Wednesday, May 20, 2015

It's ok.....mostly

The fluids went in and the needle came out. Labs were drawn right in my private room....treated like a queen ;-).  Then...I waited for the results. They were not what I wanted to see's ok.
My creatinine was 1.05 and I needed to see it go to 1.00   It went UP instead of 1.1.  GEESH!

But, my BUN is standing strong so I truly believe it is just the clinical trial pill playing with my "innards". I will stay off the trial until I go back in the first weeks of June. I will have blood work again and it will all be good so I can get started on Cycle 4 of this trial. At the end of Cycle 4, I will have another scan to see where we are with this trial. If being off the trial a week early means my kidneys will not be damaged, then that's what needs to happen.

Being a lab rat is hard work...mentally more than anything.  You think you're doing everything right and drinking lots of water...eating the right foods. BUT, Dr. Javle says it's not me, it is all the poison that has been put in my body...especially Cisplatin (a chemo drug I was introduced to FIRST when I got this cancer) and the clinical trial drug I am on. So, we will give thanks for every good blood test and pray for fewer bad blood tests....but most of all, I pray for stability with the cancer and stability with my kidney function. I can't live without my kidneys so I am so happy to have Dr. Javle being so careful with them AND the drug company Novartis with strict guidelines on lab I don't lose my kidneys or eyesight or get a heart condition. They cover all the they should!! 

So, there you have it. I am not going to let it ruin my day. Nope, not one bit!  It is just meant to be. I will be back on the trial before you know it and reporting good news!!

Have a great Memorial Day Weekend. Be safe, drive sober, don't drink and drive. Call a friend~~


Update from my mini trip to Houston....

I flew into Hobby Airport Monday on a delayed flight (two hours late) but the Morris family was there to pick me up. We had a nice evening before getting up the next morning and at MD Anderson at 8 am for blood work. I was in to see Dr. Javle by 9. My labs were mostly good. Platelets were almost in normal range. All liver enzymes were good except the alk phosphate was a little elevated. White count was really good. BUN was great. But, the creatinine was 1.05 my clinical trial pill has to be stopped until the creatinine comes down. So....I am at RMH in ICU (only place they could find to put me with an open space) getting a litre of fluids over a 3 hour period. Dr. Javle thinks this will bring it down enough to resume the last week of this cycle (which ends Tuesday of next week).        
     So, as soon as I get all the fluids pumped into me, I will have labs drawn immediately. Results will be sent to Dr. Javle and Ashley (the clinical trial coordinator) and I can hopefully resume the meds. The creatinine just needs to go to 1.00.  I wanted to go to the chemo area to visit with the nurses(who also work in Effingham) and also visit with a new chemo patient to calm his nerves if I could. PLUS, I was looking forward to a free breakfast and lunch from the chemo program I helped get started!! BOO my luck!
     I leave Friday night/Saturday morning with my daughter Leslie and her husband Rhett and two kids (and my friend Debbie Weiler) to go to Alabama for a week. Pat is going on a hunting trip out west for a week.  I am looking forward to some time away not related to a hospital, do some swimming, pontooning, and meeting new friends of Leslie & Rhett's. And then, of course, spending time with two cute little grandkids.
     I will also honor all members of all the Armed Forces that have served, are serving, or have died for our freedom and our country. I hope to find a service to attend and maybe try to tell my oldest granddaughter how her great grandfather was in the service, her great uncle Larry, her cousins currently serving and one who served but just recently got out of the service. And about her Grandpa Pat who served in wars, and was in the National Guard for 19 1/2 years.
     I pray for a lot of aching hearts right now, so painful that I cannot even fathom of losing a person the way some of them have. I pray they somehow can forgive, find peace, and try to find comfort somehow in all the tragedies that have been like a domino effect in our community and surrounding county.
     When I was in Houston I met a new CC patient who is new to MD Anderson coming all the way from Oregon. She and her husband were quite nice although time is so short on my visits when it's a fly in and fly out (all within 18 hours) so not a lot of time to visit. I also heard someone holler my name as I got off the elevator and it was ANOTHER CC patient on the same trial as me. I realize I am just so so blessed to still be a patient with this terrible monster of a disease. To be able to carry on daily at a almost totally normal life. I thank God daily...and actually more than once a day! 

I will update and hopefully be able to say I am back on the clinical trial pill today. If does not mean I am off the trial...I will just have two out of the three weeks of a cycle done instead of getting the full 3 weeks in of the pills I take. I have definitely started losing my hair little by little. BUT, it you know know if it gets too thin, I'm not afraid of razors...I'll shave it off in a blink of an eye!  Saves on "getting ready" for my day...but I am not HOPING I have to shave my head.....just saying.

God bless you all and especially our military, cancer patients, MS patients, CP patients, I could go on and God bless the WHOLE USA!


Tuesday, May 5, 2015


     That's the amount of hits my blog has had....maybe just checking to see if I've blogged or seeing on Facebook that I've posted and then they read the post....either way, it keeps count of how many hits my blog had and all the different countries from around the globe that read my blog.

     Numbers.....when it comes to labwork, tumor sizes, cancer's all about numbers. Relay for Life, miles back and forth to's all about numbers. Maybe that's why it's one of the first things you learn as a child. 1...2....3!!!  My lab numbers today were some of the best they've ever been. If you are a cancer patient, you can say the CA 19-9 (for CC patients) doesn't mean much. BUT to me, it's a trending number that has continually went down when I am doing really well...and it has climbed when I had more active cancer dancing inside of me. CA 19-9 is 7.9.  Dr. Javle states it's probably lower than his or my husband's!!  They keep a chart of mine showing the ups and downs and this shows me it DOES mean something with my cancer. Maybe it has something to do with me having such a slow growing cancer.  The more aggressive ones seem to be on the higher side.
     The reason I was put on this clinical trial was because I had an aortal lymph node that was new but we wanted to stop it in it's track FAST. So, after weighing our options, we decided to try the BGJ398 trial that targets the FGFR2 mutation in my body. The aortal lymph node two months ago was 20mm x 16mm. After two cycles on the trial (and I had to stop the pill after 14 days due to my high phosphate level), today my aortal lymph node size was 13mm X 9mm.  Dr. Javle was ecstatic over the shrinkage. All other activity in my liver is growth. I asked about my liver and kidney function....Dr. J states it is all worries with them so far. My spleen is somewhat enlarged (and has been for over two or three years) so at this point, no worries!  IF it would continue to get more enlarged, they may do a spleenology procedure or something. It is enlarged because it is eating my platelets up hiding them in my spleen. My platelet count is not within normal limits BUT the number is not bad enough to worry about it at this time (they are hovering around 110,000). So...bottom line is.... the drug is working. I have hardly any side effects. The low phosphate diet is not that big of a's do-able. So, I will start on 75mg Wednesday and I know it will still be working inside my body. This seems to be where most people are at....some are even at 50 mg with stable reports.
     I met a lady that has had CC (in her mid to late 60's..I'd guess) and she has been seeing Dr. Javle for almost 6 years. She has been on this trial since December 2014. She is doing well and stable. I also visited with Vicki Davis who is a bright ray of sunshine.
     To sum the day up, I wasn't sure what the scan would show today. I had faith that no matter what, I would take it one day at a time. As I was being slowly moved into the dome for the CT scan, I thought to myself....."No matter what, God is with me"....and I also thought of what someone said to me at The Relay For Life Saturday night....all you need is faith the size of a mustard seed. I KNOW I have more faith than that, but the point is, He is with me, every minute of every day. God is with all of us, and some people may have a stronger faith than me...and I sometimes feel I am not worthy.....other people have this disease and a stronger faith, so why am I getting all this good news and they are not. I haven't figured all of that out, and I wish Father Jerry was still here to talk this over with. But I do know I am blessed, I am loved, and I am so thankful for God's love.
So, not only is my cholangiocarcinoma stable, I also have shrinkage in the nodule. That, my friends and family is one of the best reports since getting this cancer in Feb. of 2011!!
     I want to close with a few words of thanks for all the friends, family, and complete strangers who bought books from our Relay for Life team. People who supported our fundraisers, donated their time, donated cakes, supplies, in any way helped our team win FIRST in the most money raised for our team FOR THE SECOND YEAR IN A ROW!! Suntone Beach Survivors rocked it this year with a lot of sweat to win that trophy again this year and I thank you all!! 
     O.K., I am really going to close this time...after thanking God. How awesome it is that He reassures me that all I have to do is Be Still and Know that HE IS THERE!  I am so incredibly blessed with his love.  SO INCREDIBLY BLESSED~~

I will close with the MD Anderson's logo on r. J's computer's...with my new Tieks on. AND, one with my children's books where proceeds benefit the American Cancer Society and The Cholangiocarcinoma Foundation. We still have books if anyone needs one mailed.  I would love to put a picture of our Relay team but since half are missing, I won't.

Many hugs!!