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….