A Few Photos of the Beach

We have just returned from a week in Nags Head, North Carolina on the beach. I'm confident Mom will post soon about all the fun we had. In the meantime, here are a few photos from my camera. 

JaJa and Kinnick

Snuggling after a morning poolside.

Momma, Kinnick, and I.

My husband, Bartley, and Momma snuggling on the couch.

JaJa and McKenna on the deck watching the waves.

Amy and Braeda.

McKenna soaking up some sun.

Mike Sullivan and Kate enjoy wine while playing Bananagrams.

Bill Weiler and Samantha in our pool.

Patrick poolside.

Samantha and Chris.

Mom had the first Irinotican treatment in Effingham yesterday. She wasn't feeling very well when I spoke to her last night. Please pray for her strength and recovery.

Written/Posted by Jenn.

A couple of things.....

I had to take my car to Eagleson's yesterday as this past winter when we had ice, it totally encased my car and I could NOT get the car door to open. I rapidly became "peeved" and pulled the door handle so hard.....to show it who was boss...I pulled so hard I pulled it OUT of the door of the car. Talk about an "OH SH---T" moment and I tried to jam it back into the door like I was a first grader and was gonna get a whippin' when Pat found out (It was still attached by wires or something so when it came out, it just hung there).  I got it to stay in and we have just very gently opened that door with ease each time. When in Houston for radiation, the valet parking man opened the door and did an "OH SH----T"....(because the door handle fell out of the door)!!!  I thought Pat and I were gonna belly laugh on the ground at their reaction......   I was in a hurry the day that it all happened and I think God was trying to slow me down....  So, anyone who wants to try this trick...it'll cost you somewhere around $135 to get it fixed which included the labor. That is my "funny"for the day"

I went for blood testing today at RMH and the numbers are slowly crawling in the right direction. My platelets were at 97,000 (2 weeks ago) and they are now 102,000. YEAH! My white blood count is low at 3.6. Probably the reason for the 4 cold sores on my bottom lip.

My oncologist is on vacation this week so no chance to get started on chemo. Then, I am on vacation to the Outer Banks the next week so it will be July 30 before I have my first treatment. This one kinda worries me. I have studied it extensively and ALOT of people have diarrhea and dehydration so bad they are admitted to the hospital. BUT, I was suppose to have bad side effects before and have mainly just had tiredness....so I will let God lead the way and I will follow him on this new chemo journey. My new drug is Irinotecan. As Jenn said in the last post, they wanted to insert a pump that would release chemo over 2 days but our FAVORITE DR in Springfield said No to all that. Kinda sad about that because two drugs work better together.  I will go to Effingham every other week for the IV drug and for bloodwork/see the oncologist.  My platelets that have struggled to climb are also at risk for nose diving so it will be even more important to keep a close eye on that. They will just give me platelets if it goes too low.

The six weeks I was in Texas for radiation I just prayed for stability or shrinkage. I got stability and I am so grateful for it.

A few weeks ago, Father Jerry talked about thorns, and how everyone had a thorn somewhere to deal with. Whether it be a person, a job problem, an illness, a bad marriage....everyone has a thorn. I guess I could look at this cancer as a thorn but He has been beside me from the very beginning and I feel safe. I have faith that no matter what happens here on earth or in another place of peace, I will be with God and I have an inner peace about that. It makes me not afraid of anything they do to me....I pray nightly that God guides the doctors to let me be on this earth as long as he sees fit....that's all I can ask for.


I went back to work last week full time. It was a little bit of a challenge but I did it. I will also work full time this week then on to the vacation.
Starting August 1, I have decided to go to work part time. I have started back to walking some. Pat and I walked Friday, Saturday, and Sunday but I overslept the last two days. We walked just over a mile on day one. Day two, I decided to shuffle/slow jog, and day 3 we walked about a mile and a half at a good pace. I am going to bed by 7 tonight so I get up early enough to get a walk in !! 

Everyone have a good rest of the week and may God bless you with good health as us who do not have good health, know what it is like to struggle through when the journey gets bumpy!!

HUGS!
Patty

A Mostly Stable Disease

Mom, Pat, and I had an uneventful trip to Houston on Tuesday afternoon. Mom's PET Scan was yesterday at noon with a blood draw at 10 a.m. After the blood draw, we walked down to the Radiation Department so Mom could see Danna and Travis. They seemed pretty happy to see Mom, and I know Mom was equally (if not more) happy to see them. Also- we have changed the blog so you can leave comments under the 'Anonymous' tag  :)  Just leave your name so Mom knows who you are.

During her PET Scan, the radiologists allowed Mom to put her hands at her sides (instead of above her head), since she is having such severe shoulder/arm/back pain. After the PET, we rested for a bit, and then Mike Sullivan picked us up for dinner at a tapas bar and restaurant near Rice Village. It was fabulous, and we had loads of good food and conversation.

Mom's appointment with Dr. Javle was at 8:30 this morning. Her cancer is mostly stable. The size of the tumor is the same as when she got her last scan in March. The SUV of the tumor is the same. There is no metastasis. There is a new nodule that's lighting up in the lower right portion of her liver, but Dr. Javle does not seem concerned about it. The nodules in her lung that were previously thought to be potentially cancerous are gone. The lymph nodes near her liver may still be cancerous, but Dr. Javle doesn't seem concerned about them. 

HOORAY!!!

Mom will start on a new chemo regimen in two weeks. She will get irinotecan once every other week. In a perfect world, irinotecan is part of the Folfiri regimen, which also includes a 5-FU chemo pump. However, Mom's at such a high risk of complications due to her hyper-coagulable blood, that Dr. Goswami doesn't think she should get a pump, PICC line, or anything similar unless it's absolutely necessary. Cancer doesn't matter much if Mom gets a blood clot that moves and kills her instantly, so she will do without the other type of chemo.

Dr. Javle recommends that Mom start physical therapy to help with her shoulder pain. She will consult a pain specialist if the pain doesn't subside. He also wants Mom to start exercising more, as patients who exercise regularly have tumors with improved response to chemotherapy. She will also have more energy if she starts exercising more often.

Mom's been really worried about her platelets, but Dr. Javle doesn't think they're an issue. Her hemoglobin is great, and as long as her platelets don't drop below 75,000 she will be able to receive chemo. If her platelet count drops to near 50,000 then she will likely receive a platelet transfusion. 

Because her platelets are only 88,000 right now, Mom will receive 60% of the normal dose of Irinotecan. If she tolerates it well and her platelets don't drop, then a higher dose will be attemped. A potentially serious symptom of the chemo is diarrhea, which can usually be controlled with medication. The other side effect commonly experienced by patients receiving irinotecan is immunosuppression. Please be diligent when you're in her presence. Cover your mouth when you sneeze or cough. Wash your hands. Resist going to visit her if you're ill or feeling under the weather. Doing your part to keep her healthy is very much appreciated (by her - and all of us :). 

Mom will return to MD Anderson for another PET Scan in two months. 

Though we all hope that the tumor will shrink, many people pray for a stable disease and do not get it. It's been 16 months since Mom's diagnosis. She's doing really well and has so much to be thankful for. In answer to Mom's standard question, "Do you think I'll be here one year from now?" Dr. Javle responded with a confident "Yes". 

Please pray that Mom will tolerate the chemo well, and that the tumor responds quickly. Please also pray for another cholangiocarcinoma patient, Lauren. She is 26 and needs all the prayers we've got.  

As always, thank you so much for your prayers and good thoughts/vibes. 

Written/Posted by Jenn.

It's ok.....a slow climb is better than NO climb.......

Sorry Danette but I still look at my labs very carefully each week. They did go up 1,000 from last week. I pray daily about my labs, scans, everything daily (several times a day actually) but I have to watch my labs for several reasons....I have had a brain bleed...and you're right.... God brought me back from it just fine and dandy and I never worried about it). So I talked to Dr. Dy (my cancer oncologist in Effingham) and he ordered a couple other tests to make sure I wasn't bleeding internally. He hasn't called back so I guess all was fine.
I was suppose to see a Dr. Chartier, a pain specialist from Vincennes on the 10th but MD Anderson says to hold off as it could mess with the sugar areas that show up on the PET scan.  I wasn't really sure about getting it anyway after the message from Terri Volk.....just torn on what to do.
I leave on the 10th for Houston to get a PET scan the next day at 12, then I will get the results the next morning when I meet Dr. Javle. We will fly home at 3 arriving in St. Louis at 5 pm.
I get a little scanxiety the day I get the results but no matter what they are.....we will take one day at a time and let God take charge.
One day at a time is all I can pray for and each new day is a blessing from above.
I ask for EXTRA prayers for Debbie Houston as she is recovering slowly from shingles. Bless her heart....get your shingles shot people!

HUGS!
Patty