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 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 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~~

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 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!!


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!