Friday, June 12, 2015

Pieces of Me

I changed the name of my blog recently.  Mostly because as I re-read some of the posts I realized that each post was sharing an actual piece of my head or heart.  You may think that it is easy for me to do, but it is one of the most difficult things for me to do.  Writing it is so much better than trying to tell it verbally.  Oh the problems my words cause.

Back in the fall I started following a blog called Mundane Faithfulness, about a young mother of 4 dying from breast cancer.  Dying.  Her favorite word was Grace and her very strong faith and commitment to the Lord kept her unbelievably-I just don't know.  She was unbelievably awesome.  She wrote a book called 'The Hardest Peace'.  It is about coming to terms with knowing how/when/and why you are going to die.  It's so difficult to read but so good.  Her name was Kara Tippetts.  We had a lot in common.  She died around the time I stopped blogging.  I was just so sad.  The hardest part is that her friends are continuing her blog, sharing older posts, writing about how the family is doing and often writing about their own broken hearts.  I just couldn't  take it.  I can't read about how her friends and family are doing after her death.  I can't read how the children, or her littles as Kara called them, are doing without their mommy.  We have/had so very much in common.  I guess reading about what could be my story is just too much for my heart to handle.

Truth is, I haven't been ok since we came back from Mayo last August.  Starting a new chemo at the end of that month.  Then having so many issues with my body, thankfully nothing serious, but startling when they were unknown.  There is just no break. Then to find out thru a CT scan that I had pleural effusions was life altering.  I had to have a thorocentesis to drain the fluid from my lung area.  It hurt so badly I couldn't even talk about it! Basically my lungs were almost collapsed, which is why I couldn't breathe or stop coughing.  They drained 2 liters from my right lung and 1 from my left.  Yea, that's how I felt too.  Now, I have to go to a new chemo because the other has failed me.  The one I tried a few weeks ago was so not how I was going to spend my time!  So on the 22nd I start another new one.  The worst part is that it is 5 days a week, then 28 days off.  Oh boy, what fun.

So, no I'm not really very ok right now.  No, hope is not my word right now.  No I just don't want to interact right now.  And no, I just don't know how I feel about God.  I know some of what I should know and I believe what I do know about him, but I really don't understand very much right now.  So no, no, I just don't know how to be happy or blessed or content or motivated.  However, I am believing that like many of the dark places I've spent time in, a light will shine and I will be able to see a bit more clearly.  But hear me- this battle is forever for me.  No end for us to be a part of, except one.  It's a ways off, but understand please, the battle ends with me.

My prayer request would be that this new chemo, Topotecan, would work so that I can finally get put onto a maintenance schedule.  The more chemo, the more it accumulates and the more tired this body gets.

So you are caught up.  I'm sorry it is a sucky story.

Sunday, February 1, 2015

The over rated normal

So now it's January.  Our big trip is over- beautiful and wonderful and good!  And blessed!  Christmas is over. And snow is happening in a big way.

So before Disney, normal yuck stuff started happening.  That kidney stone I mentioned in the last post. Well it decided to make itself known with the usual symptoms like blood clots and blood in the urine.  A bladder infection that gave me no physical symptoms, and tummy acid issues.  Everynight with the stomach acid, feeling, um, well pukey.

Then chemo the day after we got home from Disney.  Ok, no issues.  The next day my Vitamin C infusion.  Oh, so not fun.  Several times it has seriously affected my intestines.  This time it did again yet differently.  My intestines were making so much noise it was embarrassing.  Never has my stomach rolled like that.  It didn't hurt, but it created a lot of noise…. LOTS!!  Then it created diarrhea.  Then I'd get a day or two off…. Then I went to the kidney doctor.  Good idea.  Since I have medullary sponge kidney (I make kidney stones and my kidney stores them.  Neat, huh?) he decided I should have a cystoscopy because of the blood clots and such.  Well, of course there was a kidney stone in my left ureter, blocking passage into my bladder.  And of course I had to have a stent put in for the healing of the ureter.  Did you know that those stents are about a foot long?  Me either.  And yes, I did keep it!  I ended up with a bladder infection after the stent was removed, of course.  However, my tummy was NORMAL!!  One month of feeling so much yuck, afraid to leave the house, sick of feeling sick.  I realized I felt worse with this normal stuff than with my chemo!

In the middle of all this I go to see a gastroenterologist as well.  Gotta cover it all.  I think they'll find something ulcerish in my tummy when they do the endoscopy in February.  As for the colonoscopy, hopefully nothing.  I have to admit I do want to be sure that everything is all clear in those areas.

So this normal stuff I've been going thru really was terrible. These tests, these medicines.  It did make me skip one treatment tho.  I just needed my body to heal a bit before being blasted with poison.  It was easy to make that decision when I found out my CA had dropped to 946.  That's pretty amazing.  Still way high, but 5000 lower than it was the last time I let myself find out the number.  There was the miracle.

During this time of normal I also experienced way too much death.  My grandma, my neighbors, friends children from church, friends family members from drugs…. Just so much.  I needed the month off to process my grams, my neighbors, my friends losses.  So much heartbreak.  I've spent some time teary, some time numb and some time in disbelief.  But I have to admit, it's nice to learn that I can still worry about others instead of seemingly always focusing on me.  I want that part of me back.  I've gotten sick of taking and I want to give more.  I'm not quite done with normal yet.  Right after normal comes chemo.  But I feel alive, glad to have had a chance to feel some normal stuff, glad my chemo is working for my crazy stuff.  I think I'm thankful.  Considering the last 2 months of normal, that's pretty amazing.

So I'd like you to pray that my scopes are clear- whether good or bad- CLEAR.  I'd also like to remain thankful, and feeling fairly descent.  And my blood pressure is thru the roof since the cystoscopy.  I didn't react well to the anesthesia.  I'll save you the gory details, but I didn't wake up well….. And yes, I see my primary doctor tomorrow.

So that should bring you all up to date.

Love you muchly,

All about August

So… August.

That's what I've come to call it.  It has taken on it's very own identity in the journey called cancer.  It's that trip to Mayo, the CA 125, the 'no trial for you', the growth in cancer, the metastasis of the cancer, the ascites.  It was the month of crap.  In fact, I think I've just recovered.  I can't believe how long it too for me to process thru the information presented me back on August 7 at the Mayo Clinic.  It was such a shock to the system that even my girls and I couldn't talk to each other.  I think it was about a week before we could be together.  However that was our fault.  We had me loosing the battle way sooner than what the reality was/is.

This is us, trying to just be make things light.  They were waiting for me to find out about removing the ascites.  Yes they are banana phones.

Now remember, we had just been there in May, when I didn't have enough cancer to qualify for any trials and just 3 months later I have too much…. In July I fell.  And I really think (yes it's kinda crazy stuff) that the fall caused this chain reaction in my body.  I had some serious lower left side pain (kidney stone) and just believe with my whole heart that it woke up the cancer cells, caused the ascites which caused the spreading.  Don't know if that is 'medically' possible, but I know my body pretty well by now… And that is what I think happened.

So what was that CA 125 that I wouldn't even tell my parents? Over 5000. That mortified me since my highest number upon diagnosis of the cancer was 276.  So yeah, 5000 freaked me out.  Then it rose to over 7000 the month it took to have my first chemo treatment for this recurrence.  Yeah, a rough month, a rough fall.  But something miraculous happened…. Some normal.

To be continued….