At the moment I am in the airport waiting on my flight to Chicago. I'm looking forward to having a fine time with Harrison and Conor and Annie. I will be able to take care of HB, play with him, bathe him and even change his diaper which has been off limits til now. yuk yuk.
At the clinic yesterday I saw Julie who just about did back flips over my rising counts. My hemoglobin was 9.1 Nine would be a milestone. I probably won't recognize the number if it gets much higher. I used to be so happy when it was 9 or over before I got sick.
Julie gave me another drug that should help the tingling in my feet. When they only tingle and don't swell, they are not so painful. I hope that not swelling is because my counts are going up. Yesterday I was able to come home and do quite a bit of housework without my feet giving out on me.
I am still trying to make my house more cozy by restoring order, hanging pictures, sofa pillows and other little items. Currently I have some extra furniture in the front room that will be hauled to Lawrence to my nephew. Said nephew's house burned down the first day of finals in December. KU was extraordinarily helpful to him and his roommates and they were able to reassemble class notes and study materials to finish the semester. The Red Cross also helped the 3 boys. But he is looking for furniture and I have some to give him.
Julie scheduled a bone marrow biopsy for March 2nd. I had a long list of reasons why this was a good idea, but she said "If you're nervous about it, we can do it earlier than 90 days." So I'm happy about that. It would be tripping the light fantastic to have two good biopsies in a row, but I have no reason to think the next one will not be the same "no evidence of host cells."
I am working less than I was and seem to have found a good pace. I'm getting anxious to get out and talk to more people about what's going on in the world of IT. My upstairs office is very nice and I like the setup. I need to get real desks in there with keyboard trays so that my arms don't get used up.
Privileges. My platelets yesterday were 84. That's high enough to fly, to get my eye fixed, and to have sex. The latter was not on my list of things I really wanted to do...it takes two, right?
Now they're calling my flight and I'm off to Chi-town.
~Cathi
Wednesday, January 27, 2010
Friday, January 22, 2010
One less pill
Last night when I finished measuring out all the pills I threw one bottle in the trash. Of course tonight I set one aside to be refilled. But I like taking fewer pills. Tonight when I was opening bottles it felt like I wasn't finished.
My counts on Tuesday included a lot more normal levels on the chemistry report. Sodium and calcium have been stubbornly low but Tuesday both were in the normal range, just barely but in the range is good.
Wednesday I was all pumped up and excited so I went shopping. I checked out a store that opened while I was sick and strolled through Costco which I have not been able to do for a very long time. I skipped the grocery store because my feet hurt so much, but managed to go buy a celebratory charm for my bracelet. The result of all this shopping was a couple of days on the couch. I have a lot more energy than my feet can stand. This afternoon I have finally been able to stand up without wincing.
I'm working out how much walking and standing I can tolerate. Do I measure it in time or distance? Minutes or hours? Feet or miles? My feet don't seem to have a 2 minute warning signal, more like the penalty whistle in a hockey game. I feel fine, I get in the car to go to the next place and my feet blow the whistle. If I get in the box before the whistle blows can I take the two minutes then go back out?
I am still working a little bit, mostly as an advisor though there are some things I can do from home. I have a new business plan in the works. I had a chair massage today. I have a teeth cleaning scheduled for February. I'll be getting a pedicure before I go to Chicago next Wednesday.
~Cathi
My counts on Tuesday included a lot more normal levels on the chemistry report. Sodium and calcium have been stubbornly low but Tuesday both were in the normal range, just barely but in the range is good.
Wednesday I was all pumped up and excited so I went shopping. I checked out a store that opened while I was sick and strolled through Costco which I have not been able to do for a very long time. I skipped the grocery store because my feet hurt so much, but managed to go buy a celebratory charm for my bracelet. The result of all this shopping was a couple of days on the couch. I have a lot more energy than my feet can stand. This afternoon I have finally been able to stand up without wincing.
I'm working out how much walking and standing I can tolerate. Do I measure it in time or distance? Minutes or hours? Feet or miles? My feet don't seem to have a 2 minute warning signal, more like the penalty whistle in a hockey game. I feel fine, I get in the car to go to the next place and my feet blow the whistle. If I get in the box before the whistle blows can I take the two minutes then go back out?
I am still working a little bit, mostly as an advisor though there are some things I can do from home. I have a new business plan in the works. I had a chair massage today. I have a teeth cleaning scheduled for February. I'll be getting a pedicure before I go to Chicago next Wednesday.
~Cathi
Wednesday, January 20, 2010
Pedicure and massage and the dentist
I saw Dr. Ganguly at the clinic yesterday and it was kind of odd. He came into the room, most business like as always. I had to adjust from expecting a happy grin to on with the show. He did finally look up and pause and say "yes this is exciting."
My counts were good. White cells are in the normal range now. Hg is 8.4 and Platelets 68. One liver count (out of 4) is still elevated but no one seems too worried about that.
My appointments have been stretched out to once a week. (I'll be visiting Chicago next week.)
When I finish taking my current prescriptions of Levaquin (anti-sinus infection-biotic) and V-fend (very expensive anti-fungal) I do not have to refill them. I will keep taking Acyclovir (anti-viral) and Dapsone (pneumonia anti-biotic) until June, the one year anniversary of my last transplant. February will mark one year without pneumonia.
They will do a biopsy in March (3 months) unless something indicates one is necessary before that. If the chimerism still shows "no evidence of host cells" we will relax a little bit. The doctors are not taking Revlimid off the options, but they're not sure if or when or how much.
They believe the 2 weeks of Revlimid did the job of conquering the 5q- so that Walt's cells could take over. Isn't that amazing? Revlimid, and other drugs derived from Thalidomide, are working wonders in the world of blood cancers and bone marrow disorders. I will have another biopsy in June at the 1 year mark.
I am still taking a drug for my elevated liver enzymes which is a little bit of graft v. host. My feet tingle and even hurt sometimes, an effect of the chemo which may or may not go away. But I feel very good. Have lots of energy and am working a little bit.
The boy scout troop asked me to deliver the charge to 8 new eagle scouts at the eagle court of honor Sunday. I am honored and excited. I’m going to talk about gratitude and persistence. I think I have those things in common with Eagle Scouts. However, I must find my uniform and see if it fits. I can't remember if I kept those britches that were too tight or if I'll need a new pair. This is the result of putting my life into trash bags in the garage and then restoring it. Nothing ever is the same.
I didn’t get a lot of privileges I was hoping for but I can get my teeth cleaned and have a pedicure and a massage. I have even scheduled a chair massage for Friday morning. I cannot have house plants, pets, or fresh flowers. And I cannot paint a room or hike in the woods. Some of these things will come at the one year mark. Others as the blood count numbers indicate it's safe.
The new photo is from the first day I dressed in work clothes to visit a client. I felt really good. The red sweater vest is one of those things that was in my closet that I didn't remember buying. As you can see I found a use for it.
~Cathi
My counts were good. White cells are in the normal range now. Hg is 8.4 and Platelets 68. One liver count (out of 4) is still elevated but no one seems too worried about that.
My appointments have been stretched out to once a week. (I'll be visiting Chicago next week.)
When I finish taking my current prescriptions of Levaquin (anti-sinus infection-biotic) and V-fend (very expensive anti-fungal) I do not have to refill them. I will keep taking Acyclovir (anti-viral) and Dapsone (pneumonia anti-biotic) until June, the one year anniversary of my last transplant. February will mark one year without pneumonia.
They will do a biopsy in March (3 months) unless something indicates one is necessary before that. If the chimerism still shows "no evidence of host cells" we will relax a little bit. The doctors are not taking Revlimid off the options, but they're not sure if or when or how much.
They believe the 2 weeks of Revlimid did the job of conquering the 5q- so that Walt's cells could take over. Isn't that amazing? Revlimid, and other drugs derived from Thalidomide, are working wonders in the world of blood cancers and bone marrow disorders. I will have another biopsy in June at the 1 year mark.
I am still taking a drug for my elevated liver enzymes which is a little bit of graft v. host. My feet tingle and even hurt sometimes, an effect of the chemo which may or may not go away. But I feel very good. Have lots of energy and am working a little bit.
The boy scout troop asked me to deliver the charge to 8 new eagle scouts at the eagle court of honor Sunday. I am honored and excited. I’m going to talk about gratitude and persistence. I think I have those things in common with Eagle Scouts. However, I must find my uniform and see if it fits. I can't remember if I kept those britches that were too tight or if I'll need a new pair. This is the result of putting my life into trash bags in the garage and then restoring it. Nothing ever is the same.
I didn’t get a lot of privileges I was hoping for but I can get my teeth cleaned and have a pedicure and a massage. I have even scheduled a chair massage for Friday morning. I cannot have house plants, pets, or fresh flowers. And I cannot paint a room or hike in the woods. Some of these things will come at the one year mark. Others as the blood count numbers indicate it's safe.
The new photo is from the first day I dressed in work clothes to visit a client. I felt really good. The red sweater vest is one of those things that was in my closet that I didn't remember buying. As you can see I found a use for it.
~Cathi
Friday, January 15, 2010
Up!
I love the movie. And I love seeing the printouts at the lab.
Today everything was up. Platelets are 49. They must be 50 to fly.
I'm not booking my ticket yet because I think that next Tuesday when I see a doctor they are going to tell me I only have to come in once a week. Then I can book my stay in Chicago to last longer.
I tried my theory out on one of the nurses today that the Revlimid weakened the 5q- enough to let the donor cells roll over. She said "tell them. That's how treatment evolves. Maybe that's what they'll start doing for everyone with 5q-. Two weeks of Revlimid." Isn't THAT an interesting thought?!?!?! Revlimid is very very expensive and it comes in a 4 week prescription. So I have roughly $5,000 worth of pills sitting on my counter that I am thinking of buying a trophy base for. I am not stressed about that money (my share was 10% which is difficult enough to pony up when you're not sick.) The first $5,000 worth got the job done and that's what this process is about. Getting the job done.
I bought a new couch today to celebrate. I gave my old one to Mark when he graduated from college and I was using a loveseat as a couch. Now I have a short couch that is still longer than the love seat, with a chaise at one end. I'm laying on it as I type this message. It's lovely.
I have been working a little bit but I realized I have limits. One day this week I was standing in front of a server and my body suddenly sent a message "Ok, I'm finished for the day." Just like that. And it was finished. Finished working, driving, reading, eating, cooking....just done. I'll be pacing myself a little better from now on.
This weekend I am taking a solo roadtrip to visit Debbie who lives about an hour and a half away. Just testing my wings.
It is a wonderful freedom to be able to hug everyone. To be able to pack an overnight bag. To eat a salad whenever I want.
~Cathi
Today everything was up. Platelets are 49. They must be 50 to fly.
I'm not booking my ticket yet because I think that next Tuesday when I see a doctor they are going to tell me I only have to come in once a week. Then I can book my stay in Chicago to last longer.
I tried my theory out on one of the nurses today that the Revlimid weakened the 5q- enough to let the donor cells roll over. She said "tell them. That's how treatment evolves. Maybe that's what they'll start doing for everyone with 5q-. Two weeks of Revlimid." Isn't THAT an interesting thought?!?!?! Revlimid is very very expensive and it comes in a 4 week prescription. So I have roughly $5,000 worth of pills sitting on my counter that I am thinking of buying a trophy base for. I am not stressed about that money (my share was 10% which is difficult enough to pony up when you're not sick.) The first $5,000 worth got the job done and that's what this process is about. Getting the job done.
I bought a new couch today to celebrate. I gave my old one to Mark when he graduated from college and I was using a loveseat as a couch. Now I have a short couch that is still longer than the love seat, with a chaise at one end. I'm laying on it as I type this message. It's lovely.
I have been working a little bit but I realized I have limits. One day this week I was standing in front of a server and my body suddenly sent a message "Ok, I'm finished for the day." Just like that. And it was finished. Finished working, driving, reading, eating, cooking....just done. I'll be pacing myself a little better from now on.
This weekend I am taking a solo roadtrip to visit Debbie who lives about an hour and a half away. Just testing my wings.
It is a wonderful freedom to be able to hug everyone. To be able to pack an overnight bag. To eat a salad whenever I want.
~Cathi
Wednesday, January 13, 2010
Lucky Tuesday
In my last post I wrote "I'm thinking lucky for Tuesday" referring to the next clinic visit with a provider.
And what a LUCKY TUESDAY it turned out to be.
The biopsy report was a bit strange...never had one quite like it before. "No genetic markers." Does that mean no 5q-? YES IT DOES! "No evidence of XX chromosomes." Does that mean my marrow is all donor (XY chromosomes?) YES IT DOES!
No percentages. No list of genetic oddities. Just no host cells.
How cool is that? I have to tell you it took a little while to switch my outlook from sick to well...at least 5 minutes and a trip to the bathroom. Dad was with me and it was hours before he could talk without choking up.
My counts are still on the low side, but not low enough to need transfusions. Hopefully they will gradually rise to normal levels over the next few weeks. I warned Conor and Annie that as soon as they are high enough for me to fly, I will be visiting to spend more time with my grandson!
Dad and I went to First Watch and ate pancakes to celebrate. Then I packed a bag and hopped in the car with him for a trip to the lake house. Which is why it has taken me so long to update the blog. Mom went to Wichita Tuesday morning with sister Lori to help sister Mari unpack after she moved. Dad and I went to the lake house to make sure the furnace was working and to put the ice eater in the water. I had not been to the lake house since 2007 but it was the same. The same peace and calm was there that I enjoyed.
Alas, we were waaaaay too late to get the ice eater in. Dad chopped one small hole in the ice but that was all that was giving. The first hole was close to the dock, about 4" thick ice. The second hole attempt was in the middle of the slip and 4" wasn't even close to all the way through. The cove was frozen over from shore to shore. But all the floats were intact and I reckon they were pretty much encased in ice so hopefully they will last through this freeze. An ice eater churns up the water so that it can't freeze.
We went out to eat at the lake last night and I enjoyed fried catfish. I can't explain how good restaurant food tastes. Tonight I went over and fixed chili for me and Dad and I note their house is looking very "pre-rehab ward." No rolls of paper towels everywhere. Dad back in his chair that I had commandeered. There is still a basket of pills on the counter--obviously some I no longer take.
I will still take a pile of pills for a while, particularly those aimed at preventing pneumonia. But it will soon be a year since I've had pneumonia, which was a milestone I was looking forward to. However, I do not have to take any anti-rejection drugs. Bone marrrow transplants are different than organ transplants. They work or they don't.
I was so surprised to hear my blood is all boy. I was hoping there was enough boy blood for a booster to be possible. I like my theory that the 2 weeks of Revlimid disemboweled my cells enough to cause them to roll over and play dead so Walt's cells could get busy and take over. I'm not sure the doctors buy it but I haven't heard a better explanation from them.
Walt spent 5-6 hours in the chair in the aphereses lab while they extracted T-cells for a booster. Those babies went in the freezer, and it looks like the freezer is where they will stay. I'm grateful my brother has been willing to sit in that uncomfortable chair 3x for me.
I'm grateful to everyone for the prayers and positive thoughts all during this. Shoot, I'm tickled people remember me after a year and a half!
I'm going to continue living in my house like a healthy person. I have been able to work just a little bit. I have some new pictures [of myself] but I can't seem to lay my hands on the gear to load them up to my computer right now. My house looks like a very busy person lives here. There are piles everywhere, of clean laundry, dirty laundry, mail, newspapers, and the clean dishes have not been unloaded from the dishwasher for 3 days.
So celebrate with me. This is just a most awesome situation I'm in.
I will get through my piles and post again.
~Cathi
And what a LUCKY TUESDAY it turned out to be.
The biopsy report was a bit strange...never had one quite like it before. "No genetic markers." Does that mean no 5q-? YES IT DOES! "No evidence of XX chromosomes." Does that mean my marrow is all donor (XY chromosomes?) YES IT DOES!
No percentages. No list of genetic oddities. Just no host cells.
How cool is that? I have to tell you it took a little while to switch my outlook from sick to well...at least 5 minutes and a trip to the bathroom. Dad was with me and it was hours before he could talk without choking up.
My counts are still on the low side, but not low enough to need transfusions. Hopefully they will gradually rise to normal levels over the next few weeks. I warned Conor and Annie that as soon as they are high enough for me to fly, I will be visiting to spend more time with my grandson!
Dad and I went to First Watch and ate pancakes to celebrate. Then I packed a bag and hopped in the car with him for a trip to the lake house. Which is why it has taken me so long to update the blog. Mom went to Wichita Tuesday morning with sister Lori to help sister Mari unpack after she moved. Dad and I went to the lake house to make sure the furnace was working and to put the ice eater in the water. I had not been to the lake house since 2007 but it was the same. The same peace and calm was there that I enjoyed.
Alas, we were waaaaay too late to get the ice eater in. Dad chopped one small hole in the ice but that was all that was giving. The first hole was close to the dock, about 4" thick ice. The second hole attempt was in the middle of the slip and 4" wasn't even close to all the way through. The cove was frozen over from shore to shore. But all the floats were intact and I reckon they were pretty much encased in ice so hopefully they will last through this freeze. An ice eater churns up the water so that it can't freeze.
We went out to eat at the lake last night and I enjoyed fried catfish. I can't explain how good restaurant food tastes. Tonight I went over and fixed chili for me and Dad and I note their house is looking very "pre-rehab ward." No rolls of paper towels everywhere. Dad back in his chair that I had commandeered. There is still a basket of pills on the counter--obviously some I no longer take.
I will still take a pile of pills for a while, particularly those aimed at preventing pneumonia. But it will soon be a year since I've had pneumonia, which was a milestone I was looking forward to. However, I do not have to take any anti-rejection drugs. Bone marrrow transplants are different than organ transplants. They work or they don't.
I was so surprised to hear my blood is all boy. I was hoping there was enough boy blood for a booster to be possible. I like my theory that the 2 weeks of Revlimid disemboweled my cells enough to cause them to roll over and play dead so Walt's cells could get busy and take over. I'm not sure the doctors buy it but I haven't heard a better explanation from them.
Walt spent 5-6 hours in the chair in the aphereses lab while they extracted T-cells for a booster. Those babies went in the freezer, and it looks like the freezer is where they will stay. I'm grateful my brother has been willing to sit in that uncomfortable chair 3x for me.
I'm grateful to everyone for the prayers and positive thoughts all during this. Shoot, I'm tickled people remember me after a year and a half!
I'm going to continue living in my house like a healthy person. I have been able to work just a little bit. I have some new pictures [of myself] but I can't seem to lay my hands on the gear to load them up to my computer right now. My house looks like a very busy person lives here. There are piles everywhere, of clean laundry, dirty laundry, mail, newspapers, and the clean dishes have not been unloaded from the dishwasher for 3 days.
So celebrate with me. This is just a most awesome situation I'm in.
I will get through my piles and post again.
~Cathi
Saturday, January 9, 2010
Eating out once again
Another long gap between updates. I've celebrated my 56th birthday and New Year's Eve in fine style. I've been able to get out and about despite the snow. I've been working...for other people. And finally I am about to do some nesting while this lovely snow lays about.
Clinic days have been Tuesday and Friday. Tuesdays I see a doctor and Fridays I just have labs. This past week I received blood on Tuesday but nothing on Friday. In fact yesterday my ANC was 1000. That means I can eat out. I headed directly for Sonic. Today I will satisfy my persistent craving for Bo Lings. (ANC is absolute neutrophil and is the fighting part of white blood cells.) I'm kind of bummed that some friends are out of town or snowed in and can't be lunch dates.
I have been working for a customer and even been in their office several times, usually after hours when not many folks are around. Working has renewed my energy and even though it's tough sometimes to find solutions, it's fun. I like seeing people and I like seeing computers.
My dad and brother brought Dad's tractor over and scraped my driveway two days running to get rid of the remainder of the deep snow from Christmas. And after Wednesday night's fresh fall two young men carrying shovels knocked on my door and for $20 I had a clear driveway once again.
I saw Dr. McGuirk on Tuesday. He reported no leukemia in the biopsy but that's really all the results we have so far. I expect to hear more this coming Tuesday. He said he "feels very good about the biopsy based on conversations with the pathologist." So coupled with a high ANC yesterday I am feeling very good too. I confess I've felt a bit flat between waiting on the results and working desperately to solve a huge work problem.
Southwest Airlines has such great sales right now, I'm tempted to buy a ticket and hop up to Chicago again for a couple of days. I think that might be pushing my luck today, but I'm thinking lucky for Tuesday and then who knows? Next post could be from the deep freeze.
Cathi
Clinic days have been Tuesday and Friday. Tuesdays I see a doctor and Fridays I just have labs. This past week I received blood on Tuesday but nothing on Friday. In fact yesterday my ANC was 1000. That means I can eat out. I headed directly for Sonic. Today I will satisfy my persistent craving for Bo Lings. (ANC is absolute neutrophil and is the fighting part of white blood cells.) I'm kind of bummed that some friends are out of town or snowed in and can't be lunch dates.
I have been working for a customer and even been in their office several times, usually after hours when not many folks are around. Working has renewed my energy and even though it's tough sometimes to find solutions, it's fun. I like seeing people and I like seeing computers.
My dad and brother brought Dad's tractor over and scraped my driveway two days running to get rid of the remainder of the deep snow from Christmas. And after Wednesday night's fresh fall two young men carrying shovels knocked on my door and for $20 I had a clear driveway once again.
I saw Dr. McGuirk on Tuesday. He reported no leukemia in the biopsy but that's really all the results we have so far. I expect to hear more this coming Tuesday. He said he "feels very good about the biopsy based on conversations with the pathologist." So coupled with a high ANC yesterday I am feeling very good too. I confess I've felt a bit flat between waiting on the results and working desperately to solve a huge work problem.
Southwest Airlines has such great sales right now, I'm tempted to buy a ticket and hop up to Chicago again for a couple of days. I think that might be pushing my luck today, but I'm thinking lucky for Tuesday and then who knows? Next post could be from the deep freeze.
Cathi
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