Casey has been feeling great!!! We had a great long holiday weekend with the kids and our families!!
His next chemotherapy is December 4th. Hopefully, the nausea won't be so bad this time! Cross your fingers!!
Monday, November 30, 2009
Monday, November 23, 2009
On a Roll
Casey is addicted to painting! LOL! He is painting another accent wall! We loved the color so much we decided to paint one of the living room walls! He's awesome with a paint roller!!
He feels really good today...not a hint of nausea all day!! He says he knows he's got this thing beat because he feels and looks so much better! He has even gotten compliments from his friends and coworkers!! He is filling back in quite nicely! He had lost so much weight in such a short amount of time! Thirty pounds to be exact! He has gotten his appetite back! Last night he scarfed down a triple meat triple cheese Whataburger!!!
He feels really good today...not a hint of nausea all day!! He says he knows he's got this thing beat because he feels and looks so much better! He has even gotten compliments from his friends and coworkers!! He is filling back in quite nicely! He had lost so much weight in such a short amount of time! Thirty pounds to be exact! He has gotten his appetite back! Last night he scarfed down a triple meat triple cheese Whataburger!!!
Sunday, November 22, 2009
Productive Weekend!
Casey felt great this weekend...with the exception of late last night when he felt a little nauseous and this afternoon when he threw up his breakfast and lunch! We were able to have a very productive and FUN weekend with the kids!
We went to the last DAYFL game between the Bengals and Mean Green and watched Asher receive the Best Defensive Player of the Year Award!! Woo hoo!! Then we went to Texas Roadhouse for lunch and afterwards went to watch A Christmas Carol in 3D!! Then for a few minutes at the park!
Today Casey was in the mood to paint!! Yay for me! Because I have been wanting an accent wall FOREVER!!! It's looking good!!! I'm so happy that he feels good enough to paint, not to mention good enough to do all the fun things we did this weekend!!
Friday, November 20, 2009
Morning Sickness! ;o)
Casey is not having a very good morning today. He just told me he threw up his toe nails! And he was at work! Poor thing! He said he felt the sudden nausea come on like a freight train! :-( But he felt a little better afterwards!
Thursday, November 19, 2009
Casey Losing His Hair!
On November 18, 2009, Casey began to notice he was losing his hair... in clumps! He had an itch on his head so he scratched it...next thing you know his trashcan at work is full of hair! Ewww.....
The back of his head looked like a dog's with mange! Ha Ha! If you look closely at the picture you can almost see a butterfly!
So...he decides its time to shave his head! Not a bad look for him. I think his nickname will be Mr. Clean from now on!
The back of his head looked like a dog's with mange! Ha Ha! If you look closely at the picture you can almost see a butterfly!
First Chemo Treatment
Casey's first chemo treatment was November 6, 2009. About a month or more later after being diagnosed with cancer! Ugh! But I won't talk about that again! It took 5-6 hours. He laid in a bed in a small room that was hot as hell! And then the nurse offered him a heated blanket! LOL! Ummm...no thanks...but can you turn on the AC in this joint!? I sat in the chair across from his bed and played on Facebook almost the entire time! That's when I discovered some of the iPhone apps that I have been making crazy pictures with! It's so fun! The chemo procedure was practically painless for him...with the exception of the nurse hurting him when inserting the IV into a vein in his hand! OUCH! His vein is ROCK hard right now!
CURRENT UPDATE-(PART 2) THE CHEMO DRAMA
We thought it was great that the doctors finally determined what kind of cancer Casey had and that it had originated from the donor. This meant that his chemo treatments could be started!!! His Oncologist told him he knew of the perfect drug to use on him when he received his chemo. It was something that would target the blood vessels in the tumor and cut off all circulation to it, therfore kill the tumor little by little. Sounds awesome! Let's do it! An appointment was made for the following week. We have waited this long, one more week couldn't hurt him. Well, one more week of waiting turned into another MONTH of waiting!!A couple of days before his chemo appointment, the nurse called Casey to tell him that his insurance had not approved one of the chemo drugs. She was pretty sure it would be approved before his appointment but just in case she said do not plan on showing up unless she calls back to confirm. She did not call back! We called every week and each time we were told that the insurance still had not approved it yet but for sure by the end of the week. We got the same ol' speech every time we called...at least twice a week!! For the next three weeks!!! Come on people!! I hate insurance companies! We called the doctors and we called the insurance but got nowhere!! The insurance assured us the supervisor would make a decision soon and that they knew this was important! Whatever! If they knew that, why are they taking so long to decide on something that will save a man's life?! Some supervisor sitting at a desk was playing God with Casey's life! It was a slap in the face...almost as if they were dangling Casey's life over his head just within reach! Friends and family became very disturbed by all this. Some of them even decided to take matters into their own hands!
One good piece of news was bestowed upon us during this chemo drama! Casey's liver transplant surgeon was so saddened by his situation and felt so bad about transplanting a tainted liver in him that he did everything he could to get him on the agenda for the Tranplant Committee Meeting. Dr. C fought tooth and nail, but the committee agreed to allow Casey to go through evaluation for future re-transplantation. They don't usually do transplants on patients who have liver cancer. Once Casey had undergone at least six chemo treatments, they would take more tests to see if the tumor had shrunk or disappeared...and then they would be able to do another liver transplant!! Hopefully this time it would be a PERFECT liver! If only we could get the stupid insurance to approve the chemo!!
About a month later, after Casey, family, friends, and the doctors raised hell with the insurance company, they FINALLY approved the chemo treatments!!! Hallelujah!! Can I get an AMEN?!
One good piece of news was bestowed upon us during this chemo drama! Casey's liver transplant surgeon was so saddened by his situation and felt so bad about transplanting a tainted liver in him that he did everything he could to get him on the agenda for the Tranplant Committee Meeting. Dr. C fought tooth and nail, but the committee agreed to allow Casey to go through evaluation for future re-transplantation. They don't usually do transplants on patients who have liver cancer. Once Casey had undergone at least six chemo treatments, they would take more tests to see if the tumor had shrunk or disappeared...and then they would be able to do another liver transplant!! Hopefully this time it would be a PERFECT liver! If only we could get the stupid insurance to approve the chemo!!
About a month later, after Casey, family, friends, and the doctors raised hell with the insurance company, they FINALLY approved the chemo treatments!!! Hallelujah!! Can I get an AMEN?!
CURRENT UPDATE- 2009 (PART 1)
Okay, this is it. Finally, what I have been working up to in my last five posts. We were on the road to recovery...rocking and rolling...because that's how we roll! We could see Casey's one year anniversary in the horizon! Ooops...he hit a bump!
About three weeks before his appointment for his one year evaluation, he started feeling very very tired and had a high fever on and off. He had a pain in his lower abdomen and would break out in sweats at night. He called his tranplant coordinator numerous times but they did not seem too concerned and just referred him to his family doctor. He saw his family doctor and they could find nothing wrong with him. They gave him a shot and some antibiotics and sent him on his way. A week later, nothing had changed. In fact, he got worse. During a routine infusion by his research nurse at Baylor-Dallas, they checked him out there as well. But they could not find any reason why he would have fever and be in pain. So Casey just decided to deal with it and hope for the best.
The day finally came for his one year evaluation. It was a long day filled with xrays, scans, mri's, blood tests, and the dreaded biopsy. He addressed his concerns with his fever and pain once again with the nurses and doctors so they decided to do a few more tests, STAT, and rush the biopsy results. A few days later, Casey gets a call from his doctor who did his transplant. He told him he was looking at the results of the biopsy and he noticed some "funky" cells. Yes, he actually said FUNKY! He was being referred to an Oncologist. Okay, great...maybe this oncologist can finally tell us whats going on! Wait a minute...he just referred Casey to an ONCOLOGIST! I had to stop and think a minute. What kind of doctor is an oncologist? As I sit there and scratch my head it hits me like a ton of bricks! OMG...an Oncologist is a doctor who studies, diagnoses, and treats cancerous tumors!! There was something that the liver transplant surgeon wasn't telling us about what they found during the biospy!! Funky cells could mean many different things...but not CANCER! We were hopeful but prepared for the worst.
The following week Casey and I visited the Oncologist. The minute the doctor walked in with his solemn facial expression, I started to cry! He spent over an hour talking to us but not once did he just say, "Casey, you have Cancer." It's like he just assumed that we knew that he had cancer and was just informing us what kind of cancer it could be and what kind of cancer it wasn't. I was totally disturbed by this, not to mention utterly distracted by the doctors hair! It was so wirey and crazy looking! He kind of looked like Yahoo Serious in that movie Young Einstein! I appreciated him taking the time to educate us but I just wanted to get out of there so bad! I just felt like saying, "Okay, we KNOW he has cancer...so when can we get treatment started!"
During our one hour or more converstion with Einstein, we learned that he had a tumor or tumors interlaced throughout his entire left lobe. He was not certain what kind of cancer Casey had because the pathology of the tumor did not look like any cancer he had ever seen! The pathology stated that it was LUNG cancer...but yet there was no tumors on his lung only on the liver. Great...leave it to Casey to be the mystery patient. He said he wasn't sure which route to take with chemo treatment since he wasn't sure what kind of cancer he had or where it originated. So he ordered a PET Scan and more blood work and said he would call us with the results later that week. Great, we must wait yet again! By the way, a PET Scan is like a CT Scan. The PET Scan is done over entire body and determines whether there is cancer located anywhere else.
We had many unanswered questions. No doctor could give us a straight answer as to how someone who was previously so healthy and had just received a new liver the year before could all of a sudden have a tumor on his liver that had overtaken his entire left lobe?! Casey was constantly going to get blood work done the year before and was carefully watched by his family doctor and by the doctors at Baylor. Turns out, the Oncologist and Liver Transplant Surgeon were thinking the same thing we were...could it have come from his liver donor? That was the only answer we could think of to my unanswered question bolded above! The doctors decided to do a test that would determine if the cancer had come from the liver donor...sort of like a paternity test for the tumor. Since the donor was a female, this test would be very easy to determine...cut and dry.
The following week, we were called with the PET Scan results. There was no cancer anywhere else in his body!! Thank GOD! So if his lung cancer in the liver did not come from his own lungs, that could only mean one thing. It must have come from the donor! Sure enough...a few days later we find out that it did come from the donor liver! Isn't that just great!? What are the freaking odds of being transplanted with a liver almost as bad as the one you had before!! This was somewhat good news, though. Since they knew how Casey got his cancer and where it originated, they were able to determine what kind of chemo treatement was best for him and get him started right away! So we thought!!
About three weeks before his appointment for his one year evaluation, he started feeling very very tired and had a high fever on and off. He had a pain in his lower abdomen and would break out in sweats at night. He called his tranplant coordinator numerous times but they did not seem too concerned and just referred him to his family doctor. He saw his family doctor and they could find nothing wrong with him. They gave him a shot and some antibiotics and sent him on his way. A week later, nothing had changed. In fact, he got worse. During a routine infusion by his research nurse at Baylor-Dallas, they checked him out there as well. But they could not find any reason why he would have fever and be in pain. So Casey just decided to deal with it and hope for the best.
The day finally came for his one year evaluation. It was a long day filled with xrays, scans, mri's, blood tests, and the dreaded biopsy. He addressed his concerns with his fever and pain once again with the nurses and doctors so they decided to do a few more tests, STAT, and rush the biopsy results. A few days later, Casey gets a call from his doctor who did his transplant. He told him he was looking at the results of the biopsy and he noticed some "funky" cells. Yes, he actually said FUNKY! He was being referred to an Oncologist. Okay, great...maybe this oncologist can finally tell us whats going on! Wait a minute...he just referred Casey to an ONCOLOGIST! I had to stop and think a minute. What kind of doctor is an oncologist? As I sit there and scratch my head it hits me like a ton of bricks! OMG...an Oncologist is a doctor who studies, diagnoses, and treats cancerous tumors!! There was something that the liver transplant surgeon wasn't telling us about what they found during the biospy!! Funky cells could mean many different things...but not CANCER! We were hopeful but prepared for the worst.
The following week Casey and I visited the Oncologist. The minute the doctor walked in with his solemn facial expression, I started to cry! He spent over an hour talking to us but not once did he just say, "Casey, you have Cancer." It's like he just assumed that we knew that he had cancer and was just informing us what kind of cancer it could be and what kind of cancer it wasn't. I was totally disturbed by this, not to mention utterly distracted by the doctors hair! It was so wirey and crazy looking! He kind of looked like Yahoo Serious in that movie Young Einstein! I appreciated him taking the time to educate us but I just wanted to get out of there so bad! I just felt like saying, "Okay, we KNOW he has cancer...so when can we get treatment started!"
During our one hour or more converstion with Einstein, we learned that he had a tumor or tumors interlaced throughout his entire left lobe. He was not certain what kind of cancer Casey had because the pathology of the tumor did not look like any cancer he had ever seen! The pathology stated that it was LUNG cancer...but yet there was no tumors on his lung only on the liver. Great...leave it to Casey to be the mystery patient. He said he wasn't sure which route to take with chemo treatment since he wasn't sure what kind of cancer he had or where it originated. So he ordered a PET Scan and more blood work and said he would call us with the results later that week. Great, we must wait yet again! By the way, a PET Scan is like a CT Scan. The PET Scan is done over entire body and determines whether there is cancer located anywhere else.
We had many unanswered questions. No doctor could give us a straight answer as to how someone who was previously so healthy and had just received a new liver the year before could all of a sudden have a tumor on his liver that had overtaken his entire left lobe?! Casey was constantly going to get blood work done the year before and was carefully watched by his family doctor and by the doctors at Baylor. Turns out, the Oncologist and Liver Transplant Surgeon were thinking the same thing we were...could it have come from his liver donor? That was the only answer we could think of to my unanswered question bolded above! The doctors decided to do a test that would determine if the cancer had come from the liver donor...sort of like a paternity test for the tumor. Since the donor was a female, this test would be very easy to determine...cut and dry.
The following week, we were called with the PET Scan results. There was no cancer anywhere else in his body!! Thank GOD! So if his lung cancer in the liver did not come from his own lungs, that could only mean one thing. It must have come from the donor! Sure enough...a few days later we find out that it did come from the donor liver! Isn't that just great!? What are the freaking odds of being transplanted with a liver almost as bad as the one you had before!! This was somewhat good news, though. Since they knew how Casey got his cancer and where it originated, they were able to determine what kind of chemo treatement was best for him and get him started right away! So we thought!!
Home After Transplant-2008
Casey did so well after his liver transplant that they sent him home only five days later!!! Like he told the doctors...that's how he rolls!! We both had NO idea what was in store!! We were sent home with a bag full of meds and a binder full of information. His diet needed to change completely, not to mention his lifestyle! No alchohol, no Red Seal Tobacco (dip), no going out in public without a mask over his nose and mouth, no lifting over ten pounds, etc... The hardest part for Casey was the NO RED SEAL!! We had to find other forms of oral fixation for him! Tried giving him candy to suck on or gum to chew on...that didn't work! So he wore a nicotine patch for a while...that somewhat worked. But eventually, he kicked the nasty habit on his own! Thank God! Another lifestyle change that we could both do without was the three trips per week to Baylor Medical Center in Dallas. He had to go get blood drawn to make sure he was doing ok and not rejecting the new liver. But as long as we are together, we enjoy whatever it is we have to do!
He was prescribed numerous medications. If you laid all the bottles out in a row, I swear it would be a mile long! The most important meds are his Anti-Rejection pills. He has to take these FOR THE REST OF HIS LIFE. These meds are immuno-suppresives. They suppress his immune system so that his body won't try to reject the "foreign" liver in his body. Because he takes these pills, he is very susceptive to any and every kind of virus. We have to very careful and do our best to keep germs away! We have a bottle of Germ-X around every corner at our home! He was also prescribed steroids. Boy, I could really do without him taking steroids! In the beginning, he had to take very high doses. OMG, talk about having Man-o-pause...he was very moody! I almost couldn't handle him and had to stop and count to ten and remember what he was going through before tearing his head off! (Love you, Casey!) Because he took so many steroids, he had steroid-induced diabetes. He had to watch what he ate very closely to make sure his blood sugar didn't get too high. He also had to drink diet drinks and stay away from energy drinks. This is how and when he got addicted to Diet Dr. Pepper. Yuck! I won't bore you with all the other meds he was prescribed...just know that there were numerous pills and he had to use a huge pill box to keep them all straight and help him remember what times to take all of them!
We were well on the way to recovery when we hit a bump in the road two weeks later. One of his many blood tests revealed that his body was rejecting his liver! Of course we were devastated! What did this mean? Was he going to make it? Did he need another liver?! Oh no! Little did we know, that all that would need to take place to correct this was another 5 day stay in the hospital, a biopsy (he hates those) and an adjustment on his meds! Whew! Close call! The doctors just gave him even more steroids...yay for me...and raised his anti-rejection dosage.
He did very well after that. He had no more rejections. His lifestyle got back to normal as the days progressed. After the first few months or so after transplant, he no longer had to wear a mask and he was able to go back to work part time! Did I mention... during his initial two week stay in the hospital and then throughout his transplant surgery and post-op recovery I was not going to work? I had already missed about a month of work and then had to be gone another month and a half taking care of him at home afterwards! I took one LONG vacation. Not that it was really a vacation! Thank God we both had the time to take!
He worked part time for about a month and then went back to full time. Everything was almost back to normal. He still had to go back and forth to Baylor-Dallas three times a week...those trips eventually tapered down just like his meds did. Thankfully, his mood swings also tapered down!! But he still did suffer from some pain in the scarred area (He has a really cool scar in the shape of the Mercedes Benz symbol!) and suffered from insomnia because of all the steroids he was taking. It was nothing a little pain pill and sleeping pill couldn't handle! What I couldn't handle was how goofy he acted when he was on his "ambien high!" It was sometimes scary! He would say the most ridiculous things and see people or animals in our home. One night, he saw a big brown bear while we were lying in bed...or as he called it "that sneaky bear!" Then another night he swore that I had the devil in me and was trying to exorcise me while fighting the big muscular guy behind me who was looking at him funny! Good times, good times!
Poor Casey...he went from being totally healthy to being deathly ill...from healthy weight to skin and bones...and then way back up to past his healthy weight! LOL! Because of the steroids he was taking, he always felt hungry! He ate to his little hearts content! Because of his weight fluctuation, he now has jeans from sizes 30-36! Ha ha! There was lots of testing involved here and there throughout his recovery period and he wouldn't need another dreaded biospy until the one year anniversary of his transplant. His one year mark was October 2009.
He was prescribed numerous medications. If you laid all the bottles out in a row, I swear it would be a mile long! The most important meds are his Anti-Rejection pills. He has to take these FOR THE REST OF HIS LIFE. These meds are immuno-suppresives. They suppress his immune system so that his body won't try to reject the "foreign" liver in his body. Because he takes these pills, he is very susceptive to any and every kind of virus. We have to very careful and do our best to keep germs away! We have a bottle of Germ-X around every corner at our home! He was also prescribed steroids. Boy, I could really do without him taking steroids! In the beginning, he had to take very high doses. OMG, talk about having Man-o-pause...he was very moody! I almost couldn't handle him and had to stop and count to ten and remember what he was going through before tearing his head off! (Love you, Casey!) Because he took so many steroids, he had steroid-induced diabetes. He had to watch what he ate very closely to make sure his blood sugar didn't get too high. He also had to drink diet drinks and stay away from energy drinks. This is how and when he got addicted to Diet Dr. Pepper. Yuck! I won't bore you with all the other meds he was prescribed...just know that there were numerous pills and he had to use a huge pill box to keep them all straight and help him remember what times to take all of them!
We were well on the way to recovery when we hit a bump in the road two weeks later. One of his many blood tests revealed that his body was rejecting his liver! Of course we were devastated! What did this mean? Was he going to make it? Did he need another liver?! Oh no! Little did we know, that all that would need to take place to correct this was another 5 day stay in the hospital, a biopsy (he hates those) and an adjustment on his meds! Whew! Close call! The doctors just gave him even more steroids...yay for me...and raised his anti-rejection dosage.
He did very well after that. He had no more rejections. His lifestyle got back to normal as the days progressed. After the first few months or so after transplant, he no longer had to wear a mask and he was able to go back to work part time! Did I mention... during his initial two week stay in the hospital and then throughout his transplant surgery and post-op recovery I was not going to work? I had already missed about a month of work and then had to be gone another month and a half taking care of him at home afterwards! I took one LONG vacation. Not that it was really a vacation! Thank God we both had the time to take!
He worked part time for about a month and then went back to full time. Everything was almost back to normal. He still had to go back and forth to Baylor-Dallas three times a week...those trips eventually tapered down just like his meds did. Thankfully, his mood swings also tapered down!! But he still did suffer from some pain in the scarred area (He has a really cool scar in the shape of the Mercedes Benz symbol!) and suffered from insomnia because of all the steroids he was taking. It was nothing a little pain pill and sleeping pill couldn't handle! What I couldn't handle was how goofy he acted when he was on his "ambien high!" It was sometimes scary! He would say the most ridiculous things and see people or animals in our home. One night, he saw a big brown bear while we were lying in bed...or as he called it "that sneaky bear!" Then another night he swore that I had the devil in me and was trying to exorcise me while fighting the big muscular guy behind me who was looking at him funny! Good times, good times!
Poor Casey...he went from being totally healthy to being deathly ill...from healthy weight to skin and bones...and then way back up to past his healthy weight! LOL! Because of the steroids he was taking, he always felt hungry! He ate to his little hearts content! Because of his weight fluctuation, he now has jeans from sizes 30-36! Ha ha! There was lots of testing involved here and there throughout his recovery period and he wouldn't need another dreaded biospy until the one year anniversary of his transplant. His one year mark was October 2009.
Wednesday, November 18, 2009
Liver Transplant- October 2008
I seemed to have gone off topic...sorry! While in the hospital , he underwent extensive testing and evaluation to make sure he could withstand a long surgery such as a liver tranplant. He passed with flying colors and was placed on the transplant list! Due to the extreme circumstances and casey's low liver function, he was placed on the list right away. They placed him on the list according to his MELD score (Model for End-Stage Liver Disease). The MELD calculator is a numerical scale that is currently used for liver allocation. The MELD score is based on a patient's risk of dying while waiting for a liver transplant and is based on objective and verifiable medical data. It runs on a scale of 6 to 40; the higher the score the more gravely ill. Casey's score was high enough that he had a liver the very next day after being placed on the list!!!! We barely even had time to get home and unpack from our two week hospital stay before they called Casey at 9:20 am the next day and said they had a liver for him and how soon could he get back to Baylor. I was at work when Casey called me...he sounded so non-chalant. He says, "Well, I guess you better get home, they found me a liver." I was like, "WHAT? ALREADY?! I'll be right there!!" I drove like a bat out of hell from Carrollton to Denton. I got home in 20 minutes; it should usually take 30-35. Oops...I may have broke the law a few times by speeding, running red lights and stop signs...but I had a REAL EMERGENCY people!! I nervously packed a few things for myself and for Casey and drove like another bat out of hell back up to Baylor-Dallas.
Once we got to the hospital, we were bombarded with several nurses who checked his vitals and instructed him to change into his lovely hospital gown. Soon after, we were flooded with research nurses, doctors, surgeons, and phlebotimists. Can we say overwhelming?! One nurse is taking his vitals, another is telling him what to expect, while another two additional research nurses are talking to him about getting into their research study for new anti-rejection medication. In the midst of trying to digest everything going on, we had to make a quick decision on whether or not to join the study. (We decided to join the study...which turned out to be a good deal because we got some of the meds for free and were reimbursed for another.) As if that wasn't chaos enough, another nurse was taking x-rays of his chest and abdomen while another research nurse came in trying to get him to join a different study! After everyone had left, the hospital chaplain came in with paperwork for a medical directive since Casey did not have a will. We filled that out and then she prayed with us as we all held hands since it was almost time for Casey to leave for pre-op. Once he was wheeled away to the pre-op room around 6:30 pm, my mother-in-law and I waited with him for about an hour before he was actually taken into the operation room. I was so scared but I was confident that he would come out of this okay!!!! Casey was a brave soldier and was cutting up all the way up until he was wheeled away to the O.R.. We were told that the surgery would take 6-8 hours and that my mother-in-law and I could stay in his room until the surgery was complete. The nurse said that the doctor would call his room and let us know when the surgery was finished. Whether we got to stay in his room is another story! Let's just say my mother-in-law and I were misinformed and were kicked out around midnight by Nursezilla! We spent the night in the lobby with a few other people with no pillows or blankets! I was very bitter!!! I wouldn't have been able to sleep anyway since I was so worried!
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How It All Began-2008 CONTINUED
I'm going to pick up where I left off. I didn't mean to keep everyone hanging! His two week stay at Baylor-Dallas was torture! It was test after test, bloodwork, scans, etc...EVERYDAY!! I stayed with Casey every day and every night. I was NOT going to leave his bedside!! We became very acquainted with all the doctors and nurses over the two week stay. Doctors were just amazed at how young Casey was and kept going in his room to ask him all sorts of questions to try to get to the bottom of his illnes. Someone that young and healthy should not be having the type of liver issues that he was having! They were really really confused. Seeing them scratch their heads in disarray was not very comforting! They had no clue why Casey was so sick or why his liver function was so low!
All this confusion and "not knowing" was taking a toll on me! Did he have cancer? I could not bare the thought!! I would quickly stop thinking about it possibly being cancer and move on to better thoughts...was his illness minor and treatable with antibiotics and other medications? How long is he going to be hospitalized? Is he going to make it? There were so many things going through my head...day after day...day in and day out...in a tiny room...having to sleep on an uncomfortable recliner...with doctors and nurses going in and out at all hours of the morning and night...NO SLEEP! UGH!!!!!!!!!!!!!!!!
Everything that happend during this two week stay sort of just runs together. It all seems like a blur...a living nightmare...totally surreal! Only certain events stand out in my mind...like the panic attack you all KNOW was coming after having read the above paragraph!!! I was just sitting there and all of a sudden became very fidgety and my chest felt heavy. I couldn't sit still; if I did, I had to be tapping my fingers on the window sill or tapping my foot on the floor. I had restless legs, restless arms, restless everything! I started to pace...looking out the window then turning around to look at Casey lying in bed and nervously smile at him. I couldn't let him know what I was feeling. He was going through enough already. Suddenly, I had the most outrageous urge to cry! I mean full out bawling and sobbing where I couldn't catch my breath. Then I started to hyperventilate! GREAT!!! Casey had to call the nurse in to help me! She took my blood pressure and it was very high. She basically told me just to take deep breaths and relax and to GO HOME to get some rest. I didn't want to leave Casey...but I knew he would be fine. I had to go home and take care of myself so I could be strong enough to withstand what we were both about to go through.
After the doctors tested all they could think of and still could come to no valid conclusion; they diagnosed Casey with Acute Liver Failure of Unknown Etiology. His liver was shriveled up and had only ten percent functionality when he was first admitted into Baylor. He did not have Hepatitis of any kind and the failure was not alcohol related. Doctors did not know what made his liver fail! It seemed, in some Doctors' opinions, as if some virus had attacked it, did its damage, and left! I distinctly remember two or three doctors coming in about a week and half into his hospital stay to break the news to us. I stared blankly at the doctor as he spoke, not fully comprehending the bomb he had just dropped! Casey's hepatologist, whom we will refer to as Dr. Who Doesn't Swallow His Spit (Keep reading for an explanation.), is the one who broke the news to us. I had to concentrate really hard to understand his words because of his accent, not to mention trying to get past his "open mouth slurp" after each sentence. OMG...that was annoying! Words cannot properly describe the sounds he made with his mouth while talking. The bomb he had dropped was that Casey's liver function was now only at 4% and that he was going to need a LIVER TRANSPLANT! Just having had gone through my mother's kidney transplant, this was not exactly what I wanted to hear. But, at the same time I was happy that his disease was not deadly and could be cured with a transplant. Before we knew what was wrong and that transplant was an option, the thoughts of him possibly dying were in the back of my mind. Casey remained positive, or perhaps he was just putting on a brave front for me...but after finding out that a transplant was an option and that it wasn't cancer, I was so much happier! The word CANCER was just so terminal and I was SO thankful that it was just liver failure which could be cured with a transplant. Little did I know what was going to happen a year later... "Isn't it ironic? Don't ya think?"
All this confusion and "not knowing" was taking a toll on me! Did he have cancer? I could not bare the thought!! I would quickly stop thinking about it possibly being cancer and move on to better thoughts...was his illness minor and treatable with antibiotics and other medications? How long is he going to be hospitalized? Is he going to make it? There were so many things going through my head...day after day...day in and day out...in a tiny room...having to sleep on an uncomfortable recliner...with doctors and nurses going in and out at all hours of the morning and night...NO SLEEP! UGH!!!!!!!!!!!!!!!!
Everything that happend during this two week stay sort of just runs together. It all seems like a blur...a living nightmare...totally surreal! Only certain events stand out in my mind...like the panic attack you all KNOW was coming after having read the above paragraph!!! I was just sitting there and all of a sudden became very fidgety and my chest felt heavy. I couldn't sit still; if I did, I had to be tapping my fingers on the window sill or tapping my foot on the floor. I had restless legs, restless arms, restless everything! I started to pace...looking out the window then turning around to look at Casey lying in bed and nervously smile at him. I couldn't let him know what I was feeling. He was going through enough already. Suddenly, I had the most outrageous urge to cry! I mean full out bawling and sobbing where I couldn't catch my breath. Then I started to hyperventilate! GREAT!!! Casey had to call the nurse in to help me! She took my blood pressure and it was very high. She basically told me just to take deep breaths and relax and to GO HOME to get some rest. I didn't want to leave Casey...but I knew he would be fine. I had to go home and take care of myself so I could be strong enough to withstand what we were both about to go through.
After the doctors tested all they could think of and still could come to no valid conclusion; they diagnosed Casey with Acute Liver Failure of Unknown Etiology. His liver was shriveled up and had only ten percent functionality when he was first admitted into Baylor. He did not have Hepatitis of any kind and the failure was not alcohol related. Doctors did not know what made his liver fail! It seemed, in some Doctors' opinions, as if some virus had attacked it, did its damage, and left! I distinctly remember two or three doctors coming in about a week and half into his hospital stay to break the news to us. I stared blankly at the doctor as he spoke, not fully comprehending the bomb he had just dropped! Casey's hepatologist, whom we will refer to as Dr. Who Doesn't Swallow His Spit (Keep reading for an explanation.), is the one who broke the news to us. I had to concentrate really hard to understand his words because of his accent, not to mention trying to get past his "open mouth slurp" after each sentence. OMG...that was annoying! Words cannot properly describe the sounds he made with his mouth while talking. The bomb he had dropped was that Casey's liver function was now only at 4% and that he was going to need a LIVER TRANSPLANT! Just having had gone through my mother's kidney transplant, this was not exactly what I wanted to hear. But, at the same time I was happy that his disease was not deadly and could be cured with a transplant. Before we knew what was wrong and that transplant was an option, the thoughts of him possibly dying were in the back of my mind. Casey remained positive, or perhaps he was just putting on a brave front for me...but after finding out that a transplant was an option and that it wasn't cancer, I was so much happier! The word CANCER was just so terminal and I was SO thankful that it was just liver failure which could be cured with a transplant. Little did I know what was going to happen a year later... "Isn't it ironic? Don't ya think?"
How It All Began...2008
For those of you who don't know the whole story and have no idea how or when my husband, Casey, got sick; let me start from the beginning. Those of you who are very close to us and do know the whole story should read this as well. There is a lot that went on "behind the scenes" that you may enjoy reading about. :-)
In September of 2008, Casey began to feel ill. After a night of fun and drinks with friends, he awoke to the feeling of nausea and was throwing up. This lasted pretty much all day. We both thought he was hungover from the night before and left it at that. The next few days were not any better than the day before! Okay, so he's not hungover. Maybe it was all those hot dogs and hamburgers he ate at the party? The man can put down some hot dogs like nobody's business! Maybe he got food poisoning? A couple of days later he still felt the same. He has had constant nausea and was throwing up at least three times a day and was feeling extremely fatigued. Maybe he had a touch of the stomach flu? We decided to give it a few more days...wait, HE decided to give it a few more days. I kept telling him to go to the doctor!! But you know men; they hate doctors! They would rather suffer with their ailments until they go away on their own...or until the wives drag them by the ears to the doctor's office! A few more days passed with the same symptoms as well as other very scary symptoms! Beware, the following is not for the squeamish! ;-) His urine was very dark (tea colored) and his stool was very light (clay colored). The whites of his eyes were very yellow and his skin was turning yellow as well. During this time, his friends and I nicknamed him Hilighter! Casey has always had a great sense of humor so he didn't mind! We had to do something to enlighten the situation! But in reality, we were both scared to death! This is where I had to put my foot down! I did everything I possibly could, in lieu of dragging him by the ears, to convince him to go to the doctor. I think by this time, he was so scared that I didn't have to try too terrible hard to convince him.
He finally made an appointment with his family doctor. His doctor took lots of blood work. The blood work results came back the following week showing liver abnormalities. He was referred to an Imaging Clinic to get a CT Scan done on his liver. A few days later, after the CT scan results arrived, his doctor referred him to a Hepatologist. I went with him to his hepatologist appointment a few days after he was referred. After the doctor looked at his CT Scan and blood work, he IMMEDIATELY wanted to admit him into the hospital! Okay, now we are both OFFICIALLY scared!! What the heck is going on?! The whole day was a blur! He was rushed through admitting and into a room so fast it made my head spin!! He was at Denton Regional for two days before they decided to send him via Ambulance to Baylor-Dallas where they have the best liver doctors and a better facility to handle liver diseases. Whoa...I just said Liver Disease! Yes, we were told that he had some kind of liver disease! I remember the first time I heard the doctor tell us he had some sort of liver disease, I almost hit the floor! I was scared beyond words at that point! Back to the ambulance...he was placed in an ambulance and was taken to Baylor-Dallas...and no, they did not use lights and sirens! :-( It was scary, nonetheless, to see him wheeled on a stretcher into an ambulance. They would not let me ride with him; so my mother-in-law drove me and we followed the ambulance. You could see Casey's little head popping up trying to look out the ambulance windows to see if we could see him! He's so darn cute!
So we finally get to Baylor-Dalllas. It was a long ride, but at least we didn't have to go through the admitting process downstairs. He was taken straight to his room. It was not a pleasant looking room at all! It was very compact and old looking! What happens next was very disturbing and overwhelming! His room was BOMBARDED with doctors, nurses, interns, volunteers, research nurses, and clergymen!! I was totally freaking out! There were as many as 5 at at a time in his room...with paperwork out the wazoo! They hurriedly rushed in and out and in and out with questions after endless questions and paperwork! Many questions and paperwork were identical from what he filled out at Denton Regional. Doctor after Doctor and nurse after nurse with the SAME questions! OMG! When was this going to end? And when were they going to tell me what was wrong with my husband?! They did test after test, scan after scan, MRI, xrays... and they drew numerous tubes of blood DAILY! Yes, I said DAILY. Poor Casey was in the hospital for two weeks before they figured out what was wrong with him!! Stay tuned for his diagnosis!
In September of 2008, Casey began to feel ill. After a night of fun and drinks with friends, he awoke to the feeling of nausea and was throwing up. This lasted pretty much all day. We both thought he was hungover from the night before and left it at that. The next few days were not any better than the day before! Okay, so he's not hungover. Maybe it was all those hot dogs and hamburgers he ate at the party? The man can put down some hot dogs like nobody's business! Maybe he got food poisoning? A couple of days later he still felt the same. He has had constant nausea and was throwing up at least three times a day and was feeling extremely fatigued. Maybe he had a touch of the stomach flu? We decided to give it a few more days...wait, HE decided to give it a few more days. I kept telling him to go to the doctor!! But you know men; they hate doctors! They would rather suffer with their ailments until they go away on their own...or until the wives drag them by the ears to the doctor's office! A few more days passed with the same symptoms as well as other very scary symptoms! Beware, the following is not for the squeamish! ;-) His urine was very dark (tea colored) and his stool was very light (clay colored). The whites of his eyes were very yellow and his skin was turning yellow as well. During this time, his friends and I nicknamed him Hilighter! Casey has always had a great sense of humor so he didn't mind! We had to do something to enlighten the situation! But in reality, we were both scared to death! This is where I had to put my foot down! I did everything I possibly could, in lieu of dragging him by the ears, to convince him to go to the doctor. I think by this time, he was so scared that I didn't have to try too terrible hard to convince him.
He finally made an appointment with his family doctor. His doctor took lots of blood work. The blood work results came back the following week showing liver abnormalities. He was referred to an Imaging Clinic to get a CT Scan done on his liver. A few days later, after the CT scan results arrived, his doctor referred him to a Hepatologist. I went with him to his hepatologist appointment a few days after he was referred. After the doctor looked at his CT Scan and blood work, he IMMEDIATELY wanted to admit him into the hospital! Okay, now we are both OFFICIALLY scared!! What the heck is going on?! The whole day was a blur! He was rushed through admitting and into a room so fast it made my head spin!! He was at Denton Regional for two days before they decided to send him via Ambulance to Baylor-Dallas where they have the best liver doctors and a better facility to handle liver diseases. Whoa...I just said Liver Disease! Yes, we were told that he had some kind of liver disease! I remember the first time I heard the doctor tell us he had some sort of liver disease, I almost hit the floor! I was scared beyond words at that point! Back to the ambulance...he was placed in an ambulance and was taken to Baylor-Dallas...and no, they did not use lights and sirens! :-( It was scary, nonetheless, to see him wheeled on a stretcher into an ambulance. They would not let me ride with him; so my mother-in-law drove me and we followed the ambulance. You could see Casey's little head popping up trying to look out the ambulance windows to see if we could see him! He's so darn cute!
So we finally get to Baylor-Dalllas. It was a long ride, but at least we didn't have to go through the admitting process downstairs. He was taken straight to his room. It was not a pleasant looking room at all! It was very compact and old looking! What happens next was very disturbing and overwhelming! His room was BOMBARDED with doctors, nurses, interns, volunteers, research nurses, and clergymen!! I was totally freaking out! There were as many as 5 at at a time in his room...with paperwork out the wazoo! They hurriedly rushed in and out and in and out with questions after endless questions and paperwork! Many questions and paperwork were identical from what he filled out at Denton Regional. Doctor after Doctor and nurse after nurse with the SAME questions! OMG! When was this going to end? And when were they going to tell me what was wrong with my husband?! They did test after test, scan after scan, MRI, xrays... and they drew numerous tubes of blood DAILY! Yes, I said DAILY. Poor Casey was in the hospital for two weeks before they figured out what was wrong with him!! Stay tuned for his diagnosis!
Hello!
Hello everyone!
Casey and I have decided to keep an online blog of his progress battling liver cancer! We think this an excellent way to keep our loved ones, family and friends, current and up to date with his progress as well as reading about our thoughts and feelings throughout this tough time in our lives. Please stay tuned and check out our blog daily!
Love,
Marie Finke
Casey and I have decided to keep an online blog of his progress battling liver cancer! We think this an excellent way to keep our loved ones, family and friends, current and up to date with his progress as well as reading about our thoughts and feelings throughout this tough time in our lives. Please stay tuned and check out our blog daily!
Love,
Marie Finke
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