I've just returned from a Scouting District Dinner where I cheered for Troop 91 award recipients. Brant Tidwell received the District Award of Merit and John Jurcyk received the Outstanding Committee Chair. Well deserved awards. Both of these fellows have been keen organizers of the troop to help during my illness and recovery. This was the second outing this week. Monday night I attended the troop parent-son banquet and had a marvelous time.
I cannot seem to put into words how it feels to be "out." To be able to go somewhere, eat buffet food, say hello and hug or shake hands. It is a routine event for most people. To me, it is fresh and new and exhilarating. I saw people tonight I haven't seen since before I got sick. Most of them knew I had been sick but some didn't. One fellow commented on how short my hair is these days. He had no idea I'd been sick and that was a nice change.
Maybe if I describe the things I did tonight that were forbidden for so many months. Going to a public place, shaking hands, hugging, eating food from a buffet, drinking from a cooler, using pepper on my food, enjoying cake cut by someone else. If you look at the list backwards, it is a clue to life on the inside. All food prepared on-site. Bottled water. No leftovers. Tonight was just a big treat. Monday night I ate chips from a huge community bowl; a real luxury.
Standing and chatting tonight was fun and I am grateful I had the strength to do it. My feet hurt but I wore my hiking boots and they are good support. I am probably boring my readers but it was a really fantastic evening for me. When I take one day at a time I don't think so much about what I cannot do. But when I can do it, I marvel at my good fortune.
I retired two pills this week. Dropping the empty V-fend bottle into the trash was a ceremony. Parking the Urdosiol bottle in the unused cabinet was the opening ritual. The vitamins I take now exceed the prescription drugs I take. Even vitamins are parsed out in this recovery. I ask permission to take them and get a lot of no's. So far I can take calcium/vitamin D, B-6, and a B complex. No multi-vitamin. No E or K or any of that wild stuff.
My body hurts quite a bit as I do normal daily activities. I'm still building strength and muscle tone. I have to pace myself and do the most important thing first. For example making sugar cookies has been on the list for 3 days and the ingredients are in a neat pile on my counter. But I put it off in favor of more important things like laundry and errands and work and cooking; then when I have time to make cookies my feet hurt too much and I choose to sit down instead. Tomorrow? cookies first.
My circadian clock seems to reset regularly from sleeping 9-5 to 11-7 or even 8. I hope that it settles eventually into the earlier mode but I guess with all the changes going on right now it's logical that my sleep would change too.
I will close by telling you that I am enjoying a kahlua and cream as I write. A simple pleasure to enjoy occasionally. Dr. McGuirk said "no scotch" so I am abiding by his rules.
~Cathi
Saturday, February 6, 2010
Wednesday, February 3, 2010
Baby Steps to Giant Steps
Suddenly it seems the speed of my recovery is snowballing. Yesterday at the clinic I saw Dr. McGuirk who kept saying "you look really great!"
I feel pretty damn good, not just physically, but psychologically too.
Two weeks til I visit the clinic again. I have not gone 7 days without seeing a doctor since July, 2008. This will be a real treat. Next Tuesday I do have an appointment though, to get my teeth cleaned. Oral hygiene is an odd thing during treatment for blood cancer. They don't want you to floss when platelets are less than 50, so for much of the last 18 months, no flossing. (This is because of the risk of bleeding.) No brushing at certain times, I can't remember why. I had a sponge on a stick that I dipped in a fluid that tasted a little like fluoride, not abrasive at all, that sort of freshened my mouth. So getting a full fledged teeth cleaning is going to be a real treat.
I went with Annie, my daughter-in-law, for a manicure-pedicure in Chicago which was just divine. I must find a place in Kansas City with that kind of treatment. Dr. McGuirk looked at my nails yesterday like he always does and exclaimed "they're polished!" I did not feel one bit bad. The scruffy part of my nails is nearly grown out. As a result of the chemo they turned a bit yellow and then became increasingly flaky as they grew out. The good news? The ridges I had before are gone too! A fresh start.
Another fresh start that hadn't occurred to me was immunizations. When I lost my bone marrow I lost my childhood immunity. So yesterday I received five vaccinations. For polio, diphtheria-pertussis-tetanus, pneumonia, hepatitis and a flu vaccine given to babies. As a regular camper and outdoors person I always had a tetanus shot annually. I'm happy to be well enough to be immunized! This does not mean I must avoid immune suppressed patients. Only persons who receive the nasal flu vaccine must avoid immune suppressed patients.
After tomorrow I will be taking two less pills per day. The anti-fungal and the corresponding liver saver on the theory that the anti-fungal causes the liver enzymes to rise. It has been one year since I had pneumonia. The anti-fungal drug is aimed at fungal pneumonia, which was the medical team's best guess at the cause of my pneumonia though they were never able to identify a fungus from the many cultures. I spent the entire month of February 2009 in the hospital very sick with pneumonia. I think that is the single event that extended my recovery period and there are still some effects from it. There is scar tissue that causes some pleuritic sort of pain when I expand my lungs for a deep breath. Dr. McGuirk's solution for that is exercise, exercise, exercise. Deep breaths. Break up the scar tissue. So cold be damned, I shall put on my boots and start walking. "Are ya ready boots?"
I should mention that my lungs look much much better than anyone ever expected. One time last year after a particularly positive CT Scan Dr. Aljitawi said "you are the miracle girl!" A happy title.
My counts yesterday were still rising. Platelets 105 (normal is 150), Hg 9.0 (normal 11-14) and WBC 5.1 (that's normal!) The booster and the Revlimid are still ammo in reserve.
I asked about overseas travel and Dr. McGuirk said "oh get real" and I said "maybe Italy in October?" He replied "October? Oh sure that will be fine. Where in Italy?" "Florence." "My sister used to live there. She worked in the Uffizi Gallery." Very fine. A vacation to plan.
My trip to Chicago was excellent. Conor and Annie are terrific hosts. I slept good--without drugs. And I feel like I know little Harrison a little bit better. Getting to know him and make up for lost time. I was disappointed that I am no stronger in Chicago than I am in Kansas City but I figured out how to carry him up and down stairs safely. Certainly I was way stronger than just a month ago at Christmas. I could pick him up and swing him, so next time I go I will be ready to schlep him anywhere. I am signing on to be the chief cook and bottle washer after the next baby comes in May.
Finally, many people have asked me if I will continue keeping the blog. Yes I will. I think my recovery is just getting rolling and there are still many changes to come. I want to write about some events that haven't made it to the blog during this time of itinerant posts. I am looking forward to having more privileges, one by one. And I will be writing about the experiences in this blog so stay tuned.
~Cathi
I feel pretty damn good, not just physically, but psychologically too.
Two weeks til I visit the clinic again. I have not gone 7 days without seeing a doctor since July, 2008. This will be a real treat. Next Tuesday I do have an appointment though, to get my teeth cleaned. Oral hygiene is an odd thing during treatment for blood cancer. They don't want you to floss when platelets are less than 50, so for much of the last 18 months, no flossing. (This is because of the risk of bleeding.) No brushing at certain times, I can't remember why. I had a sponge on a stick that I dipped in a fluid that tasted a little like fluoride, not abrasive at all, that sort of freshened my mouth. So getting a full fledged teeth cleaning is going to be a real treat.
I went with Annie, my daughter-in-law, for a manicure-pedicure in Chicago which was just divine. I must find a place in Kansas City with that kind of treatment. Dr. McGuirk looked at my nails yesterday like he always does and exclaimed "they're polished!" I did not feel one bit bad. The scruffy part of my nails is nearly grown out. As a result of the chemo they turned a bit yellow and then became increasingly flaky as they grew out. The good news? The ridges I had before are gone too! A fresh start.
Another fresh start that hadn't occurred to me was immunizations. When I lost my bone marrow I lost my childhood immunity. So yesterday I received five vaccinations. For polio, diphtheria-pertussis-tetanus, pneumonia, hepatitis and a flu vaccine given to babies. As a regular camper and outdoors person I always had a tetanus shot annually. I'm happy to be well enough to be immunized! This does not mean I must avoid immune suppressed patients. Only persons who receive the nasal flu vaccine must avoid immune suppressed patients.
After tomorrow I will be taking two less pills per day. The anti-fungal and the corresponding liver saver on the theory that the anti-fungal causes the liver enzymes to rise. It has been one year since I had pneumonia. The anti-fungal drug is aimed at fungal pneumonia, which was the medical team's best guess at the cause of my pneumonia though they were never able to identify a fungus from the many cultures. I spent the entire month of February 2009 in the hospital very sick with pneumonia. I think that is the single event that extended my recovery period and there are still some effects from it. There is scar tissue that causes some pleuritic sort of pain when I expand my lungs for a deep breath. Dr. McGuirk's solution for that is exercise, exercise, exercise. Deep breaths. Break up the scar tissue. So cold be damned, I shall put on my boots and start walking. "Are ya ready boots?"
I should mention that my lungs look much much better than anyone ever expected. One time last year after a particularly positive CT Scan Dr. Aljitawi said "you are the miracle girl!" A happy title.
My counts yesterday were still rising. Platelets 105 (normal is 150), Hg 9.0 (normal 11-14) and WBC 5.1 (that's normal!) The booster and the Revlimid are still ammo in reserve.
I asked about overseas travel and Dr. McGuirk said "oh get real" and I said "maybe Italy in October?" He replied "October? Oh sure that will be fine. Where in Italy?" "Florence." "My sister used to live there. She worked in the Uffizi Gallery." Very fine. A vacation to plan.
My trip to Chicago was excellent. Conor and Annie are terrific hosts. I slept good--without drugs. And I feel like I know little Harrison a little bit better. Getting to know him and make up for lost time. I was disappointed that I am no stronger in Chicago than I am in Kansas City but I figured out how to carry him up and down stairs safely. Certainly I was way stronger than just a month ago at Christmas. I could pick him up and swing him, so next time I go I will be ready to schlep him anywhere. I am signing on to be the chief cook and bottle washer after the next baby comes in May.
Finally, many people have asked me if I will continue keeping the blog. Yes I will. I think my recovery is just getting rolling and there are still many changes to come. I want to write about some events that haven't made it to the blog during this time of itinerant posts. I am looking forward to having more privileges, one by one. And I will be writing about the experiences in this blog so stay tuned.
~Cathi
Wednesday, January 27, 2010
An unexpected privilege
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
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
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
Tuesday, December 29, 2009
Home and healthy
I went to Chicago. My whole family was there thanks to Conor and Mark getting Mark out of OKC before they closed the airport Thursday morning. I played with Harrison. And I came home healthy. Very remarkable considering I have almost no white blood cells.
Mark got up there Wednesday evening and the kids scoured the house again getting ready for me. I so appreciate all the work and special food so I could be comfortable and safe.
I wish I could have stayed longer because I was just getting the hang of Harrison's routine when I had to leave. I spent most of the day Saturday at Loyola hospital getting refueled. They transfuse at a much slower rate than KU. I persuaded the nurses to speed it up a little but not enough to get much HB time. Conor and I got home in time to bathe him, which is very fun.
We made keepsake plates with penguins made from everyone's thumbprint. Conor and Mark didn't laugh at me for once and were very good natured about painting their thumbs. Harrison wasn't so sure. But we got a print from him.
The clinic visit Monday was uneventful. I saw Dr. Aljitawi but don't have any news or even speculation. We have to see what's going on in the bone marrow and the biopsy is scheduled for Thursday. After that I expect news to trickle in, starting with no news is good news.
Meanwhile, I'm still at home. My birthday is tomorrow and I'm hoping friends drop by. If you're in town, stop by. I feel good and energetic. I loaded Christmas pictures up to Facebook, and I will put them out on Snapfish or something so more folks can see them. But here's the prize.
~Cathi
Mark got up there Wednesday evening and the kids scoured the house again getting ready for me. I so appreciate all the work and special food so I could be comfortable and safe.
I wish I could have stayed longer because I was just getting the hang of Harrison's routine when I had to leave. I spent most of the day Saturday at Loyola hospital getting refueled. They transfuse at a much slower rate than KU. I persuaded the nurses to speed it up a little but not enough to get much HB time. Conor and I got home in time to bathe him, which is very fun.
We made keepsake plates with penguins made from everyone's thumbprint. Conor and Mark didn't laugh at me for once and were very good natured about painting their thumbs. Harrison wasn't so sure. But we got a print from him.
The clinic visit Monday was uneventful. I saw Dr. Aljitawi but don't have any news or even speculation. We have to see what's going on in the bone marrow and the biopsy is scheduled for Thursday. After that I expect news to trickle in, starting with no news is good news.
Meanwhile, I'm still at home. My birthday is tomorrow and I'm hoping friends drop by. If you're in town, stop by. I feel good and energetic. I loaded Christmas pictures up to Facebook, and I will put them out on Snapfish or something so more folks can see them. But here's the prize.
~Cathi
Tuesday, December 22, 2009
Dang the flu anyway!
Well I missed my planned flight to Chicago today. But not because of anything here, because the poor kids in Chi-town have the flu. We're hoping it's shortlived and I can go up on Thursday. Meanwhile Walt took me to the clinic bright and early this morning where I got platelets. And the counts from the lab were not so hot. Even after a neupogen shot yesterday my white cells were at 1.7. Not much resistance in that.
So I have done the things today in preparation for Christmas that I had decided didn't have to be done. There's always one more thing to do to get ready I think. I always have one more thought for a stocking stuffer, or one more recipe I haven't made this year. I plan to bake again tomorrow, but today I picked up a couple of those stocking stuffer ideas. I wear a mask in the store, use lots of sanitizer, and try to resist picking up too many things in the process of making my decision.
Last night my old Venturing Crew paid a visit. Venturing is a boy scout program for boys and girls age 14-21. Our crew had a trip planned to Packard High Adventure Base near Salida, CO when I got sick. Fortunately they were able to find women to accompany them so the trip went off nearly as planned. Three of the four kids who took the trip visited me, returned my borrowed gear, and delivered a wonderful photo book. Jerrod created the book and his sense of humor and writing skills are excellent. They had a poster with them on the trip "We miss you Cathi and wish you were here." The book includes a couple of shots with the poster. There is a pic at the top of Mt. Shavano, a 14er, and I'm reasonably certain they would have missed me for that leg of the trip even if I wasn't in the hospital!
To cap it off, they wrote a song about the adventure for the last night campfire that they sang for me last night. It's pretty special to have 3 teens in your living room singing. It was a wonderful holiday visit.
Clearly my counts are not recovering after being off the Revlimid. Perhaps the Revlimid just hastened what was already happening. I am just focusing on the here and now. I still feel energetic and upbeat. I have a bone marrow biopsy scheduled for Monday the 28th to see what is really going on. Hopefully a booster will still be possible. Hopefully the 5qs will not have taken over. The sinus infection seems to be completely cleared up. I have a new humidifier on my furnace that is keeping the house less dry. Plenty of Ocean spray. (That would be from the pharmacy aisle, not the fruit juice aisle.)
I have more time to finish the laundry and pack and get ready. I would like to be playing with Harrison, but soon.....
~Cathi
So I have done the things today in preparation for Christmas that I had decided didn't have to be done. There's always one more thing to do to get ready I think. I always have one more thought for a stocking stuffer, or one more recipe I haven't made this year. I plan to bake again tomorrow, but today I picked up a couple of those stocking stuffer ideas. I wear a mask in the store, use lots of sanitizer, and try to resist picking up too many things in the process of making my decision.
Last night my old Venturing Crew paid a visit. Venturing is a boy scout program for boys and girls age 14-21. Our crew had a trip planned to Packard High Adventure Base near Salida, CO when I got sick. Fortunately they were able to find women to accompany them so the trip went off nearly as planned. Three of the four kids who took the trip visited me, returned my borrowed gear, and delivered a wonderful photo book. Jerrod created the book and his sense of humor and writing skills are excellent. They had a poster with them on the trip "We miss you Cathi and wish you were here." The book includes a couple of shots with the poster. There is a pic at the top of Mt. Shavano, a 14er, and I'm reasonably certain they would have missed me for that leg of the trip even if I wasn't in the hospital!
To cap it off, they wrote a song about the adventure for the last night campfire that they sang for me last night. It's pretty special to have 3 teens in your living room singing. It was a wonderful holiday visit.
Clearly my counts are not recovering after being off the Revlimid. Perhaps the Revlimid just hastened what was already happening. I am just focusing on the here and now. I still feel energetic and upbeat. I have a bone marrow biopsy scheduled for Monday the 28th to see what is really going on. Hopefully a booster will still be possible. Hopefully the 5qs will not have taken over. The sinus infection seems to be completely cleared up. I have a new humidifier on my furnace that is keeping the house less dry. Plenty of Ocean spray. (That would be from the pharmacy aisle, not the fruit juice aisle.)
I have more time to finish the laundry and pack and get ready. I would like to be playing with Harrison, but soon.....
~Cathi
Saturday, December 19, 2009
Chicago, Chicago. Oh that toddlin' town....
It's been a week of ups and downs. The graft v. host is driving me nuts. Itching, nothing tastes good, mouth tender. The blood work showed rising liver counts so I'm on an additional drug to deal with that.
The sinus infection is not going away nicely. I'm getting daily IV antibiotics at the clinic. I assume they haven't switched me to oral antibiotics because my counts are bobbling all over the place. I've had several transfusions this week. Platelets were 22 one day, 38 the next and 8 the day after that. This is down from well over 100 for weeks.
The only real news I've had is that they are going to make sure I get to Chicago for Christmas. The NP said "we will just transfuse you and throw you on the plane." KU will set something up with a BMT program in Chicago for a pre-flight refuel on the return trip. So I'm wrapping and packing. A person has to have platelets of 50 to fly.
We will do a bone marrow biopsy after Christmas to see what's going on. I expect the counts to be back up by then. Revlimid has a long half life and its effect on my counts can last quite a while after I stop taking it. The team is very worried about losing the graft again, but always in the past when I had GVH the donor cells were working. I just cannot reconcile all the symptoms I have with losing the graft. So I remain optimistic. Most of the time.
I've been a little teary worrying about not being able to go to Chicago, and about the transplant failing again. So the key is to stay rested and stay busy. There is lots to do here at Christmas time.
I made Rocky Road candy today and I felt pretty smug about not having to hide it from Mark. I used to make it, then try to fan the chocolate smell out of the house, then hide it somewhere because if he knew I made it, he would be busy looking for it. And half the pan would be gone in the morning! However, I underestimated how much Walt and Caroline could eat in mere minutes when I offered it to them during a shopping break! I will be making more tomorrow.
I stayed at Mom's for a couple of days and Walt stayed here with me for a couple of days. I ran a fever every day with the sinus infection and that just took the vinegar out of me so I needed a companion. Walt has fixed a lot of little things in the house and is here again working on a humidifier. Hopefully that will help prevent more sinus problems.
I still have lots of energy, except when the temp goes up, so I'm enjoying baking and cooking. Wrapping and nesting. What we do when it's cold outside.
~Cathi
The sinus infection is not going away nicely. I'm getting daily IV antibiotics at the clinic. I assume they haven't switched me to oral antibiotics because my counts are bobbling all over the place. I've had several transfusions this week. Platelets were 22 one day, 38 the next and 8 the day after that. This is down from well over 100 for weeks.
The only real news I've had is that they are going to make sure I get to Chicago for Christmas. The NP said "we will just transfuse you and throw you on the plane." KU will set something up with a BMT program in Chicago for a pre-flight refuel on the return trip. So I'm wrapping and packing. A person has to have platelets of 50 to fly.
We will do a bone marrow biopsy after Christmas to see what's going on. I expect the counts to be back up by then. Revlimid has a long half life and its effect on my counts can last quite a while after I stop taking it. The team is very worried about losing the graft again, but always in the past when I had GVH the donor cells were working. I just cannot reconcile all the symptoms I have with losing the graft. So I remain optimistic. Most of the time.
I've been a little teary worrying about not being able to go to Chicago, and about the transplant failing again. So the key is to stay rested and stay busy. There is lots to do here at Christmas time.
I made Rocky Road candy today and I felt pretty smug about not having to hide it from Mark. I used to make it, then try to fan the chocolate smell out of the house, then hide it somewhere because if he knew I made it, he would be busy looking for it. And half the pan would be gone in the morning! However, I underestimated how much Walt and Caroline could eat in mere minutes when I offered it to them during a shopping break! I will be making more tomorrow.
I stayed at Mom's for a couple of days and Walt stayed here with me for a couple of days. I ran a fever every day with the sinus infection and that just took the vinegar out of me so I needed a companion. Walt has fixed a lot of little things in the house and is here again working on a humidifier. Hopefully that will help prevent more sinus problems.
I still have lots of energy, except when the temp goes up, so I'm enjoying baking and cooking. Wrapping and nesting. What we do when it's cold outside.
~Cathi
Tuesday, December 15, 2009
Revlimid and why I did not get a booster
The goal of a bone marrow transplant is for the donor cells to graft to the host environment and the host cells then disappear for lack of use. (Think of grafting a beautiful rose with a weak root onto a stronger root stock.) Gauging the progress of the transplant is some art, some science based on watching the body's reaction.
While the donor cells are working on the graft, Doctors are looking for symptoms of graft vs. host disease (gvhd.) These symptoms commonly include rash, nausea, diarrhea, facial flushing, loss of appetite. As long as one or more of these symptoms is present they know the donor cells are busy.
Another indicator is the blood counts, specifically hemoglobin, white cells and platelets. If those counts are rising while gvhd symptoms exist, then we can be pretty sure the donor cells are active.
Results of bone marrow biopsies over time show exactly what is happening in the marrow, but this is invasive and is generally called for when there are no other signs to rely on.
The results of my last bone marrow biopsy showed 66% donor/34% host. And 95% of the host cells had 5q-. So I started taking Revlimid to kill the 5q- and preparing for a booster. Two separate courses of action. By the time of that biopsy, most of the gvhd symptoms had disappeared, indicating the donor cells were slowing down. But the blood counts were still high and rising which was a good sign. So the booster was to "rearm" the donor cells so they would go back to work. The Revlimid is to kill the 5q- cells so I don't get Leukemia again.
After taking the Revlimid for a week, the gvhd symptoms reappeared in the form of a rash. The rash first showed up on the day the booster was scheduled. There was a lot of debate about whether it was actually gvhd, but the doctors felt they had time to see if it developed further before they proceeded with the booster. Having gvhd symptoms again indicates the donor cells are back at work.
And it has developed into full blown, uncomfortable gvhd. Now we still have the booster option in our arsenal of backup ammunition.
Revlimid has an impressive track record at curing 5q-. It has some side effects that include blood counts dropping. Stopping the Revlimid for a few days usually sees the blood counts return to normal. My counts are rising daily so I will probably start taking the Revlimid again by the end of this week. The only sure way to check the results of Revlimid is with a biopsy and as long as things on the outside are looking good, we won't do a biopsy for a few weeks.
My theory is that 5q- is what powered my cells and made it impossible for Walt's cells to graft. Killing the 5q- weakens my cells and his cells can get busy. My hope is that we can maintain this balance of weakening my cells and strengthening his til a full and effective graft can occur.
~Cathi
While the donor cells are working on the graft, Doctors are looking for symptoms of graft vs. host disease (gvhd.) These symptoms commonly include rash, nausea, diarrhea, facial flushing, loss of appetite. As long as one or more of these symptoms is present they know the donor cells are busy.
Another indicator is the blood counts, specifically hemoglobin, white cells and platelets. If those counts are rising while gvhd symptoms exist, then we can be pretty sure the donor cells are active.
Results of bone marrow biopsies over time show exactly what is happening in the marrow, but this is invasive and is generally called for when there are no other signs to rely on.
The results of my last bone marrow biopsy showed 66% donor/34% host. And 95% of the host cells had 5q-. So I started taking Revlimid to kill the 5q- and preparing for a booster. Two separate courses of action. By the time of that biopsy, most of the gvhd symptoms had disappeared, indicating the donor cells were slowing down. But the blood counts were still high and rising which was a good sign. So the booster was to "rearm" the donor cells so they would go back to work. The Revlimid is to kill the 5q- cells so I don't get Leukemia again.
After taking the Revlimid for a week, the gvhd symptoms reappeared in the form of a rash. The rash first showed up on the day the booster was scheduled. There was a lot of debate about whether it was actually gvhd, but the doctors felt they had time to see if it developed further before they proceeded with the booster. Having gvhd symptoms again indicates the donor cells are back at work.
And it has developed into full blown, uncomfortable gvhd. Now we still have the booster option in our arsenal of backup ammunition.
Revlimid has an impressive track record at curing 5q-. It has some side effects that include blood counts dropping. Stopping the Revlimid for a few days usually sees the blood counts return to normal. My counts are rising daily so I will probably start taking the Revlimid again by the end of this week. The only sure way to check the results of Revlimid is with a biopsy and as long as things on the outside are looking good, we won't do a biopsy for a few weeks.
My theory is that 5q- is what powered my cells and made it impossible for Walt's cells to graft. Killing the 5q- weakens my cells and his cells can get busy. My hope is that we can maintain this balance of weakening my cells and strengthening his til a full and effective graft can occur.
~Cathi
Monday, December 14, 2009
Neutropenic again
Neutropenia means my white cell count is too low to fend off any germs and I must follow careful guidelines to avoid them. The no raw food diet, the don't go anywhere precaution, the guests check germs at the door.
The low counts are likely the result of the new drug, Revlimid. The prescription advisory says that 80% of patients have to stop it during the 1st 4 weeks because of low blood counts. Which makes me part of the normal majority, whatever normal is. I think that it won't last long because the counts this morning were much higher than last night.
Last night I went to the hospital because I had a fever, most likely from another sinus infection. Of course they drew blood and my hemoglobin was 5.5 so they would not let me leave the hospital without receiving a unit of blood. The good news is the hemoglobin this morning was 8.4 which is a much bigger jump than the 1 point or so expected from a unit of blood. So the factory is still working, it just can't keep up with the consumer demands here at Christmas time. I also got a neupogen shot this morning to boost the white count.
So my plan is to finish my shopping on line and do some baking here at home. I needed a reason to stay home and hit the paperwork. As if the forecast of 18 degrees high today isn't enough to keep a person home!
~Cathi
The low counts are likely the result of the new drug, Revlimid. The prescription advisory says that 80% of patients have to stop it during the 1st 4 weeks because of low blood counts. Which makes me part of the normal majority, whatever normal is. I think that it won't last long because the counts this morning were much higher than last night.
Last night I went to the hospital because I had a fever, most likely from another sinus infection. Of course they drew blood and my hemoglobin was 5.5 so they would not let me leave the hospital without receiving a unit of blood. The good news is the hemoglobin this morning was 8.4 which is a much bigger jump than the 1 point or so expected from a unit of blood. So the factory is still working, it just can't keep up with the consumer demands here at Christmas time. I also got a neupogen shot this morning to boost the white count.
So my plan is to finish my shopping on line and do some baking here at home. I needed a reason to stay home and hit the paperwork. As if the forecast of 18 degrees high today isn't enough to keep a person home!
~Cathi
Wednesday, December 9, 2009
Lucky tractor socks
Tuesday, December 8th, yesterday, was Booster Day. I had a clinic appointment at 10:00 and then off to the hospital. I showered and dressed carefully in all my lucky items: tractor (John Deere) socks, "Life is Good" hat, and my Cabbage Key t-shirt. Walt and Dad went to the apherisis unit very early and Walt was hooked up to donate the booster cells.
Robbie and Charlene and I loaded up and rolled in to the clinic. I persuaded the nurse at the clinic to put in an IV so I only had to be stuck once, then I visited with Dr. Abhankar. I reported a rash on my chest and blotches on various other parts of me. Dr. A looked the spots over and asked me a lot of questions about the bright red flush in my cheeks that seem to just happen to me occasionally. Finally he sent me to the hospital to the dermatology suite to have them look at the spots.
The resident I claim as my dermatologist looked at the rash spots. Then she called in her supervisor who looked them over. Everyone seemed to agree they looked a lot like Graft vs. Host Disease, but nobody was certain a biopsy would be conclusive. So the dermatologist called Dr. Abhyankar and reported. Then Dr. Abhyankar called back and told me that they (Drs. A and M) hoped the rash is GVH and so they decided to not give me the booster. "But go ahead to unit 42." The purpose of the booster was to boost Walt's cells into waging war again with mine and inciting GVH so the graft will get stronger and more permanent.
So we three trooped up to the 4th floor and finally found our way to my room on unit 41. Robbie and Charlene went off to find some lunch and the doctors continued thinking out loud. Finally my nurse came in and said "you are the easiest patient I've ever had." She removed the IV line and gave me a printout of my labs and shooed us out of the hospital.
Seemed like a very big day on which virtually nothing happened. And another surprise was an email in the afternoon scheduling my next clinic appointment for a week later! A longer leash is always enjoyed. Walt's cells have been stored in the freezer for possible future needs.
Today the rash is plenty itchy. It's still inconsistent, moving from my neck to my back to my abdomen and it doesn't look very red. I expect it will be more itchy tomorrow.
Robbie left for Vermont today but Charlene is still here. She cooked a fabulous gumbo for supper tonight and there is plenty left over for another meal. We had bar-b-q last night. Visited the Boulevard brewery Monday, had a fine dinner Monday night with other friends. I have enjoyed myself and maintained my energy through it all. Feeling energetic is WONDERFUL.
I am washing the lucky tractor socks so I can wear them again tomorrow. And every day after that they are clean in my drawer. They don't itch, but they seem to cause it.....
~Cathi
Robbie and Charlene and I loaded up and rolled in to the clinic. I persuaded the nurse at the clinic to put in an IV so I only had to be stuck once, then I visited with Dr. Abhankar. I reported a rash on my chest and blotches on various other parts of me. Dr. A looked the spots over and asked me a lot of questions about the bright red flush in my cheeks that seem to just happen to me occasionally. Finally he sent me to the hospital to the dermatology suite to have them look at the spots.
The resident I claim as my dermatologist looked at the rash spots. Then she called in her supervisor who looked them over. Everyone seemed to agree they looked a lot like Graft vs. Host Disease, but nobody was certain a biopsy would be conclusive. So the dermatologist called Dr. Abhyankar and reported. Then Dr. Abhyankar called back and told me that they (Drs. A and M) hoped the rash is GVH and so they decided to not give me the booster. "But go ahead to unit 42." The purpose of the booster was to boost Walt's cells into waging war again with mine and inciting GVH so the graft will get stronger and more permanent.
So we three trooped up to the 4th floor and finally found our way to my room on unit 41. Robbie and Charlene went off to find some lunch and the doctors continued thinking out loud. Finally my nurse came in and said "you are the easiest patient I've ever had." She removed the IV line and gave me a printout of my labs and shooed us out of the hospital.
Seemed like a very big day on which virtually nothing happened. And another surprise was an email in the afternoon scheduling my next clinic appointment for a week later! A longer leash is always enjoyed. Walt's cells have been stored in the freezer for possible future needs.
Today the rash is plenty itchy. It's still inconsistent, moving from my neck to my back to my abdomen and it doesn't look very red. I expect it will be more itchy tomorrow.
Robbie left for Vermont today but Charlene is still here. She cooked a fabulous gumbo for supper tonight and there is plenty left over for another meal. We had bar-b-q last night. Visited the Boulevard brewery Monday, had a fine dinner Monday night with other friends. I have enjoyed myself and maintained my energy through it all. Feeling energetic is WONDERFUL.
I am washing the lucky tractor socks so I can wear them again tomorrow. And every day after that they are clean in my drawer. They don't itch, but they seem to cause it.....
~Cathi
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