We had a busy Memorial Day weekend. My energy level was way up, so I was able to run around and do a lot. I also ate more over the weekend than I have in the last 3 weeks combined. I still had my fluctuating fevers, but I was able to keep them in check with some Tylenol and napping. I am trying to stockpile my energy from today and tomorrow for my Girls Trip to Miami tomorrow. I am so excited to get out of town for a while with some of my best girl friends. We are going to have a blast, I just hope we don't get kicked out of our fancy pants hotel! My-Jammy here we come!!

Yesterday was not so good. Today, was MUCH better! I have found that 2 Motrin can do the trick for my pain and I don't have to take the super strong Darvocet and be a walking zombie all day. I am still jacking with these fevers, but I guess that's a good thing. I was able to actually get out of the house today and run some errands. I hope this Motrin fix keeps working!

In case I don't post tomorrow, I hope everyone has a happy and safe Memorial Day Weekend!

Here's a picture of my babies sunning on the chaise lounge. Are they spoiled or what? I felt a little better today, I had to go to the island for an appt. I had to take a 2 hour nap afterward to recover from my excursion. I have zero energy these days and I am so sick of these pesky fevers! I woke up from my nap with 99.7, which seems to be my magic number lately. I have dipped into the 100's a few times, but I am good at feeling it hit and I try to take my Tylenol immediately to keep it under control. I talked to my Physician's Assistant today and he said the pain, fatigue and low grade fever mean that my liver is growing. So, basically, being miserable is a good thing for me right now b/c it means my body is doing what it is supposed to, but it is taking every bit of reserve it can find to manage.

My surgery is 3 weeks from today, I am at the midway point between the PVE and the surgery. Steve, my P.A. says that he thinks I will feel better in a week or 2. He also clarified the misconception I had regarding my liver shrinking from the PVE. He said that the PVE just cuts off one of the 2 blood supplies to the liver and if anything the right, cancerous side of my liver will swell a little. I was under the impression the sick side would shrink due to the lack of blood and give the good side some room to grow. Turns out the good part is growing away and trying to find some room, that explains why I am so uncomfortable all the time. I cannot sit upright for too long b/c my insides feel like they are pushing up into my diaphragm, which I now know is exactly what is happening. Steve eased my mind about being off chemo for 2 months and I feel better about it. When they go in to cut out my liver, they use my original CAT scan from day one, before the chemo shrunk anything. They do this to try and get the clearest no cancer margins, so I guess all that chemo was not necessarily for my liver tumors, but to achieve a systemic effect to prevent the cancer from spreading elsewhere. The tumor shrinkage was just an added bonus, I guess! I hope I can sleep tonight after my long nap!

Today, was not so good! I was so weak and feverish, I barely got out of bed all day. I finally got comfortable enough to take a nap late this afternoon and I feel a lot better now. I felt like my organs were at war with each other inside my body, everything hurt! I guess they called a truce for now, b/c everything seems to have calmed down.

I had lots of ambitious projects to do around the house this weekend that turned into Joel's and my Dad's projects. I started feeling crummy again and I have been battling fevers all weekend. I did good on Friday and held down some decent food, but I have paid for it all weekend. If I attempt to get up and about, I immediately hit bottom and feel kind of dizzy and sweaty. The 100 degree heat and humidity down here doesn't help! So, I have just had to sit back and watch my husband and my Dad do all the hard work around the house. Not too bad of a gig! They got a ton done, they painted our hall bath, installed 4 new light fixtures, moved furniture around and installed a new toilet in our master bath. Our first house is a fixer-upper and we are soooo close to completing most of the big jobs on our list for the interior. Working on all of these projects lately has been a good outlet for us, we really enjoy the pride that comes along with doing it ourselves. We have learned a lot and luckily we live within a mile from The Home Depot! I think our next house will be move-in ready and we can appreciate someone else's hard work for a change! :)

Yesterday, I started to actually feel "normal". No weird liver pains, no uncomfortable squished organ pains. I actually had no issues for about 2 hours last night, it was very weird to feel cancer free for a while. Of course, I jinxed it and I got a fever of 100 and I felt pretty crummy until I fell asleep last night. Low and behold, today I woke up feeling "normal" again, I actually ate some lunch, lots of protein, don't worry. Then I struggled to sit through The DaVinci Code for 2 and 1/2 hours! If you have read the book, you will be disappointed, it was soooo dull! I managed to have an entire "normal" day, and now since I have put it in writing, I am sure something crazy will screw it up tonight! I am hoping to crash before anything has time to go haywire! :)

Joel and I have a bunch of chores to do this weekend in preparation for a visit from my friend Suzanne and her new man over Memorial Day weekend. They are coming in from Berkeley, California and her boyfriend Mark has never been to The Lone Star State, so we have to make sure we give him a good taste of Texas! I am glad they are coming b/c it gives us some motivation to get some of our loose ends tied up around the house, we have a long list to work on!

I felt kind of crummy this morning so I took an afternoon nap and I felt much better afterward. I ran a couple of errands and I managed to get down a little more food today. Mainly b/c I am running out of Boost and I keep forgetting to restock. My liver is not happy when I eat solid food b/c it has to crank up and start working to help it digest. I get uncomfortably full feeling just by eating a few bites and the food takes forever to digest, so drinking Boost is just a lot easier on me and my sliver of a liver(hee-hee) doesn't have to work so hard on the Boost diet.

I hope everyone Lived Strong today and remembered to cherish every single day and to take nothing for granted. There was a story line on Grey's Anatomy's season finale this past week that really hit home for me. Finn, Chris O'Donnell, the vet was talking about what happened when his wife was in a car wreck and of course died, b/c everyone on that show dies! He said that he stopped making plans when she died, and that has been a big deal to me since this cancer diagnosis. I have had no control over my future, near or far, at 30, that takes a toll on you b/c that's all 30 is about is making plans for a family, a house, vacations, whatever. I couldn't even RSVP for showers or weddings, I couldn't make set plans for anything or give a definite "yes" during that whole chemo phase b/c I never knew how I would be feeling, if my chemo would stay on schedule, etc... Now that I have almost made it to the surgery, I truly hope I get my future back, I think I have earned it. I hope everything goes as planned this time, that I make a speedy recovery and that Joel and I can take our lives back from cancer forever and make good on all of our dreams and plans. People always say it's the "not knowing" that gets you and it is soooo true! I do have firm plans for a Girls Only trip in a couple of weeks to sunny Miami, it is on the books and I am so there! We are going to sit on the beach and relax in the spa, I am so excited and thrilled to have "plans" to look forward to, even if it is just for a weekend, it will seem like a month for me. I just need to make sure they stock the bar with Chocolate Boost before I arrive! :)

Every day is better, today I actually left the house and took the dogs to the big dog park by my house, it has 2 lakes and several acres all fenced in so they can run free. I lasted an hour, the last half of which I was throwing the frisbee from the park bench, but that still counts! I got a little sun and a little exercise and I managed to eat some soup for dinner. I still prefer Boost, but I am trying to eat more solid food to get my husband and friends off my back. (I know soup is not solid, but it's not Boost, so leave me alone!) I think yesterday was the first day in a week I escaped a fever and I did not wake up in a pool of sweat, that's always good.

Joel and I had to drive all the way down to the island this evening to pick up a prescription, an hour out of our way. They can't man the phones at the pharmacy to get prescriptions switched to a different pharmacy and you can't park anywhere to run up and pick it up. Which takes 15 minutes at most, so then it costs you 7 bucks to have your car valeted (is that a word?). What a rip off! I hate going up there when I am feeling good, it is such a downer. I told Joel that I would have been just fine never knowing where M.D. Anderson was my entire life, but now I know I am a better person for experiencing this and realizing how many people suffer from this horrible thing every day! Tomorrow is Livestrong Day, sponsored by the Lance Armstrong Foundation, you are supposed to wear yellow in support of cancer research and cancer survivors. So, remember to LIVESTRONG tomorrow and be thankful for your health and your friends and family all around you!

Love,
Kelly

I am feeling much better today. I had another chat with my Physician's Assistant today and he told me not to worry about the fevers as long as they are fluctuating and I do not have acute sickness. So, I am good, besides waking up every night with my pj's soaked in sweat from fighting fevers! I still have zero desire to eat solid food and the hunger trigger is not working in me, so I have to force myself to chug a Boost every so many hours, I just don't realize that I haven't eaten. I feel very antsy today, I am not nearly as weak as I was yesterday. I think everyday I am feeling remarkably better and more energized. When I was on chemo, my brain and my body were both in a fog, so I was too wiped to do anything and my brain was too numb to realize that I wasn't doing anything. Now, my body is wiped and my brain is back to normal, so it is making me crazy that my body can't keep up with my mind! At least I am off the caffeine diet, I thought Joel was going to leave me, I was such a basket-case!

I finally left my sickhouse on Friday for the first time in a week. I was feeling pretty crummy all last week. I went to watch our company's annual softball tournament at a park near my house, it was nice to see everyone away from work and to soak up a little fresh air and sunshine. I crashed for 2 hours when I got home from my excursion, but it was worth it. I did manage to eat some solid food Friday night, it was only a couple of bites, but it was progress. I have zero appetite and the only thing I am okay with is Chocolate Boost, it is very high in protein, so I know it is helping with the liver regeneration. I just can't seem to shake this fever I have had post-op, I don't have it all day long, mostly in the evenings and right when I am trying to go to bed. The doc said not to worry unless it hits 101, so I have done a good job of avoiding that number b/c the last place I want to be right now is the ER! This liver growing stuff is so tiring, I am wiped out just by going up or down the stairs. It will be over soon and I will be recovering from the big time surgery very soon, actually it is on the books for Tuesday, June 13th. It better happen this time!

Doc said to get used to the Narcolepsy b/c my liver is regenerating and it is very taxing on my whole body. The liver is "selfish" and will use up anything it can find to meet its regeneration needs. What I want to know is... How does the liver know which direction to grow? My entire liver is still in there and is larger than normal and my spleen is enlarged, it doesn't have very many options. I think right now it has chosen to grow upwards into my diaphragm, I am having a little shortness of breath and I cannot lie flat on my back b/c the pressure restricts my breathing. I feel like that guy on Alien that has that crazy worm thing fly out of his stomach onto the dinner table. I just don't have enough room for all of these organs! Nothing a little dose of Darvocet won't help! On a side note, my bottle of Darvocet, of course prescribed by the pro's at MD Anderson actually has a warning label on it that says "This medicine contains Acetometaphin (Tylenol), exceeding the recommended dose can have serious harmful effects on your liver" I got a good laugh out of that one! It's okay, I have 2 livers right now! :) Off to bed now, I have some liver beauty sleep to catch up on.

Today has been pretty uneventful. I seem to have a touch of Narcolepsy. I woke up around 9 and laid in bed for an hour, got up and took a shower. I guess that was enough excitement b/c next thing I knew I had fallen asleep for an hour with my towel on my head and everything. Then I went upstairs to take a short intentional nap and I ended up sleeping for 3 more hours. I am back and forth between feverish and chills, I could go back to sleep right now. My body is catching up after all of that caffeine I had to chug last week, plus I never get any rest in the hospital, someone is always poking on you and counting your incisions!

Good Night!

Portal Vein Embolization down, one liver resection to go! The PVE went well and the doc said "it was a very difficult procedure", which is evident by the 15 poke holes I have in my ribcage. He said it was hard to get to the portal vein from the angle he was aiming from b/c the tumors were in the way. My surgeon does not "allow" the Interventional Radiologists to go in from the opposite side, so he had to get it done from the more difficult angle. Today when I was trying to clean off all the Betadine junk off my stomach/chest area, I kept trying to wipe off these red dots on my side too, turns out they were all holes where they had inserted the guide needle unsuccessfully. They use an ultra sound machine to guide the needle and when they find the right spot, then they go in with the heavy machinery.

The first day/night in the hospital the pain wasn't too bad, when someone is offering you Morphine through an IV, it's kind of hard to say no. I stayed drugged on Morphine for about 12 hours, which is a fast acting drug, so it did not provide me with much more than an hour or 2 of relief at a time. I tried taking oral pain meds that would last longer but I couldn't hold anything down and I just ended up throwing them up. The pain just kind of faded away by this morning and I was up and about with no problems and I managed to hold down some good old Southern grits for breakfast. I crashed when I got home, I think I slept for almost 4 hours, it was soooo nice to be back in my bed. The best thing about the PVE is that it relieved my cancer pains which were crippling me for the last week. I am so happy to be pain free right now, I hope I don't jinx it! Thanks again for everyone's support and words of encouragement. I hope to be back on the island for an extended stay in about 4 weeks, I will let you know when my surgery date is finalized.

Tomorrow is the Portal Vein Embolization at 10:30. Joel will send word when we get out and hopefully someone will guest blog for me. We should be in our room around noon and I am only supposed to spend one night on the island. Thanks for all of your kind words of support.

I managed to get through today without any painkillers. I didn't get too much sleep last night. Right when I dozed off a big storm hit and woke me up with a ton of thunder and knocked our power out for 5 hours! So it was a balmy 85 degrees in our house this morning, not conducive to sleeping. I am about to hit the pain meds, I toughed it out as long as I could. I think the pain is a little better, my liver has stopped hurting so bad and now all my pain is concentrated in the top of my right shoulder, in between my neck and the top of my arm.

I got a wonderful gift today from my friend, Evangelina, it was from the lavender farm in Cape Cod. It was a lavender soothing eye pack and a lavender and buckwheat filled cozy thingy you can heat up in the microwave. I cannot tell you how perfect the timing was, I heated them both up immediately and actually relaxed enough to take a nap. It helped soooo much, thanks Codders!

I think the past week's events finally caught up to me today. I planted myself in the surgeon's office this morning b/c I have been in excruciating pain the last 2 days. I have been going crazy worrying it is b/c of a complication from the surgery. They hustled me down for a CAT scan just to make sure nothing was wrong. They have already reviewed the scan results and everything looks fine to them, but getting to this point took a long time! I didn't eat all day and had nothing to drink, except Barium. The CAT scan was a 4 hour ordeal which included a fire alarm and me calling the tech a jerk, which he truly deserved. After 8 hours on the island, I finally escaped in tears and in horrendous pain. I have medicated myself and finally eaten something and I feel much better. So, I am having cancer pain and I am going to suck it up b/c I am lucky enough to have been pain-free for the last 4 months. It just makes this surgery all the more worth while!

We are still on for the PVE on Monday and we will have to spend the night in the pokey again for the 3rd time in 10 days. They just can't get enough of me up there!

I haven't slept for more than 3 hours at a time since Friday night! My body is soooo exhausted, but my brain has other plans for me! I think I forgot to mention that the "blood patch" process required an insane amount of caffeine delivered through an IV, so for 24 hours in the hospital I received 500 mg of caffeine every 8 hours. So, you can literally have a caffeine IV, good to know!

Part of my responsibility after being discharged is consuming 4-5 caffeinated beverages a day, along with staying "very hydrated" which is an oxymoron b/c caffeine is a diuretic! I have to do this for 5 days, I have been caffeine-free since November and the least bit of it makes me wired. I didn't eat for 7 days, so I lost 15 pounds last week and I had my first meal yesterday at 4:00, so the last thing I want to do is drink all this crazy caffeine, it is really messing with my stomach and my head! Okay, I will quit whining now, I am so freaking tired and crazy hyper at the same time, I think Joel is about ready to ship me off somewhere for the next few days. Also, my cancer pain has returned fast and furious, as soon as I get rid of one thing, along comes the next! It feels like my liver is trying to escape out of my ribcage and I have referred pain in my shoulder and neck! So, I am on pain-killers, sleep meds, and caffeine and I am pretty sure they are all canceling each other out, I am just high on life! Happy Cinco de Mayo manana!

We're finally home! We got home last night around 7:30 after a little more than 24 hours in the MDACC hospital. Here's the condensed version...

When they did the epidural, in preparation for the big liver resection, that didn't happen, the anesthesiologist thought it would be good fun to give me a rookie understudy to access his first epidural. He was Dr. McDreamy, so I was fine with it, after I had a little happy juice. You can't be completely out for the epidural b/c you have to sit still in an uncomfortable position while they play around in your spinal cord. Dr. McDreamy didn't bring his "A" game for this one, he stabbed around in there at least 8 times (from the puncture wound count on my spine), one time the entire left side of my body seized and my left leg jumped straight up off the table! At this point, I started to get a little worried, he kept hitting my bones, which I could hear and feel each time. I was asking if there was anything I could be doing different to help out, I could feel blood running down my back and the head anesthesiologist finally made him stop and she took over and of course had it in 5 seconds! It was pure torture and the last thing I remember before being completely knocked out for the "big surgery".

After I began to come out of the anesthesia after the not so big surgery, my head, neck, and shoulders felt like they had been fused together and I was wearing cast iron football shoulder pads. I had no movement in my neck and I could only lay flat on my back without a pillow to get somewhat comfortable. I just figured they had me in some crazy position during surgery and I was just sore. Then when I started weaning myself off the pain meds the headache finally became evident. If I sat up, I threw up, that was a given. The name headache or migraine does not do justice to the excruciating pain this monster was inflicting upon me!

Finally, Monday came around and it was time for the PVE, I had felt somewhat normal for a few hours on Sunday so I thought I was good to go. Monday, had different plans for me. I felt worse than the previous 4 days combined and they moved our 11:00am appt. to 2:30 without telling us so we were on the island ready to go at 10:30 stranded, for who knows how long. I couldn't even walk, I was hunched over my barf bucket in the wheelchair trying to avoid the food cart that seemed to be every where we turned! Joel got a hold of the Physician's Assistant and he said he was going to have an Anesthesiologist call us b/c something didn't sound right to him. So we camped out at our good friend Sara's house that is only 5 minutes from the med center so we could get out of there but still be close by, I crashed on the couch. At some point it was decided there was no PVE for me that day, so around 4 I mustered up the strength to try and make it through the horrendous car ride home. The minute we drove into our neighborhood, the anesthesiologist called and all I could hear Joel say was "Oh God", several times. I knew that wasn't good! I had barely made it all the way home without getting sick, so I went in the house, got sick and got back in the car to go back up to the hospital (30 minute drive).

Turns out I had a "Post Dural Spinal Headache", they punctured the membrane surrounding my spinal cord during the epidural and my spinal fluid was leaking out and making me violently ill along with the most ridiculous headache you could ever imagine! So, from the middle of my back up to my brain (your brain floats around in your spinal fluid too)was bone dry in the fluid department and I could hardly move, I was convinced my eyeballs were trying to free themselves from my head! I later learned that the lack of fluid causes the optic nerves to literally "pull" on your eyeballs from inside! I can barely type it without cringing in pain! The remedy for this fun stuff is called a Blood Patch. They make you hunch over again in that awful position and draw 2 syringes of blood from your arm, almost from my foot b/c I was so dehydrated, then they go a few spaces higher from your "leak" and do another epidural access but this time they inject your blood into the space in hopes that it will pool around the hole and the blood will clot and seal the hole. This is no fun and 5 times worse than the actual botched epidural itself! They made Joel leave the room b/c they have so many people faint on them from watching! I immediately felt the headache leave my body, it was a freaking miracle! I had to lie flat on my back for 45 minutes, which I went ahead and did for almost 2 hours! If the first blood patch is unsuccessful (95%), then a second one is done with about a 99% success rate. I was praying hard that there was not another blood patch in my near future!

So, I hope I caught everyone up on my lovely week! I am home and I am feeling like a new person. My Portal Vein Embolization is scheduled for Monday morning at 10:30, and the "big surgery" should follow in a month, keep your fingers crossed for us! Thanks for everyone's support and prayers! We will keep on trucking!

Guest Blogger: Kelley Stephens

Kelly and Joel are doing much better today. After a rough couple of days
which included a horrendous spinal headache, Kelly is on the mend! In order
to alleviate the headache, they did a blood patch procedure this morning.
Basically, they inject blood near the spinal cord membrane puncture to plug
the site. Think: fix-a-flat. I spoke to Kelly following the procedure and
she sounded great. No word yet on when she�ll get off the Island.

As a result of this newest development, Kelly did not have the PVE (Portal
Vein Embolism) but will likely have that procedure within the next week.

Continued thanks for all your thoughts and prayers!