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 BUT...it's ok.
My creatinine was 1.05 and I needed to see it go to 1.00   It went UP instead of down....to 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 numbers....so I don't lose my kidneys or eyesight or get a heart condition. They cover all the bases....as 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~~

Patty 

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 ...so 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 not...it 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 me...you 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 on...so God bless the WHOLE USA!

Hugs,
Patty~~

Tuesday, May 5, 2015

121,603

     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 markers...it's all about numbers. Relay for Life, miles back and forth to Texas....it'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. Today....DRUMROLL.....my 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 stable..no growth. I asked about my liver and kidney function....Dr. J states it is all well...no 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 nuisance.....it'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!!
Patty


Thursday, April 23, 2015

Being protected....being thankful!

I flew to Houston on Monday with no problems at all...flying out of St. Louis. Roselyn was there to pick me up swiftly and we had a wonderful evening with grilled rack of lamb, green beans-fresh, rice, and pickles.  Dessert was lumquats (a cousin to Kumquats) and they are a bit tart and a bit sweet. Only 4 grams of phosphorus in each one. They were yummy!! The next morning, my alarm failed to go off at 6 and I was woke up at 6:22 by Roselyn. I had 38 minutes to shower and get presentable for a very long day at MD Anderson. I had lots of children's books stashed in my purse along with my computer. I had my food book in case I saw Vicki Davis for her to keep it for a week and read over it....and my schedule and plane ticket.  It took us about 20 minutes to find the Mays building at MD Anderson as it all looks different when you are used to going to a parking garage and entering the Cancer Center from there. I get to the infusion area to receive fluids and I then realized I had left my purse in Roselyn's van. I had no phone, no money, no children's books to sell, and no number to call Roselyn when I was done with everything at MD Anderson so she could pick me up and take me to the airport. I was FRANTIC. I was scared....I had messed up in a very big way. As I sat in my room being pumped full of saline, the nurse came in and saw the big raindrop sized tears in my eyes. She asked me what was wrong and the lump in my throat kept me from answering.  After I got a little composure back, I told her my situation. I asked her to see if she could get me a phone book. I prayed..I said the Lord's Prayer, I prayed again. I told God I needed His help and NOW!  The nurse came back only to tell me they didn't have a phone book. She said they would google his name as they have a home phone. She comes back only to say there are lots of people with their name....so I told her his occupation and BOOM....she had their home phone number. I called 25 times and it was busy every time. The nurse came back in and saw I was still upset and she left. She went to the front desk and called the number and Roselyn answered. The whole time, I am realizing that although I have my airline ticket, my drivers license is in my wallet in her van. I felt like a mouse in a round barn looking for the corner! I WAS FRANTIC! I WAS STUPID! HOW COULD I BE SO RECKLESS!!  The nurse reappears, smiles at me with the big raindrop tears in my eyes, and says "Honey, I have talked with Mrs. M and she will be right here and bring your purse to you.  I cry harder.....realizing God had just made me realize I had to trust with all my heart and all would be ok. And it was. God is with me EVERY MINUTE of EVERY DAY! I have never went to my appointments alone but it was just a day of bloodwork and see Dr. Javle. No big deal...right?  I made a bloody mess....and that nurse didn't have to do everything she did to help solve the problem. But she did!!  God plants people in your life...the family I stayed with, the nurse who helped locate the family to retrieve my purse with all my important stuff in it.....it was all ok.......
As I laid in bed finishing the infusion, I thanked God for everything that was resolved that day. I thanked Him for getting me through THAT bump in my day......It was just a lot of stress too early in the morning.
I got my bloodwork done, then on to wait to see Dr. Javle. Ron, Dr. Javle's nurse came and sat down by me in the waiting room and asked what was wrong. I said nothing but he could see I was not myself. I stated it had been a hard day but I would be ok.  I had lost 4 pounds in two weeks....I was truly keeping count of every phosphate I put into my mouth! I was pretty sure my numbers would be good as I had walked a straight line as far as the phosphate diet. WRONG!  My phosphate was 7.....that means they took me off the trial the last week of cycle two. Some of my other numbers were a bit high also. With BIG puddles of tears, my doctor enters the room about this time. I told him I just didn't get it. I had been SO good. The gentle giant (Dr. Javle) convincingly tried to tell me it wasn't me that was the problem and he was sure I had followed the diet to a T.  That's why it's a clinical trial, they are trying to figure out the right dosage at a safe level.  I will go back to MD Anderson on May 4-7 for a CT scan and bloodwork -which went way back down last cycle and all my bloodwork looked super. I will be bumped down to the 75 mg of the clinical trial pill and see if that's the right "fit" for me. As Dr. Javle says, I am not defeated, I am doing what's best for my body by lowering the dosage and doing less harm to my organs. When I do return, I look for my bloodwork to be much better and my mind and body are ready to keep fighting. To keep thanking God for giving me the strength to "Get back up" whenever I felt so defeated that day. That devil was not going to ruin my day!!  I was picked up by Roselyn and taken to the airport. I ate a late lunch and waited for my flight back to St. Louis. I was never so happy to see my Buick pull up at the airport. On the 2 1/2 hour ride back to Suntone Beach, I thanked God many times over for being with me that day. For the nurse who went an extra mile to get my phone, wallet, and I.D. back into my possession. For a doctor who calmed me down and took the extra time to make sure I was ok before leaving.
As I sat in the airport eating my late lunch, I saw so many people rushing about to catch a plane to wherever their life was taking them. Again, I thanked God for allowing me to be entering my 5th year with this cancer. To be fighting for my life but feeling pretty darned good. I am blessed in SO many ways.
The next week and a half are filled with lots of Relay For Life events. We have our great Italian Beef Fundraiser at the VFW this Friday night from 4-8 and we will also have desserts available for a small price. I will be signing/selling books until we run out BUT we have more coming on Monday or Tuesday (next week) so we will get you one and FAST since the Relay is May 2nd. It's time to sell books FAST and deliver them, mail them, whatever it takes to get the books sold!!
I am feeling well and look forward to seeing lots of people in the next couple of weeks at Relay events. Please support our fundraisers in Richland County. Please pray for added patience in my life, for peace, calmness, and gratitude for the wonderful life I live. I am blessed and I thank God every night as I lay my head on my pillow and every morning I wake up for the new day ahead of me.
Yes, I am blessed........thank you God!
Feeling thankful,
Patty

Sunday, April 12, 2015

Alot going on in the next two weeks!

It's Sunday, I have made a Whole Foods run, packed my bags, and will go to Deb & Bruce Schonert's for a sweet treat later this evening. Tomorrow, I have an appointment in the Mays building with a hematologist doctor about my blood clotting and basically someone that knows how important it is to thread the fine needle of keeping my blood not to thick and not too thin (I check in for paperwork at 7:30 and appointment is at 8 am). I will then head for the Land of Lincoln!!   I look forward to being home, selling lots of Italian Beef, my children's book, and having a GREAT day the at the Relay for Life on May 2nd. 

I will fly (solo) back down to Texas on April 20th and have appointments the morning of the 21st and fly back to Illinois the afternoon of the 21st. Fast trip!!  And I will be treated to some time with the Morris family in Houston who will pick me up from the airport, spend the evening/night with them, and also get me to my appointments, then back to the airport. Whew!! Where would I be without all of my Houston friends!!

Then my next trip to Texas will be May 4-6 or so. This SHOULD be when I get my first scan although it's not made it's way on my appointment list yet. So, basically the day after the Relay, I will leave at 4 in the morning and head for Houston. I pray this trial will show me stable or maybe change for the good.

I have met new CC patients in the past 5 weeks....Jeff Shackman, Tabytha Armstong, Matthew and MaryAnne Hassan, Sarah and Andy Macias, Ally Gruenner, Vicki Davis (who lives by the ocean!! :-)).  MaryAnne Hassan had appr. 24% shrinkage after being on this clinical trial 2 months. WOWZER!  That is amazing results for CC!! I could spend days with almost every person I met to share information and connect.  I also met Danna Grisso......but we have met before....she is such a kind person.  4 of the above people are on the same trial as me....so that's 5 of the 55 supposedly allowed on this trial led by Dr. Javle.  A clinical trial is way more involved than I realized but it does taper down on visits over time...so by June, I should only be going once a month. WHEW~!

I have to give a big shout, hug, smooch, and THANK YOU to our host family (Linda Burgener and her dog, Blondie Kate). I went to school with Linda and she snatched us right up when she found out we were coming to Houston. We picked a bad time to come as all hotels were booked from the Houston Rodeo so the drive to MD Anderson is the only thing not so good about staying with Linda. We had a blast at Linda's and the pool was a perk, for sure!  Linda also liked us being there as she could travel and be gone for 3-4 days and know that we wouldn't cook her Mexican Chihuahua dog....for the most part! :-)

In closing, I just ask you to support our upcoming fundraiser's and come out to the Relay on May 2. I was on a Relay team when my children went to St. Joe Catholic School....then it kind of fizzled for some reason I don't remember.  But I actually Paid It Forward BEFORE I got cancer.......and now, I feel it is even more important to raise money.  The American Cancer Society is getting ready or may have already started to build a hotel in Houston by the Texas Medical Center. Guess what you have to pay to stay there? NOTHING!  There are several hotels owned by the American Cancer Society that are free to cancer patients and their family........did you know they will pay for your stay if you have an extended stay and need help paying for our hotel expense...all you pay is $12 per day or nothing if you cannot afford to pay. So....for all of you people who think this money just goes to pay people's salary....they do way more than that! I actually called and received this info because I wanted to know what did some of the money go towards. SO....all of you cancer patients, even if it's just for a couple of days, if you need help with your hotel stay, the ACS would prefer if you could call atleast two weeks in advance and they will get you a hotel with a shuttle to take back and forth to your medical center. How about that!  No...I have not utilized this because I have friends in Texas and I will leave that opening for someone who really needs help and does not have friends in the town they may have to travel to for cancer treatments.

I will close for now.....I am thankful for all the messages, cards, people who came to our multi vendor party, my family in Illinois and my family in Houston. I am thankful God is center stage in my life. I believe He puts people in our life for a reason. All the people who are donating to the RMH program....I am SO BLESSED that I could go on and on.

God is good....ALL the time. ALL the time, God is good~~

Hugs,
Patty Corcoran

Tuesday, April 7, 2015

Back in Texas....and it's a good day!!

Pat and I traveled home with Linda Burgener (who we are staying with in Tomball, Texas) before Easter and started home Easter afternoon. Linda's mom, Margaret also traveled to Texas with us and is staying with Bruce and Deb Schonert. It was two days of traveling but we arrived safely back in Tomball Monday afternoon. Tuesday morning was an early one that had us leaving the apartment at 6:50 for an 8:30 bloodwork appointment. Traffic was horrific!!!  We pulled into the parking garage at 8:33. It doesn't matter if you are late for bloodwork......you just get there as soon as you can and they get you in pretty quick half of the time. ;-)  Then on to see a new CC fighter..Tabytha Armstrong and also there was Jeff Shuckman. We had a nice visit...and exchanged stories....  there are a couple of other CC patients here this week I hope to meet also.
Then I was off to see Dr. Javle at 10:30. I was called back within 10 minutes (record time since MD stands for MOST of the DAY Anderson.  My labwork is great. Phosphorus Serum was 4 which is a good number to start at when starting Cycle 2 tomorrow. Cycle two will take a month and then I get my first scan to see how wonderful this drug is working inside my body.  I will travel home about Monday, after I see an internal medicine dr (specializing in hematology) who will keep an eye on my blood thinner levels. Then I am back here in two weeks for bloodwork ...then back home for two weeks. This goes on for 3 months then down to once a month in Texas.
I made an apple pie today and plan to have a piece before I start taking my clinical trial pills tomorrow. Back to a more strict food plan for the next 3 weeks.
So many people stated how lucky I am over the Easter weekend....NO, I am BLESSED! I saw so many good friends when I was home....all my children and grandchildren. My mom had a really bad cold so I did not see her so that was a bummer but I am going to be home and she will be better so I can see her soon! 
We are sticking in an extra Italian Beef fundraiser at the VFW the last Friday in April. I hope we can have a full house and run out of food!!  My book should be here ANY day and I will have a book signing somewhere.....and be delivering and selling books like crazy!!  Please support our fundraisers if possible and remember our booth at the Relay For Life on May 2nd. Yes, I will be there!!
I am going to end this post by just asking each and every one of you to be thankful for every day!  Your life might not be going as you have always planned it.....but neither has mine. Make the best of every day....don't judge when YOU don't want to be judged. Quit whining over the small stuff and give thanks to God for the good things in your life!

God is Good ALL the time!!

Hugs,
Patty

Thursday, March 26, 2015

Another curve??

I wanted to update on my bloodwork that I had today. My phosphate is down to 5.9 compared to 7.2 two days ago. I have not taken the clinical trial pill for two days so my phosphate would drop. But that's not all that dropped. My white blood count was sitting pretty at 5 two days ago and today it is 3.7......I am not REALLY REALLY concerned about it and I figure it is partly due to the clinical drug. I am healthy, exercising, and signed up for the 5 K Run/Walk on Saturday. My platelets are also slowly declining which is of more concern to me than anything else on my labs....on March 17th,  they were 122, March 24 they where 105. TODAY, they are 96. (96,000 for you biology people). So, the slow decline had me marching up to the 7th floor at MD Anderson to talk with Dr. Javle's nurse to see if I should be resting, eating spinach and red meat.....and if I should cancel the 5K on Saturday. Ron (Dr.Javle's nurse) said to run the 5K if I felt like it and to do whatever I wanted. Nothing I eat or do physically will not affect the lab numbers. The 5K usually has 800 to 900 people in it....OH MY!  It is downtown on the MD Anderson campus and blocks around MD Anderson. It is also put on by MDA and there's a goody bag involved. I love free stuff so I plan to be there!

I suppose it is just a waiting game to see when the clinical trial nurse will call and let me start taking the pill again. I am hoping SOON but it could be next week when I get blood work done and my labs should look better also. Not one person on this trial has had a totally smooth ride on it. Trying to get the correct dosage is what they are trying to figure out right now. From early scans of other patients on this trial, it is doing some good things for patients!!  I have to keep my faith that it will be just as good for me!  If not, hey, I'll just back up and take a different curve!! Try something different~~

Pat and I are going to West Texas tomorrow....not as far as Fredericksburg (sorry, Julie) as it's like 4 1/2 hours one way. Brenham, Tx is just about an hour or so away and is also known for their bluebonnets. Camera is charged and I am excited to go tomorrow. It is suppose to be sunny, warm, and just a perfect day for some diner eating at a local mom and pop restaurant and lots of bluebonnets. I have been warned to watch for snakes and ants.....two of my most detestable creatures!

I received a really nice goody box from Samantha and Chris (daughter and son-in-law) today. It had some snacks, a Yeti mug to keep my water cold (a huge SCORE for me as Samantha knows I love her Yeti mug), a couple of sweet letters from Sam and Chris and one from Katie Fey. Last but not least.... included in with the box of goodies was a pregnancy test!  Funny ....real funny!  When I first came down for the trial, my urine came back as positive for being pregnant, then my blood test for being pregnant came back positive. Funny girls!!!

I will pray for better test results next week that my white count and platelets are climbing in the right direction. I pray for the different people I have talked to on the phone this week fighting this monster. They are looking for direction, inspiration, knowledge, anything to help in this fight against CC!!
I pray the doctors can figure out a dosage that I can continue to keep taking and not have these stop and go periods in the trial. BUT, they are normal and I was warned by people on the trial. I thought I was going to be better than them, I was going to follow a diet to a T, drink so much water my phosphate levels wouldn't rise......but, I am not the problem. This is a clinical trial in phase 2 and this is where they find out the best and most effective dosage without killing the people on the trial. With that being said, I will pray they find the best dosage fast and let more people on the trial as it does seem to be showing good results in some of the people I have talked to.

In less than a week, I will be on my way home to Illinois.  I cannot wait to see my momma, my girls, my sisters, grandkids, friends, and just good ol' Olney!  Easter afternoon, we will start back to Houston, Texas with Linda Burgener.

I see Dr. Javle before leaving for Illinois, and will update as soon as I can. God Bless and Have a Blessed Easter!!!!

Hugs!!
Patty