Treatment went really well on Friday - my blood work was in a good place, my liver chemistries were finally in a good place, something that hasn't been said in, I don't even know how long - and my doc said he was 'pretty pleased' with that - woo hoo! I like the sound of that.
It's so funny, I don't know what they put in their Benedryl, but I am like, OUT when they give it to me - I'm too sleepy to pray for my actual treatment, too tired to talk, I just literally pass out. Then, since my actual treatment is only a 2-3 minute push, when they're done and say "OK Dina, you're all done!" I'm like all ready to snuggle in and sleep for like and hour or so. They said I could totally do that, but then logic kicks in and I think to myself - seriously Dina, are your really going to snuggle up here in this chemo chair and dream sweet dreams? That's like a total oxymoron, right? So PJ leads me out like some sort of drunken date night. Nice.
Something totally cool that my oncologist recommended that I try is Qi Gong. (pronounced Chee-Kung) It is actually wicked cool. My first session was a little intimidating, a little uncomfortable only because it is something completely new and different to me, but I really am enjoying it. Here's the quick run down of what this is: Qi means breath or air, and can also be referred to as the relationship between matter, energy, and spirit. Qi is also considered to be a focus of energy. Gong is with force or power. The two words together describe the manipulation of energy for purpose, most commonly health. The foundation of this practice is the cultivation of energy and awareness. Lost?
Here's my interpretation - through intentional breathing, I am beginning to learn to empty my mind. Once I learn how to do this, I can then begin to fill it with intentional thoughts. Can I tell you how hard it is to empty your mind? To NOT have thoughts running through your mind all the time? It is a really great relaxation technique and I am super happy to be adding this to my treatment plan. Another cool thing is, my homework, to breathe 108 breaths a day (intentional relaxed breathing) needs to be counted, but not counted in my head. I found that a rosary has 108 beads - coincidence? Probably not. I'm able to use the rosary that was given to me by PJ's grandmother as my guide through this. So cool. I was instructed to begin this at night - and as of now, I still haven't been able to get to 108 without falling asleep. Still learning I guess. But sleeping - that's good right?
I thought maybe I was doing better with my side effects since on Sunday, although my taste buds are completely shot which sooooo sucks - I felt pretty good otherwise. Then Monday came and I started to fade a bit - then by Mon night into Tues I felt like complete shit. Typical chemo stuff, muscle achy, nauseous, and I found myself on my knees Tues morning, praying, saying to God "please, just let me get my kids to school, that's all I ask, just get my kids to school". Sucks. But - He came through - I got them to school, then had some more energy to go get a new belt for Brittany, then had an amazing prayer time with my dear friend Pastor Mary - and then it was like someone flipped a switch. Just like that, I felt better. I'm giving my props to God on this one. Thanks.
My girls continue to bring me smiles and surprises every day. I cannot thank God enough for my beautiful family. I still battle the guilt that I am not the 'typical wife' to my husband, 'typical mom' to my kids, but to be honest, I don't think PJ signed up for typical when he married me. I know I didn't. We just didn't have THIS in mind. But as I learned today in my first hour of WOW - my story is one that is playing out as I type here. My life has all the makings of a good story, it's got interesting characters, it's got awesome sub characters, it's got conflict, it's got tragedy and heart, it's got twists and turns, it's got humor, it's got all the things people look for in a good story. No one wants to read the book of status quo - that's pretty boring. God needs me to live my story, so those that watch my story can tell it to others. It all brings glory to Him, and that is the ultimate purpose isn't it? For us all to hear 'well done faithful servant'? Well, my story is a good one, and I can't wait to see where it takes me next. I had my blood drawn today to see if I get to have treatment on Friday - we'll see - I don't feel like I have more or less white blood cells - wish I could tell on some level.
I'll check in tomorrow and find out - I trust what needs to happen will happen. Just glad to have some energy back - even if it's only for a couple days. I'm going to try to get to the gym tomorrow. I want to have a chance to try to build up my muscles before they all get shot with a dose of chemo again. Give them a fighting chance kind of theory.
Thank you to all those who pray for me, send me energy, good thoughts. Those who put my needs above their own, who pray for me when I can't, which was just this week actually - thank you. I'm just going to keep on keeping on - that's how I roll today.
God Bless -
Dina
DINA'S BOOB BLOG - An online journal of my breast cancer experience.
Wednesday, March 28, 2012
Thursday, March 22, 2012
Less Hair - More Sparkle.
So my hair is looking so - weird. I still haven't done the close shave thing, I really want to hang onto my hairline as long as I possibly can. It's all bald patchy on top, and bald where my sunglasses rub above my ears - then not bald patchy at all in the back. Instead of 'party in the front, business in the back' I guess you could say I'm 'Patchy in the front; Scratchy in the back'. Hmmm. And I've started getting real creative with my head gear - I wrap a very sparkly scarf around my head then tie it in the back, then sport a baseball type cap. I am now officially addicted to sparkle - of any kind - anywhere. I want sparkly shirts, sparkly shoes, sparkly makeup - you name it, I want it. I think I am suddenly drawn to pretty things to feel pretty everywhere else. When I went through this the first time, I think I was so preoccupied with so many other things, and overwhelmed by all that was going on, I didn't have the ability to figure out how to try to make up for what I had lost in some other way. Does that make sense? It was all so new, so devastating, so difficult. It is still difficult, but I think I am familiar enough with this 'phase' of it to be able to mentally find ways to fill that feminine part of me that is tied to hair. I know that sounds silly, but I am one of those women that just really loves having hair. Now that it's gone, I am tapping into other things that make me feel feminine, pretty, girly. Interesting.
So I have been given some really powerful insight on how to look at people who approach me with the 'how are you feeling' comment. I have been perceiving these inquiries as a sign of my weakness - my sickness - my vulnerability. I react with such defensiveness and anger. More so on the inside, I don't think I'm outwardly rude to anyone, short maybe, but not rude. Inside though I'm filled with such a high level of frustration. Why do I have to feel like I'm supposed to be so strong in front of people? Why do I see people's compassion and concern for me, in whatever way they are able to express it, why do I see this as a sign of weakness on my part? We aren't meant to be 'stoic' through our trials - we are meant to be stoic in our faith, but not necessarily in our outward appearance to others. When people approach me with concern and compassion, aren't they being exactly as He wants us to be towards one another? Isn't this what I should be seeing instead of someone threatening my strength? Like me pretending like nothing is wrong and I'm the same person I was 4 years ago is doing anyone any good - part of it is me needing to embrace fully where I am - which sucks sometimes - and the other part is seeing Jesus in the face of those who are showing me compassion. People aren't always going to say the right thing, act the right way, do the right thing - we're human, we aren't known for our appropriateness - but we're trying, aren't we? This was a HUGE wake up call for me - and I have started to change my heart on this issue. Let the guard down Dina, let it down.
Something else that I have been toying with in my spare time is the possibility that perhaps I have been trusted with this suffering, for a purpose, for a reason. What that is I'm not sure, but I'm starting to really think about this. I in no way believe that God gave this to me - I never have felt that. It was never something I had to convince myself of or had gone back and forth on the issue, it just literally was never something that I have ever felt. How that all relates to this possible theory, I have no idea. Interesting perspective.
1 Timothy 1:12; 1 Peter 4:12.
I have treatment tomorrow. I guess I'm ready for it. I'm a little concerned to do treatment 2 weeks in a row, because of my WBC and also because I just will feel like shit a lot longer than I do when I have it every other week. I'm just feeling better now, and now I get to go get hit again. Trying to keep it all in perspective and keep an open mind. I will get to forgo the steroid tomorrow which is exciting, if I can be excited for something so ridiculous as that, right?
My girls are doing just great - I've just been soaking them in this week, more than usual I think. They are just growing and giggling and being silly so much more lately than usual. I'm so blessed that they are, because they are a reminder to me that they see me as mom, just mom - not Dina who has cancer, not Dina who has no hair, not Dina who gets tired and sick. Just mom. Such a lesson they teach me - everyday. That it's really about this moment, this very moment, right here, right now. I'm so blessed to be constantly reminded to live in the moment. What a cool way to spend each day.
Oy - is it really 11:30? Nighty night. I'll be in touch on how treatment goes tomorrow. Wish me luck once they hook me up!
God Bless -
Dina
So I have been given some really powerful insight on how to look at people who approach me with the 'how are you feeling' comment. I have been perceiving these inquiries as a sign of my weakness - my sickness - my vulnerability. I react with such defensiveness and anger. More so on the inside, I don't think I'm outwardly rude to anyone, short maybe, but not rude. Inside though I'm filled with such a high level of frustration. Why do I have to feel like I'm supposed to be so strong in front of people? Why do I see people's compassion and concern for me, in whatever way they are able to express it, why do I see this as a sign of weakness on my part? We aren't meant to be 'stoic' through our trials - we are meant to be stoic in our faith, but not necessarily in our outward appearance to others. When people approach me with concern and compassion, aren't they being exactly as He wants us to be towards one another? Isn't this what I should be seeing instead of someone threatening my strength? Like me pretending like nothing is wrong and I'm the same person I was 4 years ago is doing anyone any good - part of it is me needing to embrace fully where I am - which sucks sometimes - and the other part is seeing Jesus in the face of those who are showing me compassion. People aren't always going to say the right thing, act the right way, do the right thing - we're human, we aren't known for our appropriateness - but we're trying, aren't we? This was a HUGE wake up call for me - and I have started to change my heart on this issue. Let the guard down Dina, let it down.
Something else that I have been toying with in my spare time is the possibility that perhaps I have been trusted with this suffering, for a purpose, for a reason. What that is I'm not sure, but I'm starting to really think about this. I in no way believe that God gave this to me - I never have felt that. It was never something I had to convince myself of or had gone back and forth on the issue, it just literally was never something that I have ever felt. How that all relates to this possible theory, I have no idea. Interesting perspective.
1 Timothy 1:12; 1 Peter 4:12.
I have treatment tomorrow. I guess I'm ready for it. I'm a little concerned to do treatment 2 weeks in a row, because of my WBC and also because I just will feel like shit a lot longer than I do when I have it every other week. I'm just feeling better now, and now I get to go get hit again. Trying to keep it all in perspective and keep an open mind. I will get to forgo the steroid tomorrow which is exciting, if I can be excited for something so ridiculous as that, right?
My girls are doing just great - I've just been soaking them in this week, more than usual I think. They are just growing and giggling and being silly so much more lately than usual. I'm so blessed that they are, because they are a reminder to me that they see me as mom, just mom - not Dina who has cancer, not Dina who has no hair, not Dina who gets tired and sick. Just mom. Such a lesson they teach me - everyday. That it's really about this moment, this very moment, right here, right now. I'm so blessed to be constantly reminded to live in the moment. What a cool way to spend each day.
Oy - is it really 11:30? Nighty night. I'll be in touch on how treatment goes tomorrow. Wish me luck once they hook me up!
God Bless -
Dina
Thursday, March 15, 2012
Work the Scarf girl - Work It!!
So there I am, in the drive thru at McDonald's - which, by the way, tasted awful before chemo, on chemo it tastes even worse, anyway - I'm ordering and I realize that I forgot one of the children's drinks so I get out the receipt, right there at the window, to ask the simple question "is the drink for the happy meal included or charged separately?" at which time the worker who wasn't looking at me yet but was obviously annoyed I was holding up the line, gives me a resounding "No!" then looks up and sees me - suddenly she is shoving a child size drink in my face with this huge smile on her face telling me it's ok - it's ok - no problem no problem - while I'm trying to hand her a dollar for my mistake. I take the drink and pull away baffled - thinking "what the chicken? how passive aggressive is that?" then I realized I was wearing my scarf. Aaaahhh - the familiar ' oh my God she has cancer and I was angry at her just give her anything she wants so she will go away' scenario. How quickly I forget.
So it was a quasi normal day today, play date at the park which my girls thoroughly enjoyed - and I waded through the once again uncomfortable 'getting to know you' chit chat with a new mom while we both tried to ignore the fact that I am bald wearing a scarf, albeit, a FABULOUS rhinestone embellished pink scarf today. Conversation eventually made its way to me telling 'my story' - the abridged version of course. Why do I feel compelled to leave parts out just because I know it will make people even MORE uncomfortable?? Arg.
Had to get my blood drawn today, which I do weekly now at the local lab then results are faxed down to CTCA. My girls come with me, and Ginger sits on my lap as they put the needle in and draw blood. Madeline got to come this time due to spring break and she announces as the tubes are filling with blood "blood is blue in your veins but it turns red when it comes out of our body". Yay Mads!!! Woot Woot! I'm eager to see what the results are - see where the Nulasta shot has placed me with my WBC count. My mouth irritation is at an all time high today - just all around sore, consistent horrible taste in my mouth, and the only thing that stops it is to fill my mouth with ice cold water. Doesn't lend itself to a lot of conversation time, which I'm sure my husband is secretly grateful for tonight. :-)
I'm watching my kids process this new round of chemo for me- Ginger will bring up the hair loss at least once a day, and for some reason she thinks that she too will be asked to have her hair cut off. I reassure her that no, she will not lose her hair, nor does she have to cut it. She seems so relieved when I tell her this. And she likes to rub my head, a lot. And she likes to kiss my bald spots.
Madeline is processing this so differently - it's like I can see the little wheels spinning in her head. I had to take Brittany to craft night tonight, so PJ fixed dinner for the girls and I guess the following exchange happened:
Madeline: "Going to Phoenix sucks Dad."
PJ: "Well, I suppose it can, but I don't think we should really be saying the word 'sucks'. Let's only use that word at home for now, and only in certain circumstances, when it's appropriate - ok?"
Madeline: "Chemo Sucks. Is that appropriate Dad?"
PJ: "Absolutely Madeline. That is absolutely appropriate."
Yea, I think she gets it way more than she's letting on.
While I was waiting for Brittany at her craft night, I decided to walk through our new Trader Joe's here in Prescott - so exciting. (it doesn't take much up here) Anyways, it was lovely to just stroll through the store and really look at everything at my own pace. I happened to run into someone I knew who greeted me with a rub on the back and a 'how are you feeling?" to which I respond "I'm fine thanks - how are you feeling?" I wasn't being a bitch about it, but I think I secretly had bitch in mind. They are legitimately concerned for me - and I react like some defensive - angry - bald person. At first as I dissected my behavior I thought well, I have been going through chemo although in different forms for the greater part of the last 3 years, I've had shitty days all along and because I had hair, no one knew. Now that I don't have hair, suddenly everyone wants to know how I feel. But in reality, now is different than the greater part of the past 3 years. My cancer has once again spread to my bones, so this is different I suppose. More aggressive medication for a disease that is progressing - it's totally OK for people to ask how I feel. And I don't need to hear this question as a sign of weakness - or think I have to answer the question pretending to be fine. Why do I do that? I mean, I'm not going to break down into great detail about how the meds make me super constipated and I spend the greater part of the morning feeling like I was pushing a log through a pinhole - although I would LUV to do this just once to get a reaction. I guess I just don't know what to say. I don't feel fine - but I'm doing the best I can. Maybe that's what I need to say.
Looking forward to a quiet weekend, there is supposed to be a snow storm, so we are excited to cuddle with my family and just lay low. Having my dad and Nancy over for BBQ tomorrow night as the storm rolls in on Sat - it'll go from like 73 to 44 in 24 hours - cool eh? I know sometimes my dad has trouble looking at me, especially when I look the part like now - and it breaks my heart. When he looks at me I see the tears well up in his eyes - I need to have a conversation with him though, and remind him that I'm fighting - I'm fighting everyday and not giving up - I feel like he needs to hear me say this to him. I love my daddy so much. What a gift that I get to live so close to my family, and see them, hug them, hang out with them - and better yet - my KIDS get to do all this too. They get to know my whole family - what a gift. I'm so glad we live where we do, to be surrounded by family who we can talk to, lean on, cry with, laugh with - I am so blessed, my children are so blessed. It sucks what my girls are being exposed to and the language they are learning, this 'cancer' language - but what they are witnessing, in my home, in my family, in my entire community, the outpour of humanity, is simply indescribable. What a gift.
Well., I think I gotta go grab the bottle of baby fish mouth - oy.
God Bless -
Dina
So it was a quasi normal day today, play date at the park which my girls thoroughly enjoyed - and I waded through the once again uncomfortable 'getting to know you' chit chat with a new mom while we both tried to ignore the fact that I am bald wearing a scarf, albeit, a FABULOUS rhinestone embellished pink scarf today. Conversation eventually made its way to me telling 'my story' - the abridged version of course. Why do I feel compelled to leave parts out just because I know it will make people even MORE uncomfortable?? Arg.
Had to get my blood drawn today, which I do weekly now at the local lab then results are faxed down to CTCA. My girls come with me, and Ginger sits on my lap as they put the needle in and draw blood. Madeline got to come this time due to spring break and she announces as the tubes are filling with blood "blood is blue in your veins but it turns red when it comes out of our body". Yay Mads!!! Woot Woot! I'm eager to see what the results are - see where the Nulasta shot has placed me with my WBC count. My mouth irritation is at an all time high today - just all around sore, consistent horrible taste in my mouth, and the only thing that stops it is to fill my mouth with ice cold water. Doesn't lend itself to a lot of conversation time, which I'm sure my husband is secretly grateful for tonight. :-)
I'm watching my kids process this new round of chemo for me- Ginger will bring up the hair loss at least once a day, and for some reason she thinks that she too will be asked to have her hair cut off. I reassure her that no, she will not lose her hair, nor does she have to cut it. She seems so relieved when I tell her this. And she likes to rub my head, a lot. And she likes to kiss my bald spots.
Madeline is processing this so differently - it's like I can see the little wheels spinning in her head. I had to take Brittany to craft night tonight, so PJ fixed dinner for the girls and I guess the following exchange happened:
Madeline: "Going to Phoenix sucks Dad."
PJ: "Well, I suppose it can, but I don't think we should really be saying the word 'sucks'. Let's only use that word at home for now, and only in certain circumstances, when it's appropriate - ok?"
Madeline: "Chemo Sucks. Is that appropriate Dad?"
PJ: "Absolutely Madeline. That is absolutely appropriate."
Yea, I think she gets it way more than she's letting on.
While I was waiting for Brittany at her craft night, I decided to walk through our new Trader Joe's here in Prescott - so exciting. (it doesn't take much up here) Anyways, it was lovely to just stroll through the store and really look at everything at my own pace. I happened to run into someone I knew who greeted me with a rub on the back and a 'how are you feeling?" to which I respond "I'm fine thanks - how are you feeling?" I wasn't being a bitch about it, but I think I secretly had bitch in mind. They are legitimately concerned for me - and I react like some defensive - angry - bald person. At first as I dissected my behavior I thought well, I have been going through chemo although in different forms for the greater part of the last 3 years, I've had shitty days all along and because I had hair, no one knew. Now that I don't have hair, suddenly everyone wants to know how I feel. But in reality, now is different than the greater part of the past 3 years. My cancer has once again spread to my bones, so this is different I suppose. More aggressive medication for a disease that is progressing - it's totally OK for people to ask how I feel. And I don't need to hear this question as a sign of weakness - or think I have to answer the question pretending to be fine. Why do I do that? I mean, I'm not going to break down into great detail about how the meds make me super constipated and I spend the greater part of the morning feeling like I was pushing a log through a pinhole - although I would LUV to do this just once to get a reaction. I guess I just don't know what to say. I don't feel fine - but I'm doing the best I can. Maybe that's what I need to say.
Looking forward to a quiet weekend, there is supposed to be a snow storm, so we are excited to cuddle with my family and just lay low. Having my dad and Nancy over for BBQ tomorrow night as the storm rolls in on Sat - it'll go from like 73 to 44 in 24 hours - cool eh? I know sometimes my dad has trouble looking at me, especially when I look the part like now - and it breaks my heart. When he looks at me I see the tears well up in his eyes - I need to have a conversation with him though, and remind him that I'm fighting - I'm fighting everyday and not giving up - I feel like he needs to hear me say this to him. I love my daddy so much. What a gift that I get to live so close to my family, and see them, hug them, hang out with them - and better yet - my KIDS get to do all this too. They get to know my whole family - what a gift. I'm so glad we live where we do, to be surrounded by family who we can talk to, lean on, cry with, laugh with - I am so blessed, my children are so blessed. It sucks what my girls are being exposed to and the language they are learning, this 'cancer' language - but what they are witnessing, in my home, in my family, in my entire community, the outpour of humanity, is simply indescribable. What a gift.
Well., I think I gotta go grab the bottle of baby fish mouth - oy.
God Bless -
Dina
Do what the Good Book, do what the Good Book, do what the Good Book tells you to!
The Mighty Wind is one of my most favorite movies of all time.
So I felt like crap on Sunday as I mentioned before, Monday was not much better, then come Tues, around 11am or so, it's like someone switched on the 'ENERGY' light. I felt pretty good, was able to get outside with my girls, cleaned out the minivan and started to investigate what the wretched smell was that has been making all of us gag inside for the past couple days, ran some errands, had a really lovely day. I probably pushed it a little, but I was just to happy to have energy.
Just prior to this burst of energy, ironically enough, was my new weekly prayer time. I am blessed enough to have weekly prayer time now with two of my bestest friends on this planet. We do it via conference call, which isn't traditional I realize, but I figure we are still 'gathering in His name' just not all in the same room. We spoke about my previous post, and some of the things I spoke about in that post - specifically my need to be 'realistic' and me trusting Jesus knows what is 'appropriate' for me. First, let me say, that I am privileged to know these women, much less get to pray with them each week. And I am equally as privileged to know them because they aren't afraid to call me on my misinterpretations of the Word - and I must admit, I got it wrong on my last post. Not wrong on how I felt, how could that be wrong, but I was wrong on where I thought Jesus was in all of this. To think that I didn't know what He wanted for me - was wrong. I do know, and I think, in my current state of fatigue, fear, irritation, frustration, anger, you name it - I got the better of myself. There's a reason I want Jeremiah 29:11 tattooed on my forearm, and I was reminded of John 10:10 as well - a verse I hadn't even been reading deeply enough. He wants me to have a long life - He wants me to have 'rich and satisfying life'. That is Gods Will - 'on earth as it is in heaven'. That's what I need to trust.
It's funny, I have these visions of the way I look and feel and carry myself when I trust 100% all the time, I just gotta work on getting there. I can see it - I just need to get there. I'll admit - I'm tired of this. 3 years I've been doing this - I've only had a break from any sort of chemo way back in 2009 for 3 months, ever since then I've been on some form of treatment. And now, to be back to the infusion cycles and the hair loss, and the constipation and the mouth sores and the nausea and the fatigue and the ass taste in my mouth 24/7 - it has taken its toll I suppose - and my attitude is a little but harder to snap right back on these days. I do - I get there - no worries - it is just a different path this time is all. I have a different route to get there this time. Thank God I have friends that remind me of where I need to be, and what God ultimately wants for me, what He promises me - each of us, all of us.
Both of my children have been trading off little ailments the past couple of weeks and I swear to you it's to remind me of where I am needed and what my focus is supposed to be. I'm a mother - a mother of 2 beautiful children who need me. Who only want to be consoled by their mommy, which is both irritating and flattering all at the same time. I look at them and realize they are why I must push through this rough spot I'm in and be the woman God has created me to be on this earth. It's work, but I will not be afraid and I will be that person I see in my mind who walks around with such trust, no one can touch her. I strive to be that woman. Now, as I know you all are wondering and if you don't follow me on FB you don't know that the stink in my minivan was meat. Yes, meat that I had inadvertently left in a defrosted cold pak in the back of my van. I cannot begin to describe how revolting this was, and I owe poor Brittany an apology because I insinuated to her the other day that she really needed to excuse herself and chew her food better next time. I'm such an ass sometimes.
Something else I've been avoiding are all my incoming medical bills. They have been stacking up and stacking up for sometime and it is time for me to face the music and get a handle on these. The more I am in denial about them, the more they control me - something else my fabulous friend imparted to me. How can anyone on a fixed income even afford to get sick?? Seriously???? And I'm still fighting with frickin insurance companies, it just never ends. So since this is my week off from treatment, that is on my agenda this weekend. Jealous right? I know. Scary thing is, I am on an individual policy which has a wicked high annual deductible, then I literally went uninsured for a spell when I was trying to deny medicare - I just need to breathe deep, go through them one my one, and know I will do what we can do. With God, all things are possible? (there's not supposed to be a question mark there, I just don't think He had medical bills in mind when it was written is all).
Well, off to bed with me - I'm not supposed to be us this late, but the quiet house, which is so rare for me to enjoy while awake, it sometimes is just too inviting. Have a great day tomorrow everyone, Happy Spring Break - we are off to play date #2 of 4 for the week.
God Bless -
Dina
So I felt like crap on Sunday as I mentioned before, Monday was not much better, then come Tues, around 11am or so, it's like someone switched on the 'ENERGY' light. I felt pretty good, was able to get outside with my girls, cleaned out the minivan and started to investigate what the wretched smell was that has been making all of us gag inside for the past couple days, ran some errands, had a really lovely day. I probably pushed it a little, but I was just to happy to have energy.
Just prior to this burst of energy, ironically enough, was my new weekly prayer time. I am blessed enough to have weekly prayer time now with two of my bestest friends on this planet. We do it via conference call, which isn't traditional I realize, but I figure we are still 'gathering in His name' just not all in the same room. We spoke about my previous post, and some of the things I spoke about in that post - specifically my need to be 'realistic' and me trusting Jesus knows what is 'appropriate' for me. First, let me say, that I am privileged to know these women, much less get to pray with them each week. And I am equally as privileged to know them because they aren't afraid to call me on my misinterpretations of the Word - and I must admit, I got it wrong on my last post. Not wrong on how I felt, how could that be wrong, but I was wrong on where I thought Jesus was in all of this. To think that I didn't know what He wanted for me - was wrong. I do know, and I think, in my current state of fatigue, fear, irritation, frustration, anger, you name it - I got the better of myself. There's a reason I want Jeremiah 29:11 tattooed on my forearm, and I was reminded of John 10:10 as well - a verse I hadn't even been reading deeply enough. He wants me to have a long life - He wants me to have 'rich and satisfying life'. That is Gods Will - 'on earth as it is in heaven'. That's what I need to trust.
It's funny, I have these visions of the way I look and feel and carry myself when I trust 100% all the time, I just gotta work on getting there. I can see it - I just need to get there. I'll admit - I'm tired of this. 3 years I've been doing this - I've only had a break from any sort of chemo way back in 2009 for 3 months, ever since then I've been on some form of treatment. And now, to be back to the infusion cycles and the hair loss, and the constipation and the mouth sores and the nausea and the fatigue and the ass taste in my mouth 24/7 - it has taken its toll I suppose - and my attitude is a little but harder to snap right back on these days. I do - I get there - no worries - it is just a different path this time is all. I have a different route to get there this time. Thank God I have friends that remind me of where I need to be, and what God ultimately wants for me, what He promises me - each of us, all of us.
Both of my children have been trading off little ailments the past couple of weeks and I swear to you it's to remind me of where I am needed and what my focus is supposed to be. I'm a mother - a mother of 2 beautiful children who need me. Who only want to be consoled by their mommy, which is both irritating and flattering all at the same time. I look at them and realize they are why I must push through this rough spot I'm in and be the woman God has created me to be on this earth. It's work, but I will not be afraid and I will be that person I see in my mind who walks around with such trust, no one can touch her. I strive to be that woman. Now, as I know you all are wondering and if you don't follow me on FB you don't know that the stink in my minivan was meat. Yes, meat that I had inadvertently left in a defrosted cold pak in the back of my van. I cannot begin to describe how revolting this was, and I owe poor Brittany an apology because I insinuated to her the other day that she really needed to excuse herself and chew her food better next time. I'm such an ass sometimes.
Something else I've been avoiding are all my incoming medical bills. They have been stacking up and stacking up for sometime and it is time for me to face the music and get a handle on these. The more I am in denial about them, the more they control me - something else my fabulous friend imparted to me. How can anyone on a fixed income even afford to get sick?? Seriously???? And I'm still fighting with frickin insurance companies, it just never ends. So since this is my week off from treatment, that is on my agenda this weekend. Jealous right? I know. Scary thing is, I am on an individual policy which has a wicked high annual deductible, then I literally went uninsured for a spell when I was trying to deny medicare - I just need to breathe deep, go through them one my one, and know I will do what we can do. With God, all things are possible? (there's not supposed to be a question mark there, I just don't think He had medical bills in mind when it was written is all).
Well, off to bed with me - I'm not supposed to be us this late, but the quiet house, which is so rare for me to enjoy while awake, it sometimes is just too inviting. Have a great day tomorrow everyone, Happy Spring Break - we are off to play date #2 of 4 for the week.
God Bless -
Dina
Monday, March 12, 2012
I'm not sick - I'm getting better.
Doesn't that have a much better ring to it? That came to me this morning in the shower, as I scrubbed my buzzard head with the cooling effects of Head and Shoulders - love that stuff. I don't like saying that I'm sick, I'm going to start saying that I'm getting better. Done.
So treatment on Friday went great, my white blood cell count was up even higher then when they had taken in on Monday, so that was good. I was in perfect range. I have to admit though, I was all geared up and ready to do this, until I got up there into infusion in that chair, and then I just got nervous. Mostly because everything everyone told me about this drug has gone completely opposite of what people have said. I know that everyone is different and responds differently, it's scary to try to prepare to expect the unexpected, I guess. But I prayed through it, and they must have some kicked up Benedryl because I am sooooo sleepy when they finally give me my treatment. And the fact that it's just a 2-3 min push, they are like "ok, you're done!" and I feel like I could just lay there and snooze for a couple hours. Thus the not able to drive yourself home thingy - got it. We did 1/2 the steroid this time, and I handled it fine, so we will get to forgo that piece next time - YAY!!!! So glad. One less drug in my system. Yuk. Then back down we went for my Nulasta shot on Sat morning, and that went fine. I'm pretty much on the pre-med high for the next 24-36 hours because by the time we get home from church on Sunday, I am so ready to collapse, it's scary. And the bone pain from the Nulasta shot started bright and early Sunday morning as well. So weird - right? Those of you who care, the Nulasta shot makes your body produce more white blood cells, the ones that fight infection, and those come from your bones, mostly your biggest bones in your body - your back, your forehead, your breastbone, your femurs, hips - and the pain feels like, well, it's like pain 'pulses' - quick ones, that take you by surprise, it's quite uncomfortable. They say Claratin is supposed to alleviate this, and oddly enough, I think it does. I take the 24 hour one, and it does help. Did I remember to take one yesterday? Nooooo - dork. Then today I was just weak - just a massive headache and weak - need to remember to keep eating because everything tastes awful - must keep eating. Oy. My mouth sores are not as horrific this time either, which is good. I actually finally tried the infamous 'miracle mouth wash' that the pharmacist will make for you and I have to say I was horrified. It didn't taste bad, but it made the entire inside of my mouth numb, completely numb for like, 30 minutes - no joke. I felt like my mouth was the size of a frickin watermelon - I've decided to call this mouthwash not 'miracle mouth wash' but 'baby fish mouth'. Thank you When Harry Met Sally. I will only use this in case of utter emergency. Yuk.
So church was entertaining. I was so nervous to walk into church because the last time everyone had seen me not only did I have a full head of hair, but I had been giving my testimony at the pulpit in the sanctuary. Now here I come with my little bald head wrapped in some wanna be chic scarf thing. Do you know someone actually came up to me and said 'So I guess the answer is YES then?' and I say 'YES to what?' and they said 'Yes to losing your hair?' Seriously? Well duh - am I not standing in front of you with a frickin scarf on? I need to pray hard for grace here, because I thought I didn't have patience with people the first time I lost my hair, this time is much worse. I will say it again - if you don't know what to say - to me or to anyone in this situation - you have 2 choices - say NOTHING or say THIS SUCKS because it does. That is the most accurate statement anyone can make. Moving on.
I've been really starting to work through the fact that this could really go either way. I've started coming to grips with that and oddly enough, it is quite a peaceful feeling. I feel in my heart of hearts, right now, that I am supposed to fight. However, I know that God knows how this all turns out in the end, and I trust that, whatever that may be. It is a HUGE step for me to be here emotionally, spiritually, and some moments (not days) are easier than others but for the most part, I'm starting to really embrace both possibilities, and trusting that Jesus knows which one is appropriate - and I'm OK with that. Crazy right? PJ and I have started talking in these terms as well, started. I don't want to dwell here, I want to be practical and realistic, then get on with enjoying and loving on one another. As much as we possibly can.
I'm attaching a link to my testimony I gave earlier this month that I mentioned above, if you care to take a listen. Isn't it ironic that the very night after I gave my testimony my hair started falling out in handfuls, and was gone just 2 days later. I feel very passionate about my beliefs, obviously, as there is nothing in this world that has made more perfect sense to me, or been able to comfort me in ways that no one else on this earth has ever been able to do. My relationship with Jesus is one of such monumental friendship, and I hate the fact that this probably sounds 'preachy' to some who read it - I wish it didn't because that is so not who I am, I just feel like I can't adequately express my spirituality into words that can even remotely describe the completeness it has given my life. Perhaps this does, who knows.
http://www.americanlutheran.net/index.php/2012/02/29/personal-story-dina-mountcastle/
God Bless
Dina
So treatment on Friday went great, my white blood cell count was up even higher then when they had taken in on Monday, so that was good. I was in perfect range. I have to admit though, I was all geared up and ready to do this, until I got up there into infusion in that chair, and then I just got nervous. Mostly because everything everyone told me about this drug has gone completely opposite of what people have said. I know that everyone is different and responds differently, it's scary to try to prepare to expect the unexpected, I guess. But I prayed through it, and they must have some kicked up Benedryl because I am sooooo sleepy when they finally give me my treatment. And the fact that it's just a 2-3 min push, they are like "ok, you're done!" and I feel like I could just lay there and snooze for a couple hours. Thus the not able to drive yourself home thingy - got it. We did 1/2 the steroid this time, and I handled it fine, so we will get to forgo that piece next time - YAY!!!! So glad. One less drug in my system. Yuk. Then back down we went for my Nulasta shot on Sat morning, and that went fine. I'm pretty much on the pre-med high for the next 24-36 hours because by the time we get home from church on Sunday, I am so ready to collapse, it's scary. And the bone pain from the Nulasta shot started bright and early Sunday morning as well. So weird - right? Those of you who care, the Nulasta shot makes your body produce more white blood cells, the ones that fight infection, and those come from your bones, mostly your biggest bones in your body - your back, your forehead, your breastbone, your femurs, hips - and the pain feels like, well, it's like pain 'pulses' - quick ones, that take you by surprise, it's quite uncomfortable. They say Claratin is supposed to alleviate this, and oddly enough, I think it does. I take the 24 hour one, and it does help. Did I remember to take one yesterday? Nooooo - dork. Then today I was just weak - just a massive headache and weak - need to remember to keep eating because everything tastes awful - must keep eating. Oy. My mouth sores are not as horrific this time either, which is good. I actually finally tried the infamous 'miracle mouth wash' that the pharmacist will make for you and I have to say I was horrified. It didn't taste bad, but it made the entire inside of my mouth numb, completely numb for like, 30 minutes - no joke. I felt like my mouth was the size of a frickin watermelon - I've decided to call this mouthwash not 'miracle mouth wash' but 'baby fish mouth'. Thank you When Harry Met Sally. I will only use this in case of utter emergency. Yuk.
So church was entertaining. I was so nervous to walk into church because the last time everyone had seen me not only did I have a full head of hair, but I had been giving my testimony at the pulpit in the sanctuary. Now here I come with my little bald head wrapped in some wanna be chic scarf thing. Do you know someone actually came up to me and said 'So I guess the answer is YES then?' and I say 'YES to what?' and they said 'Yes to losing your hair?' Seriously? Well duh - am I not standing in front of you with a frickin scarf on? I need to pray hard for grace here, because I thought I didn't have patience with people the first time I lost my hair, this time is much worse. I will say it again - if you don't know what to say - to me or to anyone in this situation - you have 2 choices - say NOTHING or say THIS SUCKS because it does. That is the most accurate statement anyone can make. Moving on.
I've been really starting to work through the fact that this could really go either way. I've started coming to grips with that and oddly enough, it is quite a peaceful feeling. I feel in my heart of hearts, right now, that I am supposed to fight. However, I know that God knows how this all turns out in the end, and I trust that, whatever that may be. It is a HUGE step for me to be here emotionally, spiritually, and some moments (not days) are easier than others but for the most part, I'm starting to really embrace both possibilities, and trusting that Jesus knows which one is appropriate - and I'm OK with that. Crazy right? PJ and I have started talking in these terms as well, started. I don't want to dwell here, I want to be practical and realistic, then get on with enjoying and loving on one another. As much as we possibly can.
I'm attaching a link to my testimony I gave earlier this month that I mentioned above, if you care to take a listen. Isn't it ironic that the very night after I gave my testimony my hair started falling out in handfuls, and was gone just 2 days later. I feel very passionate about my beliefs, obviously, as there is nothing in this world that has made more perfect sense to me, or been able to comfort me in ways that no one else on this earth has ever been able to do. My relationship with Jesus is one of such monumental friendship, and I hate the fact that this probably sounds 'preachy' to some who read it - I wish it didn't because that is so not who I am, I just feel like I can't adequately express my spirituality into words that can even remotely describe the completeness it has given my life. Perhaps this does, who knows.
http://www.americanlutheran.net/index.php/2012/02/29/personal-story-dina-mountcastle/
God Bless
Dina
Thursday, March 8, 2012
Thank you Sir may I have another????
Well, finally - cleared for my second treatment of Halivan tomorrow. My white blood cell count was finally in a decent range when I went in on Monday for them to OK me for treatment tomorrow. So I get to finish up this cycle. Thank GOD!
My little whisker hairs left graciously on my head by the lovely lady at The Wig Wam who shaved me last weekend are coming out now. I think I was secretly wishing maybe I could keep some resemblance of a hair line. No. And my eye lashes are falling out. What gives here????? I'm the only one at CTCA on this drug who has reacted this way - of course I am!!!!! I guess I don't care if it's doing what it's supposed to be doing - but I'm not going to even know that until I finish 3 cycles - and that just seems like a lifetime away. But, we'll get there. I know, one day at a time - yadda yadda yadda. Part of me just really wants to believe that I'll do 3 rounds then I'll be done. I don't know if I I want to be one of those people who spends the rest of their life on chemo. Definitely not THIS chemo - what else can start falling off of a girl? Seriously! I can't believe my reaction to just one treatment - I'm still baffled by this. I have to let it go - I have to accept that I don't know what is going to happen, and I have to trust Him that He will see me through this. Jeremiah 29:11.
It seems like when it rains, it pours at my house. Maybe I'm not seeing it correctly - but this is how I see it this week. So here I am, with little to no white blood cells, and Ginger gets sick on Tues then has a major seizure Tues night. She starts to aspirate on her vomit, so there I lie, sideways on the carpet along side her, our noses almost touching as I talk her through this seizure, trying to get her to open her mouth and let the vomit out that is coming out of her mouth. As many of these as she has had, I cannot get used to them. I know what to do now, so auto pilot kicks in, but they still just suck, and there's not a damn thing I can do about it. I decided to find the good in this - and found that I will look at this as a reminder of what my purpose is here on this earth - to take care of my children. As soon as she went into this seizure, it was like anything and everything I was feeling was placed on the back burner and I kicked right into 'mom mode'. Don't you think there is something to that? What is it about our mind that can make us kick into overdrive and negate everything we are actually feeling when adrenaline kicks in? So interesting.
I've done ok this week I guess with the 'looks'. I know sometimes people just don't know what to say, but, I hope I don't turn into one of those bitter cancer patients here - the ones all barking at people in the parking lot at Walmart, acting all sorts of crazy yelling 'what are you looking at?' or 'take a picture it'll last longer!' I guess the second time around is a little easier to handle emotionally for me, sucks, but at least I've been here before and know what this feels like, I just need to stay as positive as I was before, despite what I know this looks like to others. So hard to not be defensive, to be bitter, which really means, to be afraid. I am afraid, every day. And I just pray it away - I give it all to Him everyday - practice, practice, practice.
I'm not as envious as I was before - I had a huge problem with that earlier. I'm in a pretty good spot with that now. However, I do find myself envious of peoples health - and I think I need to work on envisioning myself in a healthy place rather than sick place. I'm listening to this amazing meditation/visualization cd that is really helping, gotta focus in on that more.
Well, I haven't had much sleep this week with Ginger being sick and all - makes it for numerous interruptions throughout the night, which, comes with the territory of being a mom - but being a mom while fighting cancer, makes the no sleep thing just a bit more intrusive. Sucks. OH - another weird side effect it this itching - the bottoms of my feet and the palms of my hands itch - and I am either itching or lotioning all the time. Annoying.
I best get some sleep - gotta get rest up for the big 'chemo' day tomorrow. Thought I'd go ahead and share a pic of me with my patchy balding head. Now, I had just taken my makeup off for the evening, so cut me a little slack here, k? And my pups - it's sounds silly, but our dogs are just the best. Our dogs are such a fun part of our family - so cuddly and loving. We love them so much.
Maybe my nickname should be 'patches' now considering my hobo hair here. Well, it'll be gone within a week or so, no need to bitch for too long. Then I can have both girls color on my head with magic markers. Only Madeline was old enough to do it last time, we'll let Ginger take a go at it this time. Washable of course.
God Bless -
Dina
Sunday, March 4, 2012
Wish you were hair............................
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 -
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 -
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
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