Wednesday, October 31, 2012

Some updates.....

Our Christmas/Winter notecards will be ready Friday at Printforce so we will work frantically over the weekend to fill the bags and have them ready to take to all of the local banks, Town & Country Beauty Salon, or e~mail me at Local people know my number and our landline number is in the phone book. We will ship for a nominal fee (whatever it costs us). We will also be at The Holiday in Olney to sell them at their craft show on November 10th & 11th. We will also try to hit the Red Hill Craft Show with a booth....depending on booth price. ALL funds go to the local Walk & Roll of Richland County (American Cancer Society) and The Cholangiocarcinoma Foundation.

I have painted each and every card, and I hope people support our Relay for Life team. We have an Italian Beef Night (not sure of the date) but I will have large pictures of the "most sought after" You Are My Sunshine picture plus more to sell for a little more but I believe in keeping prices reasonable to sell more. IF someone wants a large print BEFORE Christmas (as a gift or something), get ahold of me and we will get it printed for you!!

I have my date to go to St.Louis to The Siteman Center to meet with Dr. Lockhart on November 12th. It is just to meet him, have a consultation, he will answer all our questions and see if I am even eligible. Lots of IFS and we will see. Keep you always!! They said the appointment will take about an hour.

What a mess the east coast has been left with. I pray that mostly they are safe as ANYTHING can be replaced....except a life! 

I had a bug all weekend and boy did I feel bad. I am on the upswing now but I get chemo again Monday so here we go again!! I think the more poison they put into me, the more tired I get.
If it were not for God, I'd have lost my Faith a long time ago!! Without my family.... I would starve. Secondly, they just come by to keep me company.

Braeda won 2nd place in the Trustbank Halloween Parade, and I walked in it with Amy. She was such a good scarecrow and didn't even fuss in the long walk to and from the parade.

Braeda the Scarecrow

How about that upcoming election....won't even go there as people who know me know I am a die hard_______ fan. Not even going to tell you!!  ;-)   I DO know I might have to move out of my house until my husband settles down a bit if the wrong party wins....oh really could get bad at our house.

Happy November to ALL of you. The month to give Thanks......have FAITH that all will be OK no matter what comes your way. God has a plan and we just gotta let Him take the wheel!!


Thursday, October 25, 2012

It's been awhile......

It seems forever since I have posted and I apologize. Between painting and playing with grandkids....I have 17 cards printed from the printer and are waiting on two more....then a few of us will pick the magic 15. I have had lots of people volunteer to help sell, help put them out at the banks they work our goal is to sell 150 sets. Thanks to ALL who buy, sell, or just help get the word out!! ALL proceeds to to our local Walk & Roll of Richland County.
Chemo is going pretty good and as long as I drink lots of water, I am not as tired at work. As long as I give myself the 3 Neupogen shots, my white count stays at a nice range. I am just at the 75% strength on my chemo and the dr is happy with it there. It is pretty mean stuff and he doesn't want me laid up after getting chemo for two weeks straight! I am still waiting on Barnes Jewish to get all my medical info together to get my name on the clinical trial list. We will not start the clinical trial until the dr's think it is time.... as long as my chemo is working...we will keep pushing it through my veins.
My dr did call Barnes to get onto them for not contacting me yet. He doesn't want them running out of the drug before I get a chance at it working on my cancer.
Things are pretty quiet at our house.....kinda scary.  Even though my energy level is better from  drinking so much water, I still go to sleep at 7 alot of nights and don't get up until 5-6 most mornings. I figure my body needs as much rest as it lets me sleep so I will let it be the cue to when my body needs some zzzzzzzzzz.
I started my Christmas shopping this week.....I am going to have to put some gasoline in my tank before I shop too much!!
As I close today, I truly am amazed at the picture God has painted outside with the foliage. Pat and I took a drive up by Palestine, Hutsonville,and Robinson last pretty out. I thank God for letting me remain on this earth to enjoy such wonders. I will keep pushing forward until God says the push is over. I always taught my girls to NEVER give why would I? God Bless you all this fall!!



Wednesday, October 10, 2012

Going naked to work!!

I mean without any hair, you silly people!! I wore my wig but my co workers wanted to see the "bald look". They decided I looked so good I should just forgo my wig for the day. I mustered up the courage and did it.

I received a call from the clinical trial nurse at Barnes Jewish. They are trying to gather my records just to get everything in order. Then they will have me to come for an appointment so I know everything I want or need to know about the trial. I DO know there is a waiting list so they want me to get on the list as soon as I am processed. The chemo I am on is working well so they have no plans to take me off of it right now.

Dr. Javle from MD Anderson also wanted to start me on IV fluids on the Wednesday, Thursday,& Friday after chemo on Monday as I was so tired on about Thursday to Saturday. I have talked them into letting me try to drink 80 oz. in fluids and maybe that will help with the fatigue.

Jenn is in the process of taking the first 15 Christmas cards to the printer to get them ready....I still have about 4 more to print this week and then we will whittle it down to the ones we like the best. Keep you posted on when they are ready!!

God has been with me and I just feel His presence more than ever. He is definitely guiding me on this journey and I am so thankful I have Him in my life!! As always, I thank you for ALL the prayers and cards I receive.

I will of course keep you updated on my clinical trial status but I am not looking for anything to happen anytime soon.

Saturday, October 6, 2012


My hair that is, silly!!   I went this am to get the bangs on my wig trimmed this morning in Vincennes, Indiana and when the lady saw the pathetic comb over of what was left of my hair (I had it covered with a beenie like hat), she said, "oh honey, I think we need to shave your hair off"....with a big swallow, I said "awe, why not"......then she got out the shrub trimmers and started trimming it off. From one ear to the other....I look like Telli Sevalis without the lollipop (for those of you who remember him...."who loves ya baby".   Pretty funny tv show I watched( in high school) BEFORE I got the monster in my belly.
 Oh boy.....the lady does one H of a job of making you feel BALD when she is done.  A very friendly lady and Leslie (my daughter) was going to do it but she went to a pumpkin patch. There will be days I wear the wig, days I go bald, and days I wear a beanie. For Halloween, I will have Jenn paint a pumpkin face on the back of my head.....just so no one tries to stuff a candle down my throat to make my eyes light up   :-)
Chemo is on Monday so we will discuss all new changes with Dr. Dy in Effingham. Dr. Javle suggests pumping a litre of fluid down me (thru an IV) 3 days in a row after chemo so I am not too should help. I have talked to someone that might own a company in Olney and they will come right to my house right after work and do it so I won't miss any work. How accommodating is that!!
That's it....I did it.  Got out my big girl panties and JUST DID IT!! No more hair and it feels sore a little which will pass. But I did it and I am proud to be bald. I had to resuscitate Fluffy.....she was dead on her wig stand but she likes my head.
God is life is good...and I praise Him for being there. I needed that lil' shove to get the scalping and it is now done and over. I thank God for all the good news my dr had for me and the new clinical trial I might join in time after my chemo starts to NOT work but right now it is stabilizing my cancer and I am thankful.
Thanks for all the prayers, cards, thoughts, and hugs!  They all mean the world to me!!

Thursday, October 4, 2012

No Disease Progression

We saw Dr. Javle at 9:05 a.m. and skipped seeing his P.A. altogether. The first thing out of his mouth was "the scan looks stable with no disease progression." Though this CT scan is less significant and detailed than a PET scan, everything looks okay. The CA19-9 tumor marker has decreased remarkably (I will post a graph tomorrow), and there is no change in the tumor's dimensions.

Mom and Dr. Javle today at her appointment at MD Anderson

Even more exciting, the results of genetic testing from a biopsy performed in March have been released. Mom has two genetic mutations causing her tumor. I will attempt to vaguely explain them, hopefully without losing your interest. :)

 The first is a FGFR2 mutation. It causes amplification, in which a specific gene is repeatedly copied. This is characteristic of most cancers.

The second is a PTEN mutation, in which the PTEN gene is lost. Loss of the PTEN gene can lead to uncontrolled cell growth and suppression of apoptosis (programmed cell death). In Mom, the mutation is occuring due to a G to A substitution. Notice in the photo below, G (guanine) should pair with C (cytosine), and T (tyrosine) should pair with A (adenine). However, in Mom's tumor, G is pairing with A. When a new pair is made, a new code is formed, and a new amino acid is produced.  PTEN mutations are rare in cholangiocarcinoma, occuring in only 9% of cases.
The good news, is that there are two drugs still in the clinical trial phase, but that have been approved by the FDA, that inhibit the PI3K/AKT/mTOR pathway which is activated by the FGFR2 and PTEN mutations.

Hopefully I haven't lost you! My biology degree has many benefits, including understanding this jargon.

For now, Mom will continue taking her current chemo medication, Irenotecan, at 75% of the recommended dosage, as it is apparently working well. When Irenotecan stops working, she will likely switch to one or both of the medications that are tailored to her mutations. She will probably go to St. Louis for treatment at Barnes-Jewish if she decides to participate in the clinical trial.

She has been feeling the most ill and tired on Thursday, after chemo on Monday. Dr. Javle recommends Mom get 1 Liter of  IV fluids on Wednesday, Thursday, and Friday after chemo to ease her symptoms on the worst days. Hopefully she can start that next week.

Mom and I in the garden feeling sweet relief after good news today.

Mom, Moh, and I before Moh gives us a ride back to Bush International Airport for our trip home.
He is a blessing and never fails to tell Mom to stop being negative and "think positive!"

That's it for now. Alarms are going off in Bush International Airport. Lights and alarms. It's INCREDIBLY hard to think. We're headed home!

Written/Posted by Jenn.

Wednesday, October 3, 2012

Denied (sorta)

Mom and I had an smooth and uneventful drive and flight from St. Louis to Houston. Moh has picked us up so frequently that he knows us and no longer stands with a 'CORCORAN' sign at baggage claim in Bush International Airport. We arrived at The Rotary House and had dinner at the restaurant here. Mom ate her last meal for 20 hours (chicken salad with oil & vinegar - very blah due to her supposed PET scan today). We were exhausted and in bed asleep before 9 p.m.

This morning was very early: Mom had a PET scan scheduled for 6 a.m. Or at least she did yesterday. After we walked a mile or so and through a 'restricted' area, we arrived at the PET desk at 5:45 a.m. and were told that her scan had been rescheduled for 12:30 p.m. this afternoon. Frustrated and tired, we retreated back to our room (and through the 'restricted' area again) to return to bed.. We (mostly me) slept until 9ish, and then went to the lab so Mom could have bloodwork performed.

At 12:15, we were back at the PET desk and were informed that Mom was not scheduled for a PET scan at all. She had been scheduled for a CT scan instead. We were dumbfounded. I called Dr. Javle's office and was told that Dr. Javle and his PA are not in the office today, and his scheduler was out to lunch until 1. So, we walked up to the appropriate floor and Mom drank the barrium to prep for her CT, while I went downstairs to sort out her changing appointments and scans.

After two hours of talking to everyone I could get on the phone and leaving messages for those that I couldn't, Dr. Javle's scheduler apologized for not calling to tell us that Mom's appointment was not at 6 a.m. (she thought Mom knew?!?), and Mom's "Patient Access Specialist" informed me that her secondary insurance had denied payment for this PET Scan. In turn, Dr. Javle changed the needed test to a CT scan of her head, abdomen, and pelvis. Mom's secondary insurance denied that, too. So she ended up having a CT scan of her abdomen.

Denial to pay for a PET scan happened in March, as well (unbeknownced to us), but Dr. Javle appealed it and it was approved. Obviously, he's more aware of the insurance workings than we are. He likely picks his battles and knows at which intervals a PET scan is more valuable than a CT scan. Interestingly enough, if Mom had only primary insurance (one type, not two) the PET scan would likely have been approved. I believe insurance will never stop baffling me - and I have been attempting to understand Mom and Pat's insurance for a long while now.

We were planning to go to the Rice Village to shop today, but Mom's appointment lasted until 3, and the barrium stuff she had to drink made her feel sick. So we've ordered pizza and are planning to stay in and watch the Presidential Debate tonight!  It's over 80 degrees and sunny in Houston, though we haven't been able to enjoy it much. Hopefully we will take a walk this evening in the gardens.

Mom's appointment with Dr. Javle is at 9 a.m. tomorrow morning, and Moh is picking us up at 10:45 to catch our 1:15 p.m. flight back to St. Louis. We will likely post when we get through security at the airport.

Keep sending your prayers/good thoughts & vibes Mom's way!

Written/Posted by Jenn.