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

Tuesday, March 24, 2015

Day 14 if Clinical Trail BGJ398

Yes, today was day 14 of my trial. I was back at MD Anderson at 7:30 for blood work to check my phosphorus level. I have drank approximately 128 ounces of water a day and followed a pretty daggone strict diet with my new book. BUT, it wasn't enough to tackle the high phosphate which went up today instead of down to 7.2.  It was 6.9 last week and Dr. Javle states it is just the toxicity of the drug causing it to rise. He states he is sure I have been walking a straight line and doing everything correct, but we will just up the dose of the phosphorus lowing pill and stop my clinical trial pill for 2 days. Then, I will go into MD Anderson and receive fluids before blood work. Dr. J thinks this will be enough to lower it and let me continue on  with the clinical trial pill. To say I was beating myself up would be an understatement. Every person on the trial has had to lower their dose due to high phosphorus except one person. This is where we are the lab rats and they are looking for the safe and effective dosage. The ONLY good thing about it being high (the phosphorus) is he said they have found those with the high phosphorus level have responded well when it came to scan time...so let's pray that is the case for me. Dr. J also said I should cut back on my water some so I will gladly do that!!

I am still exercising about 5 out of 7 days and plan to be in a SCOPE 5K on Saturday with Linda Burgener (the friend we are staying with). It is for colorectal awareness. I am running/walking in Honor of Pam Runyon. I asked Dr J if I am exercising too much and he states I should not stop. So....I will march on.

I was so bummed about my phosphate (still am) but I just have to pull up my big girl panties and FIGHT LIKE A GIRL!!! 

The sun was shining so beautiful yesterday...I exercised for about 40 minutes then decided to clean out the car, and wash it as they have a car care center where you can pull under an awning and there are hoses at each corner of your car. Boy it looks pretty now!  Then we decided to sit in the sun a bit. It was about 78 degrees and I even swam some laps in the pool. Tomorrow.....I have no appointment and I bet I find the pool again! :-)

I told myself on the drive home today that I have to remember to count my basket as half full instead of half empty. I am still in the trial...I feel like a don't have cancer....I have no pain which is unusual considering I am into my 5th year with this cancer....My only side effect from the drug has mostly stopped.....I AM ALIVE!!!!  So, I just thank God for answering so many prayers since I started this journey. I thank God for all my prayer warriors....my beautiful cards I am receiving in the mail. I have kept every card since I received the news that I had cancer and I smile each time I see them on the corner of my desk at home.....for I am blessed.

Our big vendor show is this Saturday at the St. Joe Multi Purpose Room. I urge all people around my hometown or anyone across the U.S. who wants to know more, to message me or one of my girls. A lot of the vendors donate some or all of their commission from the party so it's a sweet deal for our Relay For Life team!! 

There were two typo errors when the book "Irene Goes to the Beach" came back from the printer (the one we approve so they can hit the PRINT button and start making them). So, today I believe Samantha made them aware of the corrections and printing should start VERY SOON!   IF they are here by Easter weekend, I will have a book signing. Stay tuned for updates.

I will update Thursday evening on lab results. Ashley the clinical trial nurse, believes my numbers will be down enough to get me started back on the pill. So, I ask for prayers that this does happen. That my labs remain stable overall.

In closing, I just want you all to remember...when you think your day has been so terrible, ask yourself....Is your basket of apples really half empty OR is it REALLY half full?  When things seem so tough and you just feel really down, ask God to help find your way to Him .....and He will!

Peace~

Hugs!
Patty




Wednesday, March 18, 2015

Adjustments......

Week one of Clinical Trail Protocol 2014-0372 better known as BGJ398 is done. There were some topsy~turvy turns and I am afraid I'm going to shake some people up in the next few days (I kinda feel like Jennifer Cummins-Zuber when she was in Springfield with Pat and I when I had blood clots and then a brain bleed.....if I think something is off, I'm not afraid to say something. Especially when they start a domino effect with the same person who keeps making the mistakes or not double checking their work). Jenn was always right there to set them straight....make sure my meds were in my room at the right times, etc.
So, the day before the clinical trial, I met with Dr. Javle and Ashley who is the Clinical Trial Nurse. We discussed side effects, what other people were experiencing, good reports of people on the drug, etc. I asked Dr. J to order my Anti XA to check my blood consistency so I don't get blood clots or a brain bleed again...and he asked Ashley to get this on my schedule. Dr. J asked Ashley to fax the RX scripts up to the pharmacy where I could then go and pick them up. When Pat and I went to get the RX, there were two bottles of pills, but they were 100 mg of the clinical trial drug and 25 mg of the clinical trial drug. You start off with 125 mg of the drug and hope you can stay on that strength although most  patients cannot. It has to do with high phosphate levels from the drugs therefore you also go on a low phosphate diet.  Little did I know I should have also received a script for a pill I was to take three times a day with each meal and it helps the extra phosphate bind to the medicine and it goes through the digestive tract instead of your kidneys and detours the long term damage that COULD happen over time with the drug...along with blindness, heart problems...no big thing, right?
So, I followed a very strict diet when I started the trial and did lots of label reading, research, etc. and drank up to 128 oz. of water a day. I cut out coffee, sugar mostly, chocolate, dairy, anything with additives, sodium, etc. I could even tell I'd lost a few pounds. The goal is to keep your phosphate level between the normal range of 2.5 to 4.5. Mine came in at a whopping 6.9!  Dr, Javle explained that mine was high and they were considering upping the dosage of the phosphate lowering drug. I said, "WHAT PHOSPHORUS LOWERING DRUG?" He said, "The one you've been taking with each meal."  "UMMM, I have no such medicine" was my next response. He looked at the clinical trial nurse who jumped right into her files and proclaimed sternly she had sent the RX to the pharmacy right along with the clinical trial pill script. When she pulled out the proof that she had faxed it....it said NOT RECEIVED. Meaning the pharmacy didn't get the script. (sigh)  Then, Dr. Javle said he was quite impressed with it only being that high and he was certain as soon as I started taking the drugs, my phosphate serum would take a sharp downturn. I think Ashley might have gotten a talk.  I can't imagine what my phosphate level would have been if I wouldn't have been so cautious with the diet.
Two separate days, (back to the Anti XA) I was suppose to have it drawn. One time, I had other orders for bloodwork but NOT the Anti XA because Ashley didn't send it. The second time (today-day 7 of the drugs), she didn't put a note it had to be drawn at exactly the time I drilled into their heads (4 hours after I inject the Lovenox (blood thinner) to get the correct reading of my blood) and they drew the blood at 10 am instead of 12:30 when it needed to be drawn. The phlebotomist just thought she was doing me a favor since I look like I have lots of Dracula bites up and down my arms from all the pokes....and some bad bruises from some I.V. sticks. I told her it wasn't her fault. She said it should have had a special note stating it had to be drawn at the specific required time on the schedule.  So, I did get the Anti XA drawn today...just 2 1/2 hours too early. (sigh again)  I also volunteered to give Novartis (drug company who has produced this drug) a vile of blood once a week before I take the pill and two hours after...Ashley forgot to have me sign the permission slip for this and so the first time they went to do it....the consent wasn't there and I laid in a bed for an hour and a half until they could get her to answer her phone and get the paper to me. I was honked in a big way that day.
As I was leaving, a volunteer heard me talking to the phlebotomist and asked if she could help me with anything. I just told her it had not been the best week and I was a little disappointed with the clinical trial nurse. She pushed for more info and said I really needed to talk to my social worker. I told her I thought if we could get the Anti XA test right, then things would be all worked out. I told her I didn't have a social worker and she informed me I did. Maybe I just haven't needed one...I dunno.  So, this volunteer is getting ahold of my social worker who will call me and talk to me more. Now I wish I'd just have let it go and talked to Dr. J privately. (3rd sigh)  So, now my clinical trial nurse who will/could get a good talking to, will be real sweet to me from here on out.. right? NOT!

I have so enjoyed getting to know Ally (another girl that is one week ahead of me on the trial). She is so sweet and has shared info with me I wasn't told and I have shared info with her. She is a ray of sunshine from Bentonville, Arkansas. I briefly saw Danna Grisso who is on the trial, and then a different CC patient, Jeff, who  needed a ride south of Texas about an hour (two hours for Pat and I since we are an hour north of Houston) but I felt there have been so many people help me, that we needed to offer a ride. Yip...kind of like picking up a hitch hiker again but we thought we were pretty safe. I didn't have any appointments that day so why not! He was great and we just had a good visit on the ride to south Texas.

My I.V. nurse who gave me fluids to lower the phosphate level before your blood work was from Farina, Illinois. Her family still lives there. That was pretty cool.  I have talked to two separate individuals on the phone this week (one from Boise, Idaho and one from Boca Raton, Florida-ten miles from the beach. That's very important info to me-the beach part!! ;-) to talk to them about options for CC, different dr's to check out, they wanted info about my clinical trial, or  just people wanting a little hope with this rare cancer. Sometimes another CC patient gives them my name or they must get it from my blog or something. I don't ask where they got it, I just try and help them.

I am feeling quite well other than some loose scoots 3 of the 7 days. I finally took a pill one day to stop them. I went to the Houston Rockets game with Bruce and Deb Schonert Tuesday night. It was fantastic! Your heart just wanted to jump out of your chest with the excitement of all the people around you. It was a close game until the last 4 minutes when the Rockets rocked and pulled ahead for the win!!  Thanks Bruce and Deb for a wonderful night!

I received 12 cards today!!  You, my friends & family, do not have a clue how much they raise me up!! Each message...handwritten or just the words inside the card mean so much. I thank each and every one of you!! 

Tomorrow, no appointments unless I have to drive into MD Anderson for my Anti XA.....GRRR!  It's suppose to be about the nicest day we've had in a while as it has rained more than the normal amount down here. I have plans to wash the car, clean it out, then sit by the pool and read a book. Catch some sun and enjoy the warmth of the day with an expected high of 78.

No word on the children's book yet.....still at the printers. You will hear a LOUD squeal when it arrives in Illinois (even if I'm in Texas...you'll hear me squeal! ;-) .  

God bless you, God bless me, and God bless and raise up everyone going through family sicknesses, loss, homelessness, all the tragedies that could happen to a person...you just never know. So treat them all with kindness!
God Bless~~

Patty