Wednesday, August 27, 2014

F5, we're gonna die!!

As the debris flew across I 275 on our way to the first Cross Country Race Barby and I were, well, just a wee bit concerned.  I was looking at this awesome cloud formation, the kind where each cloud is going in a different direction and they were just layered on up into the sky until they met the boss cloud.  If that wind had moved in just the right way…. Hence my 'F5, we're gonna die' comment.  We laughed, until we got off the interchange and I looked at Barby and asked if it was windy.  I knew what the answer was because the trees were, shall we say, doing some yoga.  She said yes, as a box blew to the car and we crushed it, debris from who knows where just kept flying by.  We waited for a cow, but we were in the city so…..  By the time we do get to the park the meet is basically cancelled.  Awesome.  So we drove home, in much calmer weather.  I should add we weren't  acting hysterical in the scared sense but we were laughing a lot.  Well, until she almost hit the downed branches/trees.  Dead trees half way across the road.  'Teri! Tree!!!'  Swerve, miss.  LOL because I called Barby Teri.  It was kinda a fun death defying experience all in all.

So I got to thinking, which is a good thing since I've been so very numb since coming home from the Mayo Clinic a few weeks ago, that truly that drive could have ended tragically.  We saw many accidents that did.  It just helped me to see that there are a lot of different tragedies in life, I don't own them.  I've got one.  Many people have so much more.

I know you all want to know about the Mayo visit at the beginning of the month.  It was highly tragic and it was an F5 tornado that ripped though our entire beings.  Shelly and Teri came with me this time. I had my blood work done and my CT done in the morning then saw Dr. Worwora in the afternoon.  A lot had changed since May.  One area by my stomach was double in size, I had a lot of growth and new areas throughout the peritoneum and I also had ascites, which is fluid around your organs caused by the cancer.  All of this combined puts me into the category of Stage 4.  I didn't qualify for any trials.  And I truly lost all hope.  I know what ascites means. I've read so very much on this.  I felt like I was 9 months pregnant because of the fluid build up, so very uncomfortable.  I hadn't been able to eat more than a couple bites at a time.  Energy level non existent. Could go to church because I just couldn't.  I can't really put words to that one.  We record what the doctor says, but I haven't been able to listen to it again-yet.  Then to learn that I probably need to move on to the second line chemos.  I mean each sentence was blow to the heart.  Thankfully he could see that I was misbelieving some things.  He flat out said he disagrees that this is the END as I called it, and that the 3 meds I get to choose from have great results.

Side note: I understand the meds can have great results. I also understand that you're on them forever, whatever that is for you.  I have much doubt in my physical ability to make my forever long.  I was rejecting God into any scenario which could clearly be seen by the rolling of my eyes!

The next morning the Dr called me!  He called because I asked him the question I ask many doctors, just in case they aren't seeing me as a real live person who still has a family to raise.  I asked him if I was his wife, and this was her situation, which of the 3 meds would you want her on?  Shelly doesn't think he's ever been asked that.  It took a moment and he said the Doxil because like me she would want to be able to do things with the kids and live a somewhat normal life.  I said ok then that is what I will do.  So he called because he spent the evening making sure there was not a new trial that I could fit into and he was making an appointment for me to have my ascites drained.  There is a trial, but unless I move to Minnesota or they allow my care team here to perform it I can't really do it.  I really don't want to be in Minnesota in the winter!  But I don't have the final answer on that yet.

I went to see my nurse the next week, gave her copies of all the info and we talked, a lot.  She confirmed the end is far from this moment.  She agreed with the Doxil and Avastin combo, which is a usual next step.  The problem with the Doxil is that it can take up to 4 treatments before scans and numbers change.  But that's ok.  I'm sure it'll be working and I'll be feeling a bit less full of cancer than I  do right now.

So I scheduled for Aug. 22.  Only 2 weeks after finding out all of this information.   Not nearly enough time to do, learn, clean, prepare the way I know I need to before chemo starts.  I hadn't even gotten out of the pit yet.  I was so sad and shocked and pissed and broken hearted I couldn't process, or move off my chair.  Yes you could def say depressed.  And yes, I get that it's ok.  Don't you worry about whether or not I believe something is ok!!  When they called to cancel it because I needed an Echo on my heart to be sure it's working well before I take this med (comforting) I was so relieved!  It was the first time it felt like God was back into knowing me.  I've come super far this week.  I mean I'm not having a party, but I don't roll my eyes when I hear his name.  I may not be able to sing but I'm listening.  I may scoot out early but its just because….. I don't know what to say any more than you do!  And what I have to say really should be said elsewhere, if you know what I mean.

So now I go in on the 29th, if my echo is fine. It took me a few days to settle on a day but I did it.  I think that if I start Friday I'll be able to still drive to school the first day, be able to go to curriculum nights for the boys and at least know a little bit about their schooling for this year.

So I will be very honest and tell you the last few weeks have been harder than any other part of this journey, even finding out I have cancer.  All that bad news rolled into one hour was too much for me and the girls because we were not expecting so much to be so bad.  So if I seemed off, I was, and I will be.  I may catch a glimpse of you, but that may be all I can handle.  I'll have to be careful of germs again which means no hugging.  Really?  That's just torture.  I can't commit, which is now my way of life when it used to be the opposite.

So, one more day of feeling like half crap then an unknown number of days to feel unknown!  Awesome.  See, hard to get a grip when you have no idea what is coming.

Me and God, we're tussling.  I have my faith but I'm not gonna lie that it falters very often lately.  I do a lot of eye rolling, but my head knows the truth.  And the only reason I am so scared is family and friends.  I suppose the different endings with me as well, but truly there is only one ending.  And who knows, it could be an F5, not cancer….. I'm not really as smart as I think I am…..

Thank you all for caring so much.  Please keep praying.  Also, share this blog if you'd like to.  Maybe we can help someone.  Ovarian Cancer is so overlooked, under researched, so unknown.  Help spread the word.

Vicki