Friday, December 28, 2012

Looking at a calm beginning in 2013....

After getting chemo on Dec. 17th, I no more got in my car and spit up a little blood. I called Dr. Dy and asked if he thought a scope was a good idea. He agreed and set up an appointment for me to see Dr. Sutherlin on Jan.2. Dr. Dy said I had a puss pocket/sore in the very back of my throat and put me on an antibiotic.Guess what? I have had no blood since starting the antibiotic on the 17th!! I am still going to see Dr. Sutherlin to make sure all is ok down the "pipes". Pat thinks I probably had a sore and it was bleeding. I wasn't coughing up blood....just kinda belching it from my throat. But the no blood reoccurance since the 17th has calmed me down ALOT!

The "drum roll" for my Houston trip is just around the corner. IF my current chemo regimen has quit working, there are clinical trials going on right now for my specific  mutations. One has had phenominal results thus far according to Dr. Dy. When MD Anderson did my large needle liver biopsy last March, one purpose was to find out what mutations my cells were producing. It will determine which clinical trial is best for me. Luckily, I am only producing two mutations so there are specific clinical trials for BOTH of them going on RIGHT now!!. When you have a chemo drug specifically for your mutation, the chance of it working is alot higher than just a chemo drug for say.....bladder cancer...or breast cancer. IF....IF...IF  ...I would find out my chemo is no longer working, we would travel to St. Louis as the Siteman Center is also part of these clinical trials. Two of the drugs are pill forms and the third is chemo that has to be infused each week. Oh how nice it would be to just pop a pill instead of sitting for 6-7 hours being pumped full of pre-meds and poison. But even though they are promising....I would still be a lab rat (without hair).
One day at a time....just one day at a time. God has guided me on this Journey so far and I am not afraid of what's ahead.....just anxious.

Bill & Debbie Weiler are taking the trip with us this time and we are car pooling it to Houston for a change of scenery. We are stopping at some plantation, maybe stopping in San Antonio....OR going to New Orleans for the day. Deb & I will for sure be in the trunk before hitting Texas as we tend to mock our husband's (in a fun kind of way,of course), make fun or scream due to their driving,or just giggle at their conversations that are way to deep for long car rides. An adventure it will be!!!

This chemo has officially took all my eyelashes, almost all my eyebrows, and well....the hair on my head had been gone for awhile. I officially look like a tv cancer patient. The only thing missing is I am not jaundiced. I thank the good Lord I still have no pain. I do look seven months....ok 8 months pregnant due to the tumor....   Cancer isn't for sissies so all you sissies better start praying real hard you don't get it!! It's not even for tough girls but I am NOT going to let it keep me at home, in bed, or depressed...I thank God each morning for my awakening and I thank Him each night for the day I just experienced.

My next chemo is New Year's Eve....like I had big plans anyway....and that will be my last treatment before Houston.

I ask for mountain tops full of prayers that my scan shows no growth and stability is the good word on that day!! If it is not stable, I STILL ask for prayers to help guide me on this journey.

Here are a few Christmas pics to share with you. I feel like my followers ARE part of my family. Happy New Year to ALL of you!!

Hugs and God Bless!!



Braeda, Kinnick, and part of Amy




These stockings were made by my mother from an old quilt I had.





These stockings were made with my baby blanket that my Grandmother Stoltz made for me. 




 

My daughter Jennifer and her husband, Bartley.


McKenna Grace and Auntie Jenn

McKenna and Uncle Bart



Serious Miss Braeda


Aunt Jenn and Kinnick

Debbie Weiler made these pillows and the white part is chenille from an old robe of mine. Priceless to my daughters and step daughter, Kate!!


The four "Cummins Girls" and their children.
Samantha Cummins, Amy Rusk, Leslie Cummins, and Jenn Cummins~Zuber...then we have McKenna Funk, Braeda Rusk and Kinnick Funk. Leslie will be married in May to Rhett Funk.


Aunt Amy and Kinnick


Braeda, Kinnick and Amy


Debbie Weiler and I on Christmas Day.





Miss Samantha (one of my youngest....her twin is Leslie).

Chris Foust (Samantha's sweetheart) and Kinnick

As I was coming down the upstairs, I caught a glimpse in the mirror of this and thought it was a pretty picture.


Tuesday, December 18, 2012

Still on a bumpy road....

Well, chemo came and went yesterday but I have still been having episodes of small amounts of spitting up blood (it is blood mixed with spit...not blood from like you would see drawn from your arm) and some clots (the largest the size of a quarter or so) but most are dime sized. My chemo dr in Effingham thinks it could be the Lovenox but Neupogen (builds my white count after chemo) also thins blood so I am at a crossroads.  Dr. Goswami has agreed at this point to let Dr. Dy manage my blood level/Anti XA tests.  Dr. Goswami's nurse wonders if I should see an ear,nose,and throat dr to see WHERE the blood is coming from (scope time). I TOTALLY agree. Maybe it is NOT the drugs but a sore or something worse in my throat. Not knowing is sometimes the worst medicine of all!! I did have a puss pocket at the back of my throat so he put me on antibiotics to stop whatever might be starting. I feel pretty good today which is normal as he loads me up with some steroids when I get the chemo....it also leads to bad sleep for about two days. The bad part is I take a Neupogen shot the day before Christmas and the day after....they are the shots that have flu like symtoms and fever. So, Pat and I are going to try something new and take the shot in the late afternoon so maybe the side effect will happen while I am sleeping and I will wake up feeling not so bad. It's worth a try.
Christmas is at our house again this year and we are cooking the famous prime rib. Oh so good!!! I am debating Chinet plates for
lunch....is that bad of me or what? The girls do the dishes anyway so I do not know why I worry about it. It gives them more time to sit down with Pat and I (and whoever else might be there that particular year) before running off to the next house.
I still have a few sets of cards to sell....you could buy them for next year???  Come on....help me out here....it's all for a good cause! Most of the money goes for our local Walk and Roll Relay for Life and a small amount goes to The Cholangiocarcinoma Foundation which is a site for my type of cancer. Lots of info on side effects, clinical trials, people also struggling with this silent disease, and just a lifesaver if you have just been diagnosed with cholangiocarcinoma.
I will keep you updated on the blood issue but I think I might bring in Dr. Houston to see what HE thinks of a scope down the food pipe to see if they can locate the problem.
I am sure I will post before Christmas but have a Blessed Season and enjoy your family/friends.....life changes so fast sometimes.

God Bless~~

HUGSand Prayers!!
Patty

Monday, December 10, 2012

Fingers crossed......

My doctor called and changed my meds the same day I posted the LAST post. He put me on a prescription strength stomach acid pill called Protonics 40 MG PLUS Pepcid AC. I take the generic Protonics but nonetheless, my belly seems to be settling down somewhat (knock on wood). They lowered my blood thinner also so maybe the bleeding was an ulcer...it will help put a halt to the bleeding. It seems, I spit the blood up on Wednesdays so we will see what this Wednesday brings. My husband, Pat, thinks I have a sore or ulcer in my lower throat that has been irritated enough to bleed. Both times it has happened after eating so maybe he is on to something.

I had the best weekend. Friday afternoon was my Christmas party at work and we all traveled to Richard's Farm in Casey for a nice meal. Saturday morning I cleaned some and moved furniture as the girls/husbands and boyfriends came to put up my tree. By the time they arrived with a breakfast casserole to put in the oven, I was pooped. I didn't help much. Then, I met my sisters, brother, their spouses, and my mom at The Holiday for an ornament exchange and lunch. I was too tired for church so Pat and I went to 8 a.m. Mass on Sunday. We then decided to eat breakfast at The Holiday.

Something odd happened as Pat and I were finishing our meal. A man in his late 60's early 70's stopped at out table,smiled at me and said "You are just beautiful!"....I kinda fidgeted and said thank you. It was like he had a message for me as he knew I had that "Are you nuts" look on my face. He looked into my eyes and said "Mam, you are truly beautiful the way you look. I want you to know that." I smiled this time and said thank you in a more appreciative tone. He was by himself so I wonder if his wife didn't have cancer. I was wig-less that day. I even went to church bald....that is a first.

His comments made me tear up although I tried to hide it from Pat. As Father Jerry says....one nice comment can make someone's day.... do something for someone this Christmas Season to make someone's Christmas a little brighter.

We spent the rest of the day with our oldest grandchild, McKenna, at our house. She adores Pat, so he gets most of the attention. After taking her through the park/Christmas lights, we ate supper with Leslie and Rhett, and then returned home. I was in bed by 7:30.

Back to work today and all is calm. Let's keep our fingers crossed...or better yet, say a small prayer for me to continue with good health into the new year and even after.

I will keep you posted if the bleeding starts again, otherwise, it's a closed case!;-)

I hope God keeps you all safe this Holiday Season!! Do or say something for a stranger as someone did for me on Sunday. It will not only make that person feel special but hopefully it will touch your heart for being so giving. Something so BIG that costs so little!!

HUGS!

Patty

Thursday, December 6, 2012

A little uneasy right now.......

I was at work yesterday when I started to spit up blood again...including a few clots of blood. After calling the dr, he decided to lower the Lovenox and keep an eye on me (Lovenox is the shot I take 2 X day for thinning the blood). I slept good last night but when I was up drinking my coffee, I started spitting up stomach bile...the real nasty tasting stuff that is yellow. SO....we called the dr again and we are  lowering the Lovenox to 40 mg PLUS taking Prilosec and Zantac. Dr. Dy is insistant it is an ulcer from the chemo. I hope it is that easy and nothing bleeding internally that could get worse. To say the least, I am a little concerned with the blood problem. I have no pain so it's a little hard to diagnose. My team of doctors have did such a wonderful job this past year of keeping everything mostly calm, so I am praying for stability during this Christmas season.

I am at work today but my flannel sheets sure sound good about right now.

I go to Texas for the 3 month checkup in January so maybe I can have it all straightened out by then.

We have 50 sets of cards left to sell so PLEASE call if you would like a set for $15. Some are Christmas cards but alot can be used throughout the whole winter.

I will keep you updated on the bleeding issue but hopefully by lowering the dose, the bleeding will go away. And that the drugs will soothe my tummy.

Each morning and night when I pray, I tell God I do not know how I could do this without Him being front and center! No matter what happens with this blood issue, I know God has a plan, and I know that He knows what's best for me.

God Bless you all this Christmas Season!

HUGS!
Patty