Tuesday, April 27, 2010
What my blog is all about
My blog is a chance for me to spill my guts about how I FEEL about everything that has been going on with my husband. Blogging is much like writing in a diary. I express my thoughts, opinions, concerns, and most of all my feelings about things that are going on in my life. Doing this helps me cope; it helps me open up; and it helps me not keep my feelings bottled up to where I explode later. This blog just so happens to be about the trials and tribulations that my husband and I have had to endure the last couple of years. No matter who it appears I am blaming for his physical and mental anguish, of course I am THANKFUL to GOD that he is alive and am thankful that the doctors were able to save him. The fact of the matter is that we put all of our trust and faith into doctors and hospitals. We do not expect to come out of there with an illness that we didn't have when we first went in there because of something that was overlooked! Casey is my everything, he is my world, and I care about his pain more than I care of my own! Of course, people are entitled to their own opinions. If anyone disagrees with my thoughts and opinions, please keep to yourself and do not attack me personally; as this is MY blog about MY opinions, MY thoughts, and MY feelings. And if it seems I am whining; well, so be it! After all we have been through, we definitely have room to whine!
STUPID CANCER/CHEMO
I AM GOING TO BLOG IN ALL CAPS TODAY BECAUSE I AM SO FRUSTRATED!!! MY HUSBAND CASEY HAS BEEN IN SO MUCH PAIN FOR SO LONG AND ALL BECAUSE HIS FIRST LIVER TRANSPLANT AT BAYLOR, WHICH BAYLOR IS SUPPOSED TO BE WELL KNOWN FOR, GOT SCREWED UP SOMEHOW!!! THE LIVER DONOR THEY USED HAD LUNG CANCER!! THEREFORE, THE LUNG CANCER THAT HAD METASTICIZED TO THE DONORS LIVER WAS "SOMEHOW" MISSED AND THEN TRANSPLANTED INTO POOR CASEY!!! BECAUSE OF THIS, WE HAVE HAD TO ENDURE SO MUCH PAIN AND ANGUISH! HE RECEIVED ANOTHER LIVER TRANSPLANT TO REMOVE THE CANCEROUS LIVER, BUT IS STILL HAVING TO GO THRU CHEMOTHERAPY! BECAUSE OF THE CHEMO, HIS WOUND IS NOT HEALING. HE HAS AN OPEN WOUND THAT IS AN OPEN INVITATION FOR INFECTION...ONLY TO CAUSE MORE PROBLEMS!! BECAUSE HIS WOUND IS NOT HEALING QUICK ENOUGH, HE HAS DEVELOPED TWO HERNIAS WHICH ARE CAUSING HIM TO BE IN CONSTANT PAIN!! BECAUSE OF THE MEDS HE IS TAKING AND THE EFFECTS OF THE CHEMO, HE CANNOT SLEEP. MY POOR HUBBY IS A MESS...HE IS IN PAIN, CAN'T SLEEP, HAS DARK CIRLCES UNDER HIS EYE, WALKS HUNCHED OVER...ALL THIS HAS NOT ONLY TAKEN A TOLL ON HIM BUT ON ME AS WELL!! IT DEPRESSES ME TO SEE HIM IN SO MUCH PAIN...KNOWING THERE IS NOTHING WE CAN DO ABOUT IT. AND AS IF THAT IS NOT ENOUGH! I STRESS OUT ABOUT HAVING TO PAY THE MEDICAL BILLS AND PRESECRIPTIONS AND COPAYS...IT SURE AS HELL IS NOT BAYLOR...WHO PUT US IN THIS SITUATION IN THE FIRST PLACE!!!!
Tuesday, April 13, 2010
The "Murse" is Back!
The man purse is back in Casey's wardrobe! He went back to the wound specialist today. The top of his wound is just not closing up! It looks disgusting! The doctor scraped all sorts of dead tissue out of there and recommended the wound vac be put back on! :-( Casey was not a happy camper!
This whole day sucked!!! It started off rushed and then just got worse and worse! Casey's lab appt ran about an hour late, then the stupid Craigslist people we were waiting for never came and wanted us to come to them! WTF? I have never heard of someone asking you to deliver something bought off Craigslist! Someone even wanted us to go all the way to Ft. Worth! It would cost us more in gas to go all the way over there than the thing was worth!! Ugh! I'm so tired of people! That is not even why our day was so bad...but that is a whole other blog!
Casey is still in constant pain from his hernias. They can't do anything about them until after his last chemo next month. (He has a chemo treatment tomorrow.) All he can do is take a pain pill when the pain becomes unbearable. Poor guy walks hunched over! :-( Please keep him in your prayers!
This whole day sucked!!! It started off rushed and then just got worse and worse! Casey's lab appt ran about an hour late, then the stupid Craigslist people we were waiting for never came and wanted us to come to them! WTF? I have never heard of someone asking you to deliver something bought off Craigslist! Someone even wanted us to go all the way to Ft. Worth! It would cost us more in gas to go all the way over there than the thing was worth!! Ugh! I'm so tired of people! That is not even why our day was so bad...but that is a whole other blog!
Casey is still in constant pain from his hernias. They can't do anything about them until after his last chemo next month. (He has a chemo treatment tomorrow.) All he can do is take a pain pill when the pain becomes unbearable. Poor guy walks hunched over! :-( Please keep him in your prayers!
Saturday, April 10, 2010
Casey Can't Win For Losing!
Casey had been in pain around his incision area for a couple of weeks. We thought it was just because of the muscle not being healed up yet...but turns out he has two hernias! During his weekly visit to the wound clinic, the doctors took a close look at it and decided to send him to get a CT scan done. In order to do this, they had to remove the Wound VAC. Casey was so excited to get rid of the murse (man purse)!!! Doctors said that the wound was looking a lot better so he may not have to have the Wound Vac put back on. But the wound is looking pretty nasty this morning so the murse may have to be a part of his wardrobe for a little while longer!
As for the hernias, they are small according to the CT Scan. Doctors will not begin to deal with them until he has finished all his chemo treatments. So he has to be in pain until next month sometime!! Pain killers dull the pain but not enough to go on with his normal daily activities. My poor hubby, he can't win for losing! It's always one thing or another! Please keep him in your daily prayers!
As for the hernias, they are small according to the CT Scan. Doctors will not begin to deal with them until he has finished all his chemo treatments. So he has to be in pain until next month sometime!! Pain killers dull the pain but not enough to go on with his normal daily activities. My poor hubby, he can't win for losing! It's always one thing or another! Please keep him in your daily prayers!
Monday, March 29, 2010
UPDATE...OVERDUE
So sorry you guys, I am well OVERDUE for an update!!! (Much like with our bills) LOL! Last I blogged Casey had just had his 2nd liver transplant and all the doctors were ooo'ing and ahhhh'ing about how well Casey looked right after surgery and how quickly he recovered! It was like no big thang to him...that's how he rolls! Been there...done that! We both knew what to expect and we both knew that everything would be alright! Dr. C, his surgeon, is an awesome doctor and I put all my faith and trust in him.
Casey has been doing very well, as far as recovering from the transplant. Since this was not his first rodeo, this cowboy rode this out like a champ! He had to go to Liver Clinic twice a week and will be released this Friday! Being released means that he won't have to go back to the Liver Clinic until his one year anniversary!! Hopefully his new 16 year old liver will be a very promising liver and we will be able to get back to a normal life again and take up where we left off on starting our own family!! He had to have two chemotherapy sessions as a precaution in case there were still microscopic cancer cells in his blood stream. During his recent visist with his Oncologist, we found out that he will need two additional sessions due to bloodwork still showing there are cancer proteins in his body. :o( The actual process of chemotherapy is not the bad thing...its the side effects! He feels so fatigued, his joints ache, and he becomes nauseated. Not to mention, his hair falls out and he breaks out all over his upper body. But better safe than sorry! :-)
Because of Casey's ongoing dose of immuno-suppressive medications and his two rounds of chemotherapy before and after surgery, his Mercedes Benz shaped incision is not healing very quickly. :-( (That is as close as we will ever come to a Mercedes Benz Emblem! LOL!) Since his incision was not healing quick enough, they had to apply a Wound VAC to it. This is very interesting...for those of you who have never heard of a Wound VAC, google it. It blew my mind! It is a device that uses negative pressure to promote healing in the open area. It is used by forming an airtight seal over the area and "sucking" all the drainage out and pulling new tissue to the top. He basically has a tube sticking out of him in the incision area which is conncected to the actual Wound VAC which he carries around in a pouch...much like the satchel that Alan carries in the Hangover! LOL! It is working slowly but surely. He has to get the packing and tubing removed and replaced twice a week. It is such an expensive hassle driving to and from Baylor- Dallas! If I ever see another hospital again...it will be too soon!!! During Casey's healing process, liver clinics, wound clinics, chemo therapy...I had the additional worry of my brother and sister being in the hospital! My sister donated a much needed kidney to my brother!!! Both brother and sister are doing fine...but had their share of complications! But that's a totally different blog! ;o)
Casey has been doing very well, as far as recovering from the transplant. Since this was not his first rodeo, this cowboy rode this out like a champ! He had to go to Liver Clinic twice a week and will be released this Friday! Being released means that he won't have to go back to the Liver Clinic until his one year anniversary!! Hopefully his new 16 year old liver will be a very promising liver and we will be able to get back to a normal life again and take up where we left off on starting our own family!! He had to have two chemotherapy sessions as a precaution in case there were still microscopic cancer cells in his blood stream. During his recent visist with his Oncologist, we found out that he will need two additional sessions due to bloodwork still showing there are cancer proteins in his body. :o( The actual process of chemotherapy is not the bad thing...its the side effects! He feels so fatigued, his joints ache, and he becomes nauseated. Not to mention, his hair falls out and he breaks out all over his upper body. But better safe than sorry! :-)
Because of Casey's ongoing dose of immuno-suppressive medications and his two rounds of chemotherapy before and after surgery, his Mercedes Benz shaped incision is not healing very quickly. :-( (That is as close as we will ever come to a Mercedes Benz Emblem! LOL!) Since his incision was not healing quick enough, they had to apply a Wound VAC to it. This is very interesting...for those of you who have never heard of a Wound VAC, google it. It blew my mind! It is a device that uses negative pressure to promote healing in the open area. It is used by forming an airtight seal over the area and "sucking" all the drainage out and pulling new tissue to the top. He basically has a tube sticking out of him in the incision area which is conncected to the actual Wound VAC which he carries around in a pouch...much like the satchel that Alan carries in the Hangover! LOL! It is working slowly but surely. He has to get the packing and tubing removed and replaced twice a week. It is such an expensive hassle driving to and from Baylor- Dallas! If I ever see another hospital again...it will be too soon!!! During Casey's healing process, liver clinics, wound clinics, chemo therapy...I had the additional worry of my brother and sister being in the hospital! My sister donated a much needed kidney to my brother!!! Both brother and sister are doing fine...but had their share of complications! But that's a totally different blog! ;o)
Saturday, February 27, 2010
What doesn't kill us makes us stronger
I'm taking a break from catching up on blogs from Casey's 2nd transplant to blog about something that Casey asked me yesterday that I will never ever forget. He was just sitting in his favorite chair; I could tell he was thinking about something very profound. He asks me out of nowhere, "Baby, do you think there is something really important that I have to do in life? I mean, why else would God give me a second and then a third chance to live? If there wasn't something really really important that I needed to accomplish, then God would have taken me the first time my liver failed." He says he is going to work on figuring out what it is that he needs to accomplish to make this world a better place. I'm sure God has a very special plan for him. He deserves the best life ever!
I have always wanted children so I told him that it was not his time to go because he still needs to father my baby! ;-) He had a vasectomy during his first marriage. We had begun to talk about a reversal before he got sick the first time. After he got sick, the thought of having that procedure done had to be put on hold for at least one year after his transplant. One year after his transplant is when he found out that he had cancer and needed another transplant...so the reversal must be put on hold yet again for at least another year! He says, "Maybe that's it...maybe we are supposed to have a baby who will grow up to be very important to the world...like the one who finds the cure for cancer!!"
God tests us in so many ways. What doesn't kill us makes us stronger. Regardless if God has a really important plan for Casey, the most important thing is that we have both changed from this experience and learned so much!! We have grown closer and have taken our relationship to a level that most couples never experience!
I have always wanted children so I told him that it was not his time to go because he still needs to father my baby! ;-) He had a vasectomy during his first marriage. We had begun to talk about a reversal before he got sick the first time. After he got sick, the thought of having that procedure done had to be put on hold for at least one year after his transplant. One year after his transplant is when he found out that he had cancer and needed another transplant...so the reversal must be put on hold yet again for at least another year! He says, "Maybe that's it...maybe we are supposed to have a baby who will grow up to be very important to the world...like the one who finds the cure for cancer!!"
God tests us in so many ways. What doesn't kill us makes us stronger. Regardless if God has a really important plan for Casey, the most important thing is that we have both changed from this experience and learned so much!! We have grown closer and have taken our relationship to a level that most couples never experience!
MUCH NEEDED UPDATE: THIRD LIVER IS A CHARM
For those of you that know us really well already know that we finally did get "the call" that we had been waiting for! Due to all the stress and mayhem, I have not really felt like blogging in a long long while! I apologize to those of you who have been following my blogs! Of course for those of you who are on my Facebook, you had been getting updates frequently!
Let me start all the way back when we got the much anticipated call. It is all a blur right now, but I think I can mamage to remember the most important highlights! On Friday, January 29, 2010, Casey got a call from Baylor Transplant services during the early part of the day. We were both at work and really were not expecting to get this call since it had been almost a month since the last false alarm. Transplant services informed Casey that he was YET AGAIN a back up for a liver that had come up! WTF, he was a back up the last time he was called and was told that he would be NEXT on the list!! The reason he was a back up this time was because the liver was coming from a 16 year old boy. There was a pediatric patient that was ahead of Casey on the list. Since this was a young boy, they must consider the needs of a child first. The only concern was the liver was too large for the pediatric patient and it would have to be cut in half. The committee had to make the decision to either cut the liver in half or give the whole to Casey. It was hours and hours before we got a return call. It was around 9:45 pm when transplant services contacted Casey and said they were still up in the air with the decision...and not even a minute later, the same transplant nurse called right back and said the liver was his!!!! Talk about relief and excitement!!!! We had not anticipated this call so we were not very prepared. We had not packed, it was a kid weekend so we had the kids that night, and we had not found a dog sitter for our dogs! But not to worry! The kids' mom was very prompt to come pick them up and since it was really late, it was bedtime for the dogs anyway. I decided I would just leave the dogs at home and come back home in the morning to let them out, feed them, find a sitter, and shower and change. Dogs are just like kids! I was so worried about them!!
We headed toward Baylor Hospital in Dallas around 10:30 pm. We had to be there by 11:45 pm. It was smooth sailing and thought we would get there early...WRONG!!!!! Once we got to I-75, there was a traffic jam!! Why in the world would there be a traffic jam at this hour?! Turns out there were two accidents up ahead and it was down to one lane!!! It took us about 30 minutes to get to our exit which was only a mile ahead!!! No worries...we made it right on time! We were there on time, but ended up having to wait hours and hours before Casey went into surgery. Surgery was set for 5:00 am Saturday morning. The 2nd time around was not as stressful and hectic as the first time. There were very few doctors and nurses coming in and out of his room; no research nurses bombarded him with questions. The few doctors that did come to see him were very excited and eager to get the surgery started! It seems that Casey is a really big deal around Baylor Hospital!! No one has ever been through what he has been through and the doctors are just flabergasted with his story! One of the doctors did have a good talk with us regarding Casey's cancer situation. He told us that if once they got Casey opened up and they saw the cancer had spread, they were going to have to sew him back up and cancel the transplant! They cannot do a transplant if the cancer has spread outside of the liver. Several tests pointed towards the cancer not having spread...but it had been a month since any tests had been done. I was so scared!!! I have never prayed so much in my life!!! After Casey finished filling out all the paperwork, we took naps until 5:00 am. The clock struck 5:00 am, but no one had come to get Casey. He wasn't even rolled into the O.R. until about 6:30 am!! His mom and I waited in the pre-op room with him for about 30 minutes and then he was rolled away for surgery!!!
After his mom and I ate breakfast, I drove home to shower and let the dogs out and find sitters. I was hoping not to get a call in a few minutes to inform me that they were going to have to cancel the surgery. But several hours later, no call. No news is certainly good news!!! After several hours later, one of the surgeons notified his mom that everything was going great and they found no traces of cancer outside of the liver!!! They had gone ahead with the transplant!!!! Hallelujah!!!!!!
The surgery took about 5 hours. He did very very well!!!! He was in ICU for one day only and then was placed in his own room the following day!!! All the doctors and nurses were so amazed at his progress!!! He would tell them, "That's how I roll!" His oncologist who was so pessimistic in the beginning was now calling him a STUD! LOL! The 16 year old liver probably had alot to do with how soon he bounced back...as well as Casey's optimisitic attitude throughout this ordeal!! God bless the family of the donor!! The saying "third time is a charm" is certainly true...except in our case it's "third liver is a charm!"
Stay tuned for a continuation of his update!
Let me start all the way back when we got the much anticipated call. It is all a blur right now, but I think I can mamage to remember the most important highlights! On Friday, January 29, 2010, Casey got a call from Baylor Transplant services during the early part of the day. We were both at work and really were not expecting to get this call since it had been almost a month since the last false alarm. Transplant services informed Casey that he was YET AGAIN a back up for a liver that had come up! WTF, he was a back up the last time he was called and was told that he would be NEXT on the list!! The reason he was a back up this time was because the liver was coming from a 16 year old boy. There was a pediatric patient that was ahead of Casey on the list. Since this was a young boy, they must consider the needs of a child first. The only concern was the liver was too large for the pediatric patient and it would have to be cut in half. The committee had to make the decision to either cut the liver in half or give the whole to Casey. It was hours and hours before we got a return call. It was around 9:45 pm when transplant services contacted Casey and said they were still up in the air with the decision...and not even a minute later, the same transplant nurse called right back and said the liver was his!!!! Talk about relief and excitement!!!! We had not anticipated this call so we were not very prepared. We had not packed, it was a kid weekend so we had the kids that night, and we had not found a dog sitter for our dogs! But not to worry! The kids' mom was very prompt to come pick them up and since it was really late, it was bedtime for the dogs anyway. I decided I would just leave the dogs at home and come back home in the morning to let them out, feed them, find a sitter, and shower and change. Dogs are just like kids! I was so worried about them!!
We headed toward Baylor Hospital in Dallas around 10:30 pm. We had to be there by 11:45 pm. It was smooth sailing and thought we would get there early...WRONG!!!!! Once we got to I-75, there was a traffic jam!! Why in the world would there be a traffic jam at this hour?! Turns out there were two accidents up ahead and it was down to one lane!!! It took us about 30 minutes to get to our exit which was only a mile ahead!!! No worries...we made it right on time! We were there on time, but ended up having to wait hours and hours before Casey went into surgery. Surgery was set for 5:00 am Saturday morning. The 2nd time around was not as stressful and hectic as the first time. There were very few doctors and nurses coming in and out of his room; no research nurses bombarded him with questions. The few doctors that did come to see him were very excited and eager to get the surgery started! It seems that Casey is a really big deal around Baylor Hospital!! No one has ever been through what he has been through and the doctors are just flabergasted with his story! One of the doctors did have a good talk with us regarding Casey's cancer situation. He told us that if once they got Casey opened up and they saw the cancer had spread, they were going to have to sew him back up and cancel the transplant! They cannot do a transplant if the cancer has spread outside of the liver. Several tests pointed towards the cancer not having spread...but it had been a month since any tests had been done. I was so scared!!! I have never prayed so much in my life!!! After Casey finished filling out all the paperwork, we took naps until 5:00 am. The clock struck 5:00 am, but no one had come to get Casey. He wasn't even rolled into the O.R. until about 6:30 am!! His mom and I waited in the pre-op room with him for about 30 minutes and then he was rolled away for surgery!!!
After his mom and I ate breakfast, I drove home to shower and let the dogs out and find sitters. I was hoping not to get a call in a few minutes to inform me that they were going to have to cancel the surgery. But several hours later, no call. No news is certainly good news!!! After several hours later, one of the surgeons notified his mom that everything was going great and they found no traces of cancer outside of the liver!!! They had gone ahead with the transplant!!!! Hallelujah!!!!!!
The surgery took about 5 hours. He did very very well!!!! He was in ICU for one day only and then was placed in his own room the following day!!! All the doctors and nurses were so amazed at his progress!!! He would tell them, "That's how I roll!" His oncologist who was so pessimistic in the beginning was now calling him a STUD! LOL! The 16 year old liver probably had alot to do with how soon he bounced back...as well as Casey's optimisitic attitude throughout this ordeal!! God bless the family of the donor!! The saying "third time is a charm" is certainly true...except in our case it's "third liver is a charm!"
Stay tuned for a continuation of his update!
Subscribe to:
Posts (Atom)