Wednesday, July 20, 2016

What A Visit to Houston!!

First off, I hope everyone saw the Cholangiocarcinoma Foundation's posts on clinical trials. I am just one of the many people that was featured but I think it's a good feature....Clinical trials is where it all starts!    :-)

As Pat and I started toward the airport in St. Louis to head for MD Anderson on July 18 & 19th, I heard a ping on my phone. Let me stop here and explain get it as a cancer patient a lot when going for a scan....and when it is for a brand new trial...FIRST cholangiocarcinoma patient in the U.S. in the trial...the scanxiety WAS TRYING to get the best of me. I just prayed. I told the devil to get out of my head, that there was no room for him!  I told myself that no matter what, God was always there. He has always been with me even when I didn't realize it years ago. But going into this scan, I felt peace. I was calm. I felt that no matter what, God hasn't brought me this far to just leave me standing in the dark...EVER!
So....back to the ping on my phone. I opened it and saw it was from someone who had sent inspirational daily words and they just brighten my day. The one sent on the 18th was sent 'for' me.....and not just 'to me'. It read 1st Peter 5:10: "And the God of all grace, who called you to His external glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm, and steadfast." Our prayer: Lord, thank You for healing us, making us stronger when life tries to break us down. Amen.      This WAS sent to just made me smile and gave me reassurance God was right beside me AS ALWAYS!

After checking into our hotel, we went straight to MD Anderson to get bloodwork done before my scan. There was not ONE person in the lab draw. This might mean nothing to MOST of you but to anyone that visits MD Anderson, this NEVER happens. I told the receptionist I was going to take a picture because in the 5+ years, I had NEVER seen this room empty. There are usually 75 to 100 people crammed into it with standing room only waiting for one of the approximately 25 phlebotomist to call your name.  I get a student to draw my blood and thought "Oh boy....someone who gets to practice on me!"  BUT, it was a positive and perfect blood draw.....and of course I told her where to stick the needle and which direction to point it when entering the plastic needle thing. She asked how long I'd been going to MD Anderson....then she saw I was 51. She stated I was too young  and I didn't look 51. I just laughed it off and said "You should have saw me before I had cancer!" She said God never gives us more than we can handle and I told her I knew that. 6 vials of blood later and I was on my way to the scan area.

The scan area holds about 200 people and the later your appointment, the later you will be getting out of there. My prep started at 6:30 p.m. but the scan was to be at 8 pm. I mean....there are nights I am in bed at 8 p.m. at home!!  You can tell who all the cancer patients are without even looking at all the wristbands.....because they all have this big glass of SHTUFF that you must take an hour to drink 3/4 and then stop until you are ready to be scanned and you drink the rest of it. As I was getting up from the scan, the tech asked if I was seeing the dr tomorrow. I replied yes and thought....WHAT was that all about!  Pat told me she was just making small talk and not to worry about it. Frankly, I was too tired to worry about it. It was 9:30 before the hotel van picked us up and I went straight to bed!

My dr appointment was at 9:30 the next morning. We grabbed some breakfast before leaving on the shuttle. So I was a little hungry! Chetna is my clinical trial coordinator and I always see her before the dr. She will not really reveal the scan results but she is always there to check on the side effects, check on me when I had a 6-7 day virus with a fever, and to order any scripts I might need. She is just a true gem!   Dr. Meric was out of town so I had a "fill in" doctor which is ok....but it's not the same as seeing Dr. Meric. The dr came in and shook my hand like a military soldier. My whole body shook right down to my teeth!  I told her "Wow! That's a heck of a grip!"  She exclaimed by bloodwork was so good. My alk phos jumped 20 points last month but it was down 20 points this month. My platelets are climbing, my white count is good, The RBC is in range. My liver enzymes are perfect except the alk phos. My CA 19-9 is 9.6. My CEA (carcinoembryonic antigen) is at 0.9.  Creatinine is .86.   My GFR is 84 (kidney function).   These numbers are for patients if they'd like to know what another CC patients numbers are. Just remember I have had this disease a lot longer than most of you so I have had a lot of chemo's, radiation X 3, and two clinical trial drugs run thru my I think they look pretty awesome!  My scan....FINALLY!  My scan shows 6% reduction and everything is STABLE. The 6% reduction shows me the drug is working. In just 56 days, 6% reduction is a good thing! 
It's a good feeling to know Dr. Funda Meric has guided me to this trial and this specific arm of the NCI MATCH Program (also known as ECOGEAY 131, Treatment  Arm P trial). It is good to know it is a targeted drug I take daily and it is halting all/any growth and is actually putting this cancer in its place!! I just smiled after all the staff left the exam room and thanked our awesome God for being right beside me. I praised God for answering prayers that so many people were sending up for me.

It IS the most amazing feeling knowing that this trial (that is so small in patients (24 last thing I knew) and we had NO IDEA if it would work for me) IS WORKING!  I pray for more shrinkage and stability. I am beyond words HAPPY with my scan report.

I met up with Cathy Dalton who is also on a clinical trial and doing so well. I sold some books to her and just had a really nice visit!!

I was trying to hook up for a quick visit with Dr. Javle but he was just too swamped. I will ask for a dr visit next month when I am down there to catch up medically.

So....there you have it! 6% REDUCTION and STABILITY!  GREAT LABWORK! 

On the flight home, we had an approximately 2 hour wait as the plane we were waiting to board was having mechanical issues. The plane was finally cleared for takeoff!  As everyone single filed into place, found a seat, we had no idea of the ride ahead of us. As we got closer to St. Louis, the pilot announced everyone needed to stay seated and that St. Louis was having a storm and we would either wait it out or land in Kansas City, Missouri. WHAT?  We must have "floated and circled" around St. Louis for almost 2 hours before finally landing. It was 10:30 pm when we landed and 11 by the time we were shuttled to our car. THEN, we had the 2 1/2 hour ride home. It was 1:30 by the time we hit Suntone Road.   As I was on that plane, with some turbulence and clouds below us SO dark you could not see anything. AND a black cloud above us, I thought to myself  "God didn't bring me this far to crash in a plane!"   No....God's not done with me yet."   I wondered to myself which one I had a higher rate of dying from......cholangiocarcinoma OR a plane crash?  It doesn't matter right now.....I am going to LIVE!

I have a family trip planned with my daughters and their families. It will be nice to spend time with just my girls and their spouses and children. 
Pat and I will travel to a Sandal's Resort in St. Lucia in August.

So, I am excited to travel and just LIVE!!

Thanks to all of family, my friends, my CC family.....and most of all...My AWESOME God!

Patty Corcoran