Well, I recovered nicely from the previous night just in time to replay it over again last night. I am journaling all my meds, food intake, fevers, and other fun stuff and I literally got a fever again last night at the exact same time as last night and it was the exact same temp! Too weird! So, I was up all night again, woke up at 10 feeling crummy, went back to sleep and woke up at 3PM soaked in sweat and in some serious pain. Maybe I have a little bug or something that is making me miserable while still trying to get over the big task at hand. Whatever it is, I wish it would go away, it is no fun!

I am recovering from a pretty rough night last night. I tried to go to sleep around 10ish and I don't think I fell asleep until 3ish, after downing an Ambien! I had a pretty good fever working when I went to bed and it took me several hours to break it and sweat it out. I cannot get comfortable to sleep while I am sweating and burning up, so I just tossed and turned and kept cold washrags on my head until the darn thing went away. The Ambien kept me out until well into the afternoon. But since I got going late in the day, I have felt okay. The pain seems to be on its way out, I hope. It does wake me up like clockwork when my next Oxycontin dose is due, so I guess I am not completely free of the drugs yet. The fevers have been sporadic for quite a while now, and less intense, so I was surprised to see one that high, I hope it stays away.

The doctor's visit went okay today. Our appointment was for 7:45 and we didn't leave until after 11:00. So, that was kind of a drag. The doc was very upbeat and he is going to put me on a different chemo cocktail that is pretty popular and supposedly has less side effects. The new drugs are Gemzar(Gemcitabine) and Cisplatin. They will both be given via infusion as opposed to the Xeloda I was on before that was given in a pill form. They are concerned about my Hemoglobin b/c it is at 8.8 and it has dropped from 12.6 in the last month and a half. My physician's asst. thinks it is most likely from all the surgeries I have had in the same time frame. They are putting me on Procrit, I got a shot of it today and I will follow with one shot weekly until my levels rise. I need to do this by July 17th, b/c I will not be allowed to undergo chemo with my numbers so low. So, my first chemo on the new regimen is set for July 17th and these drugs will be administered every 2 weeks, instead of every 3 with my prior cocktail.

Since the "tiny" tumors they found on my abdominal wall took me out of the running as a surgical candidate, I now have to fight this disease systemically again and slow down its progression. The doc says that no stats out there regarding cholangio apply to me b/c of my age and anything is possible with all of the new technology just around the corner. There was mention of radiation, MDACC has a new cutting edge Proton something radiation that is about to take off and will be more precise than any other radiation out there. And there was mention of Erbitux and Tarceva, which are tablet form pills that work if your tumors are releasing a certain type of protein, so he is going to send of some of my frozen tissue slides to see if those drugs may be available as a combination therapy with the other chemo drugs. Basically, I am fighting this thing as a chronic disease and hopefully I can stay within the acceptable range at all times as not to delay any chemo doses and as advancements come along, I am in the best place to take advantage of them.

This weekend was extremely uneventful! The only way I can get comfortable is by lying flat on my back. Which I find very hard to stay awake while tucked cozily in my bed. The pain meds are now about 5-6 hours apart, when I first started them, I was about every 3-4 hours, so I am making some progress there.

Tomorrow we finally have our appointment with the oncologist to figure out how we are going to tackle this junk. I would like to start chemo right away, but I may have to hold off for a while so my giant incision can heal. We'll see. I will post the new info tomorrow.

Happy Birthday Suzanne!

I am still pretty uncomfortable most of the time. I can't find a good position to sit up or lay down without feeling like my liver is going to jump ship! Oh well, I hope it gets better this weekend so I can maybe leave the house for a few minutes.

Would you believe it is raining AGAIN!!! The dogs are about to go absolutely bezerko from lack of exercise and our back yard has turned into Lake Lester.

Today was blah. I went 12 hours without a painkiller. I thought I was doing good, but turned out no so good to go without for so long b/c then you have to catch back up. Blah, blah, blah. Quite a bit of pain and uncomfortableness today, everything is swollen and fighting for room still.

Could it rain anymore around here? I am sure some sunshine might help heal things a little faster!

Yesterday and today have been pretty much the same. I have my pain meds spread out to every 5 hours almost every time. I got the go ahead to take Ambien CR at night to help me stay asleep and that has definitely helped out the last 2 nights.

Yesterday, I left the house for the first time. Joel's Mother is in town for a while to give him some help around the house. We all ran an errand to the shoe store, of course, if you are going to try and bribe me to get out of my pj's for something, shoes are always a good choice! We went to DSW, so I also got some of my necessary walking in, so we killed 2 birds with one stone.

Today we had a pointless visit with our surgeon and he is just sending me back to my oncologist and that appointment is for Monday morning. So, I hope he is ready for me and puts me on some kind of chemo plan at the time. Wishful thinking!

Well, all of this rain certainly does not hurt my participation in the sleep olympics! For the last 2 days, it has been the same shade of dark outside everytime I wake up. I never know if it is day or night. I guess it doesn't really matter right now? I am beginning to be able to spread out my pain doses a little farther. I am having trouble staying asleep lately, I have no choice in the matter of falling asleep! I am having crazy hallucinations and I keep waking myself up from talking in my sleep. Several times I have woken myself up by grasping at things in the air that are not there! Fun stuff! Joel has added these to the regular crazy list, he is not convinced they are drug induced!

I must go now. I am being forced to eat in exchange for more pain killers. What a meanie caregiver!

I have finally made the long trip downstairs for the first time since we got back home. I have basically been holed up in our bedroom on heavy meds round the clock since Friday evening. The pain is gradually letting up and I am able to stay awake after doses now.

So, the liver surgery was not meant to be just yet! You think I could get a refund on all of our time and effort in preparing for these 2 non-surgeries? This time they gutted me to find out they couldn't do it and I have the most gi-normous incision in a big backward "L" shape all across my belly. Oh well, we have asked all the questions in every angle possible and supposedly, it is better off that they didn't go through with it. I told him he had not seen the last of me and as soon as my trusty chemo kicks these new "nodules" asses, that I would be right back there ready for more cutting!

I can't thank everyone enough for all of the support Joel and I have received. We were flooded with flowers, plants, cookies, emails, prayers... You name it, everyone came through wherever we were in need. It warms my heart that so many people care about us. I hope all this cancer mess is over soon and we can all focus and more positive things for a change!

Lots of Love,
Kelly

Kelly got out of the hospital today. She is at home and resting. We are both beat after the three night stay at the island. I don't know why no one lets you sleep in those places. A nurse woke me up at 4:30 a.m. to give me some paper work about Kelly's meds. I suppose it couldn't wait.

I will try and blog tomorrow, right now I am too tired.

Joel

I don't get to blog much. For those of you who know me, sometimes my "southernisms" and words that I think sound good in sentences aren't always correct. Which Kelly does not wish for either of these on her blog. But there are a lot of you who check this everyday and I thought that a little info from me might help ease your minds of the most recent events.

The cancer has spread to Kelly's abdomen. The doctor said there were several small spots. So the big question that I am sure a lot of you have is " why not take out the big tumor"? The reason why not, is b/c the cancer originated in the liver. So it takes on the same characteristics of the liver. If you remove part of the liver the body will automatically tell the liver to grow at a faster rate. Since the cancer has the same characteristics of the liver it grows at the same faster rate. Another problem is that they only saw a few spots, so we don't know if it is anywhere else.

So what's next? We have not spoken with our medical oncologist. But we are sure it will involve more chemo.

How's Kelly? She is in amazing spirits. She is the strongest woman I know and I am lucky to have someone like her. She is ready to continue the fight.

What can I do? Keep on praying and sending email to the room with kind words. Keep on fighting along side of us.

We are all disappointed that the surgery did not happen, but we are going to keep on fighting and will continue to need everyone's help to do so. We aren't done yet.

Until the next time.

Joel

Update from Guest Blogger: Kelley Stephens

Joel called to say that they were unable to do the surgery today. Once they began the procedure it became evident that the cancer had seeded. Sorry for the brief post, but that's all I have so far. I will be sure to update as soon as I get further information. Keep the prayers and well wishes coming!

 

Also, if you are on the "schedule," please plan on sticking to your days---Joel thinks Kelly will be in the hospital for three or four days.

 

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Ready or not, it's here!! Tomorrow is cutting day, hopefully this time they will do some serious chopping! I am about to start my "cleansing" to prepare for tomorrow, I can't wait for the fun to begin.

Surgery time is 7:30, we have to be there at 5:30. Surgery should last 4-6 hours and someone will post the update on the blog as soon as it becomes available. Here is the address for the "Net Notes" that they deliver to my room to cheer me up.

You need my name, birthday (01/30/1975) and my patient # (0666995) to send a message.
Messaging Address: https://www2.mdanderson.org/sapp/contact/message.cfm

Everybody keep their fingers crossed for clear margins and a cancer free Kelly! And say a good word for my perfect husband and our families, everyone is pretty stressed right now. I hope the next post on here is nothing but great news!

I'm signing off for a while so I can grow a brand new healthy liver, chat with ya later!
Love,
Kelly

I finally caught up on some sleep last night. So much so that I slept until 11:00! We were supposed to be at my company's 15th anniversary company picnic at 11, so we were a little late, oops! It was nice to see everyone from work and their families. We all talk so much about our families but rarely do we get to actually meet them, the family picnic was a great idea.

I hit a wall around 5ish and crashed hard when we got home. I had a fever I couldn't shake and I just felt terrible all over. I slept for an hour and the rest of the evening I spent laying in bed trying to manage my pain. My liver volume is 110%, so I have an extra 10% that is trying to fit into my midsection and it is very uncomfortable! I just came downstairs for the first time in 5 hours and I feel a little better, I hope to get some more rest tonight too. Tuesday will be here before we know it, I am getting very anxious!!

Just counting down the days until Tuesday! Joel and I are trying to get everything in order to be gone for a week. Thanks to everyone who has volunteered for shift work to sit with me at the hospital to give Joel some free time and volunteers for dog & cat duty at the house, we couldn't get through this without all of your help. I am pretty anxious these days and not sleeping very well, especially since I didn't get my Ambien refilled yesterday! My mind is racing in a million different directions and I can't calm it down at night when I try to go to bed. I am going up to the island tomorrow to demand my Ambien so I can get some rest, I hope it doesn't get ugly! I am not a representative for Ambien, I promise, but the stuff really works well. I have to give credit where credit is due!

Thanks for all of the encouraging comments/emails, I am pretty nervous about this thing. Especially after my luck last time! I am so ready to discard this lousy liver and start fresh with a brand new one!

Today was a try my patience day at the Isle Of Cancer! Let's just say we waited for a VERY LONG time for our 11:30 appointment and we didn't get home until 4:00!

Okay, now for the good news... My good liver, the left side, has grown a whopping 10% over the last 4 weeks and Dr. Vauthey was very happy with the results of the PVE. Surgery is still on for Tuesday, the 13th. I won't get the time until the night before, how convenient for THEM! Dr. Vauthey gave me the name of the Chief of Anesthesiology and told me to request him for my surgery. Anesthesiology thought this was amusing until they saw my chart from the last time I was under their care and all they put me through. The Chief accepted and I will be in the best hands for my next surgery. No more botched epidurals and extra hospital visits to correct a leaking spinal cord membrane! All is good, now we wait!

I got my days confused regarding my appointments this week. Yesterday, around 2 I realized that my 5:00 appointments I thought were on Tuesday were really on Monday. So, I spent the evening at the island and I got home around 6:30. And now we are here bright and early at 6:30AM for my CT prep and my favorite Barium Breakfast! This is my only appointment today, so I hope to be home soon. At least I am in the new building with internet access and I can pass the time on the internet.

I had so much fun on my trip to Miami. We had very nice weather and only one afternoon shower. We spent most of the time on the beach hanging out. Our resort was really nice and we wore out the waitstaff bringing us fruity boat drinks on the beach.(Don't worry, mine were non-alcoholic.) We stayed at the Trump Sonesta Hotel in Sunny Isles, which is about 20 minutes North of South Beach. Kelley's undying charm got us an upgrade to an ocean view which was really nice, we had a private balcony that looked out over the pool and the ocean. We ate some really good food, yes, I even ate well at several meals. We got home around noon today and I just woke up from a 4 hour nap, I hope I can get to sleep tonight.

Thanks so much to Sarah, Kelley and Megan for taking me on for a weekend. I am so lucky to have the best friends in the world, including those that didn't make the trip, of course! I really needed veg time away from the sick house and a beach getaway was just what the doctor ordered, right up there with growing a new liver.

This week is filled with appointments on the make-believe island. Tuesday I have appointments at 5:00 in the evening, which is weird, then Wednesday I have a CAT scan at 6:30 in the morning, followed up with an appt. with my surgeon and anesthesiologist on Thursday. I might as well get a room down in the Med. Center for the week!