Thankful No Matter What Occurs!

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I returned from Houston on Wednesday following a scan, blood operate, and a stop by with Dr. Meric-Bernstam. I am pleased so say that I am nonetheless largely steady with only a tiny quantity of development. The QIAC Report-which is aspect of the clinical trial report following a scan displaying measurements of each and every development and shrinkage on locations. Then it is all added with each other, divided, and the report gives you the percentage of development or shrinkage all round). I had two% shrinkage all round and often it is the tiny points you have to appreciate in life. In particular in the cancer globe!

Our return house was fairly the encounter as we have been suppose to fly out Tuesday evening with a layover in Dallas ahead of arriving in St. Louis. Our flight from Hobby Airport in Houston was to depart at six:30, but the departing plane was 45 minutes late ahead of arriving at the gate. Just after boarding, the pilot informed us we would require to fly down to San Antonio ahead of our quit in Dallas/Ft. Worth due to climate. This meant more time and we are currently operating late. So, as we arrived in Dallas/F.W., (about four persons needing to catch the flight to St. Louis), we promptly ran to the gate and the plane we have been to be on was currently leaving. This was about eight:30 p.m. and I fairly a lot knew we have been there for the evening! And…we have been! Considering that our delays have been climate connected, Southwest mentioned it was not their fault but gave us a list of discounted hotels. I was tired, hungry, and prepared to punch a person in the face. But, I remembered praying to God that morning that I knew we have been coming in to St. Louis later than standard and would not get house till 1 a.m. or so…and that if he could please direct us house safely, I would be so thankful. So, perhaps he knew Pat necessary rest and this was His way of acquiring us house safely…in His time, not ours!! God has provided me 1 of the ideal husbands a individual could ask for. Pat is generally beside me no matter what. There to go grab supper, get meds, verify on me when I really feel sicker than usual, ask the medical doctors all the appropriate queries. I am blessed with 1 excellent man as my husband!!

I am possessing various side effects from the trial drug such as incredibly dry eyes which was attended to by the opthomologist at MD Anderson. The doctor states my vision is slightly worse but not adequate to have my glasses updated. He also authorized the eye drops and nighttime eye ointment that my nearby Pharmacist Brycen Quick helped me opt for. I knew they necessary to be preservative free of charge but there are several that have alcohol in them…which dry the eyes! I also had a sonogram of the eyes to make confident I had no fluid buildup behind the eyes which is somewhat typical on this trial drug. No fluid! I also have dry skin, dry corners of my mouth, toenails that are reduce back halfway as they are lifting from the bed-not to mention 3 that completely fell off. My fingernails have not fallen off but they do not appear the ideal either. My feet are dry as are the ideas of my fingers. My nose is incredibly dry on the inside so I have the humidifier by my bed for bedtime. The inside of my mouth gets so dry at instances that I could wake up in the middle of the evening and my tongue is stuck to the roof of my mouth. I actually have to sneak my finger on leading of my tongue the very carefully pry it off, then gulp some water with my eyes half shut. Yip, these are just a couple of of the side effects of the INCB 054838-101 trial.
My labs appear fairly fantastic and have been not a be concerned with Dr. Meric-Bernstam. My CA 19-9 is inside variety at 26.five. My liver enzymes are AST 34, ALT 49, and the Alk Phos was 308. The ALT and AST are inside standard variety but the Alk Phos is somewhat higher. People today with cholangio know what this all suggests or perhaps a dr or nurse…so I am placing this out there for them extra than any individual else. WBC is inside variety at four.7 but platelets are dipping in the low variety just barely at 127,000. My platelets fluctuate fairly often so not also worrisome at this point. Phosphorus is two.five (for these on my trial this is specifically informative). I am somewhat nauseous lately and I have lost about five pounds mainly because of it. So, I have began 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 suggests various hours with out consuming…and following a scan, I am generally nauseous due to the contrast I drink. As a result, causing some weight loss that I can generally make up inside a weeks time.

So, following arriving house Wednesday afternoon, I felt good until Thursday about noon. I just had no power. Friday came and I just did not really feel so hot. I ultimately checked my temperature at four p.m. and I had a 100.eight fever which came down with 400mg of Ibuprophen. Saturday was no superior with a slight belly ache and just no power. At three pm, I took my temp and it was currently at 99.9.  Not an alarming fever but when you have cancer, every single tiny point is of concern. Right now, I felt fairly fantastic and in fact picked up the home, cleaned the bathroom, mopped the kitchen, cleaned off the counter tops, and vacuumed some locations. I nonetheless have not been outdoors given that Thursday afternoon….perhaps tomorrow.
Whether or not I caught a bug at MD Anderson or in the airport, that is what I am chalking it up as. It really is not fairly four and if the fever begins once more, I could call my nearby doctor tomorrow.
When I come down with these tiny bugs or what ever they could be, it scares me. It tends to make me wonder that even even though the medical doctors feel I am undertaking alright, is this the starting of the finish. I HAVE lived longer than what most persons 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 single day. I am thankful…so incredibly thankful.

Just 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 generally make points superior…or atleast for the week. I enjoyed fantastic organization, fantastic meals, fantastic spirits-kidding, and a tiny purchasing. Our climate was spot on even even though there was the tropical storm Cindy lurking in other components of Florida and Gulf Shores. The day we flew house, there was a Huge whale that washed up on shore. I did not see it but I confident hope it was back in the water with aid from shore patrol &amp rescue. I am thankful I was in a position to go on this trip, and it tends to make me understand I nonetheless have a lot of living to do. Pat and I have no plans for a trip anytime quickly…except these trips to fantastic old Houston! But, I really think I would not be alive with out my medical doctors at MD Anderson and most of all, God!

An update on the Remedy report! Photographs have been taken, the report has been authorized by all parties involved, and the magazine about cholangiocarcinoma and an interview with a couple of medical doctors (none getting mine which is a tiny disappointing) and myself are comprehensive. The magazine with this report will be in a Unique EDITION of Remedy magazine that will come out in Mid-August. You will be in a position to study it on the web or attempt acquiring your hands on a magazine someplace. I have about 10 magazines come my way for loved ones from the employees at Remedy. I know the photographer took effectively more than 200 photographs of me at my house, and even though I authorized the report, I have no notion what the completed item will appear like. Possibly I can add the hyperlink to the report as soon as it is out right here on my weblog. I was disappointed I could not mention my medical doctors or have a loved ones photo. Nope, it is all about the patient and creating persons conscious of the uncommon cancer and its symptoms!

Have a Fantastic July 4th!! Be secure!

Hugs,
Patty

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