Coming to you from the clinic and feeling good. I had a CT Scan of my lungs yesterday that shows huge improvement. The pneumonia is "significantly decreased," and for the first time, the fluid under my lung is much reduced. This corresponds to how I am feeling. If I refer to the axiom used by the pulmonoligist that you "feel about 3 weeks ahead of how your lungs look" this augurs well for the next scan.
Mom and Dad are headed to California for my youngest nephew's 1st Communion. Dr. McGuirk called [Nurse Practitioner] Julie to find out the results of my scan yesterday. Because he was standing with them at the airport. We've all had a good laugh about that in here at the clinic. Mom called me and she already knew everything.
I am still getting the Ambizone every day. I also get platelets and blood several times a week. Next week I will get the Vidaza shots again for 7 days. I am hoping that since I feel so good, that will delay the side effects of the Vidaza a little longer.
Dad cleaned the basement and unloaded the treadmill and I have been walking on it. The basement is neater than it's been in a long while. I have been walking twice a day for 6 minutes each. This feels good, burns about 21 calories (according to the treadmill) each time, and is hopefully making me much stronger.
I miss my dogs as I feel better and better. But I know they are in good hands. Mark has actually moved to Oklahoma City with Daisy so they're both in the same county now. I also wish I could get out in the yard and get my hands dirty. I'll have to settle for plotting and planning.
Cathi
Thursday, April 23, 2009
Tuesday, April 21, 2009
Another post from limbo
Yesterday Dr. McGuirk visited me in the clinic. He chided me for losing weight but said again " I'm very optimistic we can get you into full recovery." My lungs sound clear and he was impressed that I can walk upstairs without leaning on the bannister. I can even walk upstairs with my hands full and not touch the railing at all!
He suggested getting on the treadmill more than the Wii Fit. Dad is home unloading his junk from the treadmill so that I can use it. McGuirk suggested 2 minutes a day for a week, adding a minute each week. I think I will be able to do a little more than that, but obviously start slow and build up. The treadmill is in the walkout basement which Dad fondly refers to as his "office." He spends time down there making wood projects, reading, playing solitaire and who knows what else. He does all the cutting and sanding and applying finish to the wood projects outdoors and the treadmill is stationed right inside that door. Thus it has become a roosting place for stuff, despite the several tables and workbenches also in the room.
Walt and family arrived yesterday, spent all their money at the house closing, and the truck is unloading today. He came by the house last night and I had a brief visit with his kids who I haven't seen in over a year. Caroline is practically grown. Part of the BMT protocol calls for no kids; it cuts me off from my young nieces and nephews as well as my grandbaby. But the kids had been in the car for 4 days with no sniffles and no contact with other children so we had a safe visit. No touching! Anthony even came up with an air hug for me.
I am gaining weight slowly. It is sometimes hard to eat enough but I am focusing on protein and that seems to make the difference. Load my lunch box up with protein bars. Debbie is coming to stay this weekend and she promises lots of high calorie cooking and baking good sweets!
He suggested getting on the treadmill more than the Wii Fit. Dad is home unloading his junk from the treadmill so that I can use it. McGuirk suggested 2 minutes a day for a week, adding a minute each week. I think I will be able to do a little more than that, but obviously start slow and build up. The treadmill is in the walkout basement which Dad fondly refers to as his "office." He spends time down there making wood projects, reading, playing solitaire and who knows what else. He does all the cutting and sanding and applying finish to the wood projects outdoors and the treadmill is stationed right inside that door. Thus it has become a roosting place for stuff, despite the several tables and workbenches also in the room.
Walt and family arrived yesterday, spent all their money at the house closing, and the truck is unloading today. He came by the house last night and I had a brief visit with his kids who I haven't seen in over a year. Caroline is practically grown. Part of the BMT protocol calls for no kids; it cuts me off from my young nieces and nephews as well as my grandbaby. But the kids had been in the car for 4 days with no sniffles and no contact with other children so we had a safe visit. No touching! Anthony even came up with an air hug for me.
I am gaining weight slowly. It is sometimes hard to eat enough but I am focusing on protein and that seems to make the difference. Load my lunch box up with protein bars. Debbie is coming to stay this weekend and she promises lots of high calorie cooking and baking good sweets!
Friday, April 17, 2009
Another rousing day at the clinic
The scheduling department got a little carried away with the later appointments this week. Scheduled me for 2:30, 3:00 and even 3:30. The 2:30 appointment finally ended at 9:30pm at the hospital. The clinic closes at 7 and there wasn't time to pour Ambizone, platelets and blood into me between 2:30 and 7. So I got the Ambizone and platelets, then went to the hospital to get the blood.
So the next day I got the appointments rescheduled and had to take what was left. Friday morning, today was 7:30. (sleepy sigh) However it looks like I will be finished by noon so that's a lot of day left.
I've been trying to decide how to deal with the gardens in my yard. Yesterday I decided that hiring a pro might be the right way to go. I can't go out there and get my hands dirty. There seems to be a lot of stuff that didn't make it through last season, and I would like to make some changes in the looks of them. So I'll get some advice and some work done. I hope.
Conor was to visit this weekend but he has a cold so won't be coming. Janice is coming to stay though so a change of pace. Walt is on his way back to Kansas and so is his furniture. They arrive the first of next week.
So the next day I got the appointments rescheduled and had to take what was left. Friday morning, today was 7:30. (sleepy sigh) However it looks like I will be finished by noon so that's a lot of day left.
I've been trying to decide how to deal with the gardens in my yard. Yesterday I decided that hiring a pro might be the right way to go. I can't go out there and get my hands dirty. There seems to be a lot of stuff that didn't make it through last season, and I would like to make some changes in the looks of them. So I'll get some advice and some work done. I hope.
Conor was to visit this weekend but he has a cold so won't be coming. Janice is coming to stay though so a change of pace. Walt is on his way back to Kansas and so is his furniture. They arrive the first of next week.
Conor and Annie send me daily pics of Harrison who is now 4 1/2 months old. He rolled over this week and I got a video of that! Here is my current favorite picture.
My lungs feel better, sound better. It looks like I will still be waiting for a few more weeks before we start planning the transplant. Meanwhile, I hang out. I'm getting better at waiting. Better at being taken care of--it's hard for us independent types to be cared for.
Cathi
My lungs feel better, sound better. It looks like I will still be waiting for a few more weeks before we start planning the transplant. Meanwhile, I hang out. I'm getting better at waiting. Better at being taken care of--it's hard for us independent types to be cared for.
Cathi
Monday, April 13, 2009
My DeVore cousins
Monday morning. When I don't feel great, it's like any monday morning when I was working. Ugh and blah.
But I logged in today to talk about my DeVore cousins who have contributed much blood and sweat to getting my house rid of all dangers. Dennis, Sara's husband, helped demolish the bathroom, as did Walt's buddy Jeff. Sara and my niece, Margaret, ripped up the carpet from the basement. And hauled it out to the street to be picked up. Then Sara came back and helped Margaret with the cleaning in the basement. Last week Jason, Carol's son, helped Walt rip out the remainder of the paneling and wood from the basement walls and sweep away the dry mold. These are the jobs nobody wants to do and the DeVores pitched in and did them. THANK YOU! (I hope Dennis's back is okay now.)
They all send encouraging emails and many comments on the blog. They have visited and they just remind me who I am. Even though I am isolated, they act pretty normal about it. I get links to bluegrass downloads from the Winfield festival that we attend every year. And I just really appreciate that I'm still included.
Meanwhile life goes on. Daily clinic visits which are in the afternoons now. I actually drove myself to the clinic on Saturday but then had to have Benedryl to get a platelets transfusion so called for a driver to get me home. Mom and Dad are really good about it. I get dropped off at the clinic about half the time now, and I like that. Gives me a little time to catch up, and nap if I want.
Peggy took me to the clinic yesterday and we talked a little bit about what I should be doing with this waiting time. Sometimes I think I should be creating something momentous and meaningful that will outlive me. Other times (and this is what I prefer) I think I just need to keep my business going and my real life intact so I can step back in when I'm well. Peggy reminded me that the same questions apply to everyone. None of us really know how much time we have; and we have to choose every day the best thing we should be doing.
So outside of wishing for more energy, which I didn't even have before I got AML, I'm fine. My white cell count bobbles around but isn't so low that I'm scared. I like that it goes up sometimes as much as it goes down. I'm getting a lot of transfusions of blood and platelets which is normal for my situation.
Cathi
But I logged in today to talk about my DeVore cousins who have contributed much blood and sweat to getting my house rid of all dangers. Dennis, Sara's husband, helped demolish the bathroom, as did Walt's buddy Jeff. Sara and my niece, Margaret, ripped up the carpet from the basement. And hauled it out to the street to be picked up. Then Sara came back and helped Margaret with the cleaning in the basement. Last week Jason, Carol's son, helped Walt rip out the remainder of the paneling and wood from the basement walls and sweep away the dry mold. These are the jobs nobody wants to do and the DeVores pitched in and did them. THANK YOU! (I hope Dennis's back is okay now.)
They all send encouraging emails and many comments on the blog. They have visited and they just remind me who I am. Even though I am isolated, they act pretty normal about it. I get links to bluegrass downloads from the Winfield festival that we attend every year. And I just really appreciate that I'm still included.
Meanwhile life goes on. Daily clinic visits which are in the afternoons now. I actually drove myself to the clinic on Saturday but then had to have Benedryl to get a platelets transfusion so called for a driver to get me home. Mom and Dad are really good about it. I get dropped off at the clinic about half the time now, and I like that. Gives me a little time to catch up, and nap if I want.
Peggy took me to the clinic yesterday and we talked a little bit about what I should be doing with this waiting time. Sometimes I think I should be creating something momentous and meaningful that will outlive me. Other times (and this is what I prefer) I think I just need to keep my business going and my real life intact so I can step back in when I'm well. Peggy reminded me that the same questions apply to everyone. None of us really know how much time we have; and we have to choose every day the best thing we should be doing.
So outside of wishing for more energy, which I didn't even have before I got AML, I'm fine. My white cell count bobbles around but isn't so low that I'm scared. I like that it goes up sometimes as much as it goes down. I'm getting a lot of transfusions of blood and platelets which is normal for my situation.
Cathi
Thursday, April 9, 2009
Time Flies
Time flies when you're having fun. I can't believe it's been a week since I wrote here. A week of the same clinic visits every day. I did get permission to eat out one more time since my friend Diane was here from Houston.
I took Vidaza shots, 2 per day, for 7 days. Out of those 14 shots, 3 sites developed very sore knots. I feel lucky. I lost a few meals, didn't feel great for a few days, but overall, survived in good form. Today I feel pretty good. My clothes reflect the tender tummy, and I would like to have more energy, but I have no pain so I'll be grateful.
On Monday an order was issued for 30 more days of Ambizone. I had a depressed reaction. Not really blue, just 30 more days. My days seemed to be consumed by clinic visits and nothing else was happening. Since February 1st I've been in the hospital or the clinic every single day.
I had the bright idea to change the time to noon giving me the mornings to accomplish something. That has worked out well. Now, instead of 4 piles of paper on the floor of my bedroom, there are about a dozen. I'm not sure how productive this is but I feel better.
I am uneasy now about my counts dropping with this pneumonia still lurking. I want the doctors to reassure me that I won't get sick. Instead they ask me if I want to see the psychiatrist. This dude showed up in my hospital room one day, uninvited, with a colleague and proceeded to 'counsel' me and ask a bunch of idiot questions. I promptly disinvited him, told him I had nothing to say, ran him out, and still have a bill for $400 or so.
Anyway, I am taking two oral antibiotics. I take an anti-viral medication. I go to the clinic daily for an anti-fungal medicine. And I keep clean. Following all the rules for dietary restrictions and isolation. That's the best I can do. And keep busy.
Seems like I had lots of other stuff to say, but tonight you get just the facts I guess.
Cathi
I took Vidaza shots, 2 per day, for 7 days. Out of those 14 shots, 3 sites developed very sore knots. I feel lucky. I lost a few meals, didn't feel great for a few days, but overall, survived in good form. Today I feel pretty good. My clothes reflect the tender tummy, and I would like to have more energy, but I have no pain so I'll be grateful.
On Monday an order was issued for 30 more days of Ambizone. I had a depressed reaction. Not really blue, just 30 more days. My days seemed to be consumed by clinic visits and nothing else was happening. Since February 1st I've been in the hospital or the clinic every single day.
I had the bright idea to change the time to noon giving me the mornings to accomplish something. That has worked out well. Now, instead of 4 piles of paper on the floor of my bedroom, there are about a dozen. I'm not sure how productive this is but I feel better.
I am uneasy now about my counts dropping with this pneumonia still lurking. I want the doctors to reassure me that I won't get sick. Instead they ask me if I want to see the psychiatrist. This dude showed up in my hospital room one day, uninvited, with a colleague and proceeded to 'counsel' me and ask a bunch of idiot questions. I promptly disinvited him, told him I had nothing to say, ran him out, and still have a bill for $400 or so.
Anyway, I am taking two oral antibiotics. I take an anti-viral medication. I go to the clinic daily for an anti-fungal medicine. And I keep clean. Following all the rules for dietary restrictions and isolation. That's the best I can do. And keep busy.
Seems like I had lots of other stuff to say, but tonight you get just the facts I guess.
Cathi
Thursday, April 2, 2009
Holding pattern
Home from my daily clinic visit. 5pm. I go in about 10 every weekday and get home anywhere from 3 to 5. There are lots of variables. How many patients; how many nurses; how fast the pharmacy is; whether I need blood or platelets; etc etc.
I've been getting shots of Vidaza, the chemo drug to keep MDS/leukemia in remission. Two shots in my belly. The shots are painful going in and my stomach feels like someone has been punching me. Ironically, the Vidaza shots don't bruise, but there are bruises left from the neupogen shots: I do look like I've been through the wringer somewhere.
I feel not so great this week. The chemo works on me. I can control the nausea with a cocktail of drugs, one of which is Ativan. Ativan is mainly an anti-anxiety drug but it works well in cancer patients to control nausea. However, it makes me sleepy so I can't drive and I feel kind of cloudy much of the time.
Nurse Practitioner Julie came in today and said "Honestly, if I didn't know your history I would not question a thing about you." So my lungs sound totally normal but the left one looks bad on an x-ray. This has been the case more often than not since I've been sick. Sounds good, looks bad. ugh.
I gather I could be in this holding pattern for several weeks or even months. The lung heals slowly. And that's what we're waiting for. No more dinners out as the ANC count dropped to under 1. Some of the liver enzymes are still high. And those are the facts. My joints hurt when I move. I'm trying to minimize movement...ha ha.
I don't have a good rhythm for my days. It's hard to get started on a project at 3 or 5 in the afternoon. However, Peggy took me to the clinic on Sunday and we spent several hours ordering clothes for me. So I will soon have a new wardrobe; a treat anytime, but especially in my situation. Finally, just for grins, a picture of the night out with the girls.
I've been getting shots of Vidaza, the chemo drug to keep MDS/leukemia in remission. Two shots in my belly. The shots are painful going in and my stomach feels like someone has been punching me. Ironically, the Vidaza shots don't bruise, but there are bruises left from the neupogen shots: I do look like I've been through the wringer somewhere.
I feel not so great this week. The chemo works on me. I can control the nausea with a cocktail of drugs, one of which is Ativan. Ativan is mainly an anti-anxiety drug but it works well in cancer patients to control nausea. However, it makes me sleepy so I can't drive and I feel kind of cloudy much of the time.
Nurse Practitioner Julie came in today and said "Honestly, if I didn't know your history I would not question a thing about you." So my lungs sound totally normal but the left one looks bad on an x-ray. This has been the case more often than not since I've been sick. Sounds good, looks bad. ugh.
I gather I could be in this holding pattern for several weeks or even months. The lung heals slowly. And that's what we're waiting for. No more dinners out as the ANC count dropped to under 1. Some of the liver enzymes are still high. And those are the facts. My joints hurt when I move. I'm trying to minimize movement...ha ha.
I don't have a good rhythm for my days. It's hard to get started on a project at 3 or 5 in the afternoon. However, Peggy took me to the clinic on Sunday and we spent several hours ordering clothes for me. So I will soon have a new wardrobe; a treat anytime, but especially in my situation. Finally, just for grins, a picture of the night out with the girls.
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