Wednesday, October 8, 2014

My Journey Takes A Slight Curve.....

Why is it when you drive so far on the way to your destination, it seems much shorter than on the way home?  Pat and I had every intention of stopping overnight and then he boldly states we are driving home Tuesday night. Grrrr!  BUT, we did do exactly that and we made it to Suntone Road by 12:40. A couple of times he mentioned stopping and just getting a room but I at that point in the game was like "Nope, we're 4 hours from home...let's get it done!

On the day of my visit with Dr. Javle, we barely sat down when Ron (the nurse) called my name. We have known him so long we hug in the waiting room and everyone stares. Then he proceeds to flirt and say " got it going on"....or "Boy, you are smelling fiiiiine this morning"! Tuesday, it was "Ohhh, I like the hair".....  He also works for a couple of surgeons that do resections when Dr. Javle has work in other buildings. So, to The Horn's....look for Ron. He just might be there for YOU!
No PA came in to this visit but after Ron asked a few questions in the room, the door was opened and it was Dr. Javle. We did the whole how are you feeling....any pain...blah...blah...blah...type of stuff. Then he asked if I had  any trouble breathing. NO, I don't.  He pulls up the scan....the GOOD news is there is nothing that lights up on the scan where my cholangiocarcinoma is...just a bit of scar tissue which is normal after radiation. Then he goes up to the lungs. Big GULP!  I have, since 2011 when I started this journey, had some nodules in my lungs but of no concern. Then in July of 2013, there were a couple that had gotten just a tad bit bigger and lit up a very low amount on the PET scan. We decided to just monitor it as it could be just from the radiation lingering. Tuesday, there were some new nodules of concern (although they were too small to even measure or biopsy....he is pretty sure they are cancerous). I mentioned my genomic testing and he said one of my mutations was a VERY slow growing mutation. That is why my Cholangio and maybe the nodules are SO slow growing. He would like to let things be until the next visit and see what the nodules do. They may be so slow growing that we let then "sit" another 3 months. If they are getting bigger, I will probably see a pulmonary specialist. Dr. Javle is going to speak to a specialist NOW to see if they want to go in now and just get them out OR let them be until the next visit to re-evaluate. I will e-mail Dr. Javle in a week or so to remind him he is to talk to a specialist and let them evaluate my scan. The good thing is that it's not a mass...they are just nodules and can be easily eradicated with chemo or sucked out....probably followed up with chemo to get any cells hiding from us.  DEEP BREATH~~~~~

As we finished the visit, he said to keep exercising (which I told him I had not been good at lately) and eat well. I told him I usually had fresh fruit smoothies with flax for breakfast and he said "good..good....good!  Eat well~~~

Betty Jean Horn, Moi, and Kristen Horn.
I was also able to meet a family I have been in contact with (for a couple months now) in the lobby of The MAIN Building at MD Anderson. Just as we were walking to the meeting place, they were coming through the doors and so we had a very nice but short meeting with "The Horn's" from Alabama. She is so blessed to be eligible for a resection and I ask that you keep the Horn's in your prayers as she recovers in the months ahead. Wonderful family.....and I believe I am one of the many "angels" they will meet on this journey!!  

If you didn't get a call yesterday about my results, I apologize. I called my daughters, my siblings, and my mother....that is almost it. I wanted to crawl in a hole and wallow in ....not self pity but more of a WHAT!  I have not smoked...this isn't fair....people who smoke those "people killers" should be the only people to get this. My father smoked from appr. 14 to about 5 days before he passed. He literally took off the oxygen to "toke on a cig" and then reposition his air tube of oxygen. He never got cancer in the lungs.....I just find it odd he ate fried foods, never exercised, and smoked Camel cigs my whole life and most of his...and never got the dreaded cancer except prostrate cancer which he beat many years before he passed.  My nodules have metastasized from the CC more than I don't really consider it LUNG CANCER.  I had a million things running through my head.....and some God winks along the way that put me in my place. At times, when I was thinking negative, I believe God stepped in and detoured my thinking to "YOU have no CC lighting up right now...NONE".  That is SO huge. THAT has always been what I have prayed for. These nodules are SO small they can't even measure them???? As Pat says, I am blessed and thankful there are no "wildfires in my body" there are just a few "sparks in there smoldering". SO, if I go back in 3 months and they are bigger and brighter or more of them, I will pull up my bootstraps got it...."STOMP THE FIRE OUT AND FIGHT LIKE A GIRL!!" 

As Dr. Javle  got up to leave, I said so this is a bad visit!?!???  He said NO, this is a good visit, You are STABLE. So stable we are going to sit tight and give me 3-4 months to keep running around enjoying life, praising God for my life, and doing good deeds for people I might not even know.

I am so beyond blessed.... as when I started this journey 3 years and 8 months ago, I wasn't given a lot of hope from the doctors. I have surpassed most patients who just receive chemo and radiation. I have stomped and spit on CC. So....again....I will march to the beat of the drum. I will exercise my heart out, breathe deep and enjoy this crisp air, and maybe even learn to like MORE healthy food out there. But most of all, as I woke up this morning, and as I lay in bed with a few tears rolling down my cheeks, my husband wrapped me in his arms and told me... "Its all going to be have slow mutations and you have FIGHT left in you, and you will... if and when the time comes...fight this with dignity, strength, and faith...just as you have in the past". 

My husband knows me well. Even though I feel like I have been beat up.....I have the most wonderful 5 daughters and one son who I will fight for more time with . I will fight for time with my grandchildren. I will fight my hardest to see Samantha's first child(it's not in the oven yet so back off :-)), I will fight for more time to praise and give thanks for the wonderful life I have had thus far. I have son in laws who I love like my own sons... I have friends who I can't bare to not be able to bug and pester :-) , There are too many harvest moons, double rainbows, autumn leaves, crocuses in the snow, country driving days, canoeing/kayaking on calm waters, lining up food for chemo patients at RMH, ......just living and loving my life.

So for now, we ALL pray. We give thanks every single day...many times over for my health so far. I have faith that God is not pushing me "out there" and thinking "let's see how she deals with this", I believe God is RIGHT beside me. He will hold my hand, he will carry me if needed, he will always be with me. He, along with my family, my friends, my blogger family, my church family, all my Christian friends, friends who pray for me and don't even know me, will be right beside me. Traveling this journey at every twist and turn....and we will keep this journey going as I am guided by God's light.

So...HUP-two-three-four, HUP-two-three-four....onward Christian Soldier.....a marching we all will go...until this cancer all throughout this world is put to death INSTEAD of all the people cancer is putting to death throughout this world is put into a pit and buried forever!!

Hugs and prayers~~