out of these dark moments. And, I realized it's not fair to my husband to keep this to myself either - he wants to help me, and he can't if I don't share what I'm thinking. So this was extremely powerful for me this visit - and I feel very positive about it.
I don't know how long I have, 10 min, 10 days, 10 months, 10 years, 40 years - but I don't want to spend whatever time that is being scared or fearful - I want it to be full of life, and love, and family, and friends, and giving and helping others. No time for bullshit or other peoples bullshit or drama, life is just way too short. I want to surround myself with people who want these same things out of life, learn from them, and hopefully be an example to those who haven't quite got it yet. To be completely dorky and quote Mandisa, 'I want the Truth that I believe to be the definition of me'.
So I start treatment on Friday - so prayers please that I react ok to this new drug, that it does what it is supposed to do, and also prayers that PJ's job will work with us on allowing him to take me to treatments. It is so much to ask I know, but he is the most trust worthy guy, I hope they know that and will allow him to make it up elsewhere - because he will.
I want so badly to keep our lives on course, as much as I can. I want to keep our plans to go to NY for Thanksgiving, to have a sleepover with Madeline this weekend, to give Ginger the bday party with a princess that she wants, to try to take a weekend away with just PJ and I, to see PJ's cousins and their kids over Easter - all of it - life doesn't stop because of cancer, life doesn't stop because of chemo. Everything keeps going - and don't want to miss any of it. Please, Lord, give me the strength, the healing, to power to go through this and keep going as a wife, a mother, a woman of God, and sister in Christ. Please, give me the strength.
God Bless -
Dina
Wednesday, February 8, 2012
Dina's Shoulder - The Newest Carnival Attraction
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
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
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
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