Since my last letter to you I have had a series of ups and downs. I am sorry that I have been out of touch for so long. Immediately after my transplant I had a few significant negative reactions. First I became really lethargic. It was hard to get motivated for anything. I was extremely tired and seemed to be very nauseous at the very thought of food. My appetite went to nothing and I have been losing a pound or two a day ever since. Another major thing that happened was my genital region began to swell and hurt really bad. They told me that this was a bad reaction that they have seen happen to people, and though it is not very common it does happen and will subside and go away within a few weeks. This was not good news at all. I was having a hard time understanding how I was going to deal with it for a day or two, let alone a week or a few weeks! But as time went by I slowly got used to it.
As you probably remember, I was last complaining about the room that I was staying in. Well ironically the last couple of days that I was in the hospital they moved the entire floor to much nicer digs, the new rooms are as nice as the rooms in Altamonte. The room was huge with hard wood floors and a big bathroom. It had all the amenities including a view. However, like I said it was my last day or so, so I was moving on to the nice apartment with Tracy, which was fine with me.
Since my days at the apartment I have been on a huge regiment of pills and daily medication outpatient treatments. I am beginning to realize exactly how long and drawn out this process actually is. I have been taking comfort in the little things in life, close friends and family coming to visit or keeping in touch through phone calls. I enjoy the good reports from the doctors, like just today they told me that my Graft vs. Host disease is only at a level one which is great since they do want some GVHD to help kill the remaining cancer cells. They tell me that so far all of the negative responses are only temporary and will go away with time.
Tuesday, February 24, 2009
Sunday, February 15, 2009
One day at a time
I apologize for the delay in writing on this blog. This process is much harder than I originally anticipated. In fact, I don't think it is possible to anticipate the things that have happened over the past week or so.
As I am writing this I am fighting off sleep from the pain medication that they have on constant flow. I will go into more detail when I am awake and doing better. Just know for now that I am do as well as can be expected and it looks like my exit date from the hospital will be around the 23rd.
As I am writing this I am fighting off sleep from the pain medication that they have on constant flow. I will go into more detail when I am awake and doing better. Just know for now that I am do as well as can be expected and it looks like my exit date from the hospital will be around the 23rd.
Wednesday, February 11, 2009
rough night
Rough night last night. My mouth is beginning to get really sore from the chemo and it kept me awakefor part of the night. When I finally told the nurse she gave me adavan and some pain killers. Thid helped but dropped my blood preasure to 76/53 which is really low. So now I'm on IV fluids to bring my preasure back up to normal range.
Monday, February 9, 2009
The waiting....
I have found it harder to sleep here than any other hospital or hospital room that I have ever stayed at in the past. Because of the constant tired I might have a hard time writing as much as I would like to write.
Days here have become very uneventful since the transplant. This was not unexpected as the doctors here seem to have an exact idea of when I will start getting sick. They seem to have a cookie cutter approach with all of the patients here and we are all on the same feel good / feel bad schedule. I must say it is a little surreal comparing sick notes in the hall with other patients. But I guess it makes sense because we are all here for the same reason.
There is a big calendar on the wall of my room that has all of my treatment days, blood counts and count down to sickness. Apparently I get one more dose of chemo tomorrow and then the following days will be the down sick days. Until then it's just a lot of sitting around and waiting...
Days here have become very uneventful since the transplant. This was not unexpected as the doctors here seem to have an exact idea of when I will start getting sick. They seem to have a cookie cutter approach with all of the patients here and we are all on the same feel good / feel bad schedule. I must say it is a little surreal comparing sick notes in the hall with other patients. But I guess it makes sense because we are all here for the same reason.
There is a big calendar on the wall of my room that has all of my treatment days, blood counts and count down to sickness. Apparently I get one more dose of chemo tomorrow and then the following days will be the down sick days. Until then it's just a lot of sitting around and waiting...
Friday, February 6, 2009
19th update
Hello everyone,
I have decided to write you an update of events that have occurred since my last update and last trip to Tampa. But first I would like to thank all of you for your great support though all of this. The letters, thoughts, kind gestures and words are really indescribable. Thank you.
So the last hours before coming to the Moffitt were crazy, fumbled and nostalgic. We were busy closing the chapter of our old life while simultaneously peering at hints of the new life to come. All of the help from our close friends cannot go unrecognized. We have temporarily moved ½ of our life up to Melisa’s garage with Dylan’s help. While we were doing this Louie, Ken, Sherri and Dana were working their fingers to the bones to get our old house in order, packed away and clean enough to be presentable. There was nothing in the house to eat so we were all fueled by the best baked Ziti and chocolate cake I have ever put in my mouth courtesy of Regina. Ken came down one extra day to put the final touches in the storage unit and help with cleaning and suddenly there was nothing more to do.
We went to Tampa the following morning at 8am. They told me that they were going to give me a twilight drug where I will be asleep but awake enough to know what was happening. Though it was fuzzy I do remember most of the surgery. They inserted the tube in my chest so that there are 3 lines sticking out for various procedures such as chemo therapy, administration of meds and blood transfusions. This time the doctors seemed more like they needed a morning coffee or a refreshing latté enema because there was no music and no joking around. This whole process turned out to be incredibly uneventful. I was sore and bruised for a day or so after but nothing too bad.
They told us to go back to Orlando and wait for Tampa to call the next day when a room would be ready. Tampa is about 2 hours from Orlando so we made the trek back to Orlando to wait at Melisa’s house. There is no doubt that there was stirring and excitement in the air. Over the past few short days we had packed our entire lives in a storage unit for a 4 month long journey in Tampa with a completely strange and unknown outcome. No one could predict what was or wasn’t going to happen. SO of course emotions at Melisa’s house were high. But I finally got the call to start heading toward Tampa. We did our final farewells and we were off.
On the way to Moffitt, Melisa treated us to a fantastic last restaurant meal. I won’t be eating out for a long while. When we finally got to Moffitt, lugging suitcases and bags in tow and we got to the main building we were informed that the bed was not ready. I asked how long it would be and they said at least 2 to 3 hours…. Wow, not a great start. But we made the best of it by finding an Apple Bees to enjoy my last beer with my old immune system. It went down nicely and before I knew it Melisa, Tracy and I were laughing and having a great time, almost as if we weren’t there to drop me off for a bone marrow transplant. But alas, I got the phone call on my cell. The bed is ready and we are ready for you now.
After all of the proper paper work was filled out we were escorted to the elevators and up to the 4th floor, wound around a corridor and to the main nurse’s station. The room is painted a dull blue green. The white neon lights were blinking above us, half burning out and there is an overall sense of drab shame to the entire floor. I was genuinely surprised. The room seems to have equipment that would have been very handy in the early 90’s. Unfortunately for us patients, I don’t think things have been updated since. The door that leads to my tiny hospital room is being held ajar by a makeshift ace bandage, one side clinging to a wall rack the other to the door handle. As I watched my friends shrinking in the distance, sadly walking away from my little closet of a room assigned to me I had the overwhelming frowning feeling that I want to go back to Apple Bees now. I later learned that Tracy and Melisa went to the bathroom to weep about the horrible condition that they were leaving me with.
The next few days were very trying, the chemo was much more potent and I’ve had a lot more reactions to the chemo. 2 days prior to the actual transplant my feet had developed a strong burning sensation. This was especially hard because I found myself having to sit straight up in a chair with feet soaking in ice. They began administering a drug to help prevent fungus and one of the side effects of this drug is hallucination. It was not uncommon to see me sitting in a chair at 3 in the morning completely alone, both feet in a bucket of ice and petting my dog while talking to someone who even I knew wasn’t there.
The day of transplant was finally here. They call it day zero. Ashley, Lily, Melisa and Tracy were all there for the occasion. I remember the doctor telling me that there is a 10% chance of mortality just from the transplant alone. They hooked up the machines and administered a bunch of pre medications which needless to say made me completely useless and loopy, probably actually a hindrance since I got the great idea to take pictures of everything going on. I remember a guy standing at the door telling me he didn’t want his picture taken as I chuckled and took another snap in his direction. He was not pleased but I didn’t care at that point. They were killing me and bringing me back to life with someone else’s immune system, like science fiction! What did I care what anyone thought at that moment!
In the end, after the drugs wore off and I woke up the next morning feeling the same that I had been feeling for the last 32 years, I realized with a sudden calm that I just beat 10% of the odds, not bad.
I hope all of you are doing well. I will continue to blog on http://www.blogger.com/home?pli=1 I hope all of you will subscribe. I love hearing back from you and I apologize if I take a while to answer some e-mails or posts, as you can probably tell, I have my good days and bad days.
Thanks again for all of your love and support!
Sincerely,
Rick
I have decided to write you an update of events that have occurred since my last update and last trip to Tampa. But first I would like to thank all of you for your great support though all of this. The letters, thoughts, kind gestures and words are really indescribable. Thank you.
So the last hours before coming to the Moffitt were crazy, fumbled and nostalgic. We were busy closing the chapter of our old life while simultaneously peering at hints of the new life to come. All of the help from our close friends cannot go unrecognized. We have temporarily moved ½ of our life up to Melisa’s garage with Dylan’s help. While we were doing this Louie, Ken, Sherri and Dana were working their fingers to the bones to get our old house in order, packed away and clean enough to be presentable. There was nothing in the house to eat so we were all fueled by the best baked Ziti and chocolate cake I have ever put in my mouth courtesy of Regina. Ken came down one extra day to put the final touches in the storage unit and help with cleaning and suddenly there was nothing more to do.
We went to Tampa the following morning at 8am. They told me that they were going to give me a twilight drug where I will be asleep but awake enough to know what was happening. Though it was fuzzy I do remember most of the surgery. They inserted the tube in my chest so that there are 3 lines sticking out for various procedures such as chemo therapy, administration of meds and blood transfusions. This time the doctors seemed more like they needed a morning coffee or a refreshing latté enema because there was no music and no joking around. This whole process turned out to be incredibly uneventful. I was sore and bruised for a day or so after but nothing too bad.
They told us to go back to Orlando and wait for Tampa to call the next day when a room would be ready. Tampa is about 2 hours from Orlando so we made the trek back to Orlando to wait at Melisa’s house. There is no doubt that there was stirring and excitement in the air. Over the past few short days we had packed our entire lives in a storage unit for a 4 month long journey in Tampa with a completely strange and unknown outcome. No one could predict what was or wasn’t going to happen. SO of course emotions at Melisa’s house were high. But I finally got the call to start heading toward Tampa. We did our final farewells and we were off.
On the way to Moffitt, Melisa treated us to a fantastic last restaurant meal. I won’t be eating out for a long while. When we finally got to Moffitt, lugging suitcases and bags in tow and we got to the main building we were informed that the bed was not ready. I asked how long it would be and they said at least 2 to 3 hours…. Wow, not a great start. But we made the best of it by finding an Apple Bees to enjoy my last beer with my old immune system. It went down nicely and before I knew it Melisa, Tracy and I were laughing and having a great time, almost as if we weren’t there to drop me off for a bone marrow transplant. But alas, I got the phone call on my cell. The bed is ready and we are ready for you now.
After all of the proper paper work was filled out we were escorted to the elevators and up to the 4th floor, wound around a corridor and to the main nurse’s station. The room is painted a dull blue green. The white neon lights were blinking above us, half burning out and there is an overall sense of drab shame to the entire floor. I was genuinely surprised. The room seems to have equipment that would have been very handy in the early 90’s. Unfortunately for us patients, I don’t think things have been updated since. The door that leads to my tiny hospital room is being held ajar by a makeshift ace bandage, one side clinging to a wall rack the other to the door handle. As I watched my friends shrinking in the distance, sadly walking away from my little closet of a room assigned to me I had the overwhelming frowning feeling that I want to go back to Apple Bees now. I later learned that Tracy and Melisa went to the bathroom to weep about the horrible condition that they were leaving me with.
The next few days were very trying, the chemo was much more potent and I’ve had a lot more reactions to the chemo. 2 days prior to the actual transplant my feet had developed a strong burning sensation. This was especially hard because I found myself having to sit straight up in a chair with feet soaking in ice. They began administering a drug to help prevent fungus and one of the side effects of this drug is hallucination. It was not uncommon to see me sitting in a chair at 3 in the morning completely alone, both feet in a bucket of ice and petting my dog while talking to someone who even I knew wasn’t there.
The day of transplant was finally here. They call it day zero. Ashley, Lily, Melisa and Tracy were all there for the occasion. I remember the doctor telling me that there is a 10% chance of mortality just from the transplant alone. They hooked up the machines and administered a bunch of pre medications which needless to say made me completely useless and loopy, probably actually a hindrance since I got the great idea to take pictures of everything going on. I remember a guy standing at the door telling me he didn’t want his picture taken as I chuckled and took another snap in his direction. He was not pleased but I didn’t care at that point. They were killing me and bringing me back to life with someone else’s immune system, like science fiction! What did I care what anyone thought at that moment!
In the end, after the drugs wore off and I woke up the next morning feeling the same that I had been feeling for the last 32 years, I realized with a sudden calm that I just beat 10% of the odds, not bad.
I hope all of you are doing well. I will continue to blog on http://www.blogger.com/home?pli=1 I hope all of you will subscribe. I love hearing back from you and I apologize if I take a while to answer some e-mails or posts, as you can probably tell, I have my good days and bad days.
Thanks again for all of your love and support!
Sincerely,
Rick
Day 10 Exhausted
Hello again, this is Tracy. I just wanted to touch base and let you all know that Rick is doing awesome under the circumstances. He is literally exhausted. He feels like a truck ran over him and deflated any energy he has. He sleeps off and on and has very vivid dreams. Sometimes he carries on conversations in his dreams, they are that vivid. His blood work is looking good and he is hopefully starting to trend upwards and the stem cells are starting to graft, but still a little early to tell.
He is feeling a little on the bluesy side, so all encouraging words are much appreciated. Love and miss all of you! Tracy and Rick
He is feeling a little on the bluesy side, so all encouraging words are much appreciated. Love and miss all of you! Tracy and Rick
Wednesday, February 4, 2009
The New Start
Hello all, this is Tracy posting a blog for Rick. He has been out of commission for the last few days. So I decided to try to catch you all up. Please bare with me, as I do not write anywhere as well as he does.
He has been in a lot of pain the past 3 days, the pain being in the bottom of his feet. He says it feels like someone is taking a lighter to the bottom of his feet and moving it around continuously. He has not slept in three days because of the pain. The little sleep he has gotten is when he is sitting straight up in his chair with his feet sitting in 2 buckets of ice.
The transplant went very well. They started at 11:37 last night and was finished by 1:25am. We were all scared to death, not knowing what was going to happen. They gave Rick some Adivan, Benadryl and Diloted about 30 minutes prior which calmed down the shakes he was experiencing due to nerves and feet pain. His left hand went numb for about 15 minutes which freaked out the nurses, but we never knew it until they said something about it at the end. Our nurse Mandy was awesome through the entire process, she had a great sense of humor. Rick was taking all kinds of pictures in his drug induced stupor.
He starts on a new med tonight at about 1:30am that keeps his new stem cells under bay, and hopefully will keep his graft vs host disease to a minimum. This medicine is known for causing very bad mouth sores and stomach issues. This weekend through next week will be the worst of the worst, but they keep telling us it has to get worse before it gets better.
Hopefully we will have Rick up and blogging in the next day or so. Thank you all for the love, support and prayers, couldn't get through this without you guys.
Special Thanks to Melisa (my rock, because my other rock is currently under repair) Ashley and Lily for being here for Ricks new Birthday as the Nurses put it. We love you guys.
He has been in a lot of pain the past 3 days, the pain being in the bottom of his feet. He says it feels like someone is taking a lighter to the bottom of his feet and moving it around continuously. He has not slept in three days because of the pain. The little sleep he has gotten is when he is sitting straight up in his chair with his feet sitting in 2 buckets of ice.
The transplant went very well. They started at 11:37 last night and was finished by 1:25am. We were all scared to death, not knowing what was going to happen. They gave Rick some Adivan, Benadryl and Diloted about 30 minutes prior which calmed down the shakes he was experiencing due to nerves and feet pain. His left hand went numb for about 15 minutes which freaked out the nurses, but we never knew it until they said something about it at the end. Our nurse Mandy was awesome through the entire process, she had a great sense of humor. Rick was taking all kinds of pictures in his drug induced stupor.
He starts on a new med tonight at about 1:30am that keeps his new stem cells under bay, and hopefully will keep his graft vs host disease to a minimum. This medicine is known for causing very bad mouth sores and stomach issues. This weekend through next week will be the worst of the worst, but they keep telling us it has to get worse before it gets better.
Hopefully we will have Rick up and blogging in the next day or so. Thank you all for the love, support and prayers, couldn't get through this without you guys.
Special Thanks to Melisa (my rock, because my other rock is currently under repair) Ashley and Lily for being here for Ricks new Birthday as the Nurses put it. We love you guys.
Monday, February 2, 2009
Day 6...
Today has consisted of small intervals of reality peaking in on me. The nurse tells me that my feet are burning because of a reaction to one of the chemo therapies. They keep giving me drugs, anti-this and anti- that but these drugs see to just keep me in an uncomfortable state of being. Sleep comes but not for long. Soon someone is at the door or on the phone to disturb.
My uncle and my grandmother came to visit me today and brought me lunch. This was a very sweet gesture and I appreciated it greatly. Unfortunately I slept through most of their visit. I apologize for the lack of substance in this particular blog. Sometimes it is difficult to find words.
My uncle and my grandmother came to visit me today and brought me lunch. This was a very sweet gesture and I appreciated it greatly. Unfortunately I slept through most of their visit. I apologize for the lack of substance in this particular blog. Sometimes it is difficult to find words.
Sunday, February 1, 2009
Day 5 Chemo's first blow
This morning was the first time I openly got sick from the chemo therapy this time around. I have not had very much sound sleep since I have been here so my sleep pattern consists dozing off sitting straight up in my chair. Early this morning shortly after my nurse removed my chemo bag for the day, I began to maneuver my way to the restroom when suddenly I realized that I was not going to make it to the restroom. No stomach ache, no warning, just projectile vomit all over the place. One more point for cancer. That was an unpleasant and unwelcome surprise. My nurse helped clean me up and took mercy on my by giving me some anti-nauseous pills and a shot of benadryl in my I.V. to help knock me out for the remainder of the morning.
Right now I am feeling much better. One of the doctors came in this morning and we had a long talk about how trying these next few months are going to be but in the end everything else will look like small potato's. He expressed how much good fortune he has seen with this transplant and there are a lot more people that walk away from this having a normal healthy life than don't.
Two of my angels, Tracy and my daughter Lily are coming up to visit today and I look forward to their company.
Right now I am feeling much better. One of the doctors came in this morning and we had a long talk about how trying these next few months are going to be but in the end everything else will look like small potato's. He expressed how much good fortune he has seen with this transplant and there are a lot more people that walk away from this having a normal healthy life than don't.
Two of my angels, Tracy and my daughter Lily are coming up to visit today and I look forward to their company.
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