I've been spending the last 2 days updating my blog with my old entries from my LHH. I've been wanting to have the 'whole' story all in one spot, mostly so I don't loose it!
Looking back at some of the entries I actually remember writing them. I remember the feelings of being scared, of waiting, of all of the firsts. I remember being scared to write and share! I shared so many boring numbers with you-but I was sharing and that was HUGE for me. Hard to believe now, but sharing wasn't and still isn't a strong suit of mine. Quite a bit has changed hasn't it.
Remembering my hair falling out and the whole wig debacle! Such a very bad day that was. I remember being so self conscious about being bald. Now I just walk around bald and don't feel weird about it. I remember the looks I got from people, the lack of eye contact. Now it just doesn't bother me and see it as their issue, not mine. However I will talk about it when asked.
It's been almost 6 years friends! So much has changed. My fear level still lurks around my brain but it doesn't have complete access. And the fear I have intermittently is not based as much on not knowing. It's more about being worried about the future, or about getting breast cancer, or about the month of May, or about traveling while the kids are here, or about making memories.
I've heard myself wish for, complain about and wonder why I don't get the miracle of healing. It's very evident that since I am alive today, I have gotten a miracle. Not many of us make it past 5 years. So Dear Lord, thank you.
I've learned a lot about food and eating better, exercise although it isn't something I like, vitamin C and hyperbaric treatment. Right now I'm still exhausted so very easily when energy is exerted because… well for pete's sake it's only been 2 months since my last chemo, and those 5 rounds were very difficult on my body. Gotta love the cumulative effect. I've learned to just be, to enjoy, to live as normally as possible. I did get a bit of good news last week tho, my CA125 only rose 4 points and that is just such a relief. If you remember what the plan is, when my number raises to a certain point (yet unknown, but we'll pretend it's 170) I'll have to have a dose of chemo, just one, then wait again for the number to rise…repeat, repeat, repeat hopefully for many years! As crazy as all this sounds, it's a relief. Why is this more doable in my mind? I truly have no idea. I have no idea when I'll have to be 'dosed', I'm just waiting…. And I'm ok with that. Growth? Gosh I hope so.
I'm feeling like I can make plans for the future. That's freedom right there.
I'm feeling like the bone pain will go away when I can move! Hurry spring.
I'm feeling like I can help again.
And I have some serious spring cleaning issues right now.
I'm feeling like I can hope again, believe more fully, and build my relationship with Jesus back up.
Thank you for praying for me. I'm feeling again, which is better!
Tuesday, February 25, 2014
Tuesday, January 7, 2014
Go away 2013
After a year of being on some sort of medicine or chemo for this chronic disease of mine I am very ready to face a new year with better understanding of it, of me, and of living within the boundaries of love and acceptance, faith and hope and belief. It's been a trying, difficult, painful, numbing year, yet somehow amazing slipped in and out throughout it all.
The highlights? Well having Barbara here with us, Abbi graduating and her party, Austin getting his varsity letter, Jayson's birthday party that was 4 months late, and being able to chat on FB with my Chilean daughter, Nellely. My family and friends who did what they could to help me through my storm, our storm.
I have watched more TV than I care to tell, let my kids be on any electronic device more than I ever thought I would allow, done less cleaning- just done less than ever. I call it resting and recuperating. I don't really know how to negotiate what that looks like, what the line is between less stress, exercise, keeping life real, being overly tired and overly out of shape along with overly steroided, causing some weight gain. That just makes me super mad!
Tim and I got to spend an hour with Dr. Hicks last week. We got so much information, perfect timing I must say. There is a lot to tell you. First of all I get to take a break from chemo. My CA125 is 41- where it's been hovering for the last few months. That will be my new normal and that's ok. I kinda had that figured out. For the next several months my Dr. will be tracking my CA125 monthly so that he can figure out what my plan of action, my maintenance schedule will be. It's going to take some time, and some roller coaster rides, but in the end, a PLAN!! To know me is to know I like to at least have a little bit of knowledge about what is next for me. Playing these last few months as 'wait and see' was hard- I know it was hard for you too. Basically the plan will reveal itself in the numbers. When my CA gets high then I'll have a treatment and it will go back to it's new normal. Yes probably only one treatment, probably 4-6-8 months apart; it is another 'wait and see' until my pattern is established. For today, I am so happy and relieved about it. One treatment every few months- piece of cake. I get to recover then live life. More good news is that I am still on the first line of defense chemo, I have no symptoms, and people can live like this for 20+ years.
Not only will we have a plan, but we have his blessing to go and see what other places are offering. This is almost too hard to explain, but some institutions my have found a protocol that has proven to work and is approved for those specific doctors in that institution to use as a standard of care- but the information about those approaches do not have to be shared or approved by FDA or NCI….. So some investigations will also take place. He's totally open to it! As long as treatments aren't' harmful he's all for them. I love my doctor.
2013 tested me and my head and my heart to the core. It shook me, it taunted with my beliefs, it played games with my head and heart daily. I have been unable to read much, because my head can't concentrate, but that includes reading God's word or books about him. I am hoping that I can truly do some resting in his hands while I leave my health in the hands of my doctor (and me), trusting that God is in the middle. I have great hope that once my body and mind recover from the chemo poisoning that I will be able to once again concentrate- on anything else but me. I'm so over me. I want to concentrate on others again.
So the new year begins and I need a resolution- I don't really. I never really got into that simply because they never seems to happen. A suggestion was to choose a word that you would like to become better at displaying, or living as….
The highlights? Well having Barbara here with us, Abbi graduating and her party, Austin getting his varsity letter, Jayson's birthday party that was 4 months late, and being able to chat on FB with my Chilean daughter, Nellely. My family and friends who did what they could to help me through my storm, our storm.
I have watched more TV than I care to tell, let my kids be on any electronic device more than I ever thought I would allow, done less cleaning- just done less than ever. I call it resting and recuperating. I don't really know how to negotiate what that looks like, what the line is between less stress, exercise, keeping life real, being overly tired and overly out of shape along with overly steroided, causing some weight gain. That just makes me super mad!
Tim and I got to spend an hour with Dr. Hicks last week. We got so much information, perfect timing I must say. There is a lot to tell you. First of all I get to take a break from chemo. My CA125 is 41- where it's been hovering for the last few months. That will be my new normal and that's ok. I kinda had that figured out. For the next several months my Dr. will be tracking my CA125 monthly so that he can figure out what my plan of action, my maintenance schedule will be. It's going to take some time, and some roller coaster rides, but in the end, a PLAN!! To know me is to know I like to at least have a little bit of knowledge about what is next for me. Playing these last few months as 'wait and see' was hard- I know it was hard for you too. Basically the plan will reveal itself in the numbers. When my CA gets high then I'll have a treatment and it will go back to it's new normal. Yes probably only one treatment, probably 4-6-8 months apart; it is another 'wait and see' until my pattern is established. For today, I am so happy and relieved about it. One treatment every few months- piece of cake. I get to recover then live life. More good news is that I am still on the first line of defense chemo, I have no symptoms, and people can live like this for 20+ years.
Not only will we have a plan, but we have his blessing to go and see what other places are offering. This is almost too hard to explain, but some institutions my have found a protocol that has proven to work and is approved for those specific doctors in that institution to use as a standard of care- but the information about those approaches do not have to be shared or approved by FDA or NCI….. So some investigations will also take place. He's totally open to it! As long as treatments aren't' harmful he's all for them. I love my doctor.
2013 tested me and my head and my heart to the core. It shook me, it taunted with my beliefs, it played games with my head and heart daily. I have been unable to read much, because my head can't concentrate, but that includes reading God's word or books about him. I am hoping that I can truly do some resting in his hands while I leave my health in the hands of my doctor (and me), trusting that God is in the middle. I have great hope that once my body and mind recover from the chemo poisoning that I will be able to once again concentrate- on anything else but me. I'm so over me. I want to concentrate on others again.
So the new year begins and I need a resolution- I don't really. I never really got into that simply because they never seems to happen. A suggestion was to choose a word that you would like to become better at displaying, or living as….
I've had these tiles for years, in my 'Christian Kitchen'. They've been there so long I forgot what they said. I was thinking about what my word could be, having little to no luck and then I remembered these. I re-read them and decided that Victory, with it's definition is definitely how I need to be walking each day. Then I read trust; do I even need to re explain how little trust in the Lord I have had? Cast…. Again, many of you know that 'casting' isn't a strong suit of mine. I've gotten much better but who on earth doesn't need to do that better. Then Jesus: he's the same yesterday and today yes and forever. In my recent life, in this battle, He hasn't seemed the same. He's seemed distant many times, stingy with the healings being prayed for, dare I say seemingly uncaring. (This is about me and my messed up 'ness') My head knows so much more than this heart can understand, which is good. I know none of those are true about Jesus. I know he is kind and loving and that the prayers are being answered. I selfishly want, for my myself and others, the miracle of healing here on earth. Like 4 years ago. So I will work on seeing Him as the same, always. I will take some time and identify His characteristics so I can speak them when I see them.
So here's how I'll word it- completely backward…. Jesus who is always for me, always loves me, wants me to cast all anxiety's on Him because He cares. I will trust Him with all my being so that I can walk each day in the victory that belongs to Him, and because I belong to Him, it belongs to me.
For now, that is my update, my life change, my commitment for growth.
Thank you all for your love and prayers. Here's to 2014.
Much love,
Vicki
Monday, December 2, 2013
My answer
The question this morning was do you respond in difficult situations with despair or resolve. My answer was YES of course. I can't do anything the simple way,
We learned a new word: Chazaq -
1. To find strength, to be strengthened, to grip harder
2. To continue on
3. To fix what was broken
4. To take courage, to add resolve
We learned a new word: Chazaq -
1. To find strength, to be strengthened, to grip harder
2. To continue on
3. To fix what was broken
4. To take courage, to add resolve
Good word.
This last round of chemo went so much better for me. My dear friend had dinners covered, fruit salads covered, and spent so much time with me. It was so much better than the last round. I even asked friends and family to come and spend time with me. That may sound simple but it isn't for me. Easier than it used to be but still not easy.
One statement shared was get on the path with him. In other words, God has us all on different paths, many different paths within our lifetimes. Sometimes I look and find a different path to be on for a while. That's always a nice reprieve. I love being able to help others and when I can it gives me such great feeling of normalcy. Sounds so simplistic. But when your normal is not good, some old normal feels really good. But my path is not simplistic, happy and fun.
So this path I am supposed to be on with God, of faith, is just not what I want to do. But in the same moment I have to and I know it. Don't know where it leads, don't know when it ends, and don't know who it affects, but it's a path I have to be on.
I'm going to choose faith to live. (might even choose it as a tattoo.) Today I found out the my CA 125 did go down- but only from 51 to 49. That's a little disturbing. Down is good tho- so I am focusing on that. However it also means that I have to do more chemo. Surprisingly I am fairly calm about it. I am hoping it isn't because of things going on in my head but because it just is what it is. You need not know about this head of mine.
But today, even tho I know I have to have chemo, I am very relieved that my number went down a bit. It's been a while. I also called Cancer treatment Centers. Tim and I will be going in January probably. It's been 3 years of looking into it and calling and thinking and blah blah blah. I think it's a good move, to hear more options, to find out more about naturopath chemo and nutrition, which I kinda already know about but have a hard time following.
I am hoping that my handling this better this time means my faith is blooming again. Oh how I've missed that. I appreciate so much your prayers for me to have more faith. I feel like I'm ready to fight and ready to do what needs to be done. I'm still struggling with feeling like the end is so very near, but somehow my faith is overtaking the negative thoughts.
I know it's a lot to take in. I know it isn't fun. And my head is so full of both good and bad questions and answers.
God is pulling back up to the front. Thank you God. May the peace I feel right now continue.
I'm going to choose faith to live. (might even choose it as a tattoo.) Today I found out the my CA 125 did go down- but only from 51 to 49. That's a little disturbing. Down is good tho- so I am focusing on that. However it also means that I have to do more chemo. Surprisingly I am fairly calm about it. I am hoping it isn't because of things going on in my head but because it just is what it is. You need not know about this head of mine.
But today, even tho I know I have to have chemo, I am very relieved that my number went down a bit. It's been a while. I also called Cancer treatment Centers. Tim and I will be going in January probably. It's been 3 years of looking into it and calling and thinking and blah blah blah. I think it's a good move, to hear more options, to find out more about naturopath chemo and nutrition, which I kinda already know about but have a hard time following.
I am hoping that my handling this better this time means my faith is blooming again. Oh how I've missed that. I appreciate so much your prayers for me to have more faith. I feel like I'm ready to fight and ready to do what needs to be done. I'm still struggling with feeling like the end is so very near, but somehow my faith is overtaking the negative thoughts.
I know it's a lot to take in. I know it isn't fun. And my head is so full of both good and bad questions and answers.
God is pulling back up to the front. Thank you God. May the peace I feel right now continue.
Thursday, November 7, 2013
All things committed
I want so much to be able to say that I don't have to have another treatment for now, but I can't. I want to say that my CA 125 went down and into the normal range, back to remission, but I can't. There had been 7 weeks in between my chemo treatments...which is apparently too long..... So my number rose, just a bit. But my anxiety rose to the point that I was certain this was the beginning of the end. Because ovarian cancer tends to have an end.... The truth of it just sucks.
When I went to see my nurse she was completely not worried-even would expect the number to rise because of the time that had passed between the last two chemos. All she said made sense and calmed me. Altho I am not excited by any means to have this chemo, I am not pissed off, or as anxious. I even used the word peaceful. I feel peaceful because there are some intentional steps being taken to keep my family fed, and me not feeling lonely or afraid.
The truth is that the last chemo brought me to a place I had never been before. I've never been lower. But my friends and I figured it out. The depression, altho it lasted only a week or two, was very intense and probably came from a misunderstanding of words and a friend recovering from an illness, which left me on the bean bag alone- at least I felt desperate and alone. It was very dark in my head. Not a common place for my head.
These past 2 weeks God has been doing something. Between the sermon and our Life Group I opened up, opened my heart, and feel a very small amount of hope and light. That is to say I don't think I am going to die today. That's kinda how I felt earlier in the week.
Commitment: that sermon brought me to a point of understanding that perhaps this journey is what I am supposed to be committed to. Perhaps Ovarian Cancer is my 'calling', my story, my way to show my commitment to Jesus. That's the conclusion I came to on Sunday. I don't exactly know how to show I'm committed to my cancer- that's just crazy talk. I think that I have to keep moving into that direction tho. However I don't want it to completely own me of course. I try hard to not let it define me, but I wonder if it is to supposed to. Maybe I've been fighting against that too much. It is obviously what defines me right now- over 5 years with cancer, fighting 4 different times. It's not like it's likely to change, unfortunately. (But keep praying for the miracle)
I'm still feeling like I am on a teeter totter with my relationship with Jesus, but I know that I have to get back into reading and applying what I know and what I learn to my life, to this life. Altho I hate how my children have to see this, I hate that my husband has to hold me some nights as I just cry, I also know that God is working in them as well. Oh how my girl has surprised me, and my tall boy is so beautiful when he smiles, and the red head, well mom and cancer are just normal to him. He was 5 when it started.
Here's what I HATE. It makes so many people sad. And I want to control that- to say don't be sad, just know this is the normal path of destruction it takes. I do not like making people sad, but I am trying very hard to just let it be, to let you go thru what you need to. Just please know, I'd rather spend happy time with you....
Mike made me think of commitment in a different way. Commitment to my husband and family, very important and usually happy. Being committed to an illness is a very strange concept. I was chosen to go thru this for some reason. We all think it's sharing and writing. Is there more? Am I supposed to feel privileged to go thru this? Um- I'm going with no. But I think I am supposed to remain strong, remain committed to doing this crappy journey. And that's ok. Commitments can be ugly and hard. My ugly and hard is cancer, trying to figure out what to do between conventional and alternative therapies, wondering where the money comes from, mortified about Obama Care and wondering what that will mean for my care. I am obviously a chronic case... But I have a lot of chronic issues, like stubborn first born syndrome, a will as strong as an elephant, and friends and family who fight harder than I know.
So I've kinda recommitted to fighting, suffering and being vulnerable for and with you, because you are the hands that help to keep me standing up and fighting. I need your help. The problem is that I don't really know what the help is. So pray, and then do what God reveals to you.
I am committed to fighting. I am recommitted to fighting. I am not going to back down. But, I am still struggling with faith and understanding why I don't get healed-yet. I don't know these answers, I just know they are in my heart. I guess I kinda feel cheated of a miracle.
So commitment took on a whole new meaning for me last weekend. Sometimes commitment is really hard. And sometimes is life threatening. I need God to fill me with bravery and strength enough for you and me.
Cancer changes everything, including the everyday, including priorities, including how to live longer and better and faithfully. And commitment to fight, be sick, and heal- keeping quiet, conserving my energy so that I can heal better. (keeping quiet-yes I'm laughing too). It's hard to be what you have not been before. Saying no, NO I cannot do that. Sucks.
Cancer rocks your life, creates complete chaos, but is a constant reminder that sometimes you have to change the plan, and sometimes you have to commit to living the life assigned to you by the only one who knows that with Him, you will succeed, if you remain committed to Him. Pray me back to commitment to him.
I want the gift of time. I want the gift of health that lasts longer that 6 months. I want to be able to take trips with my family. I just want so much.
Please, pray more than you ever have for me. I must reach that first priority, my relationship with Christ. That is not where I am, altho it has gotten to be more positive.
And thank you for your commitment to me, my family, and praying for us.
When I went to see my nurse she was completely not worried-even would expect the number to rise because of the time that had passed between the last two chemos. All she said made sense and calmed me. Altho I am not excited by any means to have this chemo, I am not pissed off, or as anxious. I even used the word peaceful. I feel peaceful because there are some intentional steps being taken to keep my family fed, and me not feeling lonely or afraid.
The truth is that the last chemo brought me to a place I had never been before. I've never been lower. But my friends and I figured it out. The depression, altho it lasted only a week or two, was very intense and probably came from a misunderstanding of words and a friend recovering from an illness, which left me on the bean bag alone- at least I felt desperate and alone. It was very dark in my head. Not a common place for my head.
These past 2 weeks God has been doing something. Between the sermon and our Life Group I opened up, opened my heart, and feel a very small amount of hope and light. That is to say I don't think I am going to die today. That's kinda how I felt earlier in the week.
Commitment: that sermon brought me to a point of understanding that perhaps this journey is what I am supposed to be committed to. Perhaps Ovarian Cancer is my 'calling', my story, my way to show my commitment to Jesus. That's the conclusion I came to on Sunday. I don't exactly know how to show I'm committed to my cancer- that's just crazy talk. I think that I have to keep moving into that direction tho. However I don't want it to completely own me of course. I try hard to not let it define me, but I wonder if it is to supposed to. Maybe I've been fighting against that too much. It is obviously what defines me right now- over 5 years with cancer, fighting 4 different times. It's not like it's likely to change, unfortunately. (But keep praying for the miracle)
I'm still feeling like I am on a teeter totter with my relationship with Jesus, but I know that I have to get back into reading and applying what I know and what I learn to my life, to this life. Altho I hate how my children have to see this, I hate that my husband has to hold me some nights as I just cry, I also know that God is working in them as well. Oh how my girl has surprised me, and my tall boy is so beautiful when he smiles, and the red head, well mom and cancer are just normal to him. He was 5 when it started.
Here's what I HATE. It makes so many people sad. And I want to control that- to say don't be sad, just know this is the normal path of destruction it takes. I do not like making people sad, but I am trying very hard to just let it be, to let you go thru what you need to. Just please know, I'd rather spend happy time with you....
Mike made me think of commitment in a different way. Commitment to my husband and family, very important and usually happy. Being committed to an illness is a very strange concept. I was chosen to go thru this for some reason. We all think it's sharing and writing. Is there more? Am I supposed to feel privileged to go thru this? Um- I'm going with no. But I think I am supposed to remain strong, remain committed to doing this crappy journey. And that's ok. Commitments can be ugly and hard. My ugly and hard is cancer, trying to figure out what to do between conventional and alternative therapies, wondering where the money comes from, mortified about Obama Care and wondering what that will mean for my care. I am obviously a chronic case... But I have a lot of chronic issues, like stubborn first born syndrome, a will as strong as an elephant, and friends and family who fight harder than I know.
So I've kinda recommitted to fighting, suffering and being vulnerable for and with you, because you are the hands that help to keep me standing up and fighting. I need your help. The problem is that I don't really know what the help is. So pray, and then do what God reveals to you.
I am committed to fighting. I am recommitted to fighting. I am not going to back down. But, I am still struggling with faith and understanding why I don't get healed-yet. I don't know these answers, I just know they are in my heart. I guess I kinda feel cheated of a miracle.
So commitment took on a whole new meaning for me last weekend. Sometimes commitment is really hard. And sometimes is life threatening. I need God to fill me with bravery and strength enough for you and me.
Cancer changes everything, including the everyday, including priorities, including how to live longer and better and faithfully. And commitment to fight, be sick, and heal- keeping quiet, conserving my energy so that I can heal better. (keeping quiet-yes I'm laughing too). It's hard to be what you have not been before. Saying no, NO I cannot do that. Sucks.
Cancer rocks your life, creates complete chaos, but is a constant reminder that sometimes you have to change the plan, and sometimes you have to commit to living the life assigned to you by the only one who knows that with Him, you will succeed, if you remain committed to Him. Pray me back to commitment to him.
I want the gift of time. I want the gift of health that lasts longer that 6 months. I want to be able to take trips with my family. I just want so much.
Please, pray more than you ever have for me. I must reach that first priority, my relationship with Christ. That is not where I am, altho it has gotten to be more positive.
And thank you for your commitment to me, my family, and praying for us.
Tuesday, October 22, 2013
Surrender
Here I am down on my knees again surrendering all, surrendering all
And find me here Lord as you draw me near I'm desperate for you, I'm desperate for you
I surrenderDrench my soul as mercy and grace unfold, I hunger and thirst, I hunger and thirstWith arms stretched wide I know you hear my cryspeak to me now, speak to me now
I surrender, I surrender, I want to know you more, I want to know you moreI surrender, I surrender, I want to know you more, I want to know you more
Like a rushing wind Jesus breathe within, Lord have you way, Lord have your way in meLike a mighty storm stir within my soul, Lord have your way, Lord have your way in me
Like a rushing wind Jesus breathe within, Lord have you way, Lord have your way in me Like a mighty storm stir within my soul, Lord have your way, Lord have your way in me
Like a rushing wind Jesus breathe within, Lord have you way, Lord have your way in meLike a mighty storm stir within my soul, Lord have your way, Lord have your way in meLord have your way in me....I surrender,I surrender,I want to know you more, I want to know you moreI surrender, I surrender
I want to know you more I want to know you moreThis song is a Hillsong Hit of course. Nothing like a good Hillsong album to kick you in the butt. The song moved me deeply on Sunday when we sang it. I had to sit, tears coming down. I wish I could say to you that it was because I was having a good moment, but I was wrestling with almost every word, wondering how, why Jesus isn't rushing in anymore, wondering where my soul is. Where did I go?
I am just going to say this once- if you do not want to know about my journey, stop reading. If you don't want transparency, stop reading. If you're going to call my nurse saying I'm suicidal, stop reading because that will be the one time you see me angry! I will reiterate that this is a journey. I do not expect to be here for a long time, this place of ugly. I am now tho. I am already taking steps I think I need to help myself. This is a no judgement, no pity, no transference of yourself, safe place for me to express, because earlier you said I could..... And earlier God said I must.....
This past round of chemo was more that horrible. I have a horrible attitude about my cancer right now. I am struggling so much with the new definition of it being a chronic disease/illness. I like it in the sense that it makes it sound manageable, but manageable for this is chemo every time my number goes up. It's not a shot of insulin or a pill or even a short hospital stay. It's chemo. Chemo is my management system. Yeah, that's how I feel too. That's sinking in. As it sinks it is literally taking my spirit, my heart, my hope with it. Chemo is stealing me away, treatment by treatment. It doesn't seem to matter at this moment that all my blood work shows my organs and systems are just perfectly a typical 47 year old. I just don't believe that. My face, my eyes, my weight- all say sick old lady. I am pissed.
This past round of chemo kept me from smiling for days, kept me crying for many moments in a day, kept me depressed, kept me weak, kept me irritated, kept me alone for far too long. This round pushed me into depression. Yes I will be seeing someone. Now here's where you should stop reading.....
When I listened to "I surrender" on Sunday, (can't sing since I have hardly a voice) I was asking myself what the difference was between surrender and giving up. I give up.
Here I am, constantly for 5 years, trying so hard to let you take care of me
I once felt near, you touched me once, I felt like I knew you but now I'm not sure
I know you enabled some healing once, but then it was gone.
That is why I am struggling to know who you are
I don't feel your rushing wind, breathe on me. I don't even know how to ask for it.
The storm is never your presence, it's always illness, it's always when I feel my best.
I do want you to have your way in me, literally in me. My heart, my cancer, my healing.
It doesn't come. Where is it. What is surrender? I've done this for my life, way more often these last 5 years because of the cancer.
Lord please have your way in me, but I give up. I'm tired. I'm overly poisoned. My spirit is broken and I don't really know if you can help me.Those were my thoughts. The tears came because those were my thoughts and those thoughts and feelings are just so messed up.
I give up. I give up.
At this moment I have Hillsong blaring into my headphones. Obviously music speaks to me very loudly and clearly. I is how I get closer to God. I'm sorry it isn't my Bible right now, but it isn't. It's music and conversation.
I know you have no idea what to say to me, but don't ever let that keep you from talking to me. There is nothing anyone can say. Just be you, and I'll just be me, deal?
I don't know what is next for me. Blood work as usual, although I am seriously considering not doing the CA125. The stress of it..... I just want to gain some strength and then go be who I am, doing what I am supposed to do. I can't even tell you how frustrating it is to loose your breathe walking up the stairs, missing the Grand Opening Sunday of the church where I love deeply and friends worked so hard to make it a dream come true, missing Harvest of Talents, Austin's race, and my nieces baby shower. That's just this past weekend.....
So, here I am, stuck someplace I don't recognize, trying to see the footprints I know are there for me. Must be the wind keeps covering them up with the leaves from the trees.
Pray as God moves in you. Don't even tell me because my eyes roll back in my head. Yeah, I'm a mess. One thing to not worry about is that I believe in God, and I'm glad I've got as much learning under my belt as I do because I also know a lot about Jesus and His truth. I also know it's ok for me to be here, struggling with him. I know that, it's biblical. And in the end he'll win for sure.
Who reads this anyway?
Vicki
Friday, October 11, 2013
Chemo Number 3
I had actually started off Wednesday my dedicating my chemo day to baby Sawyer. Each time I had a pity part I focused on Sawyer and his family. Although I don't know their pain on a personal level, I know that what they are having to endure is no comparison to my troubles. And to find out today that he did pass away and is happy in the arms of Jesus and family members who were just waiting, brings a bit of hope. I am still going to blog about my chemo day, but I ask that you are on you knees for the Caullay/Parkison family whenever you pray for me, too.
Wednesday hopes to be that last of this chapter of chemo. With my CA125 at 40 it just has to know it down to under 35. Man how I'd love to see a teen number. Tim came with me and we pretty much watched TV all day. Until about 3:00, when the inside of my ears started itching, you know the sinus infection itch where you want the knitting needle so you can get to the place where it actually itches. But then the palms of my hands started to itch. You may not remember that I had such a reaction on a different chemo drug- which was way worse that this- so I immediately got a nurses attention and showed her all the places I was itching. I knew doing that would end the chemo. But I also knew not doing that could end a bit more. So they stopped the chemo, and I started bawling. And I am not sure many of you will understand this word and I am not going to define it, but I thought with the allergic reaction that I was becoming resistant. Hence the tears. Well, the doctor came in and between them all decided that my steroid/benedryl/anti emetic/ whatever they put in the pre meds had worn off too soon. So they redid them, checked my vitals and I was good to get the rest of the chemo. We were there from 8-6 on Wednesday. What a day.
We met a new couple. The husband has small cell lung....and from what he implied may not have much time. We all talked a bit. His wife works and she doesn't really have any help, so I looked up the cleaning company that cleans for free for chemo families and she was so thankful. I hate hearing people don't have help. Makes me so much more thankful for all of you.
So it is day 2 after chemo and I am feeling too good, so I am going to utilize it by finishing a scanning job I have. Then we'll see what happens latter today.... I know that fact that I had another round of chemo was a surprise for you. Sorry about that. I was in some serious emotional turmoil and mad. I'm still mad, but that's my life. I still have a lot of questions about what it means to have Ovarian Cancer as a chronic illness. But I'm not ready to look it all up yet. Next week is Avastin and I'll start back up on the High C (we've nick named it).
So for now pray for low numbers, the miracle. And pray for Caullay's and Parkisons!
Love to you all.
Vicki
Wednesday hopes to be that last of this chapter of chemo. With my CA125 at 40 it just has to know it down to under 35. Man how I'd love to see a teen number. Tim came with me and we pretty much watched TV all day. Until about 3:00, when the inside of my ears started itching, you know the sinus infection itch where you want the knitting needle so you can get to the place where it actually itches. But then the palms of my hands started to itch. You may not remember that I had such a reaction on a different chemo drug- which was way worse that this- so I immediately got a nurses attention and showed her all the places I was itching. I knew doing that would end the chemo. But I also knew not doing that could end a bit more. So they stopped the chemo, and I started bawling. And I am not sure many of you will understand this word and I am not going to define it, but I thought with the allergic reaction that I was becoming resistant. Hence the tears. Well, the doctor came in and between them all decided that my steroid/benedryl/anti emetic/ whatever they put in the pre meds had worn off too soon. So they redid them, checked my vitals and I was good to get the rest of the chemo. We were there from 8-6 on Wednesday. What a day.
We met a new couple. The husband has small cell lung....and from what he implied may not have much time. We all talked a bit. His wife works and she doesn't really have any help, so I looked up the cleaning company that cleans for free for chemo families and she was so thankful. I hate hearing people don't have help. Makes me so much more thankful for all of you.
So it is day 2 after chemo and I am feeling too good, so I am going to utilize it by finishing a scanning job I have. Then we'll see what happens latter today.... I know that fact that I had another round of chemo was a surprise for you. Sorry about that. I was in some serious emotional turmoil and mad. I'm still mad, but that's my life. I still have a lot of questions about what it means to have Ovarian Cancer as a chronic illness. But I'm not ready to look it all up yet. Next week is Avastin and I'll start back up on the High C (we've nick named it).
So for now pray for low numbers, the miracle. And pray for Caullay's and Parkisons!
Love to you all.
Vicki
Tuesday, September 3, 2013
Turn ----->
I have to admit that this past chemo session really brought me down. Instead of being tired for 4 days, it was 7 days. Not clothes just jammies, no shower til evening, not caring about much. Mom was hear to help, and you helped with food which was a really big deal this time. I think it's the build up of the medicines going after the cancer, taking a few good things along with it. The nausea is not as bad at all, but stomach discomfort is constant and so very irritating. And add something new- vision stuff. I think ocular migraines. I'm such a blast. The tired days bring with it emotionally difficult days too. Just so down, done, apathetic, crabby... Normal I understand but that does not make it easier to 'be' that way.
It's been a week of harsh reality. Can't really go to Cedar Point because I can't walk a whole day. Don't really want to hang outside in the heat, even if it is something fun we are doing. Can't stay for the whole meeting because I'm about to fall asleep. Can't really volunteer for anything important because I'm unreliable because of this chronic disease. Well, then there's that.
When I really think about my ovarian cancer becoming a chronic disease my stomach turns inside out and my eyes get watery. In my head, that means doing this regimen several time a year. I'm just not handling that well right now. I am not sure if I ever can. I'm not sure I will.
I am going to continue with my Avastin, the High Dose Vitamin C IV's and the hyperbaric treatments. And I am quite seriously thinking about just doing that for a while, no more chemo for now. I don't actually even know if I have to have a 3rd treatment, but what I am saying is I'm probably deciding NOT to have that 3rd treatment.
What I have been dreaming about lately is next summer.... Tim taking 3 months off, and us traveling. NO NOT BECAUSE I AM DYING, because that is not what is happening to me, by cancer right now. However, it is because I don't want to do it when I am that sick. How is that fun? How does that build strong and lasting happy memories. I want to enjoy Australia and smuggling home a Koala. I want to enjoy Paris and getting cranky with the French, I want to enjoy Germany and Barbara's family, I want to enjoy Colorado, and the East Coast. Escape much? Yes please. So if you could just click the link below and donate to..... HA just kidding....
It's a really good idea isn't it!
Sunday was so powerful. I think Andy preached, but David, man.... again..... The songs were incredible. They were about heartbreak, failing, darkness, dead faith, storms, fear, strong winds and deep water.....
Yes, that is what I heard. And I felt freedom being able to BE THERE in my heart and my faith and my belief. At this moment in time I don't 'feel' many of the God outcomes of those feelings of despair. I understand and know them- Oh I know. I just don't quite trust them.
I feel separated, afraid, alone, (not people alone) pain in the night (literally),a dead faith, lost.
I sang almost none of the songs but read closely, studied each and every word, ran it through my heart and soul, danced to the knowing of the truth. Reading, reading, reading. I stirred a couple times during My God's Not Dead, wanting to feel Him roaring inside me. Your Love Never Fails also brought me some hope, but not in the chorus. Do I believe he will work all of this for good? Yes. Do I care right now? NO. New mercies everyday, staying the same, bring joy in the morning and a giving a love that never fails, that's was comforting.
Quite the backwards Sunday for me. I left renewed and with a purpose to reconnect myself to whose I am. I am so thankful He never forgets me. I am also thankful He allows me to feel the way I do. I wish everyone understood that about Him. He's not afraid of our fear or doubt, because in the end, there is only one winner, and it's Him. It's Him.
So I see the signs He is leaving for me. Maybe some of them are these ideas that keep popping into my head. Maybe I only have a few more turns, but I'm trying to find my lost HOPE. I'm sure it's in the field of wildflowers.
Keep Blooming.
It's been a week of harsh reality. Can't really go to Cedar Point because I can't walk a whole day. Don't really want to hang outside in the heat, even if it is something fun we are doing. Can't stay for the whole meeting because I'm about to fall asleep. Can't really volunteer for anything important because I'm unreliable because of this chronic disease. Well, then there's that.
When I really think about my ovarian cancer becoming a chronic disease my stomach turns inside out and my eyes get watery. In my head, that means doing this regimen several time a year. I'm just not handling that well right now. I am not sure if I ever can. I'm not sure I will.
I am going to continue with my Avastin, the High Dose Vitamin C IV's and the hyperbaric treatments. And I am quite seriously thinking about just doing that for a while, no more chemo for now. I don't actually even know if I have to have a 3rd treatment, but what I am saying is I'm probably deciding NOT to have that 3rd treatment.
What I have been dreaming about lately is next summer.... Tim taking 3 months off, and us traveling. NO NOT BECAUSE I AM DYING, because that is not what is happening to me, by cancer right now. However, it is because I don't want to do it when I am that sick. How is that fun? How does that build strong and lasting happy memories. I want to enjoy Australia and smuggling home a Koala. I want to enjoy Paris and getting cranky with the French, I want to enjoy Germany and Barbara's family, I want to enjoy Colorado, and the East Coast. Escape much? Yes please. So if you could just click the link below and donate to..... HA just kidding....
It's a really good idea isn't it!
Sunday was so powerful. I think Andy preached, but David, man.... again..... The songs were incredible. They were about heartbreak, failing, darkness, dead faith, storms, fear, strong winds and deep water.....
Yes, that is what I heard. And I felt freedom being able to BE THERE in my heart and my faith and my belief. At this moment in time I don't 'feel' many of the God outcomes of those feelings of despair. I understand and know them- Oh I know. I just don't quite trust them.
I feel separated, afraid, alone, (not people alone) pain in the night (literally),a dead faith, lost.
I sang almost none of the songs but read closely, studied each and every word, ran it through my heart and soul, danced to the knowing of the truth. Reading, reading, reading. I stirred a couple times during My God's Not Dead, wanting to feel Him roaring inside me. Your Love Never Fails also brought me some hope, but not in the chorus. Do I believe he will work all of this for good? Yes. Do I care right now? NO. New mercies everyday, staying the same, bring joy in the morning and a giving a love that never fails, that's was comforting.
Quite the backwards Sunday for me. I left renewed and with a purpose to reconnect myself to whose I am. I am so thankful He never forgets me. I am also thankful He allows me to feel the way I do. I wish everyone understood that about Him. He's not afraid of our fear or doubt, because in the end, there is only one winner, and it's Him. It's Him.
So I see the signs He is leaving for me. Maybe some of them are these ideas that keep popping into my head. Maybe I only have a few more turns, but I'm trying to find my lost HOPE. I'm sure it's in the field of wildflowers.
Keep Blooming.
Subscribe to:
Posts (Atom)
