Tuesday, June 30, 2015

"Why not me"

I was somewhat leary to trek our way to Houston, Texas this week as I felt like my insides had been put through a meat grinder...sort of.  Sunday, as I prayed and listened to the radio as Pat drove to Houston....something said to me "WHY NOT YOU??   (This was when I was pondering what I could do next to kill the cancer cells if the clinical trial pill had quit working.  WHY NOT ME to be the one to get some good news. WHY NOT ME to keep marching on in this fight! 
You see, when I got the devastating news that I had cancer, I didn't say "Why ME!"   I said "Why not me!!"  I didn't want to wish it on anyone else in the whole wide world....so I pledged to fight like a big girl and give it all I had.
My daily prayer as I was getting ready this morning was this:
My steadfast Love never ceases, My mercies never come to an end; they are new every morning. I know how you desperately want to believe this--and how much you are struggling to do so. Today, the only things that seem endless are your problems and your pain. But I am here--tenderly present--ready to help you get safely through this day. Believing this truth can make the difference between coping and giving up in despair.


God was with me ALL of today....and every day!  Sometimes when I start to worry....I pray...and I pray...and I pray some more. Thank you God for realizing that I needed You to hold me up...to know that I will continue marching!!


Dr. Javle said my scan report was the first thing he looked at this morning. It was the best thing he looked at this morning. He was so happy with my scan...as was everyone in the office. They all were excited when they saw me and knew of the great report Dr. Javle was anxiously awaiting to tell me. I had two very small tumors residual from the main big cholangiocarcinoma in my liver that are now gone. ERASED! No MORE!   Then there is the aortal lymph node that put me on this trial because it doubled over a two month period back in January. After being on the clinical trial for two months, it shrunk a lot and my cancer marker was 7.  Today my cancer marker is 5.8!!!   My platelets had been hanging around 109,00 to 118,000....today, they are 142,000!!   That is awesome news.  My liver is stable, my kidney function is good, and my blood work is mostly all in normal limits.


I met friends from Oregon for lunch on Monday.....and then saw them again as we were waiting for the trial drug. She asked me if I thought God had a hand in my good results....Oh yes...he has EVERYTHING to do with them!!  He calms me, He talks to me, He directs me when I am weak, He is right beside me all the time.  Yes, I have been blessed with GOOD dr's....but God is MY Great Physician!!


So, Pat and I are planning a 10-12 day trip to Venice, Italy and a cruise along the coast of Greece in August. I am going to live and try to enjoy every day of this life.


As Pat and I were eating lunch with the above mentioned friends, Lisa asked my husband, Pat how we deal with all of this cancer stuff. I will leave you with his response:


"None of us really know for sure from one day to the next. Since it is already past noon today, today is looking pretty good!! And tomorrow seems like a fair possibility. We just have thank God for every day that we wake up and make the best of that day! Isn't that all any of us really have?"


So be thankful for every day....just as I am thankful and blessed!!


Hugs,
Patty Corcoran



Friday, June 5, 2015

Stable and back on the trial.

I just returned from Texas Thursday evening and I am pretty "o.k." with the dr visit. My bloodwork was better and Creatinine was 1.00. Phosphate Serum was 3.5...so back on the trial I am.  I am on the 75 mg dose of the BGJ 398 drug. I will go to RMH (local hospital) and have my creatinine checked to make sure it hasn't raised. I do not need to be dealing with cancer and failing kidneys!!  Dr. Javle didn't say that he wanted me to do the extra labwork but I want to stay aware of where things stand. I will go off the drug if needed...if my levels are good, I will stay on the drug and march on. He is not too worried about my creatinine level...and says it is just borderline high for the trial. Novartis wouldn't want a patient on the trial to have kidneys that failed...now would they!

It was a good visit at MDA....the new haircut was a hit although my nurse (a man) came out twice to get me and I had my back to him and he finally called my name. The clinical trial nurse Ashley, who we all love is leaving MDA for a job elsewhere.  It was a good visit.....good labs, good EKG, Eye visit, I lost 4 pounds...somewhere-still looking for where it went!! ;-)  and a good visit with the good doctor J.  I asked him about Keytruda...a drug used for melanoma but has proven to work for other cancers. You have to have a certain PD-1 type of cell for this drug to work well on your tumor....but he is willing to call the drug company and maybe see about starting a trial for CC patients with this type of cell. 

As a new family travels to find hope at MD Anderson, there are others who end their battle of treatments at MD Anderson. I am not sure when my day will come and I am confident we will ALL be faced with death at some point in time. I am not ready to throw in the towel and I believe I have not finished Gods work here on earth. But when I feel he is knocking on my door, I will be there~~

I got a new bracelet today and I will leave you with what it says.

TRUST IS  LOT EASIER WHEN YOU QUIT WORRYING ABOUT WHAT COULD GO WRONG AND REMEMBER HOW MUCH LIFE YOU'RE GOING TO LIVE NO MATTER WHAT HAPPENS~~

NO MATTER WHAT HAPPENS!!

I will end tonight's blog post with a tribute to my mother-in-law. JoAnn Corcoran was truly a happy person who rarely saw a stranger. She was so very proud of her son, Pat and daughter, Lisa.  Tom and Kate (Pat's children) were the love of her life in years later....and she retired from being in the White county school district for many years. JoAnn...better know to her grandchildren and 5 great grandchildren as Mema was always there with a smile on her face. She loved the pictures Lisa would print off and were pasted all over the front of her refrigerator. As we pay tribute to her tomorrow, I can only hope people remember me as fondly as they will her. She will be missed~~

Hugs,
Patty

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