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.