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

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.

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.

Tuesday, October 22, 2013


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 surrender
Drench my soul as mercy and grace unfold, I hunger and thirst, I hunger and thirst
With arms stretched wide I know you hear my cry
speak to me now, speak to me now 

I surrender, I surrender, I want to know you more, I want to know you more
I 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 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 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 me
Like a mighty storm stir within my soul, Lord have your way, Lord have your way in me
Lord have your way in me....
I surrender,
I surrender,
I want to know you more, I want to know you more
I surrender, I surrender 

I want to know you more I want to know you more
This 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.
I give up.  I give up. 
Those were my thoughts.  The tears came because those were my thoughts and those thoughts and feelings are just so messed 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?


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.


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.

Sunday, August 4, 2013


This is a picture that was in the bathroom at the doctors office.  It's a new doctor who does natural medicine.  I looked at it and immediately thought wow, thats it.  That is exactly how I feel right now.
That day I received my first High Dose Vitamin C IV, and was pretty excited to find someone close by who could do them.  I had been researching it for quite some time, found out my MD's are pro natural complimentary therapies, and that made me happy too.
But that is not what I want to talk about tonight.
Tonight it is this picture.
A raw portrait of a woman in the process of an emotional spiral.
It doesn't always take much to start the spiral, and other times it takes forever to reach the end of it.  That is what has happened to me this time around with having to go thru chemo again.  4 times?  Why?  It's been a really brutal emotional battle.  A battle to be strong, to have courage, to feel alive and vibrant, to feel anything at all, to be excited for all the graduation fun, to feel loved by God.  
Oh I really miss that feeling.
Oh I'm happy to be at the end of this spiral.

A brilliant friend of mine suggested that the emotion I've been feeling is grief.  I just looked at her and commented that I thought she was right.
If we go thru the series of events, it all makes sense.  After treatments last spring it was explained that my cancer would now be considered a chronic illness and would be treated like a chronic illness.  That means continual treatment.... 
Last fall God did do a miracle in me, by using me and food and a serious change in eating which made my cancer number came down.  And although I continued with much of the diet and still do, within a few months my miracle was gone.  I didn't get to be a miracle anymore.  The problem was that I really thought that the cancer was gone-that's the miracle I believed I had gotten.  But then January came, and so did the high number.  I did NOT want to go thru chemo.  Period.  I just didn't want to.  Period.  Lots of reasons, but mostly because of Barbara.  I didn't want her exchange experience to get even worse.  We had just 'rescued' her.... So, I wanted to find a reasonable compromise.  I realized that Avastin is used during my chemo treatments to help keep the tumors from growing, why not try it now.  I didn't have a tumor, it's just microscopic.  So I got to try just the Avastin, which was an amazing alternative!  And for 6 months it kept my number down, not within range, but down.
Until it didn't.
I hate spring.

So yes, I've been grieving.  I lost a miracle.  That's how it felt.  I felt unworthy, cheated, unloved, and my faith was challenged.  How can I believe He's for me when nothing in this particular journey has been good, except for that short term miracle, which was taken away.  It's sad.  I was sad.  I am sad.

David Carnes, um, you woke me up today.  I missed every song this morning.  That never makes me happy.  I listened to a good sermon, one that could be two teachings, the one for today, and one for the serious crisis.  But Davids words, nobody has had a harder life than Christ- being forsaken by his Father.  Now that's an emotional spiral just waiting to happen.  He used real examples from our congregation who have horribly terrible lives right now.  Just so personal.  For me it was what I needed to hear.  A reminder that this life is hard for everyone. Period.

In this world you will have trouble but be brave!  I have defeated the world.  John 16:33

And there it is.  The truth.  I've always known this and always believed that even tho our struggles are different, some harder by earthly standards than others, struggles are hard!  Life is hard.  Is your life easy?  There are things some of you are going thru that would make me curl up into a ball and cry....

Which brings us back to the portrait.  She could be at the beginning of her downward spiral, and the beginning of her struggle.
She could be at the end of the spiral, ready to stand up and get going on healing and fighting to make it thru the struggle, with the One who has been thru it all before us.  Today that portrait looks like a woman preparing for her battle.  She is done with tears and unhealthy emotions.  She's about to stand and dress for battle.
She is a seedling, finally rooting in the pure soil of God's truth, and about to bloom in her faith because of her struggle.
Her "Faith is in Bloom".
Now that's a 5 year circle my friends.

I'm fragile, I'm weak, I'm scared, I'm furious, I'm down hearted, I'm grieving.  I realize now that I still have my miracle.  A miracle is a miracle.  They aren't all forever, some are for a moment.  I've had some good moments.  Few, in this particular journey, but they've happened.  So I reclaim my miracle. I also reclaim my faith.  I may be starting lower in the faith department for right now, but I'm going to make an effort to bloom again.

Just call me a wildflower... Mine have just started blooming in the garden.

Bloom where you are planted is a saying I've always loved.  It sucks being planted in cancer, but for God, for plans he has to use this, I'll bloom.  That's my job.  He told me that 5 years ago.  Live this out loud and honestly.  I can't promise good moods all the time, or a smile everyday, but I can promise to do what God has asked.

Wildflower in Bloom

Sunday, July 21, 2013

Playing with curls

I can't seem to keep my fingers out of my hair.  I'm twisting it, pulling the curls, loving how they feel, loving the memories of them.  It's been 5 years since they have returned to my head.
I think that is part of the reason I am having such a hard time knowing they will be gone in 3 weeks.  And I am convinced that the curls do cause cancer.  Simply convinced.
So if you haven't heard, I begin Chemo again on the 24th.  When you step back and look at it, I did get 7 months extra- thank you Avastin.  I wanted to have an awesome graduation party before I got sick.  I wanted to be able to spend time with our exchanged student without being sick.  But mostly it was about graduation.  I wasn't about to let cancer take a moment out of our first graduation, our first party, and our first born growing up and going to college.
One question I don't seem to understand coming from some is this: How do you feel about this?  Well, gee, I feel crappy.  I feel like I'm living a scene from Groundhogs Day, I feel so sad, so scared, so anxious; about side effects, pain, stomache issues and of course how much longer until the next treatment.
I've decided I need to change my scope of hope.  I'm not going to loose hope, but I am changing it from hoping for a healing to hoping I only have to have one treatment a year, maybe two.  Maybe that will bring some hope back into my life.  My Ovarian Cancer has now become a chronic disease.  So it will be treated as such. Sadly the treatment sucks.  Although between this one and the next I will be looking into some alternate and complementary services.
All that to say, here we go again.  Thanks for coming with me!
We are hoping only 1-2 treatments, same as last summer.
Specific prayer would be for the pain from the Taxol- terrible leg cramps. And of course, that this would be the last.  4th time around.... enough already.

Much love,

Tuesday, July 2, 2013

The summer of baseball

Well I am going to make it thru baseball with hair, but it looks like I won't make it thru August.
The last couple weeks has been riddled with a whole bunch of waiting on blood tests, and a whole lot of hoping and praying that the inevitable wouldn't happen.  But inevitable is what it is.
However, inevitable was on vacation for 6 months!  6 months my friends and family. As my sister reminded me, we just hit the 5 year mark, one I shouldn't have hit according to the stats.  But stats is not what I am about is it?  Nope.  Except for my CA 125 I don't talk about numbers. I hate numbers.
I do however love sticking it to the numbers. I got 7 months with the Avastin. I'll admit I wanted to put off chemo for a few reasons.  1. I don't want to  2.  I want a summer with hair, 3. Abbi is graduating, and 4. Barbara was here.  So Avastin did give me the time I wanted.  It gave me an extra 7 months without chemo, time to enjoy graduation, baseball and an exchange student.  Quite a lot of important, once in a lifetime things.
This part is hard to explain.  Some of you will understand...
I knew we were putting chemo off, not exterminating it.  Altho I was hoping.... But I didn't tell you that part.
What I hate most, truly, is that it makes you sad.  I really hate making people sad.  I know I've become a bit calloused and 'matter of fact' about all of this.  I think it's because I am almost numb of emotion that isn't negative about cancer and my battle.  Not negative about other people and their problems, just to me.  I find myself telling people as if it's just a normal day.... when I know it's breaking your heart.  I'm sorry.  I know too much about it I suppose.
So, the good is that Avastin postponed the inevitable for 7 months.  My family got to enjoy graduation, prom, Austin driving, baseball, and Barbara. My body is still responsive to all the first line treatments- which is almost unheard of.  So much good.
The bad is that I freaking have to have chemo again, on July 24.  Probably only 1-2 treatments.  It's only microscopic, altho I don't know why that is better.  I'm leaning toward a second look surgery, even tho that hasn't been talked about.
I guess I'm freaking out a bit.  Not that it's all bad.   I've also looked at some complementary therapies. Eating a lot of organic, but can't jump to vegetarian/vegan. Doing what I can...
So the facts are: my number keeps going up.  I have to start chemo and the date is set for July 24. (Yes that is because of Abbi's party).  The facts are also that this is the norm for ovarian cancer.  It's going to be treated as a chronic disease.  And that is how it's going to be.
How am I?  Terrible.  I'm mad, sad, and so MAD.  Why can't prayer work?  Why can't I just be healed?  My faith is weary- not my belief.
So now what?  Just pray hard please.  For healing of course, but for my heart, for hope and faith.
I have my Avastin on Wed along with a blood test.  I'm mortified to find out my number but I am certain it is higher. Another fight I am trying to 'train' for.
And one more thing: I am now CERTAIN that for me, curls=cancer.  So, no more comments about the cancer causing curls!
Thank you for continuing with me.  We have years to go, but they might be really hard.  You might have to get a spatula to turn me over when I am fried.
Thank you, just thank you.
And I'm sorry you're sad.
And I'm sad this has to happen again.
But maybe, just maybe, these 3 weeks before Chemo starts my numbers will plummet.  That's what we'll pray.


Monday, June 3, 2013

Some written

No one else can feel it for you
Only you can let it in
No one else, no one else
Can speak the words on your lips
Drench yourself in words unspoken
Live your life with arms wide open
Today is where your book begins

The rest is still unwritten

-Nathasha Bedingfield

Last week Abbi had her Baccalaureate service.  It was really quite nice.  A praise band from our local Woodside Bible Church, a good sermon, and several great performances from some seniors.

I've been having a real struggle with believing that hope is even necessary for my life right now.  It seems like every time I really believe that I am not going to have cancer again, it gets squashed by reality.  Makes hope seem very difficult to maintain.  Makes even faith a little hard to maintain. A friend reminded me that Jesus gets our humanity, and understands our times of despair.  I'm sick of being stuck here.  And I'm ready to get my butt out of the mud.

There are a few things that have struck me the last few weeks.  I've missed a lot of church services because of graduation things or vacation, but God likes to work on me then.  It struck me that my doctors keep saying we will be treating my cancer as a chronic illness- because it's not really going to go anywhere, barring a miracle.  Ok- that sucks and is terrifying.  I spend some time thinking about it and decided maybe I should just call this a chronic illness, not even allow it to have a name.  I haven't decided if that gives service to the cause or not tho.  People need to know my story, so there has to be a name for the illness, right?  

So much reading I have been doing of complementary medicine as well.  Most include leaving home for 6-8 weeks.  Oh won't that make the family happy. (I hope not)  One resource really struck a cord with me and is really challenging me to think more about the other options out there.  But man the $$ is kinda incredible.  It's sickens me even more to know that people have to figure out how to pay for being healthy.  

One of the seniors sang "Unwritten" by Natasha Bedingfield during the ceremony.  I've heard it a thousand times, but listening and watching her sing it made me HEAR it.

I've been saying I feel numb, but really, I am choosing to not feel all this confusion and pain, doubt and anger inside me.  Unfortunately I'm the only one who can give it proper voice- ya know since they're my feelings and all.  I am not sure how to drench myself in words unspoken- I think it's letting each drop of those emotions drench me with all the hurt, so that the truth can be revealed- so I can finally live again, with my arms wide open to new and fun things, as well as open to the serious and bad things on their way.

The unspoken words, falling like rain.  That's why I need to feel it on my skin.  They need to soak in.  Then the unspoken words of healing from God can fall into my soul, my heart, and help me heal.  Help me be whole.

I've written a lot about this. 

But, the rest IS still unwritten.

Perhaps the writing strike is over.  Perhaps I can find joy and beauty again in the every day things.  Perhaps looking at what I have gotten to do, see, say and live for during these 5 years of fighting as gifts instead of the life I deserve will help.

What a gift to be in the study and on the study drug.
What a gift having 2 years of remission once.
What a gift only having to have 3, then 2 treatments during my recurrences.
What a gift that this time I've gotten 5 (maybe more) extra months without chemo because of the study drug.
What a gift to have an exchange student.
What a gift to see my daughter get her licence, have a boyfriend, be able to remain herself during the worst peer pressure moments in life.
What a gift to see my daughter go to prom.
What a gift to see her graduate.

That's a lot of gifts.  Thank you Lord for giving me these 5 years.  I still ask for miraculous healing, but I will do what you have planned for me.  Thank you for loving me, even when I'm a bit sassy and mad.


Sunday, April 28, 2013

Psalm 71

Psalm 71

In you, Lord, I have taken refuge;
    let me never be put to shame.
I have tried Lord to stay in your embrace,
to never bring shame to your nameIn your righteousness, rescue me and deliver me;
    turn your ear to me and save me.
Lord hear me when I pray, rescue me from myself
deliver me from negative thoughts
Be my rock of refuge,
    to which I can always go;
give the command to save me,
    for you are my rock and my fortress.
I know you should be my rock and place of safety
please save me from this, become my fortress, 
my strength.
Deliver me, my God, from the hand of the wicked,
    from the grasp of those who are evil and cruel.
Keep me from those that wish me harm,
who do not understand who I am in you
For you have been my hope, Sovereign Lord,
    my confidence since my youth.
For I have hoped in you since my younger days
From birth I have relied on you;
    you brought me forth from my mother’s womb.
    I will ever praise you.
I have relied on you since 1989, being born again
after being born of my mother.
Thank you Lord.I have become a sign to many;
    you are my strong refuge.
Many people know that you are my strength
That you are my hope.My mouth is filled with your praise,
    declaring your splendor all day long.
I talk about you often and how you have helped me
Do not cast me away when I am old;
    do not forsake me when my strength is gone.
10 For my enemies speak against me;
    those who wait to kill me conspire together.
11 They say, “God has forsaken him;
    pursue him and seize him,
    for no one will rescue him.”
12 Do not be far from me, my God;
    come quickly, God, to help me.
13 May my accusers perish in shame;
    may those who want to harm me
    be covered with scorn and disgrace.
When it is my time to leave this world
be my strength and my guide.
And when people try to take YOU out of me,
and say you are the reason I have gone,
Come quickly to help me, come quickly to reveal
the hope that I held on to in you. 
14 As for me, I will always have hope;
    I will praise you more and more.
As for me, I try to have hope each day,
As my hope grows so does my praise
15 My mouth will tell of your righteous deeds,
    of your saving acts all day long—
    though I know not how to relate them all.
My voice, my actions, my life will tell of your love
and your acts of provision even tho the words
will never have the ability to fully understood16 I will come and proclaim your mighty acts, Sovereign Lord;
    I will proclaim your righteous deeds, yours alone.
When I go to others I will talk of your love, your acts of
salvation and strength in my life, yours alone17 Since my youth, God, you have taught me,
    and to this day I declare your marvelous deeds.
I can see all you have been teaching me, even in my 
childhood when I didn't realize you were so available18 Even when I am old and gray,
    do not forsake me, my God,
till I declare your power to the next generation,
    your mighty acts to all who are to come.
Lord help me make the time I have here count.
Help me to tell of all you have done to my children,
to their children and to all I meet.
19 Your righteousness, God, reaches to the heavens,
    you who have done great things.
    Who is like you, God?
No one can be like you God, loving and giving hope
doing great things for all under the heavens20 Though you have made me see troubles,
    many and bitter,
    you will restore my life again;
from the depths of the earth
    you will again bring me up.
21 You will increase my honor
    and comfort me once more.
Tho I have lived thru many trials and troubles,
You will restore me and make me whole.
You will bring me to you
And increase my honor among others
And comfort me forevermore.
22 I will praise you with the harp
    for your faithfulness, my God;
I will sing praise to you with the lyre,
    Holy One of Israel.
Because of your faithfulness and love,
because of your might and power,
I will sing praises to you.23 My lips will shout for joy
    when I sing praise to you—
    I whom you have delivered.
I will stand up and shout for joy
when I praise you
Because you HAVE delivered me.24 My tongue will tell of your righteous acts
    all day long,
for those who wanted to harm me
    have been put to shame and confusion.
My words will always tell of your righteousness
so that those that have no understanding of the YOU in me
will be ashamed and confused at the hope I have in you.

Father, at this moment I am struggling to trust.
At this moment hope seems so far away.
When hope was all I KNEW was available
I found it easy to find refuge in you.
As time continues on I am ashamed that my hope
has become fleeting.  I feel I can't hope for healing because 
I feel that it was given and then taken away.  I am the confused one.
Lord help me to keep fighting my way back to the place
Where in you I feel safe and secure.
Help my focus to be on you, and all that is good.
Because when it is all said and done, the only thing my life must 
accomplish is the passing on of my belief and love for you to my children and my friends.  Without you, without finding you in 1989...
Thank you for saving me.  That is one thing that is certain in my life.
I am saved, receiving that free gift from you because of the grace and mercy you have shown to me.
Lord allow hope to once again be the highlight of my relationship with you.  Help me to find the quietness I need to reflect on the reasons I have to trust you.
Lord, please heal me.  Please allow me to be a living miracle.  Please wrap up these fears and doubts and take them from me, replacing them with your truth, not the devils lies.  For you are love and light, peace and hope, quiet and trust.  For this I will worship you always.

Monday, March 25, 2013

Baseball with hair

For those of you who can't see me, or who don't know what is going on with me, I must tell you..... altho I am fighting again, I have hair!  And my hair is CURLY!!!  It has been years since I've had this much hair, and even longer since it's been curly.  It's been just like riding a bike, I know exactly how to care for it.
My fear of the curls has gone.  I used to equate the curls with recurrence. That may seem so completely crazy to you but let me explain.  Every single time I have had a recurrence, my hair was just starting to get curly.  EVERY time.  But this recurrence was different.  I barely had hair, and it was straight.  As I've fought this battle with the awesome Avastin as my medicinal miracle, my hair has gotten curlier and curlier. I feel like ME!  Because everything about me is curly.  My forgetfulness, my free spirit, my hyperness, my hobbies, my sass- just everything.  I am a curly girl, in hair and in mind and spirit.  Hard to follow isn't it.....
This year I get to watch my sons play baseball.  I've been doing that for so many years, but for almost 5 years I have been a bald baseball mom.  A fighting for her life baseball mom.  A "gee son I have to miss this game" baseball mom.  A baseball game lets me escape from the reality of cancer, escape from fighting.  I get to yell, talk, laugh and pick on the boys.  I get to fight for them instead.  And the families involved are so helpful with that.  They just talk to me as if everything in life is ok.  Oh how I love that.  (Not to be misunderstood- I am always willing to talk about my cancer journey).
This year my hair will actually get messy from the rain and wind.  My hoodies will smoosh my curls.... The humidity will grow my curls...... And the smile on my face while it all happens is going to feel awesome.
Avastin seems to be working.  We have 17 points more to lower until we are 'normal' but lower is awesome.  Baseball starts on Thursday.  Any way it is sliced, I get to have hair for baseball season.  Even if bad things happen....
Ovarian cancer has proven itself to be a strong beast.  My body is responding well, and the recurrences are not unexpected.  No answers will ever be had.  That's ok.  I've learned to live without knowing, without answers.  I don't really think I want to know the answers.
This year I get to watch baseball with hair.
At this moment, that is my win.
So there cancer, take that. I don't care what you have planned for me.  I am content with today. Not because of curls, but because the fear is not as oppressive.
Out loud I say, Satan you do not have power over me.  You do not know what I think.  You are not omniscient, you are not powerful.  I have Jesus, I have people praying, and you have no power over me.  You cannot keep me in the state of fear.
So cancer, take that.  Right now you are not in complete control.  I hate you.  My family and friends hate you.  But I don't think you will own this girl again.
The journey lately has been rediscovering my hope, my trust in the Lord.  It's been tested to it's core this past year. I really just had no faith in healing.  I'm not sure I do now, but I have hope that it's maybe possible.  It's more scary to realize my faith is failing than my health.  Don't misunderstand, not my belief.... I believe every word in the bible, everything my own life has witnessed, every move I know that has been God breathed.
Rediscovering hope.  That's the next movement for me to take. Faith in hope.
Spring, baseball, hair, curls, Avastin...... all bring me hope.  While I may be fighting the beast again, it's different this time.  It's easier in some ways, not in others.
I guess I have curly faith too....

Now listen, after my last post, after the over reaction to it, I am hesitant to even write anymore.  I did not say that I don't believe in God, and I did not say that I don't have faith.  Do not, under any circumstances, judge my words based on what you think they mean.  They mean what they say, and that is all.  Allow me to wander thru my head and heart without assuming I am completely lost.  I am not lost.  I know who I am and I know whose I am.  That is solid.  What is not solid are my curly thoughts and fears, my moments of doubt.  I don't want those solid!