Loooooong day at the clinic today. My counts were down and I received a unit of blood and a unit of platelets. I also did some Pentamadine breathing. And had a CT Scan of my lungs.
The scan showed further improvement from the last scan a couple of weeks ago (I'm not sure pneumonia ever goes completely away!) But Dr. A ordered the scan because he heard a little wheeze in one lung. Drat. He said it could just be something bronchial with all the stuff in the air. So that's what I'm counting on.
I still feel good, though tired. I guess a Hg count of 6.6 would explain why I didn't get out of my chair much at all yesterday. I notice occasionally when I run up the stairs too fast that I get a little breathless. Everything is relative though; it's nothing like it was in the summer before I went in the hospital the first time.
Dr. A emphasized "Call about ANYTHING! Fever, cough, rash...." so I will take my temperature, observe my body and hopefully not have to call.
Monday I will have a bone marrow biopsy. If it shows good cells, then we schedule a new transplant and move forward. If it's empty, we wait a week. I think there will be good cells. That is why I feel so good. What we are waiting on for the next move is to see some new action in my bone marrow.
Looking forward to visiting with Walt and Conor this weekend. Walt will be here one more week then will go back to New Hampshire for a few weeks. He's hoping to house hunt in Johnson County this weekend.
Finally, even though I haven't turned on the Wii today, I was very amused by a friend's comments about the thing. She asked to wiimain anonymous so I have wiispected that wiiquest while sharing with you:
"I have no Wiiluctance in letting you use the puns; I'm glad you are Wiiceptive to Wiieally Wiierd mind states. Which ones will you Wii-iterate? Wiill your friends Wiitaliate for such bad puns being thrust upon them? I'm not sure I want credit for any of them; they expose the depth of my depravity. (For which I often have Wiimorse.)"
Friday, January 30, 2009
Wednesday, January 28, 2009
Do I or Don't I? [have chemo brain]
The clinic visit today was as expected. My WBC was .2 (up from .1 where it's been for a couple of weeks), Hg and Platelets high enough to need no transfusions. Liver counts normal--wow what does feel like? Mary said if everything is fine on Friday then we'll schedule a bone marrow biopsy for Monday and proceed.
I don't think I have chemo brain too seriously, but I totally forgot to call the transplant coordinator Monday like I was supposed to. So I don't have a new schedule. Walt is trying to plan a vacation and my transplant at the same time. I'm thinking this schedule is going to be as complicated as they come for my donor brother.
I've been spending at least 20 minutes playing Wii Fit each day, and sometimes a shorter second session. The thing laughs at me quite a lot. There is a ski jump game in the balance section and I've been slow to figure it out. Every time I hit the Start button to start down the ramp, a message, "takeoff failed," and a large snowball went tumbling across the screen. And every time I hit the Retry button, I felt like a fool. I decided it was a hopeless cause, kind of like me and Sudoku. Ain't gonna happen.
Joe, an aid at the hospital, was bragging about how good he was at the ski jump so I came home and slid on it some more. I have achieved takeoff a few times now. I have not figured out exactly how to squat to get my speed up so I can go a very long distance. Well, more accurately, I haven't figured how to REPEAT the squat that makes for a very long distance. My jump pairs tend to be 94 meters and 0 (takeoff failed.) So aside from keeping fit, it is amusing. I am hoping that Conor plays it this weekend so I'll have someone to compete with on the new games. My qualifications range from "unbalanced" to "yoga trainer" (this for deep breathing) to "almost expert." Who knew?
I do have an appetite, though I have to eat small meals to avoid nausea. Different things taste good to me this time. Coffee still tastes good, but hot tea is not very appealing, reverse of the usual. Water is just ghastly. Chocolate is only good if it crunches as in cookies. I'm still losing, but not so fast and I'm still in the acceptable range.
I feel pretty good. I don't like acting sick when I feel good. But I have things to do to get this body ready for the next series of events. I'm able to do a little bit of work, carefully writing everything down in case I do have chemo brain.
Only time will tell.
I don't think I have chemo brain too seriously, but I totally forgot to call the transplant coordinator Monday like I was supposed to. So I don't have a new schedule. Walt is trying to plan a vacation and my transplant at the same time. I'm thinking this schedule is going to be as complicated as they come for my donor brother.
I've been spending at least 20 minutes playing Wii Fit each day, and sometimes a shorter second session. The thing laughs at me quite a lot. There is a ski jump game in the balance section and I've been slow to figure it out. Every time I hit the Start button to start down the ramp, a message, "takeoff failed," and a large snowball went tumbling across the screen. And every time I hit the Retry button, I felt like a fool. I decided it was a hopeless cause, kind of like me and Sudoku. Ain't gonna happen.
Joe, an aid at the hospital, was bragging about how good he was at the ski jump so I came home and slid on it some more. I have achieved takeoff a few times now. I have not figured out exactly how to squat to get my speed up so I can go a very long distance. Well, more accurately, I haven't figured how to REPEAT the squat that makes for a very long distance. My jump pairs tend to be 94 meters and 0 (takeoff failed.) So aside from keeping fit, it is amusing. I am hoping that Conor plays it this weekend so I'll have someone to compete with on the new games. My qualifications range from "unbalanced" to "yoga trainer" (this for deep breathing) to "almost expert." Who knew?
I do have an appetite, though I have to eat small meals to avoid nausea. Different things taste good to me this time. Coffee still tastes good, but hot tea is not very appealing, reverse of the usual. Water is just ghastly. Chocolate is only good if it crunches as in cookies. I'm still losing, but not so fast and I'm still in the acceptable range.
I feel pretty good. I don't like acting sick when I feel good. But I have things to do to get this body ready for the next series of events. I'm able to do a little bit of work, carefully writing everything down in case I do have chemo brain.
Only time will tell.
Monday, January 26, 2009
An Intricate Game
Today looks very different than I expected it to look. Just over a week ago I expected to be getting a transfusion of Walt’s stem cells today: instead I am at the clinic getting a transfusion of platelets.
Walt and I came to the clinic for the consent meeting on Friday, Jan 16th. Dr. Ganguly was our host for the meeting, with my transplant coordinator, Beth. Ganguly was reluctant to move quite as fast on the transplant as planned because my liver was still inflamed from the gall bladder surgery. He first said let’s wait a week, then a day, then a week. It’s a delicate balance between the risk of leukemic cells returning and giving the body time to heal. He noted that the blast percentage in my bone marrow at the last biopsy was 4% and they could not proceed with a transplant unless it was less than 5%. So he ordered another biopsy to have more information.
The biopsy returned a blast number of 16% which changed everything. I went back into the hospital the very next morning for a round of induction chemo to get rid of the extra blasts. This chemo was more intense than the original induction chemo, but administered in 6 separate doses, rather than continuously as the first time. I had to sign my name before each new dose because changes in one’s signature can indicate the cerebellum is affected and they would have to delay starting the chemo. My signature made it through, though I don’t remember writing it all 6 times. I guess memory doesn’t count, except the physical.
My belly is only swollen at the wound sites and they are healing. I am amazed what this body can do. I don’t have enough platelets, but wounds heal anyway. I need a lot of sleep and a lot of calories. My weight is dropping a couple pounds a day, so I haven’t eaten enough yet. Which is a statement I might frame and refer to in the future when it seems like I only have to read a menu to gain a couple of pounds in a day.
My spirits are good. I am excited after marching through a chemo regimen relatively unscathed. I am pleased to be moving in what feels like a forward direction again.
Today Dr. A took me off the IV antibiotic because the team is confident I am past the risk of fever or infection. I got platelets to boost the counts because by design, the chemo damaged my marrow so it isn’t making enough of them right now. The goal of the chemo is to beat up the disease factory in my bone marrow so that the healthy factory can take over.
It’s kind of like the conference table in my head. Different people want different things and the stupid ones have to be ordered into submission somehow. (Wouldn’t it be handy if we could chemo the irregular people from our lives? Or at least their irregular impact on our minds?)
So when my marrow starts working again, it will be making good platelets, cells that mature as they should (rather than staying blasts for too long.) Dr. McGuirk says he wants to see my counts recover but he isn’t going to wait for it. I believe the current plan is to have a biopsy next week and then decide the next move.
Walt and I came to the clinic for the consent meeting on Friday, Jan 16th. Dr. Ganguly was our host for the meeting, with my transplant coordinator, Beth. Ganguly was reluctant to move quite as fast on the transplant as planned because my liver was still inflamed from the gall bladder surgery. He first said let’s wait a week, then a day, then a week. It’s a delicate balance between the risk of leukemic cells returning and giving the body time to heal. He noted that the blast percentage in my bone marrow at the last biopsy was 4% and they could not proceed with a transplant unless it was less than 5%. So he ordered another biopsy to have more information.
The biopsy returned a blast number of 16% which changed everything. I went back into the hospital the very next morning for a round of induction chemo to get rid of the extra blasts. This chemo was more intense than the original induction chemo, but administered in 6 separate doses, rather than continuously as the first time. I had to sign my name before each new dose because changes in one’s signature can indicate the cerebellum is affected and they would have to delay starting the chemo. My signature made it through, though I don’t remember writing it all 6 times. I guess memory doesn’t count, except the physical.
My belly is only swollen at the wound sites and they are healing. I am amazed what this body can do. I don’t have enough platelets, but wounds heal anyway. I need a lot of sleep and a lot of calories. My weight is dropping a couple pounds a day, so I haven’t eaten enough yet. Which is a statement I might frame and refer to in the future when it seems like I only have to read a menu to gain a couple of pounds in a day.
My spirits are good. I am excited after marching through a chemo regimen relatively unscathed. I am pleased to be moving in what feels like a forward direction again.
Today Dr. A took me off the IV antibiotic because the team is confident I am past the risk of fever or infection. I got platelets to boost the counts because by design, the chemo damaged my marrow so it isn’t making enough of them right now. The goal of the chemo is to beat up the disease factory in my bone marrow so that the healthy factory can take over.
It’s kind of like the conference table in my head. Different people want different things and the stupid ones have to be ordered into submission somehow. (Wouldn’t it be handy if we could chemo the irregular people from our lives? Or at least their irregular impact on our minds?)
So when my marrow starts working again, it will be making good platelets, cells that mature as they should (rather than staying blasts for too long.) Dr. McGuirk says he wants to see my counts recover but he isn’t going to wait for it. I believe the current plan is to have a biopsy next week and then decide the next move.
Saturday, January 24, 2009
Home Again, home again
It's nice to be home again. I was surprised at how weird it felt to get out of the car and walk into the house, up the stairs to my room. The last time I left the hospital, I had to be physically carried into the house and stairs were not even an option. I'm happy to reprogram that physical memory, and curious about observing it. When I first arrived in the hospital I had to remind myself when I wanted something that I could get out of bed and get it. I didn't need to wait for someone to do it for me.
Cousin Sara fetched me home from the hospital, and her sister Gail is in town from Denver this weekend. Walt is still lurking. Mom and Dad went to the lake last night, but returned in a hurry this morning when nobody answered the phone. It must have appeared to be a choreographed sidestep. I didn't have my hearing aid in. They didn't call my cell phone. Walt was in the shower when they called his cell. Anyway, all is well.
At the clinic this morning I only needed the antibiotic. Yesterday I got platelets and then a takeaway bag of Potassium. This was a pump and bag of fluid packaged up in a bag that looked like the fanny pack that went round the world. Fortunately, I did not have to wear it like a fanny pack. But my first experience with take home drugs and pumps was uneventful.
I feel the chemo fog settling in. On the one hand it's frustrating, on the other it seems to take the cares of the world down the road. More naps, less activity. I'm hoping I have seen the last of the nausea, for this round. My eyes are blurry, but so far I can still see the computer screen and the crossword puzzle.
Daily clinic visits for a while to receive this antibiotic (via IV) that is designed to kill everything in its path. I admit to feeling almost giddy that I've had chemo and come home and it all went exactly as expected. My confidence is considerably stronger facing the next round of preparation and recovery for the transplant. The liver counts are bobbing around normal and the site of the gall bladder surgery is comfortable.
Annie continues to send me daily snaps of Harrison. Today's photo included Conor and the dog!
Cathi
Cousin Sara fetched me home from the hospital, and her sister Gail is in town from Denver this weekend. Walt is still lurking. Mom and Dad went to the lake last night, but returned in a hurry this morning when nobody answered the phone. It must have appeared to be a choreographed sidestep. I didn't have my hearing aid in. They didn't call my cell phone. Walt was in the shower when they called his cell. Anyway, all is well.
At the clinic this morning I only needed the antibiotic. Yesterday I got platelets and then a takeaway bag of Potassium. This was a pump and bag of fluid packaged up in a bag that looked like the fanny pack that went round the world. Fortunately, I did not have to wear it like a fanny pack. But my first experience with take home drugs and pumps was uneventful.
I feel the chemo fog settling in. On the one hand it's frustrating, on the other it seems to take the cares of the world down the road. More naps, less activity. I'm hoping I have seen the last of the nausea, for this round. My eyes are blurry, but so far I can still see the computer screen and the crossword puzzle.
Daily clinic visits for a while to receive this antibiotic (via IV) that is designed to kill everything in its path. I admit to feeling almost giddy that I've had chemo and come home and it all went exactly as expected. My confidence is considerably stronger facing the next round of preparation and recovery for the transplant. The liver counts are bobbing around normal and the site of the gall bladder surgery is comfortable.
Annie continues to send me daily snaps of Harrison. Today's photo included Conor and the dog!
Cathi
Thursday, January 22, 2009
Attitude Turnaround
I am on day 6 in the hospital and I feel a 180 degree turnaround in attitude. This was a great respite and space from everyone. I’ve had few visitors, pretty much done just what I wanted to do. Even cry myself to sleep Saturday night.
I’ve seen my favorite nurses and aids. They have either been assigned to me, or found a way to come and work with me. Robin has been my nurse two days. Leslee was my night nurse last night. I didn’t remember her because she took care of me when I came out of ICU and couldn’t hear and only barely see. She said she worked with my sister to try to figure out what I was saying. Leslee said “you were always very nice, but what a different person you are now!” (Nice to report to my mother that her years of teaching good manners paid off--I apparently have them so ingrained that even when I'm out of it I use them.)
Little Megan is a sweet aid and she found me crying Saturday night and stayed late to soothe me to sleep. Very nice. Lauren who was my night nurse for so long when I first came in was on duty last night and she got Leslee to let her start my blood last night. That requires the nurse be in the room for 15 minutes with the patient so I had a good visit with her. Joe has been the aid on days several days and he’s good fun.
New nurses that I like are Keely on days and Celeste on nights. Morgan on nights was nice but all business. Dave the strange aid is still on nights…we all have a laugh about him. I’m sure he drives the staff crazy but I just amuse myself wondering what he’s thinking.
Walt has been here almost every morning with Starbucks and a newspaper. The hospital has a new menu for neutropenic diets. This means I can order anything on the menu which is surprisingly broad. Before I would select an item from the general menu and get a “you can’t have that” response. I would ask them to hold the lettuce or something and finally come up with something I could eat. This is much easier.
I’ve had only a couple of guests and that’s been terrific. I might be using up too many resources with guests that I need to be spending on myself. Keeping my head in the right place. Dr. McGuirk’s confidence coupled with the space and rest have been the perfect environment for getting prepared for the next phase.
And I should probably not underestimate the news that Walt will be moving back to Kansas City. Having him here working already is a calming influence on everyone.
I am heading home later this afternoon. I will have daily clinic visits for about two weeks. I'm taking an IV antibiotic to keep fevers at bay, to prevent any possibility of infection at the gall bladder site (which is much less painful) and whatever else it can attack. The plan now is to restart the transplant process in 4 weeks, but as always, it is a moving target.
I'll be at Mom & Dad's house again. Upstairs with my Wii Fit. Getting exercise and consuming 3000 calories! That's a lotta chocolate and cookies! I guess all the extra calories are to maintain my weight because I've noticed it falls no matter what I eat after chemo. Nice to have that feature after Halloween this year.
Conor has added my current address to the front of the blog to try to keep changing info available.
I’ve seen my favorite nurses and aids. They have either been assigned to me, or found a way to come and work with me. Robin has been my nurse two days. Leslee was my night nurse last night. I didn’t remember her because she took care of me when I came out of ICU and couldn’t hear and only barely see. She said she worked with my sister to try to figure out what I was saying. Leslee said “you were always very nice, but what a different person you are now!” (Nice to report to my mother that her years of teaching good manners paid off--I apparently have them so ingrained that even when I'm out of it I use them.)
Little Megan is a sweet aid and she found me crying Saturday night and stayed late to soothe me to sleep. Very nice. Lauren who was my night nurse for so long when I first came in was on duty last night and she got Leslee to let her start my blood last night. That requires the nurse be in the room for 15 minutes with the patient so I had a good visit with her. Joe has been the aid on days several days and he’s good fun.
New nurses that I like are Keely on days and Celeste on nights. Morgan on nights was nice but all business. Dave the strange aid is still on nights…we all have a laugh about him. I’m sure he drives the staff crazy but I just amuse myself wondering what he’s thinking.
Walt has been here almost every morning with Starbucks and a newspaper. The hospital has a new menu for neutropenic diets. This means I can order anything on the menu which is surprisingly broad. Before I would select an item from the general menu and get a “you can’t have that” response. I would ask them to hold the lettuce or something and finally come up with something I could eat. This is much easier.
I’ve had only a couple of guests and that’s been terrific. I might be using up too many resources with guests that I need to be spending on myself. Keeping my head in the right place. Dr. McGuirk’s confidence coupled with the space and rest have been the perfect environment for getting prepared for the next phase.
And I should probably not underestimate the news that Walt will be moving back to Kansas City. Having him here working already is a calming influence on everyone.
I am heading home later this afternoon. I will have daily clinic visits for about two weeks. I'm taking an IV antibiotic to keep fevers at bay, to prevent any possibility of infection at the gall bladder site (which is much less painful) and whatever else it can attack. The plan now is to restart the transplant process in 4 weeks, but as always, it is a moving target.
I'll be at Mom & Dad's house again. Upstairs with my Wii Fit. Getting exercise and consuming 3000 calories! That's a lotta chocolate and cookies! I guess all the extra calories are to maintain my weight because I've noticed it falls no matter what I eat after chemo. Nice to have that feature after Halloween this year.
Conor has added my current address to the front of the blog to try to keep changing info available.
Wednesday, January 21, 2009
Exactly as Planned
I have a nice change of pace being in the hospital this week. I'm slowed down, letting everyone else do the work. Walt comes by in the morning with coffee and the newspaper and in the evening to make sure I'm not crying.
I was crying most of the day Saturday. I couldn't seem to find the off button. I got my sinuses all irritated and then I didn't feel much better after all that. I was just scared. Worried not only about my health, but about all the people around me who seemed to be on a not quite even keel either. I need these people, all of them. And I appreciate them.
However, Sunday my head was in a better place even though my stomach was mostly in my mouth that day. Darn it. We were all scrambling to find something to settle the nausea. One of the things I've done at home often is let half an Ativan pill dissolve under my tongue, but it didn't have time to dissolve here. And so we've been down the list. Hopefully we have a combination of small bites and meds that will keep at least some of the food down this time.
I just started the 5th bag of chemo. Five of Six. The last one will start in the wee hours of the morning and I will go home tomorrow. Despite losing the majority of the food I have eaten in here, I have managed to gain weight, a few ounces each day. I guess that's an indicator of normalcy. After I spent 5 days in Boundary Waters eating dehydrated food, I only lost 4 pounds. sigh.
For once, a hospital visit has gone exactly as planned. I come in Saturday, get 3 days of chemo on alternate days, and I go home. Dr. McGuirk thinks I will not have to be at the clinic every day when I go home, but I'm leaning pretty heavily on transfusions again, so we'll see how that goes.
I feel great but I want to write because I might forget again. I watched the inauguration yesterday on TV and enjoyed that.
Last night I had a knock out headache so took heavy drugs and slept through the biggest loser, darn it! The headache is apparently part of the chemo side effects. I can deal with it as long as I know it's temporary.
So I'll keep you posted. Soon as I have a new schedule.
CSM
I was crying most of the day Saturday. I couldn't seem to find the off button. I got my sinuses all irritated and then I didn't feel much better after all that. I was just scared. Worried not only about my health, but about all the people around me who seemed to be on a not quite even keel either. I need these people, all of them. And I appreciate them.
However, Sunday my head was in a better place even though my stomach was mostly in my mouth that day. Darn it. We were all scrambling to find something to settle the nausea. One of the things I've done at home often is let half an Ativan pill dissolve under my tongue, but it didn't have time to dissolve here. And so we've been down the list. Hopefully we have a combination of small bites and meds that will keep at least some of the food down this time.
I just started the 5th bag of chemo. Five of Six. The last one will start in the wee hours of the morning and I will go home tomorrow. Despite losing the majority of the food I have eaten in here, I have managed to gain weight, a few ounces each day. I guess that's an indicator of normalcy. After I spent 5 days in Boundary Waters eating dehydrated food, I only lost 4 pounds. sigh.
For once, a hospital visit has gone exactly as planned. I come in Saturday, get 3 days of chemo on alternate days, and I go home. Dr. McGuirk thinks I will not have to be at the clinic every day when I go home, but I'm leaning pretty heavily on transfusions again, so we'll see how that goes.
I feel great but I want to write because I might forget again. I watched the inauguration yesterday on TV and enjoyed that.
Last night I had a knock out headache so took heavy drugs and slept through the biggest loser, darn it! The headache is apparently part of the chemo side effects. I can deal with it as long as I know it's temporary.
So I'll keep you posted. Soon as I have a new schedule.
CSM
Sunday, January 18, 2009
The target moves again
Notes from the hospital during the playoff games. Jeesh I hope Philly makes this TD.
The target has changed again today; should not [TOUCHDOWN! Philadelphia] be too big a surprise to everyone. It was a pleasant surprise to me.
What has happened is that the percentage of blasts in the bone marrow increased to 16% and a transplant can only happen if the blasts are under 5%. Blasts are immature cells in the bone marrow. Everyone has a certain percentage of immature cells because the bone marrow is constantly making new ones, but in a healthy factory, they mature fast enough and turnover (marrow not the football game) so that the level is not more than 5%. When I entered the hospital in July the number of blasts was around 35%...serious disease level.
Nobody is calling this Leukemia. The technical term is "bump in the road." Dr. McGuirk stated very confidently yesterday "this is a bump in the road. It delays the transplant about 4 weeks. We're still gonna have you back out there living your life a year from now."
The regimen is different than when I originally came to the hospital, and different from the clinic explanation Friday night. I will receive chemo (Cytarabine or "Ara-C") twice a day on days 1, 3 and 5. I expect to return to M&D's house 24 hours after finishing the last dose, hopefully Thursday or Friday. I recover and we resume the transplant process in 4 weeks. I don't know what they count the 4 weeks from, so expect more changes.
Now that I know I'm here for about a week, I kind of like being in the hospital for a while. The last 3 weeks have been such a roller coaster that it's nice to coast downhill for a while. It's also nice to be in a hospital bed that I can get out of any time I want. I have to remind myself of that...the hospital atmosphere includes the subconscious memory of August, 08 when I needed to call someone for everything. This is good practice for the real transplant stay when [Eagles score again!] I expect to be hiking the halls and biking regularly.
Carla came up yesterday and trimmed and styled my hair very carefully. I reminded her it didn't need to be perfect because it won't be on my head for long, but she is a perfectionist and it's a perfect style. So far, nobody has noticed the difference, sigh.
In other news, Walt has landed a plum new position with John Deere that will move him back to Kansas City. YIPPEE! I'll miss visiting him in New Hampshire, but sure will be fun to have him local. He started the job on Friday and does not have moving plans yet. He, and eventually his family, will be staying at my house in Overland Park giving them time to find the perfect house and not have to spend a long period in hotels as they have with other moves. Things have a way of working out.
My job is now two things, exercise and keep eating. I'll be working my way up the Wii Fit games and reducing my physical age. (I can gloatingly report that my physical age was only a bit more than 2 years older than my actual age while Conor's physical age was more than 15 years older than his actual age. ha ha)
The gall bladder surgery [and Philadelphia pulls ahead] stab wounds (another technical term) have healed enough to stop stabbing me and that awful laparoscopic gas has dissipated. I'm reluctant to stop writing since Philadelphia is scoring so much since I started, but I'll settle for waiting til the final score to hit publish.
Cathi
Dang. Cardinals pulled ahead
The target has changed again today; should not [TOUCHDOWN! Philadelphia] be too big a surprise to everyone. It was a pleasant surprise to me.
What has happened is that the percentage of blasts in the bone marrow increased to 16% and a transplant can only happen if the blasts are under 5%. Blasts are immature cells in the bone marrow. Everyone has a certain percentage of immature cells because the bone marrow is constantly making new ones, but in a healthy factory, they mature fast enough and turnover (marrow not the football game) so that the level is not more than 5%. When I entered the hospital in July the number of blasts was around 35%...serious disease level.
Nobody is calling this Leukemia. The technical term is "bump in the road." Dr. McGuirk stated very confidently yesterday "this is a bump in the road. It delays the transplant about 4 weeks. We're still gonna have you back out there living your life a year from now."
The regimen is different than when I originally came to the hospital, and different from the clinic explanation Friday night. I will receive chemo (Cytarabine or "Ara-C") twice a day on days 1, 3 and 5. I expect to return to M&D's house 24 hours after finishing the last dose, hopefully Thursday or Friday. I recover and we resume the transplant process in 4 weeks. I don't know what they count the 4 weeks from, so expect more changes.
Now that I know I'm here for about a week, I kind of like being in the hospital for a while. The last 3 weeks have been such a roller coaster that it's nice to coast downhill for a while. It's also nice to be in a hospital bed that I can get out of any time I want. I have to remind myself of that...the hospital atmosphere includes the subconscious memory of August, 08 when I needed to call someone for everything. This is good practice for the real transplant stay when [Eagles score again!] I expect to be hiking the halls and biking regularly.
Carla came up yesterday and trimmed and styled my hair very carefully. I reminded her it didn't need to be perfect because it won't be on my head for long, but she is a perfectionist and it's a perfect style. So far, nobody has noticed the difference, sigh.
In other news, Walt has landed a plum new position with John Deere that will move him back to Kansas City. YIPPEE! I'll miss visiting him in New Hampshire, but sure will be fun to have him local. He started the job on Friday and does not have moving plans yet. He, and eventually his family, will be staying at my house in Overland Park giving them time to find the perfect house and not have to spend a long period in hotels as they have with other moves. Things have a way of working out.
My job is now two things, exercise and keep eating. I'll be working my way up the Wii Fit games and reducing my physical age. (I can gloatingly report that my physical age was only a bit more than 2 years older than my actual age while Conor's physical age was more than 15 years older than his actual age. ha ha)
The gall bladder surgery [and Philadelphia pulls ahead] stab wounds (another technical term) have healed enough to stop stabbing me and that awful laparoscopic gas has dissipated. I'm reluctant to stop writing since Philadelphia is scoring so much since I started, but I'll settle for waiting til the final score to hit publish.
Cathi
Dang. Cardinals pulled ahead
Friday, January 16, 2009
Fri, 1.16 - Truly Rebooting
Well they say when you reboot that maybe you should power down, wait 10 seconds, then boot up. Perhaps that would be best way describe today's news.
Mom and Walt went to the clinic for the consent meeting with Ganguly. In case anyone's missed the last 6+ months of posts, we like Ganguly...a lot. He had a completely different spin / tone / bedside manner (call it what you will) regarding the odds of the full transplant. I'll try to boil it down to its simplest form here.
He's less concerned about the lower percentages of survival for 2 reasons:
1. Mom has a sibling donor. Most all clinical trials and therefore data thus far on these transplants were on open network donations. Not to mention matching on 10 of 10 criteria.
2. Graft vs. Host is the reason for the pessimism, and Mom exhibited zero (really even less than is ideal) graft vs. host in the mini-transplant.
This leads me to believe Ganguly thinks with completely doing away with mom's marrow that Walt's will have no problem 'taking over the house'. Sorry, but I had this quick visual of Mom stepping out of the house like she would when she used to travel for work. Walt would come and stay with Mark and me...so long as there were Lucky Charms there. Needless to say it was a little differently run house. :)
Now to the more serious stuff and bringing closure to my initial statement....
They did a bone marrow biopsy to assess how the blood was shaping up, and the preliminary results showed the leukemia has returned. This was the reason we had no time to spare in trying to get moving quickly on the full transplant so it was not completely unexpected especially when the falling platelets are considered. Earlier examinations had also shown Trisomy 8 (often an indicator of leukemic cells).
Mom did get to stay home tonight and will check in tomorrow for another round of induction similar to the first round she went through starting on 7.11. There honestly is a silver lining in this. Sure the transplant's moved back a minimum of 4 weeks or so now. Sure it means the hospital stay will be approximately 2 months.
However this will give Mom the opportunity to undergo a lower level of chemotherapy than she would have on the full transplant schedule. In my non-doctor opinion, that's not all bad. It'll give us a preview of how her lungs will react prior to subjecting them to more serious treatments that could encourage the earlier lung issues that put her into ICU. The concern is simply that another round of chemo is less than ideal.
So we'll report more when we know it, but for now that's what I mean by powering down prior to rebooting. It's not the exact same as hitting 'Restart', but while 'Shutting Down' and powering up may take longer - it's often cleaner and more effective!
I'm sure I'll have more over the coming days and weeks for anyone that's reading!
Conor
Mom and Walt went to the clinic for the consent meeting with Ganguly. In case anyone's missed the last 6+ months of posts, we like Ganguly...a lot. He had a completely different spin / tone / bedside manner (call it what you will) regarding the odds of the full transplant. I'll try to boil it down to its simplest form here.
He's less concerned about the lower percentages of survival for 2 reasons:
1. Mom has a sibling donor. Most all clinical trials and therefore data thus far on these transplants were on open network donations. Not to mention matching on 10 of 10 criteria.
2. Graft vs. Host is the reason for the pessimism, and Mom exhibited zero (really even less than is ideal) graft vs. host in the mini-transplant.
This leads me to believe Ganguly thinks with completely doing away with mom's marrow that Walt's will have no problem 'taking over the house'. Sorry, but I had this quick visual of Mom stepping out of the house like she would when she used to travel for work. Walt would come and stay with Mark and me...so long as there were Lucky Charms there. Needless to say it was a little differently run house. :)
Now to the more serious stuff and bringing closure to my initial statement....
They did a bone marrow biopsy to assess how the blood was shaping up, and the preliminary results showed the leukemia has returned. This was the reason we had no time to spare in trying to get moving quickly on the full transplant so it was not completely unexpected especially when the falling platelets are considered. Earlier examinations had also shown Trisomy 8 (often an indicator of leukemic cells).
Mom did get to stay home tonight and will check in tomorrow for another round of induction similar to the first round she went through starting on 7.11. There honestly is a silver lining in this. Sure the transplant's moved back a minimum of 4 weeks or so now. Sure it means the hospital stay will be approximately 2 months.
However this will give Mom the opportunity to undergo a lower level of chemotherapy than she would have on the full transplant schedule. In my non-doctor opinion, that's not all bad. It'll give us a preview of how her lungs will react prior to subjecting them to more serious treatments that could encourage the earlier lung issues that put her into ICU. The concern is simply that another round of chemo is less than ideal.
So we'll report more when we know it, but for now that's what I mean by powering down prior to rebooting. It's not the exact same as hitting 'Restart', but while 'Shutting Down' and powering up may take longer - it's often cleaner and more effective!
I'm sure I'll have more over the coming days and weeks for anyone that's reading!
Conor
P.S. I had to upload another couple of pictures of Gram and Harrison knocking around last weekend. Maybe we should have a vote on who seemed to have more fun.
Wednesday, January 14, 2009
Gallbladder is out
So was I for most of yesterday. The pain medication was really overwhelming. This morning I feel better, slept good last night. Had a last cuddle with Harrison yesterday before the kids returned to Chicago.
Today I have a laundry list of appointments at the clinic and the hospital. I'd really rather lay in the recliner with the remote all day, but hopefully the gas pains in my shoulders will work their way out by the end of today.
I received a lot of platelets and blood before and during the surgery. Hopefully boosting counts up to a feel good level.
The blog name change is to change the vibrations more toward ultimate recovery with the Bone Marrow Transplant.
Cathi
Today I have a laundry list of appointments at the clinic and the hospital. I'd really rather lay in the recliner with the remote all day, but hopefully the gas pains in my shoulders will work their way out by the end of today.
I received a lot of platelets and blood before and during the surgery. Hopefully boosting counts up to a feel good level.
The blog name change is to change the vibrations more toward ultimate recovery with the Bone Marrow Transplant.
Cathi
Sunday, January 11, 2009
Cuddle with Harrison & dates from Walt
What better way to get one's body and mind ready for a bone marrow transplant, than a cuddle with a new grandbaby? Conor and Annie are here with Harrison, and he is a keeper. Annie is a wise mother, and generous. Conor is an able and willing father. And Harrison is like his father, happy to go arms to arms and sleep when it's time. I spent almost all day yesterday holding him.... either jostling him a little longer before he ate, or snuggling while he slept.
This photo is from the blackberry...I haven't transferred the ones from the camera yet.
They give him Zantax and Maalox for acid reflux. Who knew? I think it's perfectly logical and I wish we had this information when Mark was a baby. Mark might have a different personality if he had not suffered so much when he was an infant. sigh.
On the other hand, how great that medicine and knowledge progresses, and that I am on the leading edge of bone marrow transplants.
Walt sent an email yesterday telling me he has a date for the transplant. It's interesting how this system works.... nobody told me the date! He expects to donate more stem cells on January 26th. I am excited. This brings the date closer...and the getting out healthy date closer. I will be able to serve as bridesmaid in Lisa's wedding on May 23rd.
Walt had a great explanation for this whole second procedure which makes me laugh and tells us how old his kids are. Here is Walt's explanation, edited for clarity.
"I am donating marrow again, and am scheduled to donate again on the same day Cathi is to receive. Like everything on this deal it is always a moving target. Cathi took 300ml before and will likely need that much or more this time. There is only 130ml of my WBC's that are frozen right now. Besides it is always good to have a some fresh ones... So I think this is real.
The story of not needing marrow and needing marrow is like any other. One's opinion one day changes the next day after the docs have had a chance to talk with each other. Stories are not always the same based on the day and interpretations. The official story is that I am donating again.
And who said my marrow did not work the first time? Walt's marrow worked great, infused into the bone tissue, repopulated and produced value added blood materials to sustain Cathi. It is the enemy and disease that did not work properly. They were to cower and disappear in my presence and while it worked for a while, the first procedure did not have absolute odds of success. It was considered experimental, but has shown success in the past with other patients. It was not the preferred method. The preferred method would have imminent results. My marrow is a perfect match and less antigens than other matches due to not having been pregnant. I have the Mary Poppins Marrow - "Practically perfect in every way."
Now they are doing it again, but the normal method. Kill all the bad marrow then drop in the good marrow. Cathi is now healthy and ready for this. After twice kicking her little bro out in 90 days, (a reference to when he lived with me) she has come to terms with the fact that she needs to be nicer to me, and more accepting of having me around.... It is highly likely that additional marrow transfusions will occur in the future. Additional marrow will again be harvested and frozen for future use. There is also another kind of cell which they may want to come and get from me. It does not require all the preparations that taking the stem cells requires."
So, we will have the next transplant, with all preferred preparation, using Mary Poppins bone marrow. I shall have to watch that movie and revisit the song lyrics to see what else I can glean from it that would make a good mantra.
Saturday, January 10, 2009
Getting the body ready
Welcome to the world of odds and risks, otherwise known as doom and gloom. We met with Dr. McGuirk Thursday about going forward with the transplant. There were a lot of percentages, and percentages of percentages. It was very hard to listen to. Janice asked a lot of questions and each of them drew another dire possibility. I am leaving that information to Janice to be in charge of. I am doing the part where I recover from each phase of the treatment.
Someone has to be in the long term healthy survivors. Might as well be me.
The gall bladder is coming out Monday, the 12th. The HIDA test was uneventful, but showed that my gall bladder, aside from having stones, has no "squeeze power." I met with the surgeon Saturday and liked him. A resident was working with him and I inquired whether he would be in on the surgery. He replied "I'm too far down the food chain for that yet." The surgery is expected to take 45 minutes and I should be able to go home Monday night.
After about 10 days of recovering at home, I will go in the hospital to start the transplant process. There will be total body radiation and there will be chemo. Then the transplant and recovery. I don't have details about the protocol yet.
Walt will be coming back to donate more cells. They want them fresh apparently. He says he'll bring the next installment of Star Wars.
So I'm getting my head around this whole game plan. Considering my strong, healthy body that I have now. And preparing it for the abuse it's about to take. Little longer meditation time, little longer stretches in yoga, more writing. But plenty of chocolate...we're fond of chocolate!
Conor and Annie are here with Harrison this weekend. This is good preparation, cuddling with my grandbaby.
I am going to change the blog a little and take leukemia out of the name. That's not part of what I'm dealing with. Today, I'm just dealing with lousy bone marrow. According to what I read, this should be simple to do and to follow.
Cathi
Someone has to be in the long term healthy survivors. Might as well be me.
The gall bladder is coming out Monday, the 12th. The HIDA test was uneventful, but showed that my gall bladder, aside from having stones, has no "squeeze power." I met with the surgeon Saturday and liked him. A resident was working with him and I inquired whether he would be in on the surgery. He replied "I'm too far down the food chain for that yet." The surgery is expected to take 45 minutes and I should be able to go home Monday night.
After about 10 days of recovering at home, I will go in the hospital to start the transplant process. There will be total body radiation and there will be chemo. Then the transplant and recovery. I don't have details about the protocol yet.
Walt will be coming back to donate more cells. They want them fresh apparently. He says he'll bring the next installment of Star Wars.
So I'm getting my head around this whole game plan. Considering my strong, healthy body that I have now. And preparing it for the abuse it's about to take. Little longer meditation time, little longer stretches in yoga, more writing. But plenty of chocolate...we're fond of chocolate!
Conor and Annie are here with Harrison this weekend. This is good preparation, cuddling with my grandbaby.
I am going to change the blog a little and take leukemia out of the name. That's not part of what I'm dealing with. Today, I'm just dealing with lousy bone marrow. According to what I read, this should be simple to do and to follow.
Cathi
Tuesday, January 6, 2009
Monday clinic visit
At the clinic yesterday I got another Neupogen shot. The WBC were up a bit and the Hg and Platelets were down a bit. But some other counts were up indicating the manufacturing plant is kicking in again. So overall, a decent report.
When I go to the clinic they ask me a standard series of questions each time. "On a scale of 1-10 what is your fatigue level?" "Do you have any pain?" "Constipation or diarhea?" And so on. Yesterday Apinya came in to ask the questions and I suggested that I ask her the questions. So we went down the list but when I asked her "any hot flashes or night sweats?" she giggled away from the list. The question is actually "chills or night sweats?" but hey, I'm a middle aged woman and I have hot flashes. I do NOT have chills!
This afternoon I am having a HIDA scan to look at the gall bladder in detail. Two hours in the scanner. Definitely taking the ipod with me.
I wake up in the morning and I wish this was someone else's life. Then I get up and put one foot in front of the other and it gets easier as the day goes on.
CM
When I go to the clinic they ask me a standard series of questions each time. "On a scale of 1-10 what is your fatigue level?" "Do you have any pain?" "Constipation or diarhea?" And so on. Yesterday Apinya came in to ask the questions and I suggested that I ask her the questions. So we went down the list but when I asked her "any hot flashes or night sweats?" she giggled away from the list. The question is actually "chills or night sweats?" but hey, I'm a middle aged woman and I have hot flashes. I do NOT have chills!
This afternoon I am having a HIDA scan to look at the gall bladder in detail. Two hours in the scanner. Definitely taking the ipod with me.
I wake up in the morning and I wish this was someone else's life. Then I get up and put one foot in front of the other and it gets easier as the day goes on.
CM
Sunday, January 4, 2009
Preparing.
I have been busy trying to organize my life so that I can drop off the radar again, though not for so long, and not so thoroughly. Also, having been through the hospital routine before, I have some idea what to expect and have been busy getting all my CDs downloaded to my new iPod touch.
Mark was here this weekend and ran a cable line to the bedroom upstairs and we hooked up the Wii in my bedroom. He helped Dad get his "Christmas present of the century" from my house to Dad's house. The present is a John Deere garden tractor from Walt; very cool. It was stowed in my garage in anticipation of Christmas Day, and Mom suggested that it could stay there til the weather warmed up for mowing season. But Dad said "it has a snow blade, I want to use it to clear the driveway." However, the poor thing has a flat tire so hopefully it won't snow for a couple more days. Mark and Dad found the leak and took the tire off to have it repaired. Dad's remark after this was "but the jack is going back to Manhattan tonight." Because Mark merely lifted the mower up so they could take the tire off.
This week will be a lot of clinic visits, scans and conferences to get the plan mapped out. I am getting my head around it.
Speaking of conferences, there is one going on in my head. One woman says I need to be thinking long term, imagine myself at the lake house next summer, the Winfield Bluegrass Festival next fall, the Chiefs games after that. Another one says well the future includes 6 months in a bedroom. Someone wants to know about the business. One is anxious to hold the grandbaby. SEVERAL are pounding the table and shouting. As chair I try to corral them all back to this day.
This day is what I have and the next months will unfold one day at a time. one hour, one minute, whatever it takes. I think I worry most that I'll be forgotten. How can you live inside for almost a year and still have a life? Perhaps at the end of it, this blog will answer that question. That's what I'm counting on.
csm
Mark was here this weekend and ran a cable line to the bedroom upstairs and we hooked up the Wii in my bedroom. He helped Dad get his "Christmas present of the century" from my house to Dad's house. The present is a John Deere garden tractor from Walt; very cool. It was stowed in my garage in anticipation of Christmas Day, and Mom suggested that it could stay there til the weather warmed up for mowing season. But Dad said "it has a snow blade, I want to use it to clear the driveway." However, the poor thing has a flat tire so hopefully it won't snow for a couple more days. Mark and Dad found the leak and took the tire off to have it repaired. Dad's remark after this was "but the jack is going back to Manhattan tonight." Because Mark merely lifted the mower up so they could take the tire off.
This week will be a lot of clinic visits, scans and conferences to get the plan mapped out. I am getting my head around it.
Speaking of conferences, there is one going on in my head. One woman says I need to be thinking long term, imagine myself at the lake house next summer, the Winfield Bluegrass Festival next fall, the Chiefs games after that. Another one says well the future includes 6 months in a bedroom. Someone wants to know about the business. One is anxious to hold the grandbaby. SEVERAL are pounding the table and shouting. As chair I try to corral them all back to this day.
This day is what I have and the next months will unfold one day at a time. one hour, one minute, whatever it takes. I think I worry most that I'll be forgotten. How can you live inside for almost a year and still have a life? Perhaps at the end of it, this blog will answer that question. That's what I'm counting on.
csm
Friday, January 2, 2009
Day 99 - BUT
New Year's Eve brought news of more detours or ditches.The Bone Marrow Transplant did not graft. Did not take. Did not work. Failed. Whatever. The bone marrow biopsy drawn on Monday the 29th was 80% Cathi, not moving in the right direction.
The news was a horrible disappointment but not a complete surprise to me. I've been uneasy about the numbers in recent weeks. This is the time when clinic visits should be stretching out and mine have been getting closer together. The reason I wanted to move home so desperately is I hoped that if I was living in my house and acting like a well person, my body would get the message and start behaving like a well body.
So. Next steps. A full myeloablative transplant. (where they kill my bone marrow first) Dr. McGuirk delivered this news on Wednesday and put it this way "I know your head has not been good recently and the last thing you want to hear is you have to do this for six more months. But you're young, you're healthy, if you can give up the next six months, we can get you thirty more years." So I signed on.
All the meds have been changed to prepare. The pill dish once again looks like an egg basket. I will have a CT scan of my lungs next week hoping they are clear, or more clear than the last scan. He would like to get the gall bladder out before starting the process (and so would I as it acted up again yesterday) but my current blood counts will have to improve to support any kind of surgery. My platelets are dropping so fast I'm in danger of losing flossing privileges!
The procedure involves 4 weeks in the hospital. Two weeks of chemo, the transplant, 2 weeks of recovery. Recovery is actually billed as 2-6 weeks in hospital. And the 100 day regimen. As before, the 100 days begins the day after the transplant.
I do not think that Walt will have to donate again. They froze enough from the first collection for a second transplant. Looking back I recall how casually the medical staff used the term "second transplant" and I register how many patients in this world of leukemia/bone marrow transplants have to repeat at least one procedure.
I am trying to keep my head in the moment and not think about next week even. Having the mini-transplant bought me time for my lungs to heal and my body to get strong. I am certainly stronger now than when I was admitted in July. I feel great, ironically.
I'm grateful for my support network and hope you guys are willing to reup with me.
Having said all this, it is a happy new year. Conor and Annie are bringing that baby down for me to cuddle before all this starts again.
Cathi
The news was a horrible disappointment but not a complete surprise to me. I've been uneasy about the numbers in recent weeks. This is the time when clinic visits should be stretching out and mine have been getting closer together. The reason I wanted to move home so desperately is I hoped that if I was living in my house and acting like a well person, my body would get the message and start behaving like a well body.
So. Next steps. A full myeloablative transplant. (where they kill my bone marrow first) Dr. McGuirk delivered this news on Wednesday and put it this way "I know your head has not been good recently and the last thing you want to hear is you have to do this for six more months. But you're young, you're healthy, if you can give up the next six months, we can get you thirty more years." So I signed on.
All the meds have been changed to prepare. The pill dish once again looks like an egg basket. I will have a CT scan of my lungs next week hoping they are clear, or more clear than the last scan. He would like to get the gall bladder out before starting the process (and so would I as it acted up again yesterday) but my current blood counts will have to improve to support any kind of surgery. My platelets are dropping so fast I'm in danger of losing flossing privileges!
The procedure involves 4 weeks in the hospital. Two weeks of chemo, the transplant, 2 weeks of recovery. Recovery is actually billed as 2-6 weeks in hospital. And the 100 day regimen. As before, the 100 days begins the day after the transplant.
I do not think that Walt will have to donate again. They froze enough from the first collection for a second transplant. Looking back I recall how casually the medical staff used the term "second transplant" and I register how many patients in this world of leukemia/bone marrow transplants have to repeat at least one procedure.
I am trying to keep my head in the moment and not think about next week even. Having the mini-transplant bought me time for my lungs to heal and my body to get strong. I am certainly stronger now than when I was admitted in July. I feel great, ironically.
I'm grateful for my support network and hope you guys are willing to reup with me.
Having said all this, it is a happy new year. Conor and Annie are bringing that baby down for me to cuddle before all this starts again.
Cathi
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