Ready to get out of Texas for awhile!

I haven't posted in several days mainly because I just haven't felt up to it. The radiation has definately hit me with major tiredness. I also am having terrible pain when I eat (on the left side this time). I can drink anything without pain but if I eat anything too hard or try and take pills....it is a pain like NO OTHER! The last time I had pain in my gutt (when I was home for Jenn's graduation) Dr. Das tried to give me some liquid stuff to numb my throat and intestines before eating. I told them I would just wait it out and it soon (within a few days) went away. Yesterday, I asked Pat to go to the pharmacy at MD Anderson and get the script filled. I  have taken the stuff 2-3 times and it doesn't work worth a darn. I think a shot of tequila might work better!!!!  I feel I cannot be totally occluded or I would be throwing up even water. The dr's said this could happen but man oh man they didn't tell me the pain would be this bad.  I had a Boost this am and right now I am eating some Cheerios. If I chew them to mush, there seems to be very little pain.

I mentioned tiredness. I mean so tired, I get up to get my breakfast down 3 hours prior to radiation, take my shot and chemo pills...then back to bed/couch until 11 when I have to get up for my shower. Then be at radiation at 12. Then we go back home, I try and drink another Boost before laying down for a nap. Yesterday, I slept 3 1/2 hours. For supper, I had 2 Boosts. I can tell I have lost weight this week.

Dr. Javle wants me off for two weeks to rest my body and rebuild cells that have been damaged. Just a couple weeks ago, I told them I thought I could just go right back to work but they told me "not so fast" as I need the time to rest. Now I know they were right.

Tomorrow is my last day of radiation....thank you God!  Although I will miss Danna & Travis and their upbeat personalities, I will not miss their radiation room. I will truly miss these guys as they always lift my spirits when I seem sooo tired or feeling bad.

Pat & I will travel about half way home, then stop for the night. We should be back home with the white squirrels by Friday afternoon/early evening.

What happens next? I will come back in 6 weeks for my PET scan and visit with Dr. Javle. Radiation works for 6 weeks after you stop it so hopefully it will do some good tricks in my belly. I don't feel we have used all the tricks in the bag yet BUT I do believe without God's hand in this world of cancer.....I will not live a long life. I pray daily for a miracle as that is what it will take to beat this monster in my belly. Keeping the Faith is the most important part of this roller coaster journey. Did I mention I HATE roller coasters!!

I will probably not blog until I get home unless I can in the hotel room (and feel up to it). I am tired and it hurts to eat. Other than that, I am good. In time, I will get my strength back and the inflammation in my belly will go away and I can eat a good steak or piece of chicken.

Hugs & God Bless~
Patty

3 treatments left.....but a 3 day weekend first!

I will start first of all by Thanking all veterans this weekend!

I will talk about my day yesterday as I met Lucy from the Media Dept at MD Anderson. She has been following my blog for some time and thought I might be a good addition to MD Anderson's Cancerwise website. No matter where you go to the dr, this website is FULL of good info/recipes/stories/I even found a story about a man who shared his experience with cholangiocarcinoma. I will write a story about when I found out I had cancer and kind of an introduction of this cancer that has interrupted my life. I will send it to Lucy and it may well be on it's way to the Cancerwise website. I could tell she was a good journalist as she wanted to pull every morsel of information out of me she could as she was so interested in hearing about it all. Of course, it will hopefully end up helping one person that is coming to MD Anderson for treatment. Lucy also asked for any tips I would have to make MD Anderson better...any complaints (don't worry Dana.....I didn't tell her all the nice names you call me like....princess!!) I can hopefully get my story together over the weekend and send it to her. Lucy was so intensely interested in my story it was neat to see her eyes sparkle to just be able to sit there and hear my story. I believe she was sent to me at "just the right time" as an Angel to maybe even help me face my own feelings when things are up in the air with how well (or maybe not so well) my treatment is working and waiting six weeks after coming home to come back and find out the results.

Then I skipped out on my Dr appt. to go to radiation first. Got that done and got to ride on the VIP elevator. Woo-Hoo. Dana escorted me up the elevator or I probably would have been in big poop trouble!! Oh, I will be so sad when I have to leave my radiation buddies-Dana & Travis. They have been so helpful in asking me what I was doing every weekend, then finding events going on, good eating places, discounts on the Butterfly Museum, and on & on. BUT, it is them, as people, that I will miss. I will probably bawl on Thursday when I ring the bell that my radiation is over because even though I am ready for my own bed and family, they are the closest thing most people have (probably due to seeing them every day-5 days a week) as family. They are true GEMS!

I saw Dr. Das and tried to pin him down on his thoughts of the radiation and IF he thought it did any good. He said we really wouldn't know until the PET scan. IT could stabilize, it could spread to  other places in my body since we are JUST treating part of the liver area, it could spread to other areas of the liver OR it might possibly shrink it. The reason they decided to switch (very quickly) from a new chemo regimen to photon radiation was because the tumor in the liver was starting to totally occlude some of the veins. IF that happens (and probably will at some point) I will have metal stents placed in where the blockages are to open up the veins so I can flow freely again.  I DID gain 3 pounds so that was good. Dr. Das says my blood work is holding up just fine, kidney and liver function tests look great. Anti XA test (blood clotting test) is at .51 which is ON SPOT for my cardiologist.

We got in the pool Friday evening after my nap. Then we ordered pizza (recommended by my radiation buddies) and called it a day at 9.

My sister Sarah flies back home early Sunday morning. She has been a huge help and I will miss her greatly!

I will close for now. No big plans so far....just taking it easy for my bones to rest as much as possible!!

God Bless~
Patty

TGIF!

Thank goodness it's Friday! I slept terrible on Wednesday so was kinda dragging all day Thursday. I slept good last night with the help of some sleep aids. I was up at 4:45 this am but am meeting the lady from MD Anderson from the media department at 9. I then have radiation at 10:15 followed by Dr. Das. We shall see if I lost weight this week. Not alot to report this week. Samantha & Kate are cleaning my flower beds out at home and Samantha has also been weed eating/mowing. Should look good when we get home in 7 days. Thanks girls!!

I come back on July 11 & 12 for my PET and am keeping the faith there will be something good that comes from this radiation.

Jackie (the PA) also informed me she does not want me going straight back to work. She said I need atleast 1-2 weeks to recuperate. It will be nice but I also know I need to get back in the saddle at work.

I would like to find a free concert in the park this weekend...just to take lawn chairs and relax. We shall see.....

Have a GREAT Memorial Day weekend and try to remember or Thank a veteran who so deserves recognition for their service!

Hugs & Prayers!
Patty

A Visit with Dr. Javle's Physician Assistant....

Radiation was at 12 today and all went well. The people in radiation are just full of hope. Full of good encouragement knowing that each and every person climbing on that table to be zapped...needs encouraged....or needs some hope - call it what you want.

Then my appointment with Dr. Javle was at 2. After about an hour and a half, we were called for vitals and then taken back to a room. I saw Jackie (his PA) last time but didn't think I would have to see her again. I guess I feel a little cheated. You can tell she is a little hesitant to answer the tough questions. They needed a copy of my drivers license to do the extensive research on which drugs might work better on my tumor. They will use the tissue from the liver biopsy taken a couple of months ago. Should know more when I go back in 3 months or so....

I told Jackie my radiation team was so positive the radiation would do some good...even if just a little....she said...um, not so much. WHAT? She said our hopes are... it will shrink or be shocked into being stable, but it could also go elsewhere in my body since the only place we are treating for cancer is around the liver area. Hmmmm.....I guess I am a little taken aback by the thought they never told me any of this before....that it can go elsewhere in my body. I go back in 6 weeks on July 11 & 12 for a PET scan and a visit with Dr. Javle (or Jackie). The PET will show cancer anywhere in my body. I will not do any chemo when I return home since the radiation is still working for 6 weeks. Jackie says I will need this time to rebuild my strength so take advantage of it. I am going to keep the Faith by keeping a positive attitude.

On a more positive note, I was looking at my blog posts which I do occasionally just to refresh my memory on my feelings, faith, and hope throughout this journey. Last Wednesday, I had a comment from a lady I had never heard of. She is from the communications/media department at MD Anderson and had been on my blog. She is interested in talking to me.....We are meeting Friday morning so I was overjoyed she reached out and wanted to talk to little ol' me from Olney, Il.....Home of the White Squirrels. I will keep you informed but if it is top notch secret, I will not be able to tell you....  :-)

I am feeling pretty good today. No nap so far and it is 4:35.....  We pick Sarah up at Hobby Airport around 6ish tonight.

Only God knows how my journey will go. The bumps, curves, and turns it will take. But one thing is for sure, I will follow his will every step of the way. He will guide me, direct me, and I will be there....right beside Him all of the way!

Keeping the Faith~
Patty

2012 ACS Walk & Roll of Richland County

Leslie and McKenna enjoy a walk through the park.
Leslie is about 36 weeks pregnant with Mom's first grandson!

McKenna and Braeda wore matching shirts.
The front says I <heart> JAJA, and you can see the back here :)

My husband, Bartley, supervising.

Samantha and Angie showing their support.

Cousin love.

Mom skyping with Lisa, Sarah, and Lisa.

Aunt Kate and Braeda preparing to decorate our luminaries.

Rylan and Bart facilitating more cousin-love.

A few of the luminaries dedicated to Mom.

McKenna and Braeda next to the luminaries that we decorated for Mom.

We had a very fun day this year, though it was a scorcher. We're all pretty proud of our 2nd place finish in total monies raised. Thank you again to everyone on our team who worked to sell shirts, koozies, and raffle tickets. Thank you to all who attended our Italian Beef Night at The Gypsy and the Walk & Roll on Saturday. We're looking forward to having your continued support when we begin fundraising for next year's Walk & Roll!

As an aside: do not be confused by Mom's and my interchange of 'Walk & Roll' / 'Relay for Life'. They're essentially the same thing; they both raise money for the American Cancer Society.

Photos taken by Amy and posted on her blog.
Photos stolen and commentary provided by Jenn. :)

7 Radiation Treatments Left!

The weekend came and went....I don't think I even left the apartment. I was feeling a little less tired when I got up today (Monday), but by the time I got back from blood work and radiation, I was ready to eat and go to bed at 1:15 p.m.  I slept until 2 and thought...NOPE...you are NOT getting up yet, and I laid my head back down to sleep another hour. My average daily nap is about 2 hours.

I see Dr. Javle tomorrow to probably discuss what to do for the next 6 weeks while waiting to come back for the PET scan to see just how well the IMRT worked. Not sure if I will be doing chemo or not. The IMRT can keep working for up to 6 weeks after completing the 28 sessions.

I told Pat this morning that I feel like I am carrying 500 bricks on my back...I am just THAT tired. It seems to have came on the worst in the past week. If it keeps getting worse, Pat will have to carry me to the car pretty soon. I feel sooo guilty just laying around, sleeping, and watching tv....reading or just looking out the window.  Pat says it is ok and totally normal to be SO tired. I asked my radiation team about it and they said it happens to alot/most people (that it just hits them like a brick...and the older people are, the quicker it happens).

The Suntone Beach Survivors came in second place as far as raising the most money at the Relay For Life. RMH came in first. Someone (I won't repeat this persons name) stated the Cummins team did pretty good for second place since RMH has over 400 employees. True, but all money is money that will hopefully find a cure SOMEDAY. Some people say they do not give to the American Cancer Society. I understand that some money goes for administration but if we don't give money for research, we NEVER find a cure. It is like less than 3% of all funds that go toward research for my type of cancer. So what....saving a life is one step closer to a cure for all cancers. I see it differently. I think you do when you GET cancer. THANK YOU to everyone on our team that showed up to walk, donate food, clean up, anything that made us collect so much money......that includes all the people who bought from us. I believe Amy will post pics in the next few days of the Relay.

My sister, Sarah Teeven, comes in tomorrow evening to stay and help us out until Saturday or Sunday. I am hoping it will make the week go by quicker. Monday is a holiday so no radiation. My last treatment is a week from Thursday.

Faith.....what would I do without it! Keeping the faith is the easiest thing when times are rough. I know He is there beside me.  When I am laying in bed and get all teary eyed because I miss home and everyone that means something to me...or I happen to think about little Braeda's smile or McKenna's chattery body, something inside of me tells me to STOP IT....quit boo hooing as it doesn't help. I tell myself to Keep The Faith and I will be home SOON.

And I will be home SOON.... I am not a quitter, and I Believe!

As Jenn points out sometimes....I am rambling so I will close for now.
Keep The Faith ~~
Patty

TGIF!!

Thursday was my worst day yet as far as being sooo tired I could barely get out of bed. I got up to eat breakfast and take meds, went back to bed until about 11 only to shower and get to MD Anderson at 12 for radiation. I went straight back home to eat lunch and go back to bed until about 4.

So, today was my dr. appt. and they weighed me only to tell me that I had lost 2 more pounds. I had ate so much last week I was almost gagging from being SO full. They said they are ok with a 2 pound loss...especially since they know I tried so hard to remain stable. I also talked to the radiation staff and she said each round of radiation is like running a marathon (as far as the nutrients it takes out of you and the cells it kills). So...I am basically running 5 marathons a weeks with a two day break only to start it all over again. I am still really tired today...(not as bad as yesterday) so thank God for weekends to rest up my bones.

I was going to attend Mass Saturday evening but realized the Relay was that evening and they girls want me available to Skype. So...will have to look at Sunday Mass times. I'll get an extra bulletin Fr. Jerry and send it to you. I know you like to see different bulletins from different Catholic Churches.

As my dad used to say....."I am just pooped!"  So I will close for now and ask for prayers of strength to get through the next two weeks. My last day of radiation is May 31. Pat and I will travel part way home that day and then stop for the night. This will put  us home on Saturday, June 1.

Get out to the park tomorrow for The Relay For Life!

Hugs & Prayers!!
Patty