I guess I can't complain too much about the prescription drama. It only took the better half of today for them to resolve the issue and determine that it was not my fault. I did have fun convincing them that I was not a chemo junkie addict and that I did not "accidentally" take more than I was prescribed. They honestly thought I was to blame and that I was trying to pull one over on them to score some more chemo. I did have to drive all the way down there and pay 7 bucks for 15 minutes of parking, but at least I did not get charged again for the pills. I did work my Spanish language magic on the valet attendant so he held my car for me while I ran up to get my meds. My friend Sarah says I need to work on those skills so next time I don't have to pay at all! I guess my constant state of nausea is not as attractive as I would like to think?

Still trying to get out of the week one chemo fog. Yesterday was blah, today was not as blah, but definitely still blah worthy.

I have to go to the island tomorrow b/c the pharmacy switched the doses on the 2 meds I had filled last Monday. I just realized today that I only have 7 chemo pills left in my bottle and I should have around 40 to get me through the next week.(Yes, a normal, non-chemo brain person would have realized this sooner!) Then I noticed that the horrible bottle of steroids I had filled on Monday, has way too many left in the bottle. Basically, they gave me the wrong number of pills for both prescriptions. C'mon, it's not like I am taking aspirin! Do I really need to pour out my chemo bottle on the MD Anderson Pharmacy counter and count them one by one after I spent 6 hours in a hospital bed marinating in chemo drugs??!! That makes me feel so secure, am I going to have to make them prove to me I am really getting chemo in the drip too and how do I measure that dosage?? I am sure it will be much fun trying to straighten this out tomorrow, and my insurance company is just going to bend over backwards to try and resolve it without charging me again! I wish I was still taking the steroids so I could have something to blame my rage on tomorrow! :)

Today was a little better. My good friend, Suzanne, is in town from Berkeley this weekend and we hit the spa this afternoon for much needed massages. This was my first massage in 2 years and it was wonderful, I was convinced the masseuse had cured my cancer.

I was able to hold some food down today but it was a constant struggle to do so, I could really do without this nausea. I am quitting these steroids cold turkey as of this morning, they are making me so sick and I can't get any sleep. I am sure if I didn't offer to quit taking them today, Joel would have poured them down the sink by now anyway, I have been a crazy person on these things. I now know the true meaning of "roid rage", and unfortunately Joel has had to witness it firsthand. I couldn't ask for a better husband, he has so much patience with me. You guys get the sugar-coated version of all of this, he has to see it in all of its glory every day. Trust me, I would not recommend this cancer business to any of my friends!

Today has been miserable, I have been trying all day not to get sick at my stomach and I can't move off the couch, definitely a horizontal chemo day! I am not too sure about these steroids after all. I cannot sleep at any time of the day or night and they make me very flushed which is weird while I have this cold aversion from the chemo. I can't get comfortable, I am either really hot or freezing cold. I have to taper off the steroids, so I am stuck for another 2 days, at least my dosage goes down from 2 pills/2x/day to 1 pill/2x/day. I wish I could find something that works beyond the first day, let me rephrase that... Something that my insurance will cover that works beyond the first day! I have about had it with this insurance run-around.

Enough grumpy Kelly, I have another conference call tonight with my fellow cholangio fighters from all over the states. I am looking forward to talking to everyone again and sharing our experiences. If you haven't already, go checkout the website we are all a part of, www.cholangiocarcinoma.org, a few of us bloggers are linked on the general info page.

I had quite a bit of trouble falling asleep last night. I think the steroids may be to blame. I did however wake up after only 8 hours of sleep which is a new record for day 3 of chemo! I actually had some energy to boot, I didn't get hungry until 4:00 this afternoon. So I had a late lunch or an early dinner, not sure if I will eat again b/c within an hour I was sick at my stomach. So, with the newfound energy comes less sleep, less appetite and an upset stomach. Which is still better than being couch-bound, completely lethargic and nauseated 24/7. I am sure I will figure it out soon, but I am definitely more productive this round than the previous 3 rounds.

My case was re-presented to the tumor board at MD Anderson last night, so I have a call in to my doc to see if anything new was brought up. Hopefully, my surgical oncologist is ready to slice and dice, I am trying to do everything in my power to catch his eye!! You know how surgeons love to cut, I am ready to have this alien tumor removed from my liver ASAP!

Please say a special prayer for one of my fellow young cholangio friends, Hans, from Seattle. He is having his first checkup tomorrow and we are all rooting for him!

Today wasn't so bad until about 2 hours ago. I began to feel very sick at my stomach and I was completely lethargic. I decided to start the Dexomethazone(steroid)tonight instead of tomorrow and it began to work immediately. I don't have an appetite, but at least I don't feel like I am on the verge of getting sick. I hope they help me through my bad week.

Joel and I had a great weekend in our log cabin in Fredericksburg, it was so nice to get out of the city for a while. Of course, Tuesday, it was 80 degrees in the Hill Country and by Friday they were in the mid 20's and they had an ice storm while we were there. It didn't slow us down too much, it's just our luck. Also, turns out log cabins are not insulated, so we built a real fire and tried not to freeze our kiesters off!(kiester works as German for behind, right?)
We visited a local winery, lavender farm, James Avery in Kerrville and we consumed more German food than was thought to be humanly possible. We did awake Sunday morning to find all the news channels advising that nobody hits the roads unless they absolutely have to. All the bridges and overpasses were iced over and there were wrecks and pile-ups all along our route home. So we waited until one-ish when the temperature just barely crept above freezing and we headed home without incident. A lot of the trees along the way were still frozen, it was pretty to see all the hilltops iced over.


On to the cancer update... I did fine in chemo #4 today, I had a really nice nurse and that makes all the difference in the world. His name was Loven, so I told him I was Loven chemo today b/c of him! Got there at 8:30 and left at 4:30, you would think 8 hours on an island would be much relief after returning from 2 days in an ice storm, hmmm, not so much! Now that they have my cocktail mix perfected, I hope the rest of these chemo infusions remain to be drama free. Now I just need the cold weather to get out of here, I can't touch any doorknobs without screaming in pain. Cold and my Oxaliplatin chemo do not mix well, I can't even do room temp drinking water b/c room temp is still too cold! My oncologist has prescribed me steroids to try and prevent me from hitting the giant wall that haunts me the second day after chemo. I get steroids in my infusion but once they wear off I crash and burn. I have no energy, I get so nauseous I can't eat anything and I just mope around for a solid week. I am to start the steroids day 2 after the infusion, so I hope they help.

Finally got some good news today from my very first checkup after 3 rounds of chemo...17% SHRINKAGE!!! My tumor markers have decreased significantly and the tumor has shrunk by one inch. Joel and I were trying our best to contain ourselves in front of the doc, we were so happy to hear that not only has the chemo halted the progression, but that it is actually shrinking the tumors. We decided to hold off on chemo today and I am going to have it on Monday instead.

Joel and I have planned a relaxing weekend at a bed & breakfast in Fredericksburg and I want to be chemo free so I can fully enjoy our trip. We really need to get out of town for a while and I am so happy that we are going to be able to celebrate good news.

I would like to thank EVERYONE for all the kind words, thoughts, prayers, phone calls, cards and emails. We couldn't do this without your support and positive influence on us. I would like to thank my work, Costello, Inc., especially, for being overwhelmingly wonderful to me, I cannot begin to put into words how much I appreciate everyone's concern and compassion. A day doesn't pass without me thanking my lucky stars that I am fortunate enough to have joined such a wonderful company, which is run by a group of extraordinary people!

Signing off until Monday,
Lots of Love!
Kelly

Could tomorrow get here any faster??!!

Joel and I closed down the Barium Bar today around 11. 5 hours on the Island for a 15 minute scan! I am pretty wiped, that barium does a number on my tummy. I can't blame it, I don't think the stomach was designed to digest Barium. Today, I got to choose from Berry, Apple and Banana. I stuck with the berry, I can't imagine banana being a good choice?? I don't care how they flavor it, it's not my beverage of choice. Hmmm, maybe a nice Strawberry Daiquiri flavor?

Happy Valentine's Day!

Today we spent about 3 hours in the Med Center, fun, fun! Tomorrow is the CAT, I can't wait for my barium breakfast, I am so conflicted on what flavor I should try tomorrow! The prep area for the CAT is so crazy, there is always about 50 people there all gagging on barium shakes and the place is a sea of styrofoam cups! They make you go in and pick a flavor and then you have to drink a liter or 2 in intervals. They give you the first cup and they tell you they will bring you your second cup in about 20 minutes, so you sit there and try to choke it down before the waitress so kindly brings you your second round. God forbid you are not done before they come with the next round, then the pressure is on and you have to chug the current one before they leave you with the next round. This does keep you occupied for a couple of hours so you are not focused on "last call"(which we do not speak of), that they so kindly administer while you are going through the CAT.

We have to be at the Island at 6:30 tomorrow morning, so we get to start off our Valentine's date nice and early. We will not have the results until Thursday, so stay tuned until then.

This weekend we just got some things done around the house and ran some errands. I am starting to feel like a normal person again, now that I am on my "vacation" week off chemo. In all 3 rounds of my chemo, this 3rd week "off" has eluded me somehow. I end up living at the hospital with appointments all week, like this coming week and last round I had surgery and all the fun that follows from being knocked out and sliced and diced! The doctors want you to stay away from them the 2 weeks you are hurting from chemo and once you feel all better, they agree to see you and they make you blow your entire healthy week feeling like a sick person b/c you can't seem to get away from the hospital! I am on to them, even with my compromised chemo brain, I see what they are up to!

Okay, happy thoughts from now on. We need some good news this week and I don't know how I am supposed to wait until Thursday to find out my results from Tuesday's CAT. I think Joel and I both are going to have to hit the anti-anxiety meds to get through this week.

Last night we celebrated my belated birthday (off chemo). Thanks to everyone who came and all the wonderful gifts! I love getting all of our friends together in one spot, I have the best group of friends ever and I am so lucky that they are all so supportive of Joel and I. It is so important to surround yourself with positive people during times like this, everyone keeps saying that attitude is everything. And that is one thing I am in abundance of, attitude! :) I appreciate the fact that everyone knows that they can crack cancer jokes and totally laugh about the situation, b/c I am working hard at killing cancer with laughter!

Next week is a big week for me, so it was very nice to have a little fun before I head into my first chemo progress check. I will be living at The Island all week, I have appointments Monday, Tuesday, Thursday and Friday! Can't wait to spend Valentine's Day with Joel at MD Anderson, how romantic! I think I will wear my favorite blue standard issue hospital gown, I am sure it will be beautiful!

Kind of had a rough night last night and tried to recover today by taking it easy and basically sleeping all day. I started feeling better this evening, now I am not tired at all, since I slept all day. I hope my Ambien will do the trick!

Yesterday I went to work in the morning and I met up with Val, Nancy and Char in the afternoon. Val is a fellow cholangiocarcinoma fighter from California. We connected via the www.cholangiocarcinoma.org website. We are both involved in a group of thirty-somethings that are all fighting the disease all over the states. Val's blog is one of the family blog links through the website, along with mine. They are in town, visiting MD Anderson and trying to see what the doctors here think is the best route for Val to take to fight this disease. I took them to Lupe Tortilla for a traditional Mexican meal and we took a brief tour of some things to do around Houston. They are all so nice and I had a wonderful time visiting with them and sharing our experiences. They are in town through Thursday, so we met up again for dinner this evening and I brought Joel along, he did very well with all 4 of us women. It is so nice to share experiences and insight with people in your identical situation. Everyone involved in the website does such a great job of sharing any pertinent tidbit of information on experiences, drugs, treatment options, etc... I am so fortunate to be connected with such a great group of people. I am so sad I forgot to take a picture of all of us so I could post it to my blog, I cannot believe I forgot 2 days in a row and my camera was in my purse the whole time!

Yesterday was Superbowl Sofa Day at the Lester house. Joel was in the superbowl mood and grilled ribs and made potato skins in honor of the big day and I just tooled around the house and caught up on my "24" season four episodes. I did sit and watch all 4 hours of the superbowl. I was just glad it was a week later this year, it is almost always on my birthday or birthday weekend.

Today I went to work for a 1/2 day, it's nice to try and get back into the swing of things. Of course, I am pretty wiped, but I still feel okay. I went on a walk with my neighbor, Sherry this evening, I am trying to get some exercise on my good days, we went a full 2 miles! I have lost a lot of muscle tone in the last few months and my docs want me to try and regain my strength along with consuming 2,000 calories a day! Yah right, I would like to see them ingest 3,000 mg of chemo drugs every day and still choke down 2,000 calories worth of food, whatever! The only thing that goes down with no problem these days is fruit, I don't know how much fruit I would have to eat to equal 2,000 calories, I don't think there is enough time in the day to eat that much fruit! Maybe if I cover the fruit in chocolate, that might work!

This morning started off pretty blah, but it wore off late in the afternoon and we were able to get out of the house for a while. I am finally able to drink beverages with ice in them and my fingers and toes are starting to come back to life after staying kind of numb the past week. Food would be so much easier to tolerate if it didn't smell so offensive to me.

The effects of the Oxaliplatin are finally starting to slack off. Food is going down much better and the cold drink intolerance is lifting. Week one down, 2 more to go!

On a totally unrelated note, I am sure most of you know my husband is from a small town in Texas, Atlanta, Texas to be precise. Atlanta High School happens to have another famous graduate besides my husband, her name is Ellen Degeneres, you may have heard of her?? She is having the 30 year reunion for the class of 1976 from Atlanta High School on her show in California and the episode airs this Monday, the 6th. So, you guys should all tune in at noon on Monday to support my hometown-in-law and gain a little insight about the booming metropolis of Atlanta, Texas. GOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO RABS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
(Yes, their mascot is a rabbit!)

Last night was kind of rough, but today was pretty good. Joel went with me to my doctor's appointment this afternoon and we were able to enjoy the gorgeous weather today. Can't beat 74 degrees and sunshine the first week of February!

Today was definitely a horizontal day. I have this book that describes days during chemo as either horizontal or vertical, which is so true, there is rarely an in between! Either you feel like you can conquer the world or you feel like getting out of bed is your biggest challenge. Today I couldn't move from my spot on the couch, the rain didn't help much either. I am only staying awake for my evening chemo dose, then I am giving in to the sleep demon.