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!!!!


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 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 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!



Wednesday, March 18, 2015


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 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 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'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 just never know. So treat them all with kindness!
God Bless~~


Sunday, March 15, 2015

Day 5 of clinical trial

I thought I'd give a short update of how I am feeling, side effects so far, etc.
I am going 100 miles an hour it seems. Linda and I did some damage at Target yesterday for the Egg Hunt we have every year with the grandkids. We ate lunch out, hit a local farmers market where most stuff was organic. And hit a few more shops.  Had a 3 oz. piece of cooked steak last night (brought them from Hartrich's back home).

I am feeling great. I am not sleeping quite as well but I  think that is partly due to drinking 128 oz. of water a day. I am up atleast once during the night. I had diarrhea 4 X yesterday which wasn't convenient  on a shopping day but I think maybe it was the first side effect of the drug on day 4. If it starts today, I'll just take a handy dandy pill and put a stop to it. I have ordered a book about phosphates and how much is in a cup of this and that. It's a 450 page book so it should cover a lot of the foods I am eating. Thanks to Ally Gruenner I met at MD Anderson, who is a week ahead of me in the trial, she recommended the book after seeing the dietitian at MDA. It should be here this week. It's a used book so I'm recycling! ;-)

I am excited to go home. I will be home from the 1st to the 7th in Olney. IF... IF ...IF the NEW "Irene Goes To The Beach" book is here, I'll have a book signing somewhere in Olney. That would be exciting and you could all come see me and get your book all in one trip!! ;-)  We are hoping the book is back from the printers but it's going to be close!

We're headed to Bruce and Deb Schonert's today for a cookout. The weather is not the best and jackets have been worn more days than not!!  Lots of rain...very little sun. But, I am alive and flowers are blooming and even though the sun doesn't shine, we try and make the best of each new day!

Like I said, people are asking how I am feeling on the trial. Nothing to complain about yet........I'll keep marching!!

Love and hugs,

Tuesday, March 10, 2015

Yes......I BELIEVE!!

I believe I once again had God standing right beside me today. If you have ever read the first few months of my blog, you will read that I was laying on the bed resting one day (at Mayo Clinic at the beginning of this cancer journey and God touched my right hand (like He grazed over it). I laid there and I heard Him say "Do not be afraid, I am right here beside you."
As we were going to MDA today, I was worrying about the echo and vision test. This voice was in my head and I knew I needed a nudge to keep my faith and that He is always right beside me.

After finding out I had passed the tests...and my phosphate dropped .4 more points (that's a good thing)....God is SO good!!  All the, calls.....thoughts....they all help keep me grounded and surrounded by God's love. God is always with me....sometimes I just get lost in worry instead of just trusting in Him! It's so much easier to just let God take the wheel!!

After leaving MDA, Pat and I had lunch at Pappa's BBQ, then went to the Japanese Gardens we have been watching them build since last fall. It was unbelievable. There is an outdoor amphitheatre, gardens of all kinds, statues of people I mostly didn't know :-) , bikes you could rent and ride around this huge park, we are for sure going back....soon!!!  On our way home, we were at a stop light and Katy Perry's "Roar" song came on. It was the song for last years Relay for Life, Pat looked at me and smiled...and I smiled back. If that's not a God wink...well...IT JUST IS!

Linda and I went to work out when we got home and after 25 minutes on the elliptical, we were leaving and I dared Linda to jump in the pool. Do a plunge to celebrate me getting in this trial. YIP...we did it. It was less than 55 degrees out when we did it and the pool was cold...COLD!  But it felt good!!

Back to the trial. As I have said before, we will stay in Texas probably until mid April. Then be back for two days in May. After that, we will travel monthly to Houston for a checkup and bloodwork....every two months I will get a CAT scan.  There has been several good reports from patients in this phase two trial. One person saw 23% shrinkage in their tumor after 2 months on the trial. Not just stability which most of us CC patients are thrilled with but SHRINKAGE!  I feel good about this trial and I also feel God is with me every step of the way.

The diet is really a nuisance but I am happy to follow it if it will help me stay in the trial. I have to really monitor the phosphates in my diet. No milk, cheese, bread (with wheat flour), no nuts. IF you look at labels, almost everything has phosphates.....I will just have them in light moderation.  I will get an eye vision test and dilation of my eyes almost every time I go for a checkup.   The good thing is there are no infusions or needles. I will take a pill for 21 days and then take a week off. Simple...right?  I will also take the pill 2-3 times daily to help aid in controlling my phosphate level.

Tomorrow is my first day that I swallow that gray pill. The pill I pray will make huge strides for all CC patients. It might not be the cure-all but it might be big steps toward a's a wait and see kind of game.

Pray for stability and no side effects as I start this trial. There seems to not be many side effects. Maybe hair loss but not for most patients. If I lose it, I'll be a Tony Adams look alike.....again! He's kinda the dark...when his head glows.  I love that guy and he knows it!!!!!!

I'll close for now......thanks for listening to my ramblings. I hope I can sleep tonight as I am still over the moon about getting on this trial!!

God is Good ALL the time!!  ALL the time, God is GOOD!   ~~Amen!


Sunday, March 8, 2015

One week down!

Yes, one week down and I passed the phosphate serum test after being pumped full of fluids. It took three sticks to get a vein and two hours to get the fluids into me. Then off to sit in a room of 80 people ( 40 of those 80 need blood drawn). This goes on all day....every day!

Saturday, we were off to the Houston Rodeo and to see Alan Jackson. It was a much needed relaxing and fun day (thanks to Deb & Bruce Schonert for the invite!). After 4 out of 5 days at MD Anderson...we were ready to just breathe!! More pics are on my Facebook page of the rodeo. MD Anderson was a sponsor evidently by one of the pics you see here. Glad I had my camera as I am pretty proud MD Anderson who just NEVER gives up on a person with cancer. IF you have cancer.....and think your time is coming to an end....get to Houston.....and do it before it's too late or too advanced. Even if your dr says it's too late, MDA could totally be able to have something to turn your cancer around and find a cure for you.  AND even if one doctor tells you nothing can be done....another can cure you. NEVER GIVE UP!          N.E.V.E.R.!

 I did meet up with a CC friend who is on the trial I am on. She was back for her first scan since being on the drugs.  She was basically only on the drug a month out of 2 months due to problems with phosphate levels being elevated. She was given a great report that in just that little of time, one tumor was shrinking and the rest were stable.

I am ready for the next week to begin. Appointments start on Tuesday and continue Wednesday and Thursday. I see an opthomologist and get an echo cardiogram on Tuesday, blood work  Wednesday and Thursday. I need to pass the eye exam and the echo to get on the clinical trial. This trial is not offered in Illinois at Crossroads Cancer Center. But, I also feel I'd be dead if I would not have came to MDA.  Dr. Javle is leading this trial and it is giving much hope so far.

Please keep me in your prayers that all tests go fine and we can get this trial started. No big plans this week in the social matter. Maybe a's still chilly and raining all day today plus the same yuck tomorrow. By the weekend, I am hoping for 70+ degree weather!

Linda (the gal we are staying with) made some yummy cabbage soup that we are eating on (not Pat). I am downing water like a drunk drinks beer on a 110 degree day! ;-)  I am also learning that phosphates are just about in everything that tastes good. It's something I am slowly transitioning into when I go to the store. I pick up a lot of stuff and after reading the label, 70% goes back on the shelf! BUT, if it keeps me on this trial....I'll eat what it takes to keep my phosphate level in check! NO WHINING...right?!!!  My faith says to be grateful for where I am RIGHT NOW. It may not be where I'd like to be but my life/health is...what it is. I thank God for every day I wake up. I thank Him for my family that I miss already! I am blessed with the most knowledgeable doctors in the U.S. and I believe God has led me there. I am grateful for friends....for the sun, the rain....for every season. I believe you can choose to have seasons in your life full of faith, love, peace, thankfulness, giving, and trust. OR you can choose to have seasons in your life full of pity, poor me, hate, spiteful, sadness, and despair. I choose the first and I know God would not be right beside me if I didn't believe this is His will for all of us! Have a great week and may you make the best of your 'seasons'!!

Hugs and I'll post the fastest I can if I get into the trial!!  Stay posted for updates.

Hugs and peace!!

That's the best place for cancer patients in the world!! Just ask me...I'll tell you!!  ;-)
Danna Grisso and I. Danna is in the same clinical trial that I will hopefully be in.

Danna and her sister having lunch with Pat & I.

Looks like Pat is getting ready to give his two cents.

Pat & I with Deb and Bruce Schonert. Going to the Rodeeeooo!!

Thursday, March 5, 2015

I Said...... "I'M WHAT???"

Bloodwork is being a little bit of a booger as my phosphate serum is .1 from being able to be in the trial. 3 weeks ago when I was was a whole point within range. But on Monday is was .2 from being within range so we are moving in the right direction. Dr. Javle told me to drink LOTS of water and come back the next day for blood work. It did go down .1 but I need it to go down another .1 to be in the trial. I am eating super healthy and watching for anything with phosphates in the ingredients....or high phosphate foods in general.

There was also a problem with the urine sample I gave them on Monday. It shows I am pregnant. I just laughed at Dr. Javle and discussed measures were taken along time ago to stop that from happening. He insisted we do a blood test on Wednesday (just to clear it up that I am not pregnant at age 50) and they called back this am saying it is still positive. I joked with the dr that THAT is why my belly is so big!" He didn't say anything...he just grinned. He is such a caring, gentle man. I am blessed to have one of the most knowledgeable doctors for CC. Anyway, back to the pregnancy test, (I know a lot of you are laughing your "arses" off...go ahead, SO DID I)!!! I also had the CT scan and it shows nothing to be concerned about-no baby!! Sometimes, Dr. Javle says this happens because of the tumor messing up your body/blood somehow. He has saw this before but it doesn't happen a lot.  We will proceed with the trial once/if we get my phosphate serum down. I will go to MD Anderson tomorrow at 7 am for I..V. fluids and see if we can lower it that way. Right after the fluids, I will have it tested again. Hopefully, it will lower that  .1% that we need and it's one step closer to starting the trial. I will maybe have Friday off as my eye appt. has been moved to next week. even think about a child at my age makes me want to hurl! I just laughed at the dr and said..."No possible...NOT funny...Not happening!"

It is one crazy, busy ride (traffic wise) from Tomball to MD Anderson. Just for toll fees and parking, it's $15.50 or more a day that we travel to MD Anderson.

Pat and I got a copy of the CT scan I had on Monday and my tumor is now 8.2  by 8.5 cm. When we started it was like 11 by 10 cm. One thing amazing to me is that the tumor has totally occluded the middle hepatic vein so it is now all draining via the right hepatic vein. Amazing that it just re-routes and finds another way.

We are headed to the rodeo Saturday with Bruce and Deb Schonert.. Gonna see us some horses, cows, and cowboys....and probably some wanna be cowboys, too. We will also see Alan Jackson in concert. Should be a nice time except the weather is calling for a high of like 48 and chance of rain. Lots of stuff is indoors so it's all good!!  Deb and I made an IKEA trip today and Pat said "No thank you" to that trip.  Linda (the friend)who we are staying with will be home sometime today. We have not seen her since we got here Sunday night....but we are entertaining her dog and holding down the fort.

It's just a waiting game for now....Tests tomorrow after IV's. Next week I should know by Wednesday if I am allowed to enter the trial (based on my phosphate serum level).  I am ready to start the trial as a handful have reported good to great results so far. Only one person has been terminated from the trial. Not just stability BUT shrinkage and nothing new developing. Stable is good, shrinkage is great, and just killing it all would be a dream we hope to find out about with this trial.

I have said it many, many, MANY times. LIFE is all about time.  I will be patient as this journey may be a curvy and twisty road....but I will keep the faith that God is beside me and everything will fall into place.

Prayers are much appreciated and cards are also like getting a dozen roses.  They make my day...that one card with a note inside is like keeping my land line to my family...and my friends.

On a different note, the book I wrote and illustrated has been approved and is being sent to the printer. Then, they will send a proof of a book back for us to "ok" and then we will be anxiously waiting to start selling those hardback books!! Once we have a picture of the front copy, I will post it or one of my girls will.  It is just as beautiful as I wanted it to look. Courtney at Printforce did a super-duper job with the graphics...font...EVERYTHING about it looks great!!!!  All proceeds benefit our ACS Relay for Life Team and the Cholangiocarcinoma Foundation.

God has been so good to me...blessed me with quality time with mt family, and has strengthened my faith and made me realize life isn't really LIFE unless God is in it-FRONT and CENTER! And for that, I thank you, God!


Monday, March 2, 2015

The First Day of the Pre-Clinicl Trial Journey

We had a the worst drive to Houston to date. We woke up in Illinois with close to 6 extra  inches of snow on top of what we had. We drove 30 mph all the way to Salem...then 40-45 on I 57 all the way to Marion, Illinois. It put us at least 2 hours behind the already long 14-15 hour drive.

It's Monday morning and I have blood work at 12:45 at MD Anderson...then start the CT prep at 2:20 (you drink a lot of the nastiest tasting chalky pasty stuff I have ever had in my drink a little here...wait a bit...drink more, etc........but I can do it...because I AM STRONG)! Then we move to the scan room scheduled for 4:20.

Tuesday....I see Dr. Javle (who is the doctor ahead of the trial) at 2 p.m., and then I have an echo cardiogram at 3 p.m.

Wednesday & Thursday, I am appointments! But it's like 45 degrees down maybe a movie is in order OR  IKEA!!!!!   Maybe a visit to the Morris' family...

Friday.....I have an opthamology appointment as this trial is watched cautiously as it could cause problems with the eyes and even cause blindness. It has not happened to anyone but if I start to get blurred vision, I could be "CHOPPED!!"  :-(

I have to pass all the above tests before I can enter the trial ( So....if my heart has a problem, we will look for a different trial....or figure out a new "detour" but I have faith I will be ok.

Next week, if approved, I will have blood work on March 11th & 12th. This is the week I will start the clinical trial beginning with a pill you take for 21 days and then you are off the pill for a week. I will also take a pill to keep my phosphate level in check. There has been a little bit of problem with patient's levels getting too high so the dose is lowered...and if that doesn't work, they take you off of the pill and maybe give you a break for a week or two before putting you back on it.  I will go back on March 18th, 25th, 31st and April 8th for blood testing for the trial. This is how they will track our phosphate levels. During this time frame, I will stay here in Texas close to MD Anderson.

 I will be on a very strict diet. No more chocolate peanut butter cups from Roll With It :-( more wheat products, milk products, chocolate, etc. Basically a gluten free, soy or rice milk only, chicken, steak, lots of fruits and veggies.  Thank goodness I have been "filled in" about stores like Sprouts, Trader Joe's, Whole Foods, and even Walmart has a lot of organic, gluten free stuff. Also some Mexican grocery store that has awesome veggies at good prices. We'll have time to start it, ask questions, and even see a nutrition specialist at MD Anderson if I choose to do so.

 I will come home for a month before returning May 6th for blood work and to see the dr.  There will be appointments added into all of the above dates but for now, this is all I know about. Probably lots of vision checks will be added and visits with Dr. J, too.

We are staying in Tomball, Texas but it is just as crazy busy as Houston. I actually feel like I AM still in Houston. It will be a bit of a drive into MD Anderson but we are staying with Linda Burgener (a native of my hometown and whom I have known forever) who is gone on business right now so all we have for company is her dog, Blondie Kate. She's a hoot so far!!

I'll keep you all posted as much as possible. The trial MAY cause fatigue, slight nausea, and maybe some hair loss. Everyone is different so I will meet it head on WHEN and IF it happens to me!!

Feel free to send cards, letters, etc. to us at Patty Corcoran  c/o Linda Burgener at 11740 Northpointe Blvd., Apartment 2803, Tomball, Texas  77377.

Prayers are needed all the time.

God Bless~~you and me!