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

Kinda bummed..........

I went for my weekly CBC and Anti XA test (blood clotting test) and my platelets went down 1,000. They were 97,000 and went to 96,000. I haven't been as good about drinking the Ensure this past week and I have went a couple of days without a nap. I do not know WHY it didn't raise even a little but I am planned to start back to work next week and I am going unless a dr stops me.  I am working in Lawrence County next week so it should be (maybe) a little more quiet since I am just covering an office.

I tried to find info on building platelets.....lots of green veggies...broccoli, spinach, etc. so I guess I will make a trip to the store in the am in "stock up" on all of those. I have been hitting the fresh peaches and watermelon lately. I will start drinking my Ensure....atleast 3 a day...and eat a little better. I really wanted to stop my naps this week since I am getting ready to go back to work but I guess I will put them back on my schedule this week. Yesterday, I did 3 loads of laundry....unpacked my suitcase from Houston (NO....I never did it and then our cat made a house inside the suitcase-everything was covered in light colored hair from our Siamese cat))...so.....I had to re-wash everything. I had to clean up my closet a bit and I hung everything up and tidied up our room.  I painted  some yesterday sitting at the dining room table, I watched McKenna while Leslie had Kinnick's bilirubin checked at RMH, I walked to the mailbox....so I did more yesterday than I have since I have been home from Houston. I didn't take a nap and I just "felt" more energetic. So.....POOP!
I am trying to stay positive, pray even harder for better lab results, thank God for last weeks results, God has talked to me alot this week and when I have had a bad thought, he has corrected me with a good thought....or redirected me. I thank Him for that as I really need to know he is there helping me at this difficult time.

I have talked about pain in my shoulders (kind of like a rotator cuff torn type of pain), and I have gotten ahold of a pain specialist from Vincennes that gives cortisone shots to people in the shoulder for this type of pain which is pretty normal after radiation. I have asked Dr. Houston for a referrel to him. They say it is not so painful when you get the shot but for about 3 days after you get the shot it hurts like "no other". I am a side sleeper and have not been able to do that for MONTHS. If I take a pain pill when I go to bed due to the shoulder hurting so bad, it takes the pain away...then I wake up in severe pain because I have somehow got on my side and the pain meds have worked off and I am hurting badly. So, I turn on my back or move to the couch and try to get back to sleep. Cancer really makes you appreciate the life you had BEFORE cancer and how the small things you had high speed come aparts over...were the small things I don't even sweat over anymore.

God is always good. I have all the FAITH that he has a plan for me. I accept that it might not be a plan here on earth....I will follow his cue or let Him guide me to the best place for me when the time comes. The best thing is knowing He is always right beside me. Without knowing that.....I don't know if I could carry on daily. Next Tuesday I will have good lab results...so if you pray for me, no matter when or where, pray for good results and that I can get to that pain specialist. Looking forward to that long needle ;-[

HUGS & PRAYERS !!
Patty

Lab results......

Resting, sleeping, reading, eating alot of protein, LOTS of Ensure.......that about sums up the last week besides mass and RMH when Kinnick was born. But I had my CBC checked today and my numbers are UP!!!  My platelets went from 72,000 to 97,000 in a week. Yes, it is still low but headed in the right direction. My white blood count was low at 3.2 and this week it is 4.0. Your white blood count should be atleast 4.80.....maybe next week I will be there!  Last week my hematocrit and hemoglobin were low but this week they are within normal range.  I still feel really tired but I am hoping this week will change alot of that if I stay down and rest.

I have a problem with both shoulders but the right one more so than the left. Radiation has caused the problem more than likely. You have a nerve on each side of your chest that runs up over your shoulder into a brachial bundle of nerves and the nerves that go up and over your shoulders is not liking the radiation. I feel like I have a torn rotator cuff (although I've never had one) so at MD Anderson they said acupuncture can sometimes help it. So....I am on a hunt for an acupuncturist that is in Olney....I don't want to drive 30 miles for one. Since I am on blood thinners....they might not touch me...we shall see. Sleeping on my back all the time is hard to get used to and I wake up alot in the middle of the night in extreme pain because I have somehow got on my side and wake up in excruciating pain. I am not whining by any means....this is just one of the side effects of radiation.

I am SO thankful for good test results, for Leslie having a healthy beautiful baby, I am thankful for the people at RMH who have been so helpful with getting my test results back to me so quickly. I am thankful for Anne who I always like to get registered by as she is such a positive, inspirational person. God has answered alot of prayers for me this week and it only strengthens my faith. He told me he would always be right beside me, and He is!!

Hugs and Prayers!!
Patty

SO...SO TIRED!!

I was thinking I would be up for going back to work today in my mind....I think I am going towards the wrong way as I am just so tired. My platelets went form 77,000 when I left Houston and are down to 72,000 as of last Tuesday. I will call my dr tomorrow to order another CBC to see my platelets and red blood count which is also running low. I had to call my boss and ask for two more weeks off.....some people say it takes a couple months.....I guess I had NO idea of what it does to your body after you go home but the IMRT keeps working for six weeks so it is still trying to pin you to the ground (or so it feels like it).

We have had some good news in the family as Leslie has a new baby boy. Kinnick Bradley Funk entered the world last Thursday. Now McKenna has a baby brother but so far I don't think she's too awfully impressed. I think he looks like Leslie and Rhett both but he is a pretty baby....just saying. He is jaundice right now so Pat took her to get it checked today as I didn't even get out of my jammies till 4:15 pm.

I pray for strength, good blood results tomorrow, peace for our troops, and thank God for my family for cooking for me. Without God, I am nothing. I thank Him daily for being beside me. Faith......where would we be without it?


Please enjoy the few pics of the new baby!

Leslie, Rhett, and Kinnick

                                        


Leslie, Rhett, McKenna, & Kinnick Funk

                                                      Kinnick and his "Ja-Ja"




Kinnick Bradley Funk

Rhett and Kinnick

                                        Aunt Jennifer Cummins~Zuber & Kinnick

Mckenna checking out her new brother with Leslie

                                                                  Grandpa Pat & Kinnick

                                                         Uncle Bart, Aunt Jennifer & Kinnick

                                                       Chris Foust (Samantha's boyfriend) and Kinnick

                                             Rhett, Leslie, and Kinnick homebound from the hospital


Hugs & Prayers,
Patty

Catching Up

Mom has enjoyed spending time with the grandbabies. McKenna and Braeda have definitely missed her!! We're so glad she's home and feeling up to visitors all the time.

McKenna is sharing her pickle with Braeda.

McKenna flirting with Chris (Samantha's boyfriend).

Hiding from Chris.

McKenna taking a break with Pat and Richie.

Braeda decided if she wants to get any closer to Steely Dan.

Written/Posted By:  Amy

The Bell Ringing finally came!!

The last day of radiation came and went....and so did my energy. The first four weeks were a piece of cake as far as energy.....just problems swallowing and pain in my side. But by the weekend of week four, I was feeling the weight dragging me down like nothing I have ever experienced.  I can't explain how bad it was but if someone has had IMRT, they know a little of what I am talking about. I had the highest dosage for my type of cancer, weight, all that good stuff that they take into consideration. By the time I left Houston, I was wiped out.

The dr would not even hear of me going back to work after one week, and was hesitant to let me go back after two weeks. She said to play it by ear and I would know if I was ready. I still sleep anywhere between 2-4 hours a day and am still tired. Time.........it just takes time.

 So, when I go back in five more weeks to Houston, they will run a PET scan and I will get the results the next day. The IMRT Radiation can do lots of things...or nothing at all. It could shrink it, stop it from growing anymore and give me a break from all treatments until it acts up again, since we are just treating the liver area, it can metastasize to somewhere else in my body. WOW....I pray for stability or shrinkage.

Without my family coming down to stay from my mom, sister Sarah, husband, Samantha, Jennifer and my step-daughter Kate who all helped clean, cook, raise my spirits, and be very quiet when I was resting!! I received 116 cards in 6 weeks, Thanks to all of you who raised my spirits with your cards or included a verse for me to look up in my Bible. I was humbled by everyones generosity!

I will close with a picture I want to "paint inside your head" of my bell ringing day. After getting zapped for the 28th time in 6 weeks, The radiation team below walked out with me and the waiting room was pretty full (probably 8-9 strangers) and they all stood up and I rang the bell, they all clapped along with the radiation team. It brought tears to my eyes. The Md Anderson Radiation team was part of what gave me strength to go back everyday. Having your insides cooked is NOT fun. BUT....I did it....  I really am lucky to not have had worse side effects. God was there....he gave me the team I had, they gave me good medical tips, but I believe I was led to this team as they were top notch. I have faith good things will happen when I go back. I have faith God still has big plans for me here on this earth....I believe without my faith, I would not be here right now!!

God Bless~
Hugs!!
Patty

                  My eyes are shut but it was good of everyone else so here it is anyway!

                     I wanted to ring it 28 times(for the 28 treatments), but they said 3 times is the limit.

                                                 Just the best bunch of people I can now call friends!