I can hardly believe I was let out of Northwestern only a week ago this morning. It feels like a lifetime ago. Some of that's because I still don't have the strength or energy to get out and do alot, so the days go by pretty slowly. And some of it is the mind doesn't remember pain, and I'm forgetting alot of what happened.
They warned me about coming home and what a huge adjustment it would be because of how much they disrupted my sleep schedule and how worn out the drugs make my body. They were not kidding, its been a HUGE adjustment. But a very positive one. I love getting to sleep eight hours without them waking me up to take my vital signs or weigh me or give me some medication. It took 3 or 4 nights for me to quit waking up every four hours out of habit, but by this last weekend sleep was once again my friend.
The other thing I have found difficult to deal with is that I made it through the treatment with so few complications. That was terrific, it was amazing, and I am grateful for it, but it doesn't make the process any easier. What happens is, my journey gets minimized because I went through it easily. There was nothing easy about it, and I wouldn't want my worst enemy to have to go through that. Its disruptive, destructive, painful, unpleasant, awful, and I don't know what other words to describe it with. Alot of times, in telling people what happened and how well I did, what gets lost is how difficult the treatment was, and that bothers me. I don't ever want to do that again, so the cancer better stay gone.
Getting to be close to Hope is the best part of being home. I'm still not strong enough to be a primary caregiver for her, but I can spend an hour here and there with her. She's a hoot. She's crawling, and as soon as she figured out how to crawl, she figured out how to pull herself up to a standing position, which she likes better. So now, when you put her on the floor, her primary objective is to locate an object which will allow her to pull herself up to standing. This can be anything from the dog to the couch to the coffee table, you name it. Needless to say, we now have to be in catching distance from her at all times because she's really not strong enough to be walking so what ends up happening is alot of falling down.
My little pinto has a mind of her own too. She loves being the center of attention, and will do things to get everyone's attention. Then, when she's playing with her toys, she wants whatever toy you have in your hands. Period. She sees me holding a glass of water, she wants it. She sees me holding Patch the stuffed dog, she wants to play with it. As soon as she gets whatever you have though, she's on to the next toy to play with, so life is this constant stream of finding things for her to play with which is kind of interesting.
Friends have been asking how I feel. I feel pretty good all things considered. My body physically still feels like someone dropped a building on me, only everyday the size of the building gets a little smaller. The best time of day for me, energy wise is early in the morning. I do well until about lunch time, then I need a couple hour nap. Then I am up in the evening, but usually a little foggy.
Mind has been pleasantly clear on these drugs. CHOP-Rituxan four years ago really screwed up my short term memory. With these drugs, I have had some memory issues, but thankfully not the near Alzheimer's situation I went through before.
Since I'm home and doing better, I have cut back on posting. There's not as much to post about, so I'll just put up weekly updates on how I'm doing. I go to see the doctor tomorrow and hopefully he'll let me drive again and take me off the bleeding restrictions. Those restrictions really limit what I can do around the house, because I'm not allowed to do anything that might cause me to bleed or bruise, ie no cutting/chopping/making dinner, no lifting or moving objects, no sitting in the front seat of a car(airbags cause severe bruising).
I'll let y'all know how the doctor's went tomorrow. Peace, and I'm out. T
Monday, September 22, 2008
Wednesday, September 17, 2008
T+14 Home Again
WOW, what a crazy time its been since my last post. Monday morning when Dr. Happy Pants decided to let me go, I didn't realize there would be so many things that needed to happen to spring me from the joint. I thought just pack and go, but no. They had to do a bunch of bloodwork, give me IV Platelets because my count was only 26 and they wanted it at least 50 to get my vascular catheter removed, and they needed to give me IV Magnesium and Potassium(which take about 4 hours apiece to infuse).
Ok, having the central line removed was the single most painful part of the entire chemotherapy treatment this summer. Basically, they just numbed my skin for the 3 inches that the catheter ran under it, and pulled it out. Literally, the doc just pulled the tube out. He would pull about a millimeter, then cut the scar tissue back, and repeat until it came completely out. It took about 45 minutes to get the whole thing out, and man was I not expecting how much it would hurt.
I loved having the port in during the treatment phase, because I didn't have to get any more sticks in my arms. Also, the port took huge volumes of fluid through it, so things like transfusions went quicker. But towards the end, the catheter was getting a bit uncomfortable from all the scar tissue, so I don't miss it anymore. I also don't miss the dongles hanging out of my chest, they were kinda creepy. I never really got used to them. I would look at them and think, those go straight to my jugular, and I would weird out.
Anyway, so by about 5:30 pm, they finally discharged me to go home. I was kinda sad to say goodbye to all the wonderful nurses and PCTs who helped me while I was in there, because they were so kind in caring for me and they all said they hoped they never saw me again, which I agreed with I'd rather not go back either.
Leaving the airlock to go out to the lobby and down to the truck was very emotional for me. It wasn't that I was jumping up and down with excitement, I've kind of never been that way, rather it was more a sense of accomplishment and relief. Accomplishment in that I had done something truly amazing, and difficult, and come through it solidly. I am proud of myself for that. Relief in that the hardest part was over and I wasn't going to be locked up in that little ward any more.
From Saturday when they first said I may go home Monday, until I left, the isolation ward suddenly got really, really small. I could feel the excitement of leaving building inside and it began showing me how uncomfortable I was and how confining the ward was.
I read a book last year called Deep Survival, by Laurence Gonzales, who had some suggestions I had been following. In his lifetime, he has been studying people who survive critial situations, like being lost at sea, or mountain climbing and getting caught in a blizzard. One of the conclusions he came to in dealing with long term survival situations was that the likelyhood of surviving increased with the victim's ability to come to terms with their situation, adapt to it, and begin living in the altered reality.
For example, when a solo sailor's boat sank in the middle of the Pacific and he lived over 300 days in his liferaft, he very quickly was able to create a new living standard for being in the liferaft. He didn't think about being rescued, or what life would be like when he was, instead he focused on learning how to fish and catch rainwater, watch weather patterns, navigate by the stars, to the point that when he finally drifted into some Mexican fishermen, and they rescued him, he told them to finish fishing that day before they took him in. He was so comfortable in the environment of being lost at sea, that he was able to deal with being out of touch long term.
I felt that going into isolation would be similar. I knew it would be extremely confining. And I also knew that if I focused on getting out, and what that would be like, I would be setting an expectation for myself that may take a very long time to come to fruition, and could lead to depression if my stay became extended. So, from the get go, I didn't think, in detail, about leaving.
Getting out was my goal, but my focus was on doing everything I was told so that I could recover as quickly as possible. It wasn't until they said I might leave on Monday that leaving came to my mind in detail. And suddenly, being in the ward was much more difficult. It was as if a switch were turned on in my head and it was all I could think about. Crazy as it sounds, thinking about leaving only made the discomforts of being there worse. Suddenly, I hated the uncomfortable bed, I hated peeing in the plastic jar all the time, I couldn't stand the food(which was terrible even according to my visitors). Once my mind realized I was going to survive and get out, it switched from assimilating and coping with being in there, to just wanting to get out ASAP.
Being home has been great, and it has been challenging. Great because I get to see and play with Hope, I have the freedom to move around and eat/drink when I want to(IE no longer on a strict regimine for everything), and I get to sleep without being woken up every 4 hours. Challenging because my body's so exhausted. I had no concept of how far they took my system down until I came home. I can barely go more than about 15 or 20 minutes out of bed without feeling exhausted. Its like all I want to do is sleep, which is a good thing actually.
My home health nurse came by yesterday and couldn't believe that I had just been released and was at only T+13. She said, "You look amazing. I can't believe you're up and moving around, much less answering the door and offering me coffee. In 40 years of nursing, I bet I've only seen 2 people who look as good as you do at this point. You're really blessed."
Then she took my blood pressure and was shocked. "You have the blood pressure of a teenager. I don't know many 40 year olds who are 110/72, but your heartrate is 101, which means your body is still working very hard, so you have to be careful not to overdo things. Don't get all excited and wipe yourself out."
She's right. My doctor said it will take 6-8 months for the BEAM chemotherapy to completely leach out of my bones and be removed from my body. So even though I'm excited and happy to be home, I still have a long way to go.
But there is definately something wonderful about having come through my Stem Cell Transplant. I'm a very blessed man indeed.
Ok, having the central line removed was the single most painful part of the entire chemotherapy treatment this summer. Basically, they just numbed my skin for the 3 inches that the catheter ran under it, and pulled it out. Literally, the doc just pulled the tube out. He would pull about a millimeter, then cut the scar tissue back, and repeat until it came completely out. It took about 45 minutes to get the whole thing out, and man was I not expecting how much it would hurt.
I loved having the port in during the treatment phase, because I didn't have to get any more sticks in my arms. Also, the port took huge volumes of fluid through it, so things like transfusions went quicker. But towards the end, the catheter was getting a bit uncomfortable from all the scar tissue, so I don't miss it anymore. I also don't miss the dongles hanging out of my chest, they were kinda creepy. I never really got used to them. I would look at them and think, those go straight to my jugular, and I would weird out.
Anyway, so by about 5:30 pm, they finally discharged me to go home. I was kinda sad to say goodbye to all the wonderful nurses and PCTs who helped me while I was in there, because they were so kind in caring for me and they all said they hoped they never saw me again, which I agreed with I'd rather not go back either.
Leaving the airlock to go out to the lobby and down to the truck was very emotional for me. It wasn't that I was jumping up and down with excitement, I've kind of never been that way, rather it was more a sense of accomplishment and relief. Accomplishment in that I had done something truly amazing, and difficult, and come through it solidly. I am proud of myself for that. Relief in that the hardest part was over and I wasn't going to be locked up in that little ward any more.
From Saturday when they first said I may go home Monday, until I left, the isolation ward suddenly got really, really small. I could feel the excitement of leaving building inside and it began showing me how uncomfortable I was and how confining the ward was.
I read a book last year called Deep Survival, by Laurence Gonzales, who had some suggestions I had been following. In his lifetime, he has been studying people who survive critial situations, like being lost at sea, or mountain climbing and getting caught in a blizzard. One of the conclusions he came to in dealing with long term survival situations was that the likelyhood of surviving increased with the victim's ability to come to terms with their situation, adapt to it, and begin living in the altered reality.
For example, when a solo sailor's boat sank in the middle of the Pacific and he lived over 300 days in his liferaft, he very quickly was able to create a new living standard for being in the liferaft. He didn't think about being rescued, or what life would be like when he was, instead he focused on learning how to fish and catch rainwater, watch weather patterns, navigate by the stars, to the point that when he finally drifted into some Mexican fishermen, and they rescued him, he told them to finish fishing that day before they took him in. He was so comfortable in the environment of being lost at sea, that he was able to deal with being out of touch long term.
I felt that going into isolation would be similar. I knew it would be extremely confining. And I also knew that if I focused on getting out, and what that would be like, I would be setting an expectation for myself that may take a very long time to come to fruition, and could lead to depression if my stay became extended. So, from the get go, I didn't think, in detail, about leaving.
Getting out was my goal, but my focus was on doing everything I was told so that I could recover as quickly as possible. It wasn't until they said I might leave on Monday that leaving came to my mind in detail. And suddenly, being in the ward was much more difficult. It was as if a switch were turned on in my head and it was all I could think about. Crazy as it sounds, thinking about leaving only made the discomforts of being there worse. Suddenly, I hated the uncomfortable bed, I hated peeing in the plastic jar all the time, I couldn't stand the food(which was terrible even according to my visitors). Once my mind realized I was going to survive and get out, it switched from assimilating and coping with being in there, to just wanting to get out ASAP.
Being home has been great, and it has been challenging. Great because I get to see and play with Hope, I have the freedom to move around and eat/drink when I want to(IE no longer on a strict regimine for everything), and I get to sleep without being woken up every 4 hours. Challenging because my body's so exhausted. I had no concept of how far they took my system down until I came home. I can barely go more than about 15 or 20 minutes out of bed without feeling exhausted. Its like all I want to do is sleep, which is a good thing actually.
My home health nurse came by yesterday and couldn't believe that I had just been released and was at only T+13. She said, "You look amazing. I can't believe you're up and moving around, much less answering the door and offering me coffee. In 40 years of nursing, I bet I've only seen 2 people who look as good as you do at this point. You're really blessed."
Then she took my blood pressure and was shocked. "You have the blood pressure of a teenager. I don't know many 40 year olds who are 110/72, but your heartrate is 101, which means your body is still working very hard, so you have to be careful not to overdo things. Don't get all excited and wipe yourself out."
She's right. My doctor said it will take 6-8 months for the BEAM chemotherapy to completely leach out of my bones and be removed from my body. So even though I'm excited and happy to be home, I still have a long way to go.
But there is definately something wonderful about having come through my Stem Cell Transplant. I'm a very blessed man indeed.
Monday, September 15, 2008
T+12 FREEDOM!!!
My counts stayed up, I didn't run a fever over 100.5F, and I am GOING HOME TODAY!!! I'm so happy I'm not quite sure what to do with myself. Things have been kinda crazy busy this morning because the doctor didn't come by for rounds until 10:00, which is pretty late. I won't actually get out of here until late this afternoon, but in addition to getting to go home, they are taking the central line out this morning!!! YAYAY!!! I have liked having it in, because it makes the IVs and stuff easy, but now that I should only need a few more blood draws, I'm ready to get rid of it. The two dongles that hang off it are pretty annoying after awhile, especially during sleep. I don't know how may times I've rolled over in my sleep and the dongle has poked me waking me up.
Anyway, very exciting news and seeing as I haven't even started packing, I have to cut today's note short. I'll keep posting during my follow up. TTFN, T
Anyway, very exciting news and seeing as I haven't even started packing, I have to cut today's note short. I'll keep posting during my follow up. TTFN, T
Sunday, September 14, 2008
T+11
Man o' man, my body is AMAZING. My WBC went from 2.1 yesterday to 3.7 today, although they told me my counts would probably go down a little. Also, my Absolute Neutrophils went from 1.8 yesterday to 3.1 today, which shocked my nurse. Mei couldn't believe my neutrophils would go from Too Low To Count to 3.1 in two days, she had never seen movement like that only 11 days after transplant before.
Dr. Happy Pants just came by, he's great now that I'm feeling better. He says I'm probably going home tomorrow or Tuesday. They are stopping all my IV medications today and taking me off the drip, so I'm no longer married to my dancing partner. YAYAYAYAYAY!!!!
I have this pole on wheels which stands about 6' 4" tall. About waist high there's a metal ring, whic serves as a handle and a little try for holding my stuff, just above this, attached to the pole is a pair of electronic IV pumps which connect up to the IV bags which hang from four hooks at the top. The first thing they did when I came into the hospital was hook me up to this, and I have been attached to it 24/7 since. Sleep, shower, walk, exercise bike ride, it didn't matter, I am hooked up to this thing. AND IT STOPS TODAY!!!!
My brother thinks I should get a blond wig, a pair of coconuts and a grass skirt and call her My Girl Friday. GOD I can't wait to get rid of this thing, that's going to make me so happy.
Dr. Happy Pants is thrilled I've done so well and said if I go home tomorrow it will be one of the earliest he's ever released a transplant patient, 12 days from transplant. He's very impressed with both my positive mental attitude and my body's response to the treatment. "I wish more patient's were like you, its makes my job much easier."
Having seen 9 patients transferred to ICU, and only 1 return, and knowing that most of them have made the final turn for home, I feel so blessed. I'm extremely lucky to have a strong body, and sound mind, a tremendous support group and an undaunting will. I will forever be grateful for all of those things, and so much more.
I'm a little scared to go home in a way though, because I fear those around me will assume that because I'm out of the hospital I'm back to normal. According to my doctor, I still have a long way to go to get out of the woods, and there will be every bit as much struggle at home as here. For several weeks, I will remain mostly bed ridden, forbidden from crowds, avoiding sick people, and taking lots of medications to prevent any followup infection which would land me back here.
Who the hell am I kidding, I can't wait to get the fuck outta here. Room 1596 has been great, the staff has been great, the hospital is very nice, but I'm ready to GO!!!!
Speaking of the future, I'm seriously thinking about becoming either a motivational speaker, or a life coach(or maybe some combination of both). I think the trials I've been through in battling cancer give me a perspective on life that's pretty healthy. I wonder how to find out more about those opportunities.
Today's Dream: A hammock strung between two palm trees, dangling invitingly close to a sugar sand beach, with a view of the gently breaking azure blue sea and a flag that brings fruity drinks from the bar.
Dr. Happy Pants just came by, he's great now that I'm feeling better. He says I'm probably going home tomorrow or Tuesday. They are stopping all my IV medications today and taking me off the drip, so I'm no longer married to my dancing partner. YAYAYAYAYAY!!!!
I have this pole on wheels which stands about 6' 4" tall. About waist high there's a metal ring, whic serves as a handle and a little try for holding my stuff, just above this, attached to the pole is a pair of electronic IV pumps which connect up to the IV bags which hang from four hooks at the top. The first thing they did when I came into the hospital was hook me up to this, and I have been attached to it 24/7 since. Sleep, shower, walk, exercise bike ride, it didn't matter, I am hooked up to this thing. AND IT STOPS TODAY!!!!
My brother thinks I should get a blond wig, a pair of coconuts and a grass skirt and call her My Girl Friday. GOD I can't wait to get rid of this thing, that's going to make me so happy.
Dr. Happy Pants is thrilled I've done so well and said if I go home tomorrow it will be one of the earliest he's ever released a transplant patient, 12 days from transplant. He's very impressed with both my positive mental attitude and my body's response to the treatment. "I wish more patient's were like you, its makes my job much easier."
Having seen 9 patients transferred to ICU, and only 1 return, and knowing that most of them have made the final turn for home, I feel so blessed. I'm extremely lucky to have a strong body, and sound mind, a tremendous support group and an undaunting will. I will forever be grateful for all of those things, and so much more.
I'm a little scared to go home in a way though, because I fear those around me will assume that because I'm out of the hospital I'm back to normal. According to my doctor, I still have a long way to go to get out of the woods, and there will be every bit as much struggle at home as here. For several weeks, I will remain mostly bed ridden, forbidden from crowds, avoiding sick people, and taking lots of medications to prevent any followup infection which would land me back here.
Who the hell am I kidding, I can't wait to get the fuck outta here. Room 1596 has been great, the staff has been great, the hospital is very nice, but I'm ready to GO!!!!
Speaking of the future, I'm seriously thinking about becoming either a motivational speaker, or a life coach(or maybe some combination of both). I think the trials I've been through in battling cancer give me a perspective on life that's pretty healthy. I wonder how to find out more about those opportunities.
Today's Dream: A hammock strung between two palm trees, dangling invitingly close to a sugar sand beach, with a view of the gently breaking azure blue sea and a flag that brings fruity drinks from the bar.
Saturday, September 13, 2008
T+10 Followup
Dr. Happy Pants stopped by my room first this morning on rounds. He couldn't believe how much my numbers had bounced back. He was very happy for me. He said if I don't run any more fevers this weekend, and the numbers hold up, he will let me go home Monday! WOHOOO!!!
I will still be very weak and sick and have to be very careful, but I won't be tied up in this little room anymore. I like the concept of that. Dad, who spent the night with me last night, was super excited as well. We couldn't believe it, I might get to go home two weeks ahead of schedule! Man, when my body sets itself t something, it gets it done. Course, I've always kinda been that way, so I shouldn't be surprised, but to see my numbers jump like they did today was amazing. Dr. Mehta said he was very impressed, he had not had anyone bounce up like that 10 days out from BEAM chemotherapy.
He also commented that he wished all his patients had bones like mine.
On my mile walk this morning, all the nurses and PCTs on the floor were very excited and happy. I think news like this coming after sending 9 patients to ICU in two days, was a welccome relief. There's certainly a sense in talking to them that they like to a cheer a little when one goes right. One nurse said I inspire them to keep going. Funny, I'm inspirational and I've done nothing more than my best to get outta here as soon as I can.
Maybe I'll have to figure out something nice to do for them when I'm out. Please post any ideas, because these men and women have been angels to me. And I owe them so much, I need to do something.
alot of emotion running through me today, there's definately a lump in my throat and the feeling that a major corner in my life is being turned. I feel like crying. Can't believe it. I did it.
I will still be very weak and sick and have to be very careful, but I won't be tied up in this little room anymore. I like the concept of that. Dad, who spent the night with me last night, was super excited as well. We couldn't believe it, I might get to go home two weeks ahead of schedule! Man, when my body sets itself t something, it gets it done. Course, I've always kinda been that way, so I shouldn't be surprised, but to see my numbers jump like they did today was amazing. Dr. Mehta said he was very impressed, he had not had anyone bounce up like that 10 days out from BEAM chemotherapy.
He also commented that he wished all his patients had bones like mine.
On my mile walk this morning, all the nurses and PCTs on the floor were very excited and happy. I think news like this coming after sending 9 patients to ICU in two days, was a welccome relief. There's certainly a sense in talking to them that they like to a cheer a little when one goes right. One nurse said I inspire them to keep going. Funny, I'm inspirational and I've done nothing more than my best to get outta here as soon as I can.
Maybe I'll have to figure out something nice to do for them when I'm out. Please post any ideas, because these men and women have been angels to me. And I owe them so much, I need to do something.
alot of emotion running through me today, there's definately a lump in my throat and the feeling that a major corner in my life is being turned. I feel like crying. Can't believe it. I did it.
T+10 Fun with People who think they know everything
Yesterday, when the doctors did rounds, they commented that my WBC was up to 0.4 and although my neutrophils were still TLTC, they took it as a sign I might be recovering. I told Dr. Mehta, you should be careful. This tough Texan's gonna shock you, tomorrow those numbers will be back and you'll have some explaining to do.
So, fast forward to 6:30 this morning when my nurse comes in to wake me for my medications and says, "I can't believe it Travis, you're no longer neutropenic." Really? What are my counts?
She then goes on, "your counts went up so much I at first thought maybe I got the wrong labels on you samples this morning, but I just know I got it right. i just can't believe your numbers. Your WBC is 2.1, up from 0.4, and your Neutrophils are 1.6, up from TLTC(keep in mind I only need Neutrophils above 1.5 for 3 days to get let outta here). I just can't believe it. Neutrophils take a week to 10 days to move 1 point, yours just moved 1.6 in one night!"
I told y'all yesterday when I came back I was coming like a house of fire, this is one tough Texan. She laughed and said the doctors won't believe it, so don't be surprised if we don't have to take more blood this morning. "Also, they're gonna tell you its just a spike and your counts will come back down."
Which they won't, my body hates doing things twice. BOOOOOOOOOOOOOOOOOOOYYYYYYYYYYYYYYYYYYYYAAAAAAAAAAAAHHHHHHH!!!!!
AND HAKUNA MATATA BITCHES!!!!!!!!!
WE MADE IT!!!!!!! I feel like dancing!!!!!!!! I'm no longer neutropenic, which means no more vitals every 4 hours, and a whole host of other things if they do what they've told me they will, but it kinda depends. I suspect they aren't going to believe me again.
I'll write more after Dr. Happy Pants comes around, I can't wait to hear what he has to say. Love to all, T
So, fast forward to 6:30 this morning when my nurse comes in to wake me for my medications and says, "I can't believe it Travis, you're no longer neutropenic." Really? What are my counts?
She then goes on, "your counts went up so much I at first thought maybe I got the wrong labels on you samples this morning, but I just know I got it right. i just can't believe your numbers. Your WBC is 2.1, up from 0.4, and your Neutrophils are 1.6, up from TLTC(keep in mind I only need Neutrophils above 1.5 for 3 days to get let outta here). I just can't believe it. Neutrophils take a week to 10 days to move 1 point, yours just moved 1.6 in one night!"
I told y'all yesterday when I came back I was coming like a house of fire, this is one tough Texan. She laughed and said the doctors won't believe it, so don't be surprised if we don't have to take more blood this morning. "Also, they're gonna tell you its just a spike and your counts will come back down."
Which they won't, my body hates doing things twice. BOOOOOOOOOOOOOOOOOOOYYYYYYYYYYYYYYYYYYYYAAAAAAAAAAAAHHHHHHH!!!!!
AND HAKUNA MATATA BITCHES!!!!!!!!!
WE MADE IT!!!!!!! I feel like dancing!!!!!!!! I'm no longer neutropenic, which means no more vitals every 4 hours, and a whole host of other things if they do what they've told me they will, but it kinda depends. I suspect they aren't going to believe me again.
I'll write more after Dr. Happy Pants comes around, I can't wait to hear what he has to say. Love to all, T
Friday, September 12, 2008
T+9 First Signs
Great news, my WBC is 0.4 today. So in the past 3 days it went from 0.1 to 0.2 to 0.4, meaning that some stem cells have engrafted and are partying it up! My doctors were very encouraged as this would be 3 days earlier than expected. However, they were quick to point out that even though I will at times feel a little better, there will still be major hiccups in the road. I will still spike fevers, get bloody noses, and have to be careful of all the stuff we are watching out for, but the doctors all agree these are signs the engrafting is taking place.
The counts will go up and down with some variability, but generally from here they should go pretty much up to a near normal level. Then, we can start evaluating my body's reaction to the treatment and chemotherapy. My neutrophils are still TLTC, but those go up last usually.
My lead Transplant doctor said this morning, "So far, really, your case has been what we look for in a Stem Cell Transplant case. Straight through the uprights." To which I had to add, "you mean like when Robbie Gold converts on a Devon Hester punt return." All three of the doctors on the rotation this morning laughed at that one, although the head doctor commented that he thought the Bears may find some offense this year. To which I couldn't help myself, I said, "Even a blind squirrel finds an acorn every once in a while."
Spirits were much better on rounds today, especially mine. Its dreary and overcast outside, and I could careless. It feels good to think that I may be finally turning the corner on this bitch. When I'm not running a fever, I do feel a bit better. And when I'm running a fever, I don't feel quite as bad, although its still pretty bad.
Today, for the first time, I realize I'm truly gonna beat this thing. I can begin to see the light at the end of the tunnel, and man am I ready to run into some daylight. I haven't decided what I'm going to do with myself after recovery, but I'm gonna do something great. This is too high a price to pay to just sit around and do nothing with my life.
Maybe I'll be quiet here a bit and ponder that...Hope y'all have a great day! Thanks for all the comments, posts and emails. I cannot begin to tell you all how much the support means to me. I may not respond to all of them, but I read each carefully and take them to heart. Y'all are ALOT of the wind under my wings. Thank you.
ADDENDUM
There was some sobering news on the floor we learned last night. Of the 14 patients currently undergoing STC, 6 have been removed to ICU in the past 48 hours. According to the nurses, that's not a good thing as it means the transplant is failing and there is nothing the doctors can do to help them. Sadly, one was a 25 year old kid I just met the other day. He was getting a transplant in treatment of his Leukemia. His room is empty today, and that hurts. The other one that shocked me was the 41 year old who started the same day I did. Our treatment were literally at the same time. Nurses would be in changing my IV, and he would beep them to change his. He was a bright, funny guy getting an autologus transplant for relapsed NHL. He went to ICU this morning. And his outlook is pretty grim. His room was empty on my walk this morning too.
Its hard not to cry about those. I'm blessed to be so strong and doing so well, and I know it. Because I see firsthand people who aren't so lucky. They start at the same point as I, but don't necessarily end up in the same outcome. I don't understand why that happens, I just feel honored and privilidged to walk the path I walk. I say a prayer for both Jessie and Chris.
The counts will go up and down with some variability, but generally from here they should go pretty much up to a near normal level. Then, we can start evaluating my body's reaction to the treatment and chemotherapy. My neutrophils are still TLTC, but those go up last usually.
My lead Transplant doctor said this morning, "So far, really, your case has been what we look for in a Stem Cell Transplant case. Straight through the uprights." To which I had to add, "you mean like when Robbie Gold converts on a Devon Hester punt return." All three of the doctors on the rotation this morning laughed at that one, although the head doctor commented that he thought the Bears may find some offense this year. To which I couldn't help myself, I said, "Even a blind squirrel finds an acorn every once in a while."
Spirits were much better on rounds today, especially mine. Its dreary and overcast outside, and I could careless. It feels good to think that I may be finally turning the corner on this bitch. When I'm not running a fever, I do feel a bit better. And when I'm running a fever, I don't feel quite as bad, although its still pretty bad.
Today, for the first time, I realize I'm truly gonna beat this thing. I can begin to see the light at the end of the tunnel, and man am I ready to run into some daylight. I haven't decided what I'm going to do with myself after recovery, but I'm gonna do something great. This is too high a price to pay to just sit around and do nothing with my life.
Maybe I'll be quiet here a bit and ponder that...Hope y'all have a great day! Thanks for all the comments, posts and emails. I cannot begin to tell you all how much the support means to me. I may not respond to all of them, but I read each carefully and take them to heart. Y'all are ALOT of the wind under my wings. Thank you.
ADDENDUM
There was some sobering news on the floor we learned last night. Of the 14 patients currently undergoing STC, 6 have been removed to ICU in the past 48 hours. According to the nurses, that's not a good thing as it means the transplant is failing and there is nothing the doctors can do to help them. Sadly, one was a 25 year old kid I just met the other day. He was getting a transplant in treatment of his Leukemia. His room is empty today, and that hurts. The other one that shocked me was the 41 year old who started the same day I did. Our treatment were literally at the same time. Nurses would be in changing my IV, and he would beep them to change his. He was a bright, funny guy getting an autologus transplant for relapsed NHL. He went to ICU this morning. And his outlook is pretty grim. His room was empty on my walk this morning too.
Its hard not to cry about those. I'm blessed to be so strong and doing so well, and I know it. Because I see firsthand people who aren't so lucky. They start at the same point as I, but don't necessarily end up in the same outcome. I don't understand why that happens, I just feel honored and privilidged to walk the path I walk. I say a prayer for both Jessie and Chris.
Thursday, September 11, 2008
T+8 One LONG SCARY Night
Last night, I spiked a fever about 8:00, right on schedule, and started a bloody nose shortly there after. Then, I began to get a terrible headache. On a scale of 1 to 10, it started as a 4-5, so I told the nurses and we watched carefully. Because of the spike in fever, once again we got blood cultures, a urine sample and since we haven't had a chest x-ray since Saturday night, we ordered one of those.
By 11:30, all the tests had been given and they gave me two Tylenol for my headache. They can't give me anti-inflammatory meds because they will hurt the stem cells. My bloody nose had come and gone several times, but we had a strategy for dealing with it, called slap an ice bag across my nose soon as it starts and freeze everything. However, the Tylenol worked like a snowball being tossed into a furnace, and about 11:30 the pain really began to increase. It rose to 8 on my pain scale, and had my eyes watering. It felt like someone had landed an axe in the bad of my head.
The nurses were very concerned because I had been having so many bloody noses, that maybe one of my sneezes had caused bleeding somewhere else. They pulled a platelet level immediately, and an hour later it came back at 13. Dangerously low, and requiring a platelet transfusion is active bleeding is present. However, my fever had climbed to 101.4, preventing the transfusion of platelets as the fever would destroy them upon their entering my bloodstream.
We had to get my fever broken, and with no response to the tylenol, the nurses and doctor were conferring about getting a head CT to insure I wasn't hemmorraging into my brain. They tried Tylenol -3, with codeine, to see if it would take the edge off, and hopefully break my fever also. To no avail.
The doctor then did a long series of neurological tests, which I passed but she wasn't happy with, so at 2:30, she ordered a head CT. She explained there were three things which could be going on that would be extremely dangerous, and one thing that could be going on that was no big deal. I could be having a brain hemmorage, a subdural hematoma(unlikely as I hadn't banged by head on anything, but possible), or internal bleeding against my brain stem. The risk of any one of those outcomes was enough to justify a head CT, so she was ordering one. The final option was that I simply was having an incredibly bad headache. The Tylenol-3 got the pain back down to a 5, but it was still pretty killer.
So, at 2:30, I sucked it up and called Honi to let her know what was going on. I couldn't face if there was an issue, having one of the nurses call her at 4 am to tell her what was going on. I was scared shitless, and hurt like hell. Honi was great. She felt it was the introduction of neupogen, which had started again.
In the middle of the night, the only CT scanner working in the network of buildings that make up NMH is in Feinberg Pavilion, by the emergency room. As a critial care patient though, a stat order on anything gets me priviledge. Transportation arrived about 3:00 for the 3 block trek over to Feinberg. Fortunately, the network is all connected underground, so it only took about 20 minutes to get over to the CT place.
By 4:30 I was back in bed, with my head exploding, but the relief of knowing that it wasn't any of the bad three items. The CT scans were negative. So then we had to begin trying to find a drug to knock the headache down. Finally, about 6 this morning, Fioricet, a migraine drug, knocked the stuffing out of me and laid my headache to rest.
And that concluded one of the longest, scariest nights of my life. I have to say, it went pretty well. I never really panicked. The staff here was terrific at laying out all the possibilities and all the outcomes for each, and maintaining an air of erring on the side of safety. Calling Honore turned out to be the right thing to do, as we talked this morning and she agreed she would have been pissed to get a call from the nurse saying I was going under the knife to relieve a brain hemmorrage without somekind of heads up.
Because of my depleted platelet situation, which will continue for another 5-7 days, we will have to be particularly careful about monitoring my nosebleeds and any sneezing that might cause internal bleeding. Also, I have to be extra careful not to fall, bruise my body in any way or cut myself with any kind of sharp object(not that I have any sharp objects per se, but its more being aware when I'm up walking around not to bang into anything).
Scary stuff. I don't remember reading any of the be prepared material talking about brain hemmorrages or internal bleeding or strokes. None of which I have any interest in. Fortunately, I'm in good, quality, professional care and we know what to look for. Meanwhile, I'm now exhausted and heading for bed. I'll update more tomorrow.
My WBC today was 0.2, up 0.1 from yesterday and my Absolute Neutrophils were TLTC(too low too count). These are the numbers we are waiting to go up, they are my immune system.
By 11:30, all the tests had been given and they gave me two Tylenol for my headache. They can't give me anti-inflammatory meds because they will hurt the stem cells. My bloody nose had come and gone several times, but we had a strategy for dealing with it, called slap an ice bag across my nose soon as it starts and freeze everything. However, the Tylenol worked like a snowball being tossed into a furnace, and about 11:30 the pain really began to increase. It rose to 8 on my pain scale, and had my eyes watering. It felt like someone had landed an axe in the bad of my head.
The nurses were very concerned because I had been having so many bloody noses, that maybe one of my sneezes had caused bleeding somewhere else. They pulled a platelet level immediately, and an hour later it came back at 13. Dangerously low, and requiring a platelet transfusion is active bleeding is present. However, my fever had climbed to 101.4, preventing the transfusion of platelets as the fever would destroy them upon their entering my bloodstream.
We had to get my fever broken, and with no response to the tylenol, the nurses and doctor were conferring about getting a head CT to insure I wasn't hemmorraging into my brain. They tried Tylenol -3, with codeine, to see if it would take the edge off, and hopefully break my fever also. To no avail.
The doctor then did a long series of neurological tests, which I passed but she wasn't happy with, so at 2:30, she ordered a head CT. She explained there were three things which could be going on that would be extremely dangerous, and one thing that could be going on that was no big deal. I could be having a brain hemmorage, a subdural hematoma(unlikely as I hadn't banged by head on anything, but possible), or internal bleeding against my brain stem. The risk of any one of those outcomes was enough to justify a head CT, so she was ordering one. The final option was that I simply was having an incredibly bad headache. The Tylenol-3 got the pain back down to a 5, but it was still pretty killer.
So, at 2:30, I sucked it up and called Honi to let her know what was going on. I couldn't face if there was an issue, having one of the nurses call her at 4 am to tell her what was going on. I was scared shitless, and hurt like hell. Honi was great. She felt it was the introduction of neupogen, which had started again.
In the middle of the night, the only CT scanner working in the network of buildings that make up NMH is in Feinberg Pavilion, by the emergency room. As a critial care patient though, a stat order on anything gets me priviledge. Transportation arrived about 3:00 for the 3 block trek over to Feinberg. Fortunately, the network is all connected underground, so it only took about 20 minutes to get over to the CT place.
By 4:30 I was back in bed, with my head exploding, but the relief of knowing that it wasn't any of the bad three items. The CT scans were negative. So then we had to begin trying to find a drug to knock the headache down. Finally, about 6 this morning, Fioricet, a migraine drug, knocked the stuffing out of me and laid my headache to rest.
And that concluded one of the longest, scariest nights of my life. I have to say, it went pretty well. I never really panicked. The staff here was terrific at laying out all the possibilities and all the outcomes for each, and maintaining an air of erring on the side of safety. Calling Honore turned out to be the right thing to do, as we talked this morning and she agreed she would have been pissed to get a call from the nurse saying I was going under the knife to relieve a brain hemmorrage without somekind of heads up.
Because of my depleted platelet situation, which will continue for another 5-7 days, we will have to be particularly careful about monitoring my nosebleeds and any sneezing that might cause internal bleeding. Also, I have to be extra careful not to fall, bruise my body in any way or cut myself with any kind of sharp object(not that I have any sharp objects per se, but its more being aware when I'm up walking around not to bang into anything).
Scary stuff. I don't remember reading any of the be prepared material talking about brain hemmorrages or internal bleeding or strokes. None of which I have any interest in. Fortunately, I'm in good, quality, professional care and we know what to look for. Meanwhile, I'm now exhausted and heading for bed. I'll update more tomorrow.
My WBC today was 0.2, up 0.1 from yesterday and my Absolute Neutrophils were TLTC(too low too count). These are the numbers we are waiting to go up, they are my immune system.
Wednesday, September 10, 2008
T+7 Grinding it out
Still hanging in there, grinding it out waiting for my stem cells to decide they want to try and win this drag race. UGH, lazy bums. I hope I didn't get the Cubs of stem cells. Another long night last night of bloody noses for 2.5 hours, blood transfusions, platelet transfusions, running a fever every time I turn around. Pretty much all the same shit, but a different evening.
Oh, but my optimist of a doctor thinks I'm doing great, I look great, sound great, I make jokes. Inside I'm laughing because I know he'll never have to go through this, so he can't appreciate the energy it takes to be cordial to him in the morning.
Managed to make it till 10:30 this morning before my fever kicked in again. They still don't know what infection is causing the fevers, so they are adding another IV antibiotic, Vancomycin(sp?), in addition to the ceflefan(Sp?) I already get every 5 hours.
Dr. Happy Pants still thinks Sunday will be my big turnaround day. They all agree, once my system comes back on line, all this feeling like shit goes by the wayside pretty quick. I still won't feel as well, but I won't be refusing food or drink.
This is far harder than I imagined in writing my speech for Leukemia Cup Regatta. When I gave that speech, I would have thought, that sort of outlines the worst case scenarios, but that won't happen to me. Guess what, all those scenarios happen to just about everyone who goes through this, and they stack up, so they feel worse than one might expect.
Tomorrow I will have been in here two weeks. I sorta feel like that should count for something, but its really nothing more than a measure of time I've been in here. We're still planning on me being here a month, and then transferring home, where I can't imagine I'll be terribly strong. I'm weak as a kitten now, and losing weight pretty good. I wouldn't reccommend chemotherapy as a drastic weight loss solution, but the most I've weighed here is 228.9 and now I weigh 211.2. Weight Watchers would be pissed if I reported a weight loss of 17 lbs. in 10 days. HAHAHAHA.
I'm laughing at myself there...so on that note, I'll sign off for today. Love and hugs to all. Thanks for all your support, and loving kindness. I know you're out there, and it means alot to me.
Travis
Oh, but my optimist of a doctor thinks I'm doing great, I look great, sound great, I make jokes. Inside I'm laughing because I know he'll never have to go through this, so he can't appreciate the energy it takes to be cordial to him in the morning.
Managed to make it till 10:30 this morning before my fever kicked in again. They still don't know what infection is causing the fevers, so they are adding another IV antibiotic, Vancomycin(sp?), in addition to the ceflefan(Sp?) I already get every 5 hours.
Dr. Happy Pants still thinks Sunday will be my big turnaround day. They all agree, once my system comes back on line, all this feeling like shit goes by the wayside pretty quick. I still won't feel as well, but I won't be refusing food or drink.
This is far harder than I imagined in writing my speech for Leukemia Cup Regatta. When I gave that speech, I would have thought, that sort of outlines the worst case scenarios, but that won't happen to me. Guess what, all those scenarios happen to just about everyone who goes through this, and they stack up, so they feel worse than one might expect.
Tomorrow I will have been in here two weeks. I sorta feel like that should count for something, but its really nothing more than a measure of time I've been in here. We're still planning on me being here a month, and then transferring home, where I can't imagine I'll be terribly strong. I'm weak as a kitten now, and losing weight pretty good. I wouldn't reccommend chemotherapy as a drastic weight loss solution, but the most I've weighed here is 228.9 and now I weigh 211.2. Weight Watchers would be pissed if I reported a weight loss of 17 lbs. in 10 days. HAHAHAHA.
I'm laughing at myself there...so on that note, I'll sign off for today. Love and hugs to all. Thanks for all your support, and loving kindness. I know you're out there, and it means alot to me.
Travis
Tuesday, September 9, 2008
T+6
No writing simply means I'm not doing well enough to share. I am more than happy to share my progress, but I've been feeling so worn out all I do is lay in bed and sleep. I have to force myself to walk a mile everyday, which they want to strengthen my body and keep from getting bedsores.
I haven't eaten a full meal of anything in three days. The nausea medications keep me from vomiting, but putting something on my stomach is simply too much. They have me drinking Ensure or Boost twice a day, and give me IV supplements to keep me going. I feel like canned dogfood, but the good news is it should only last through Sunday. By Sunday or Monday, I should be feeling better.
I have basically had all the side effects they warned us about, and they are just as bad as I imagined they would be. I've been running a temp over 100.5 for 2.5 days now, which drives my heart rate up to about 120, even laying in bed. So I feel exhausted.
My Neutrophils are now uncountable on the daily blood test, and my white blood cells are below 0.1. Now, we're just waiting for the engrafting and creating new WBC so I can feel better about things. My RBC and Platelets are so low I am getting transfusions every day. Two units of A-, and a unit of platelets.
Last night, I sneezed and my nose started bleeding. Fortunately my nurse came in the room just then for something else and saw blood flowing everywhere. We quickly got a sample to the lab, and determined I didn't have enough platelets to stop the bleeding, so I got platelets transfused. Now, I'm terrified to blow my nose. My nose bled for a solid hour while we waited for the tests to come back.
Now I get blood tests, urine tests, stool samples, vitals(blood pressure, heart rate, temp), and any other stupid probing or prodding of my body they can dream up, every four hours. Its a veritable party around here.
Fortunately, the nursing and PCT staff here are ANGELS. They are absolutely terrific. They handle everything calmly, efficiently and thoroughly, and manage to keep me on an even keel at the same time. They are all in love with HOPE though and practically beg me to get better so Honi can bring her by to visit. She can't come while I'm running a temp or having any other issues.
Exhaustion wins, I'm taking a nap. If I'm up to it I'll write more tomorrow, otherwise till we meet again. T
I haven't eaten a full meal of anything in three days. The nausea medications keep me from vomiting, but putting something on my stomach is simply too much. They have me drinking Ensure or Boost twice a day, and give me IV supplements to keep me going. I feel like canned dogfood, but the good news is it should only last through Sunday. By Sunday or Monday, I should be feeling better.
I have basically had all the side effects they warned us about, and they are just as bad as I imagined they would be. I've been running a temp over 100.5 for 2.5 days now, which drives my heart rate up to about 120, even laying in bed. So I feel exhausted.
My Neutrophils are now uncountable on the daily blood test, and my white blood cells are below 0.1. Now, we're just waiting for the engrafting and creating new WBC so I can feel better about things. My RBC and Platelets are so low I am getting transfusions every day. Two units of A-, and a unit of platelets.
Last night, I sneezed and my nose started bleeding. Fortunately my nurse came in the room just then for something else and saw blood flowing everywhere. We quickly got a sample to the lab, and determined I didn't have enough platelets to stop the bleeding, so I got platelets transfused. Now, I'm terrified to blow my nose. My nose bled for a solid hour while we waited for the tests to come back.
Now I get blood tests, urine tests, stool samples, vitals(blood pressure, heart rate, temp), and any other stupid probing or prodding of my body they can dream up, every four hours. Its a veritable party around here.
Fortunately, the nursing and PCT staff here are ANGELS. They are absolutely terrific. They handle everything calmly, efficiently and thoroughly, and manage to keep me on an even keel at the same time. They are all in love with HOPE though and practically beg me to get better so Honi can bring her by to visit. She can't come while I'm running a temp or having any other issues.
Exhaustion wins, I'm taking a nap. If I'm up to it I'll write more tomorrow, otherwise till we meet again. T
Sunday, September 7, 2008
Sunday T+4
WOW, did the Malfalon lay me out. I felt so bad Friday and Saturday I couldn't even turn the computer on, much less post. Exhausted, drained, fatigued, like a building dropped on me, these are all descriptions for how bad I felt, but don't really give a true impression.
Yesterday, my WBC finally fell below 1.0 to 0.4, which is neutropenic(meaning no immune system). So they were giving me lots of antibiotics, antivirals and antifungals, to try and keep any infection at bay. Alas, about 10:00 last night, my body finally succumbed and spiked a 101 fever. 100.5 is enough to send them scurrying. They checked my blood, did a urine sample, sent me for a chest x-ray at 1:00 am and started me on IV antibiotics, which are even stronger. They also began running my vital signs every four hours, which makes sleeping a bit interesting. Getting your blood pressure checked while in your sleep in kinda freaky.
They have to treat any fever with so much action because they don't know the cause of the infection/fever. It could just be that I'm neutropenic, but it could be something worse. Because I've no immune system, they have to err on the safe side. By this morning, by temperature had come down to 99.0 and I was no longer sweating like crazy. I can't say I feel any better, because I'm even more exhausted than yesterday, but that's mostly because of the lack of sleep from all the testing.
They are telling me my stem cells should engraft and begin re-creating my immune system in the next 4-5 days, and that when that happens, I will begin feeling alot better. In the meantime, the threat of fevers and more tests will remain high. Although, I'm encouraged because my doctor says I look good and am doing well spirits wise, which is a huge help according to her.
Thank GOD for college football. Man, I love getting to watch so many games. Small consolation for how bad I feel, but its something. Peace out, I'm off to my morning nap. T
Yesterday, my WBC finally fell below 1.0 to 0.4, which is neutropenic(meaning no immune system). So they were giving me lots of antibiotics, antivirals and antifungals, to try and keep any infection at bay. Alas, about 10:00 last night, my body finally succumbed and spiked a 101 fever. 100.5 is enough to send them scurrying. They checked my blood, did a urine sample, sent me for a chest x-ray at 1:00 am and started me on IV antibiotics, which are even stronger. They also began running my vital signs every four hours, which makes sleeping a bit interesting. Getting your blood pressure checked while in your sleep in kinda freaky.
They have to treat any fever with so much action because they don't know the cause of the infection/fever. It could just be that I'm neutropenic, but it could be something worse. Because I've no immune system, they have to err on the safe side. By this morning, by temperature had come down to 99.0 and I was no longer sweating like crazy. I can't say I feel any better, because I'm even more exhausted than yesterday, but that's mostly because of the lack of sleep from all the testing.
They are telling me my stem cells should engraft and begin re-creating my immune system in the next 4-5 days, and that when that happens, I will begin feeling alot better. In the meantime, the threat of fevers and more tests will remain high. Although, I'm encouraged because my doctor says I look good and am doing well spirits wise, which is a huge help according to her.
Thank GOD for college football. Man, I love getting to watch so many games. Small consolation for how bad I feel, but its something. Peace out, I'm off to my morning nap. T
Thursday, September 4, 2008
T+1
Today is actually a bit of a rest day. The Malfalon should be completeing its effect today and/or tomorrow, leaving me at the lowest point according to my doctors, and I will stay feeling pretty low until my stem cells engraft and produce a new immune system, T+6 or so. I don't feel too bad though. I slept almost 14 hours last night, which I haven't done since I was a teenager, and couldn't have possibly achieved except that they kept giving me ativan to keep me asleep.
My spirits are pretty good this morning. I'm glad there's no more chemotherapy to go through, and I'm glad the transfer's complete. I feel a HUGE sense of relief at how well the first part went. I've seen a number of other transplant cases on my floor and many of them don't look like they are doing nearly as well. It was hard enough on me, I can't imagine what it would be like to really struggle through the procedure. Thank goodness for great nurses and good drugs. Better living through chemistry certainly applies.
I do still find myself wondering why me sometimes. I didn't pick this intentionally, nor would I given the chance. But that's a tough place to go, why do things happen to people? Is there a deeper explanation or is it simple randomness in the universe? Personally, I like to believe there's a deeper explanation, but having to go through the ordeal of NHL, I would like to have a better understanding of the explanation if it were possible. Maybe someday I'll comprehend it better.
Oh well, something for me to ponder and help pass the day. Going to eat a little breakfast, then I'll go for a bike ride and a shower. How's that for a busy day? Doesn't sound like much till I remember that the guy riding the bike has no immune system........ttfn
My spirits are pretty good this morning. I'm glad there's no more chemotherapy to go through, and I'm glad the transfer's complete. I feel a HUGE sense of relief at how well the first part went. I've seen a number of other transplant cases on my floor and many of them don't look like they are doing nearly as well. It was hard enough on me, I can't imagine what it would be like to really struggle through the procedure. Thank goodness for great nurses and good drugs. Better living through chemistry certainly applies.
I do still find myself wondering why me sometimes. I didn't pick this intentionally, nor would I given the chance. But that's a tough place to go, why do things happen to people? Is there a deeper explanation or is it simple randomness in the universe? Personally, I like to believe there's a deeper explanation, but having to go through the ordeal of NHL, I would like to have a better understanding of the explanation if it were possible. Maybe someday I'll comprehend it better.
Oh well, something for me to ponder and help pass the day. Going to eat a little breakfast, then I'll go for a bike ride and a shower. How's that for a busy day? Doesn't sound like much till I remember that the guy riding the bike has no immune system........ttfn
Wednesday, September 3, 2008
Happy Birthday!!!
As they call tranplant day around here, its funny in all the paperwork they talk about it being anti-climatic because the drugs effects last for several more days, but the staff around here is all excited. They keep saying how exciting it is and how I'm doing great and things are going so well. A strange juxtaposition.
So, at 1:00 pm today, following a brief blessing of my stem cells, they will be ceremoniously plunged back into my blood stream with strict orders to find their way to my bone marrow as quickly as possible, graft to their new home and begin making blood cells. Kinda cool if you ask me.
I feel surprisingly well. I slept great last night, except for having to be woken up at 5:30 for my vital signs. Unfortunately, my heartrate was highly elevated, so they then had to run an EKG, which we're still awaiting the comparasin results on. It should be ok, most likely a case of getting out of be too quickly, according to the doctor.
The malfolan yesterday was basically a sleep fest for me. They had me so pumped up on ativan, zofram, prednisone and benadryl I ended up sleeping through the whole thing. Honore and Mom took turns shoving ice down my throat to keep the mouth sores under control. But I don't really remember that part too much.
Breakfast arrived, and I'm hungry to ttfn. T
So, at 1:00 pm today, following a brief blessing of my stem cells, they will be ceremoniously plunged back into my blood stream with strict orders to find their way to my bone marrow as quickly as possible, graft to their new home and begin making blood cells. Kinda cool if you ask me.
I feel surprisingly well. I slept great last night, except for having to be woken up at 5:30 for my vital signs. Unfortunately, my heartrate was highly elevated, so they then had to run an EKG, which we're still awaiting the comparasin results on. It should be ok, most likely a case of getting out of be too quickly, according to the doctor.
The malfolan yesterday was basically a sleep fest for me. They had me so pumped up on ativan, zofram, prednisone and benadryl I ended up sleeping through the whole thing. Honore and Mom took turns shoving ice down my throat to keep the mouth sores under control. But I don't really remember that part too much.
Breakfast arrived, and I'm hungry to ttfn. T
Tuesday, September 2, 2008
T-1
Yesterday was THE BEST!!! My doctors let Honore bring Hope to visit me!!! It was like a giant ray of sunshine on the darkest day. She got to come for like 2 hours in the morning, and was awesome!!! Since I left her last week, she's learned to sit all the way up on her own, she's scooting forward(very close to crawling), and she's got a tooth!!! What a BIG GIRL!!! I was so happy to see them. Honore brought me a couple of fun presents and she went to TGIFriday's for lunch, I ate potato skins and a cheeseburger. (the food here is less than optimal) The only good thing about being in here is nobody gives a damn what I eat, as long as I have an appetite. Its awesome.
Huge day today, last of the chemotherapeutic agents goes on board! It's the biggest, worst one, but after this, there will be no adding stuff to make me sicker or kill more of me. My nurse describe the first six days of chemotherapy perfectly, its like the start of a roller coaster. You slowly clank upwards, higher and higher, loading your body with more and more poison, then at the very tippy top, they give you a booster straight up and then you turn over the top and come screaming down.
The down happens very quickly, 1-2 days, and you stay down until your stem cells graft and begin producing WBC/RBC/Platelets/etc., which usually occurs in 6-10 days. To give you an idea of how low, a normal person my size, 6' 2" 215#, would have a WBC count between 4.5 and 9.5. At the low point in the next couple of days, my WBC count will be between 0.1 and 0.01. My platelets, normally around 200 will be down to 10, below 10 they transfuse platelets. And RBC, normally between 9.5 and 12.5, will fall to around 8.0, below that they will be transfused also as severe deoxygenation sets in, robbing my vital organs of O2.
There's no acute pain associated with any of this, its really more exhaustion and fatigue as my body starves for O2. Doctors monitor everything very closely and will give me fluids and nutrition intraveinously as needed. I also get antibacterial, antifungal and antiviral medications by IV beginning today. Today's drug, Melfalon(sp?), must be some serious stuff. They are pre-medicating me with a large IV bag of Zofram(anti-nausea), IV hydrocortisone, IV benadryl, and IV ativan. Then, the Melfalon only takes 30 minutes to infuse. Basically, its good night Betty for me see y'all tomorrow.
But here's the good news, there's no more shit going in. I can see the bottom, I know it sucks, but I know I'm strong enough to pull through it. So let's get it on!
Peace out and keep your powder dry! T
Huge day today, last of the chemotherapeutic agents goes on board! It's the biggest, worst one, but after this, there will be no adding stuff to make me sicker or kill more of me. My nurse describe the first six days of chemotherapy perfectly, its like the start of a roller coaster. You slowly clank upwards, higher and higher, loading your body with more and more poison, then at the very tippy top, they give you a booster straight up and then you turn over the top and come screaming down.
The down happens very quickly, 1-2 days, and you stay down until your stem cells graft and begin producing WBC/RBC/Platelets/etc., which usually occurs in 6-10 days. To give you an idea of how low, a normal person my size, 6' 2" 215#, would have a WBC count between 4.5 and 9.5. At the low point in the next couple of days, my WBC count will be between 0.1 and 0.01. My platelets, normally around 200 will be down to 10, below 10 they transfuse platelets. And RBC, normally between 9.5 and 12.5, will fall to around 8.0, below that they will be transfused also as severe deoxygenation sets in, robbing my vital organs of O2.
There's no acute pain associated with any of this, its really more exhaustion and fatigue as my body starves for O2. Doctors monitor everything very closely and will give me fluids and nutrition intraveinously as needed. I also get antibacterial, antifungal and antiviral medications by IV beginning today. Today's drug, Melfalon(sp?), must be some serious stuff. They are pre-medicating me with a large IV bag of Zofram(anti-nausea), IV hydrocortisone, IV benadryl, and IV ativan. Then, the Melfalon only takes 30 minutes to infuse. Basically, its good night Betty for me see y'all tomorrow.
But here's the good news, there's no more shit going in. I can see the bottom, I know it sucks, but I know I'm strong enough to pull through it. So let's get it on!
Peace out and keep your powder dry! T
Monday, September 1, 2008
T-2 - THANK GOD!!!
Today's the last day of 4 hours of chemo in the morning, and 4 hours in the evening with so many bags of fluid stuck inbetween that I gain 6-8 pounds which I then have to pee off at night. I'm so sick of my joints feeling so swollen and my head feeling like its sloshing around on top of my body. And I don't even get a decent buzz out of the deal.
Seriously though, I'm very excited this morning because I am coming to the end of the chemotherapy treatment. Only one more round tonight and then a different round tomorrow and I'm done. Stem cells go back in on Wednesday. So far, my WBC have held up remarkably well, so although I feel bad, its not as bad as it could be. Overall, I generally just feel really, really weak and tired. There's no acute pain, but the dull ache is plenty for me.
Allissa, my nurse, says that by having my counts stay up for so long, the really bottom days could be shorter because my new stem cells will be making replacements for the dying WBC, RBC and platlets, so once again my tough assed bone marrow comes to the rescue. WHEW! I've walked around the isolation ward several times and seen some of the patients who aren't so lucky, and its pretty disturbing.
Thank God also that the transplant coordinator was so great about having me bring books, games, my computer, music, etc. Boredom is a KILLER in here. I don't feel like doing much, but my mind wanders all over the place. Hope and Honore gave me a digital picture frame for Father's Day which has been a blessing because I get to see so many pictures of friends and family all the time, that helps. And all the posters that y'all signed at the Leukemia cup weekend decorate my walls and really help to make me feel better when I'm down. And finally, I love having a little bag of snacks stowed in my closet so that when the chemo tastes terrible, which is most of the time, I'm not forced to turn to hospital food for salvation. My little boxes of cereal or popcorn are awesome.
Wish I had some pearl of wisdom or humor this morning, but I really don't. I'm tired because I have to get up so much during the night to pee I never really sleep more than 3 hours. Time to run, last bag of morning chemo. :) Yippee.....
Seriously though, I'm very excited this morning because I am coming to the end of the chemotherapy treatment. Only one more round tonight and then a different round tomorrow and I'm done. Stem cells go back in on Wednesday. So far, my WBC have held up remarkably well, so although I feel bad, its not as bad as it could be. Overall, I generally just feel really, really weak and tired. There's no acute pain, but the dull ache is plenty for me.
Allissa, my nurse, says that by having my counts stay up for so long, the really bottom days could be shorter because my new stem cells will be making replacements for the dying WBC, RBC and platlets, so once again my tough assed bone marrow comes to the rescue. WHEW! I've walked around the isolation ward several times and seen some of the patients who aren't so lucky, and its pretty disturbing.
Thank God also that the transplant coordinator was so great about having me bring books, games, my computer, music, etc. Boredom is a KILLER in here. I don't feel like doing much, but my mind wanders all over the place. Hope and Honore gave me a digital picture frame for Father's Day which has been a blessing because I get to see so many pictures of friends and family all the time, that helps. And all the posters that y'all signed at the Leukemia cup weekend decorate my walls and really help to make me feel better when I'm down. And finally, I love having a little bag of snacks stowed in my closet so that when the chemo tastes terrible, which is most of the time, I'm not forced to turn to hospital food for salvation. My little boxes of cereal or popcorn are awesome.
Wish I had some pearl of wisdom or humor this morning, but I really don't. I'm tired because I have to get up so much during the night to pee I never really sleep more than 3 hours. Time to run, last bag of morning chemo. :) Yippee.....
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