Sunday, July 2, 2017

Thankful No Matter What Happens!

I returned from Houston on Wednesday after a scan, blood work, and a visit with Dr. Meric-Bernstam. I am pleased so say that I am still mostly stable with only a small amount of growth. The QIAC Report-which is part of the clinical trial report after a scan showing measurements of each growth and shrinkage on places. Then it is all added together, divided, and the report gives you the percentage of growth or shrinkage overall). I had 2% shrinkage overall and sometimes it's the small things you have to appreciate in life. Especially in the cancer world!

Our return home was quite the experience as we were suppose to fly out Tuesday evening with a layover in Dallas before arriving in St. Louis. Our flight from Hobby Airport in Houston was to depart at 6:30, but the departing plane was 45 minutes late before arriving at the gate. After boarding, the pilot informed us we would need to fly down to San Antonio before our stop in Dallas/Ft. Worth due to weather. This meant additional time and we are already running late. So, as we arrived in Dallas/F.W., (about 4 people needing to catch the flight to St. Louis), we promptly ran to the gate and the plane we were to be on was already leaving. This was about 8:30 p.m. and I pretty much knew we were there for the night! And...we were! Since our delays were weather related, Southwest said it was not their fault but gave us a list of discounted hotels. I was tired, hungry, and ready to punch someone in the face. But, I remembered praying to God that morning that I knew we were coming in to St. Louis later than normal and wouldn't get home until 1 a.m. or so...and that if he could please direct us home safely, I would be so thankful. So, maybe he knew Pat needed rest and this was His way of getting us home His time, not ours!! God has given me one of the best husbands a person could ask for. Pat is always beside me no matter what. There to go grab supper, get meds, check on me when I feel sicker than usual, ask the doctors all the right questions. I am blessed with one great man as my husband!!

I am having several side effects from the trial drug such as very dry eyes which was attended to by the opthomologist at MD Anderson. The doctor states my vision is slightly worse but not enough to have my glasses updated. He also approved the eye drops and nighttime eye ointment that my local Pharmacist Brycen Short helped me choose. I knew they needed to be preservative free but there are several that have alcohol in them...which dry the eyes! I also had a sonogram of the eyes to make sure I had no fluid buildup behind the eyes which is somewhat common on this trial drug. No fluid! I also have dry skin, dry corners of my mouth, toenails that are cut back halfway as they are lifting from the bed-not to mention three that totally fell off. My fingernails have not fallen off but they don't look the best either. My feet are dry as are the tips of my fingers. My nose is very dry on the inside so I have the humidifier by my bed for bedtime. The inside of my mouth gets so dry at times that I might wake up in the middle of the night and my tongue is stuck to the roof of my mouth. I literally have to sneak my finger on top of my tongue the carefully pry it off, then gulp some water with my eyes half shut. Yip, these are just a few of the side effects of the INCB 054838-101 trial.
My labs look pretty good and were not a worry with Dr. Meric-Bernstam. My CA 19-9 is within range at 26.5. My liver enzymes are AST 34, ALT 49, and the Alk Phos was 308. The ALT and AST are within normal range but the Alk Phos is somewhat high. People with cholangio know what this all means or maybe a dr or I am putting this out there for them more than anyone else. WBC is within range at 4.7 but platelets are dipping in the low range just barely at 127,000. My platelets fluctuate quite frequently so not too worrisome at this point. Phosphorus is 2.5 (for those on my trial this is especially informative). I am somewhat nauseous lately and I have lost about 5 pounds because of it. So, I have started drinking protein shakes with banana and peanut butter in them to halt the weight loss. I have to remind myself, anytime I have a scan means several hours without eating...and after a scan, I am usually nauseous due to the contrast I drink. Thus, causing some weight loss that I can usually make up within a weeks time.

So, after arriving home Wednesday afternoon, I felt good until Thursday about noon. I just had no energy. Friday came and I just didn't feel so hot. I finally checked my temperature at 4 p.m. and I had a 100.8 fever which came down with 400mg of Ibuprophen. Saturday was no better with a slight belly ache and just no energy. At 3 pm, I took my temp and it was already at 99.9.  Not an alarming fever but when you have cancer, every little thing is of concern. Today, I felt pretty good and actually picked up the house, cleaned the bathroom, mopped the kitchen, cleaned off the counter tops, and vacuumed some areas. I still have not been outside since Thursday afternoon....maybe tomorrow.
Whether I caught a bug at MD Anderson or in the airport, that's what I am chalking it up as. It's not quite 4 and if the fever starts again, I might call my local doctor tomorrow.
When I come down with these small bugs or whatever they might be, it scares me. It makes me wonder that even though the doctors think I am doing alright, is this the beginning of the end. I HAVE lived longer than what most people can even dream with CC. And, I am blessed. I do not know the plans God has for me, but He is right beside me every single day. I am very thankful.

Before leaving for Houston, my sister-in-law Sheila Stoltz, my cousin Amelia Lydle and I took a girls trip to Siesta Keys, Florida for a week. The beach always make things better...or atleast for the week. I enjoyed good company, good food, good spirits-kidding, and a little shopping. Our weather was spot on even though there was the tropical storm Cindy lurking in other parts of Florida and Gulf Shores. The day we flew home, there was a BIG whale that washed up on shore. I didn't see it but I sure hope it was back in the water with help from shore patrol & rescue. I am thankful I was able to go on this trip, and it makes me realize I still have a lot of living to do. Pat and I have no plans for a trip anytime soon...except those trips to good old Houston! But, I truly believe I wouldn't be alive without my doctors at MD Anderson and most of all, God!

An update on the CURE article! Pictures have been taken, the article has been approved by all parties involved, and the magazine about cholangiocarcinoma and an interview with a couple of doctors (none being mine which is a little disappointing) and myself are complete. The magazine with this article will be in a SPECIAL EDITION of CURE magazine that will come out in Mid-August. You will be able to read it online or try getting your hands on a magazine somewhere. I have about 10 magazines come my way for family from the staff at CURE. I know the photographer took well over 200 photos of me at my home, and although I approved the article, I have no idea what the finished product will look like. Maybe I can add the link to the article once it is out here on my blog. I was disappointed I couldn't mention my doctors or have a family photo. Nope, it's all about the patient and making people aware of the rare cancer and its symptoms!

Have a GREAT July 4th!! Be safe!