Life is just too good!!

I seem to be just chugging along right now. I have been watching grandkids a lot lately, landscaped the front of Leslie & Rhett's house this week. Hottest week of the year....or so it felt!! I had lunch with The Lawrence County ERBA girls before the big heating assistance starts on Tuesday.  I plan to volunteer in the Richland County ERBA office by answering the phone on Wednesday if possible. I  get chemo on Tuesday....WOOPIE!

Jennifer, my oldest daughter, along with her husband Bart...are due in about 3 weeks. Oh, I just can't hardly wait. It's like new parents faces even change after having a baby....the joy it brings to them. Jenn will have to lock Bart out of the house just so she can hold the baby....he just loves babies. He will be such a great father, and Jenn a great momma. Please pray for an easy delivery and healthy baby.

Pat is gearing up for a hunting trip to Wyoming in about a month. The week with him gone will be nice (although, yes I will miss him) but I can stay at Jenn's and hold the baby ALL DAY if they will let me. Or babysit for another grandchild. Do whatever the day brings forth for me.

As I said, not a lot to report as far as my health. Yes, I still get chemo every two weeks like clockwork....and I might have a day I feel a little yucky....but not enough to get me down. Just a veg out kind of day. My counts are good and I just praise and thank God daily for my good health!!
I go back to Houston October 15-18.....and I again ask for prayers.

Last week at church, Father Jerry had the "Anointing of the Sick" and I, of course, go up to be anointed. After we left church, I told Pat I always feel like everyone is staring at me. He said, "Honey, they are not staring AT YOU, they are praying for you!" It was like hitting me on top of my head with a skillet. I had never looked at it like that although Father Jerry asks the crowd to pray for me.  I have been praying a lot for healing of Father Jerry as he is having a lung problem. Please pray for my priest....he has helped me so much with the words he speaks. 

On Pam Kunklier's last post, she mentioned her daughter and son in law were going to be in a Neon Vibe 5K. I googled it and it looked like so much fun. A portion of the proceeds go to a charity. I have contacted them and I am to get a live call on Monday or Tuesday to discuss having one in Olney. It is at night and it is glow in the dark color they put on you (a lot like The Color Blaze that I was in this summer) only this one is at night and they also have black lights that make the neon color even glow more and lots of loud music along the way and water guns with neon glow in the dark water. Maybe even some strobe lights. I just feel like I need to be donating time to help other people.......a lot of the proceeds from the races of The Neon Vibe goes to The Ronald McDonald Charities. I think this means the money would go to St. Louis as this is where children from our area go for medical help. And I do know more than a couple of children who go there....I will keep you all posted on this.

My class reunion is tonight. 30 years...........I have never been to one of my class reunions and I wait until I am terminally ill to go. Oh what the heck! I won't be the 110 lb, 5 foot 8 inch girl strutting the halls of ERHS that I once was....and a lot of people will probably not recognize me. I am quite heavier...still 5 foot 8 inches :-).......and of course cancer changes your looks a little. Then there are the decisions of what to wear....which wig...fluffy or fancy???? Oh, decisions... decisions!!!
I will post pics later of a few class reunion moments.

There are a few things I know for sure, no matter who I see tonight, I know myself. I know God. I know I am happy in my life. I am happy in my marriage. I don't live beyond my means. I am happy with my kids and grandchildren (and proud of all 6 of our kids). If your thinking 6???  I can't forget Kate or Tom (Pat's kids)....Kate is so great to ask if she can cook me something....empty the dishwasher...or just be company to me as Pat. I have no wants in life and I am so happy.......except for this thing called intra hepatic cholangiocarcinoma. BILE DUCT CANCER!!! Just that one little thing. But it's a BIGGIE!  I think if I wasn't so freaking happy, this cancer wouldn't hurt my heart so hard. If I didn't love my whole family and friends, it wouldn't hurt so much!! 

It has been almost 6 weeks since Pat has had a cigarette and he is slowly learning to adapt to no nicotine. He still has A-FIB but it is better. He will be ok.....it's not like he doesn't have the best cardiologist at Prairie Heart Institute!! He is also learning just how far he can push his heart before he needs to slow down a bit and let the pitter patter calm down. People our age shouldn't have health problems like cancer and heart attacks....when we bought a lottery ticket...we must have bought one for The Loser Lottery instead of the Powerball Lottery!!  I don't buy lottery tickets so it must just be in the cards.

So, in closing, know I am chug~chugging along, just as Pat is also. I still ask for prayers that I remain stable....or my cancer marker drops so low, I can go off of chemo for awhile and give my organs a break from this poison. My last marker was 24.6. Preeetty good!


Hugs and much love goes out to all of you!!

Patty

Getting back to normal....or whatever you call my life.

 

Vacation was great but on the way home I started feeling bad with a stomach ache and I still have it occasionally. I also have had the scoots for almost two weeks. I have felt a little weak at times but kept plugging along. We returned home from vacation late Saturday night and I received chemo on Monday. It's been a busy two weeks for feeling not so well. But..here we go again with chemo on Monday.

 I called a man from a town nearby that was just diagnosed with liver cancer. He has stage 4 cancer and given 3 months to live. I wasn't going to call but something inside told me to call. He was scared about the chemo and the diagnosis. I hope I helped him...and he said he felt better after we talked. I believe he said he was 67. God be with him and his family right now. Please say an extra prayer for any and everyone with cancer.....it is not an easy journey...... EVER! PERIOD!

I logged on to the MD Anderson site which is a great site where I can see Dr notes, bills, radiology/PET scan reports, appointments and so on. I noticed on my appointments that after I see Dr. Javle, I have an appointment with a radiation doctor. They told me they have already decided against proton therapy so I hope this just isn't a visit to tell me it in person and charge me $600 to tell me that! I called and double checked that I still needed to keep that appointment and they said yes...so I am anxious to see what they have to say. I will keep you posted!!

As I was looking back over my cancer markers (which are a way of telling how active my cancer is) and when I first started it was 225. At my last visit at MD Anderson, it was 26. This means the cancer is not very active right now in my body. Not a bad thing at all!! 

I have been painting recently for a couple of fundraisers....it makes me feel good to help families or organizations raising money. The last one I painted will be auctioned tomorrow night. I hope it does ok......good luck to the Herman Family!!  God Bless little AJ and his parents!! Here is the painting I am donating.....now please remember I haven't had painting classes so no critiquing my effort to be an artist!!

I will close for now....just wanted to let you know I am still chugging along....breathing in this cool crisp air....waiting for my 4th grand baby in about 5 weeks. God bless you all and make sure you tell your loved ones what they mean to you. Hugs and Blessings!!

Patty Corcoran

Good news for a change....

So...today was chemo day at Crossroads Cancer Center. When I arrived, I had the usual blood work/then waiting for the lab work to be completed before I can see Dr. Dy. When Dr. Dy comes into my exam room, he says he has news...I told him I didn't want to hear it (I figured it was probably just more bad news). He said it started out as bad news as Medicare is refusing to pay for my Irinotican. It is not approved for Bile Duct/Gall Bladder cancer. BUT there is not an approved drug JUST FOR cholangiocarcinoma. Oncologists use whatever they think will work or has worked in the past for CC and I have been blessed to get a drug that has worked for over a year. It only works in 20% of patients with my RARE form of cancer.

Since Medicare was refusing to pay for my chemotherapy drug....Crossroads decided today at 8:30 to call CIGNA (my secondary insurance) to see if they were willing to step up and cover this chemo that is working beyond what it does for most CC patients. If they said no....I was going to be stuck with the chemo bill from July 15th....plus probably not be able to receive it anymore as it is more than our household income per month (by far). Well....they said YES! They were willing to step up and pay the chemo drug that our great Medicare program will not pay for. Medicare is willing to pay for me to see the dr...to get lab work done...even pay for hospital visits...but the chemotherapy that I am on is out the door for my type of cancer. Just great! A word of advice for people retiring....even if you are healthy...ALWAYS!!!!! ALWAYS have a secondary insurance as backup...especially if you have Medicare.

So....as I wrote the post yesterday evening on my blog which I was a little down when I wrote it....today reminded me to the core of my body that God is always with me...and an angel that worked tooth and nail at Crossroads Cancer Center for me to get my chemo approved by one of my insurance carriers. God is right beside me all the time.....and I feel he nudged me this morning as to say..."See, I am always right beside you....ALL THE TIME. I needed that this morning. Thank you God....thank you!

Hugs!
Patty

A call from MD Anderson.....

The week before leaving on vacation, I received a call from Dr. Javle.  Dr. Crain and Dr. Das, (both are radiation oncologists at MD Anderson) have decided the proton therapy would give too high a dose to the area they were wanting to radiate. They are still just too worried some radiation might make its way to my heart. THEN, I would not only have cancer...but a bad heart. It is still hard for me to sit here and write this for the world to see. I guess I kind of feel like it is a step backwards.....but maybe not if it would affect my heart. God is leading me on this journey and I totally trust this has all happened for a reason.  

I recently told my husband he needed to count the apples in his basket and not count the ones that had fallen out............now it is my turn to say it to myself. I have to remember the good things Dr. Javle told me.....that my tumor that they radiated a year ago is 50% less active than last year at this time. That alone is great news. My heart still feels heavy...I won't deny it.....but I must focus on the good and it's just a small bump in the road.

Pat has had a small heart attack a couple of weeks ago....he was ambulanced to Springfield at St. Johns Hospital for about 3-4 days and needed a stent for a 90% blockage. Of course, Dr. Goswami fixed him right up. We will see him again in 6 weeks.  Pat is trying to adjust to his meds but he also needs prayers for healing. He has high BP and is also having to deal with the anxiety of not smoking anymore. He is a strong man and I know he is going to be just fine!

This past week was our family vacation in Florida. The beach is what we all needed. 14 adults and 3 children.....memories to last a lifetime.  The men went fishing on a large boat (along with a few of the women) and brought back about 25 pounds of fish (already cleaned by the crew on the boat). Lotsa good shopping and I even got some Christmas shopping done.

I receive chemo tomorrow and it has been 3 weeks since my last dose. I usually get it every two weeks. I seem to have caught a small bug with stomach cramps and the scoots (some of the other gang had the same symptoms)...so let's pray my bloodwork is good enough to get the poison.

That's about it for now...not a lot to say....I pray for God's strength to lift me up out of this pity party I seem to be going thru right now. My faith is strong and I know God is beside me....this is just a small bump I will have to get over and move on to a more positive attitude. As I said, God is with me...all the time!!

Jenn's Baby Shower (l-r) Amy and Braeda Rusk, Jennifer Cummins~Zuber, Kate Corcoran, Patty, and Samantha Cummins

(L-R) Bart and Jenn  Zuber and baby Zuber in two months :-), Kate Corcoran, Mike Sullivan, McKenna, Rhett, Leslie, and Kinnick Funk, Bill and Debbie Weiler, Patty and Pat Corcoran, Samantha Cummins and Chris Foust, Amy, Braeda, and Rylan Rusk.

2 1/2 weeks in Houston....maybe....

I called Jackie at MD Anderson as Dr. Javle brought my case before a panel to see if they had any ideas up their sleeve. Dr. Crain, who is over the Proton Therapy Program has decided they can do proton therapy without getting too close to my heart. We first, have to get it approved by insurance, and I also want it to be after we are back from our family vacation. The part they want to radiate is the small tumor in the dome of the liver that they could not radiate before due to being too close to the heart.Last spring, they radiated the large tumor and it is now shrinking/less FDG avid. In some cases, I have read that proton therapy can give you a 5 year survival rate which is about the survival rate they give you with a resection. AND....maybe if it all worked perfectly as I could only hope, the clinical trials for my two mutations will be closer to being approved.....or another drug will come along before my kidneys or liver give out from all this radiation/poison being put into my body....and offer me MORE time. Life is all about TIME.

I have searched the internet but mostly just unsure what to do. I think I want to do this. It could give me a break from Chemo...maybe not. I would get 15 treatments in a row and then be done. This is the radiation that pinpoints the tumor and leaves all of the surrounding area and organs alone.  I would really like to find a family we could stay with or we might, as a last resort stay at the St. Dominique Village. It is basically a nursing home but has a few rooms for people being treated at M.D. Anderson. Not a lot of room to cook....so I don't know where we will stay.  A lot to ponder on before we even make the decision to take this route of treatment. Any suggestions or offers are appreciated if you have an extra room. We would be willing to buy our food and maybe pay some rent for staying in their house, shed, garage, doghouse....kidding.

My family and I have a lot to think about over the next couple of weeks....keep us in your prayers and ask God to lead us in the right direction with this big decision. Any of you cholangiocarcinoma patients who want to chime in here are more than welcome to....especially if you have had proton therapy.


Hugs and God Bless!!
Patty

The best news from Dr. Javle today!!

I was a little scared to go to M.D. Anderson because for the last (almost a year) I have been getting CT scans instead of PET scans because insurance said the PET was not necessary. Well, we got it all switched back to where they did a PET and chest X-rays this visit. A PET shows every spec of cancer or is a lot more detailed. We flew in to Houston on Tuesday late afternoon, had supper at the Rotary House, and early in the wee hours, Pat was sick. Throwing up, belly ache...you get the pic. He thought he had food poisoning but he came home tonight and is still feeling a little rough. Let's hope he keeps it to himself. It made for a long day Wednesday with my chest x-ray at 8 am and on to the PET from there which is about 2 1/2 hours. We spent the rest of the day in the hotel as Pat felt horrible. That night, we ordered pizza and wings, and just chilled. Thursday is the longest of time until my appt. at 10 am.....but it was 11:30 before we were talking to Dr. Javle. When he walked in, he asked how I was doing. I replied back to him that it was his job to tell me how I was doing. DRUM ROLL PLEASE: Dr. Javle states my large tumor is dying, it is over 50 percent less active than a year ago. This is the part that got radiated a year ago and they didn't think it worked. Well...it did and there is a decrease in the tumor size and FDG avidity. The maximum SUV within the tumor is 5.3 in the current scan and it previously measured 11.1!!!  Dr. Javle states my cancer is currently under control. I do have a small mass at the dome of the liver that is lighting up meaning it is cancerous although not very active. It has been there for over a year (approximately) but has not grown.  He will take my case to review this Tuesday with his peers and they will discuss my case and any suggestions to get rid of that little booger of a cancer mass....I am to call and talk to Dr. Javle or Jackie (his P.A.) on Wednesday. 
If you have been reading my blog since the beginning, I had radiation in Houston last spring for 28 days and it wasn't until I got home that it kicked me into next MONTH or maybe TWO MONTHS as far as no energy and just plum tired. So, after the radiation, I waited 6 weeks, then went back for a scan only to be told they didn't think it worked. Well, exactly where they radiated is where the tumor is dying. DR. Javle has already called Dr. Das who was my radiation oncologist, and he said the little mass is too close to the diaphragm and heart to do radiation again....so on to another plan, I hope.
When I heard all of this news, I just sat there.......I was good emotionally until I was telling my sister, Sarah the good news that I kinda choked up. Then I got my composure back together. Then, on the plane, I was thanking and praising God for ALL He has done for me and tears just came from nowhere. I turned my head so Pat couldn't see me but I was sobbing quietly while way up in the sky and gliding along like a bird dodging clouds. I have so much to thank God for...well...I have everything to be thankful for because of Him.  Thank you, thank you, thank you, Jesus!
I did meet another lady (probably 60) in the waiting room that also had intra hepatic cholangiocarcinoma....they told her she had less than 2 years to live. She has a different doctor. I am SO thankful I have the doctors I have. From local ones, to the ones in Springfield, Effingham, to the ones in Houston, they are all just great physicians. I am blessed! I am also blessed with the 100's of people, churches, friends that pray for me~thank you all and please keep praying. IT IS WORKING!
It's 11:03 and I am calling it a night. Just wanted to share the great news I had today. I couldn't have asked for much more. With this cancer, baby steps are even good...as sometimes you start taking steps backwards with this disease. I'm not going backwards if I can help it!!

HUGS and God Bless~~

Patty

Houston bound this week.....again!

Three months sure do pass quickly when there is so much going on in these summer months. But this week is the week I will fly to Texas (T-TH) for my PET scan and visit with Dr. Javle.  In months past, my insurance refused to let me have a PET scan and I was given no choice but to get chest x-rays and a CT scan. Dr. Dy in Effingham has already warned me to be a little careful as they will be comparing a CT scan from 3 months ago to a PET scan this week. The PET shows every little speck of anything suspicious but with a CT, it is not as clear or sophisticated. Dr. DY says they can compare the CT scan from 3 months ago to the CT part of the PET scan they do to make it more even in detail.  But maybe I need to know about every little speck to jump on it now and fight it like a dog.....I dunno. I guess I have wanted this PET for so long (that's what I started with until insurance denied paying for them) because it is more detailed but now that I have gotten it approved, I am kinda dreading it. But God is right beside me and I keep telling myself that. It calms my nerves down and off we will go tomorrow to Houston!!

I want to discuss with Dr. Javle, the clinical trial that is being done at all the major cancer centers that is specifically for my two cell mutations. The clinical trial kills the bad cells before they make cancer so my body would quit making the cancer cells as this chemo would kill them off quickly. IF it would work-GREAT. If it didn't work, my cancer could grow. But this trial is just for MY TWO MUTATIONS. That's it.........so if it kills off all the bad cells before they have a chance to make cancer cells, then maybe it would start working on my cancer cells in the tumor???  I am not sure of all this but this is the way I understand it.  I would like to ask Dr. Javle to print off (from PubMed) all the info so far on this trial. Both of my cancer drs' are BOTH impressed with the results thus far.....so my heartstrings are really telling me to take a chance here. I would have to drive to St. Louis ALOT as they are the closest one doing the clinical trial (this is about a 2 1/2 hour drive for me).....so it would make for some long days. But some long days in my life are better than no days left in my life.
My drs say that I will not die from my cancer in a round about way of saying it....instead, I will probably die of liver or kidney failure from all the poison (chemo) being pumped into me. My numbers are holding steady in that area but it could all change in a heartbeat. Only God knows that answer!!

So, as I start my week, I ask for prayers for a safe trip (no plane crashes please), I ask for good news that I am stable or the tumor is shrinking. I pray it has not traveled to other areas of my body.  And no matter what, I will come back, go on vacation in 3 weeks, and have the time of my life!  God is good and He is in charge. I will accept whatever the news is and move on to fight the next fight on this journey of cholangiocarcinoma.

Life is all about TIME, so get out there and enjoy it while you can!!

HUGS and More HUGS!!

Patty