Here I am, too long about posting again. I guess I just overlooked it in the commotion of Thanksgiving. Thanksgiving was fun, even though there were just 3 of us, Mom and Dad and me. I stayed at their house the night before and went to work cooking fairly in the morning. I made the stuffing. parsnip/carrot/leek gratin and a new recipe, brussels sprouts succotash. Mari and I also made a superb apple pie the day before which didn't have any takers at Mom's house as she had made 2 pumpkin pies that were delicious. Of course we had turkey and mashed potatoes and gravy. A nice satisfying meal. and I so enjoyed cooking.
Being neutropenic and all, I don't think that technically I'm supposed to cook like that but it was nice to not worry for a day. I can't eat out. I'm not supposed to eat food not cooked in my kitchen (but I fudge this one occasionally.) And I can't go to the store. Not for groceries, not for Christmas presents. I've been leaning on people to go pick up things for me. I find them in the ads or on line then send someone to buy them.
Meanwhile I've had Janice and Mari and Walt and Peggy staying with me. Looks like I will stay at Mom's most of this coming week. I still have days of being sore and wobbly, the occasional womit, and low blood sugar from time to time. This is why I need someone with me--Mostly the blood sugar. It goes with the prednizone. Likewise the Caspo goes with prednizone.
My counts have gone down, but today was better news. The white count was 1.3. It was down under 1, so this is good. Platelets and red blood cells were in the "don't transfuse" range, which is way below normal. So this is good. I think the Revlimid is working. Because of this and because my joints hurt. My clinic visits have bumped up to 3 per week for now. We'll see how this goes.
~Cathi
Monday, November 29, 2010
Saturday, November 20, 2010
Slight change on the course
Visited the clinic yesterday and saw Dr. Aljitawi. We were just talking over one another--it was a scramble. I gained 2#, all by eating. No TPN. I only needed 4 units of potassium (compared to 7 on Tuesday.) Thanks to everyone who sent notes about potassium rich foods. Bananas don't even fall at the top of the list! Baked potatoes do, offering 1031 mg of potassium.
My counts were down. I got blood and platelets and potassium and magnesium. My ANC is .5; my white count was 1.7. ANC is the part of the white cell that actually fights germs. It needs to be over 1 for me to be able to fully participate in food.
I brought up Revlimid and he said "no, we're not ready." But we do think that the 1.4% of your blood that is you is 5q- and that is why your counts are not recovering. We argued a bit and I trumped with "my counts are already in the tank so why not go ahead with the Revlimid before things get any worse." Ok, he says, you've convinced me. Take the Revlimid. Take one less Prednizone--that could be keeping them down too.
He was very happy with the weight gain and kept saying "That is you. you have done that. I am very proud of you." So I just need to follow instructions and continue.
Robbie, your comment a couple of blogs ago about my spirit and my friends is the kind of thing I can wrap up and keep in my pocket for weeks. No matter what the docs say, what my friends say is most important. Barry's simple "proceed" was fun. I am what I am and I love it. Because it brings all these wonderful people into my life. I was thinking a while back about how sometime in the first couple of weeks I asked to have someone spend the nights with me at the hospital and they just did! What an enormous thing to ask for and have people just do it. My kids, my sibs, even my parents took shift or two. How lucky am I?
Other minor things going on include shaving my legs, nurturing the hair growth on my head. Choosing my food carefully. Last night I womited, I think a piece of asparagus triggered the gag reflex right during the meal. I actually came back to the table and ate a biscuit and enjoyed a cobbler for dessert. So it wasn't really nausea, just weakened muscles.
I've been picking at Christmas shopping by pointing at something in the Sunday paper ads and dispatching someone to pick it up. Janice was shopping for new dishes and I insisted she get something she really loves. She's taking my leftover silverware but it's no prize. Sharlyne insisted I get that. She said "I can't believe you have all these plates and bowls and not enough flatware to set a table." If you have ever been scolded by Sharlyne, she has a way of making you feel like a really smart person except for this one stupid thing. So you want to fix the one stupid thing ASAP! which I did.
Today is HB's birthday party and I am web cammed in so I'm going to be on line a bunch I reckon. The kids' house looks ever so festive.
~Cathi
My counts were down. I got blood and platelets and potassium and magnesium. My ANC is .5; my white count was 1.7. ANC is the part of the white cell that actually fights germs. It needs to be over 1 for me to be able to fully participate in food.
I brought up Revlimid and he said "no, we're not ready." But we do think that the 1.4% of your blood that is you is 5q- and that is why your counts are not recovering. We argued a bit and I trumped with "my counts are already in the tank so why not go ahead with the Revlimid before things get any worse." Ok, he says, you've convinced me. Take the Revlimid. Take one less Prednizone--that could be keeping them down too.
He was very happy with the weight gain and kept saying "That is you. you have done that. I am very proud of you." So I just need to follow instructions and continue.
Robbie, your comment a couple of blogs ago about my spirit and my friends is the kind of thing I can wrap up and keep in my pocket for weeks. No matter what the docs say, what my friends say is most important. Barry's simple "proceed" was fun. I am what I am and I love it. Because it brings all these wonderful people into my life. I was thinking a while back about how sometime in the first couple of weeks I asked to have someone spend the nights with me at the hospital and they just did! What an enormous thing to ask for and have people just do it. My kids, my sibs, even my parents took shift or two. How lucky am I?
Other minor things going on include shaving my legs, nurturing the hair growth on my head. Choosing my food carefully. Last night I womited, I think a piece of asparagus triggered the gag reflex right during the meal. I actually came back to the table and ate a biscuit and enjoyed a cobbler for dessert. So it wasn't really nausea, just weakened muscles.
I've been picking at Christmas shopping by pointing at something in the Sunday paper ads and dispatching someone to pick it up. Janice was shopping for new dishes and I insisted she get something she really loves. She's taking my leftover silverware but it's no prize. Sharlyne insisted I get that. She said "I can't believe you have all these plates and bowls and not enough flatware to set a table." If you have ever been scolded by Sharlyne, she has a way of making you feel like a really smart person except for this one stupid thing. So you want to fix the one stupid thing ASAP! which I did.
Today is HB's birthday party and I am web cammed in so I'm going to be on line a bunch I reckon. The kids' house looks ever so festive.
~Cathi
Wednesday, November 17, 2010
more Dang
I went to the clinic yesterday and the counts, except for hemoglobin were all down. I am really neutropenic now. No salad or fresh fruit or leftovers. Not that I'm big on salad or fresh fruit right now with the wobbly stomach, but there are some very fine leftovers in that fridge.
And a new twist, not major, from living without the TPN. The TPN had a lot of vitamins in it and now I'm low on Potassium and Magnesium. I have to take Potassium through the IV because it irritates the stomach. Same for Magnesium. They told me I could take Slo-Mag but be careful because it irritates the stomach sometimes. No thank you. Keeping the stomach calm is number one.
Potassium takes a loooooong time to drip. So 4 hours at the clinic yesterday getting platelets and Potassium, then I brought a backpack home with a few more units. Fortunately potassium does not usually go all night so I can go to sleep unhooked. But this is what it will be till we sort something out. Like my stomach gets well enough to take the pills, or I figure out how many bananas it takes to maintain a healthy potassium level. This is more than appropriate since the prednizone creates a very hairy face and while I don't look like a chimp at all, I feel like one sometimes. And I'm not very crazy about bananas.
Janice is with me this week and she is just full of interesting trivia. She is a schoolteacher on a break so is seeing doctors and getting lab work and picking up scrips. Her husband is on a long term assignment in Connecticut right now.
One time when I was in the hospital and my potassium was low, it seemed like no matter how many units the pharmacist ordered it was never enough. One evening during shift change I overheard the night nurse in the hall. "Give her to me tonight and I'll just drip Potassium all night long and we'll see if that gets it up in the normal range." She had a good idea and it worked.
So limited guests right now, no restaurant food, no fresh, uncooked food. Serious attention to sanitizing. But the blog and the Christmas shopping goes on.
~Cathi
And a new twist, not major, from living without the TPN. The TPN had a lot of vitamins in it and now I'm low on Potassium and Magnesium. I have to take Potassium through the IV because it irritates the stomach. Same for Magnesium. They told me I could take Slo-Mag but be careful because it irritates the stomach sometimes. No thank you. Keeping the stomach calm is number one.
Potassium takes a loooooong time to drip. So 4 hours at the clinic yesterday getting platelets and Potassium, then I brought a backpack home with a few more units. Fortunately potassium does not usually go all night so I can go to sleep unhooked. But this is what it will be till we sort something out. Like my stomach gets well enough to take the pills, or I figure out how many bananas it takes to maintain a healthy potassium level. This is more than appropriate since the prednizone creates a very hairy face and while I don't look like a chimp at all, I feel like one sometimes. And I'm not very crazy about bananas.
Janice is with me this week and she is just full of interesting trivia. She is a schoolteacher on a break so is seeing doctors and getting lab work and picking up scrips. Her husband is on a long term assignment in Connecticut right now.
One time when I was in the hospital and my potassium was low, it seemed like no matter how many units the pharmacist ordered it was never enough. One evening during shift change I overheard the night nurse in the hall. "Give her to me tonight and I'll just drip Potassium all night long and we'll see if that gets it up in the normal range." She had a good idea and it worked.
So limited guests right now, no restaurant food, no fresh, uncooked food. Serious attention to sanitizing. But the blog and the Christmas shopping goes on.
~Cathi
Friday, November 12, 2010
Three YIPPEES and a Dang!
Today is a day to celebrate.
I went to the clinic and I saw Dr Aljitawi. I had my little food journal all prepared and the calories for the last 11 days all tallied up. So he ordered away the TPN. YIPPEE! TPN is the nutrition bag that I carry around in a 10# or more backpack most of the time. From about 7pm til noon the next day. It carried me when I couldn't eat, or couldn't keep anything down. Dr Al thinks my appetite will increase now. Which will be nice. TPN was also hard on my liver so we're glad to get that stopped.
So that's one yippee.
Then he reduced the prednisone by 25% which is a lot. Hopefully I will notice this difference in the ability to build strength and stamina. He also asked about constriction in my body and I have quite a lot of constriction in my hands, which has got worse and now a bit better. So I should not vomit either.
That's two yippees.
And the final yippee was unexpected--the chimerism results show my blood is 98.6% Walt!! We expect this to continue up to 100%. Voila! another successful remission.
Three yippees.
Then one dang!
I got platelets today; blood and platelets Tuesday. I'm still on the Tues/Fri schedule and see a doctor every 2 weeks, a nurse practitioner the week in between. Tuesday the counts had dropped enough to make me neutropenic again. Dang! So that cancelled a few plans including a Rosary for a scout friend's wife. It wasn't high enough to eat out yet today so we had a fine celebration dinner right here at the house. (with just a little bit of wine. ;)
I've had a steady stream of company and companions which has been pleasant. Mom and Dad have been filling in the blanks here and there. Meanwhile I am getting birthday presents ready for Harrison who will turn 2 on the 24th. I've decided not to try going up there for the party or Thanksgiving since I'm just not sure what life will be like til I've tried this method for a few days. I still have to get Caspofungin via IV every day. It comes in a baby bottle like container that we just attach to my arm. There is a balloon inside the bottle filled with the Caspo. And the balloon, being rubberish, creates enough pressure to push the Caspo out of the bottle and into my arm. Very clever these Chinese.
Janice is coming up to stay a week next week. Mari is coming the week after that. Mom & Dad and I are having Thanksgiving together. Perhaps with another friend. I will cook a turkey breast and some favorite recipes and perhaps spring a fine new dessert on them. I've watched a lot of FoodTV since I got sick this time.
And that's the news! Sort of Dang, yippee, yippee, yippee. Not quite Chitty Chitty Bang Bang but we're getting there.
~Cathi
I went to the clinic and I saw Dr Aljitawi. I had my little food journal all prepared and the calories for the last 11 days all tallied up. So he ordered away the TPN. YIPPEE! TPN is the nutrition bag that I carry around in a 10# or more backpack most of the time. From about 7pm til noon the next day. It carried me when I couldn't eat, or couldn't keep anything down. Dr Al thinks my appetite will increase now. Which will be nice. TPN was also hard on my liver so we're glad to get that stopped.
So that's one yippee.
Then he reduced the prednisone by 25% which is a lot. Hopefully I will notice this difference in the ability to build strength and stamina. He also asked about constriction in my body and I have quite a lot of constriction in my hands, which has got worse and now a bit better. So I should not vomit either.
That's two yippees.
And the final yippee was unexpected--the chimerism results show my blood is 98.6% Walt!! We expect this to continue up to 100%. Voila! another successful remission.
Three yippees.
Then one dang!
I got platelets today; blood and platelets Tuesday. I'm still on the Tues/Fri schedule and see a doctor every 2 weeks, a nurse practitioner the week in between. Tuesday the counts had dropped enough to make me neutropenic again. Dang! So that cancelled a few plans including a Rosary for a scout friend's wife. It wasn't high enough to eat out yet today so we had a fine celebration dinner right here at the house. (with just a little bit of wine. ;)
I've had a steady stream of company and companions which has been pleasant. Mom and Dad have been filling in the blanks here and there. Meanwhile I am getting birthday presents ready for Harrison who will turn 2 on the 24th. I've decided not to try going up there for the party or Thanksgiving since I'm just not sure what life will be like til I've tried this method for a few days. I still have to get Caspofungin via IV every day. It comes in a baby bottle like container that we just attach to my arm. There is a balloon inside the bottle filled with the Caspo. And the balloon, being rubberish, creates enough pressure to push the Caspo out of the bottle and into my arm. Very clever these Chinese.
Janice is coming up to stay a week next week. Mari is coming the week after that. Mom & Dad and I are having Thanksgiving together. Perhaps with another friend. I will cook a turkey breast and some favorite recipes and perhaps spring a fine new dessert on them. I've watched a lot of FoodTV since I got sick this time.
And that's the news! Sort of Dang, yippee, yippee, yippee. Not quite Chitty Chitty Bang Bang but we're getting there.
~Cathi
Friday, November 5, 2010
Pep talk at the clinic
I've had a completely unexpected day, starting with getting home from the clinic at 11 am! I didn't need platelets or anything else. They cancelled the biopsy and did a "peripheral blood chimerism" meaning they drew the blood from my arm and will determine how much is Walt and how much is me from that.
McGuirk stepped in after I was already on the procedure table for the biopsy and cancelled it. Then came by to see me and gave me a nice pep talk. He started with a lot of questions about how I feel and eating and all that. And he said "you're in this spot because of your spirit. You have a wonderful spirit." (This practically rendered me speechless.)
We talked about grandkids and my nephew Mason earning his Eagle and calling me and he said "these are the things that make me feel I am doing God's work. These are the important things in life--buying costumes for your grandkids and answering the phone call from your nephew. Thanks for trusting us to take care of you. He also asked when I was going to visit Chicago. That will be a while, but I know it's going to happen.
It was a humbling encounter. He is still amazed that the chloromas melted away. I don't think about it too much; I just keep on truckin' That's my approach and I'm sticking with it. Just proceed.
Mom got sick this week so she is at home recovering (minor gut issue) so I've scrambled around to fill in the blanks. Peggy stayed last night and we watched our recorded "Biggest Loser" from Tuesday. My out of town friends, Mark & Deb Paton are in town today and will stay tonight. Then they head to Manhattan for the showdown against Texas tomorrow night. Mark cooks a fabulous breakfast and nearly always cooks it when we are together, so he's cooking in the morning. And we are going out to eat tonight. Which is why I'm blogging instead of napping.
Let's see Sharlyne is coming in the morning and staying into next week. Lori and I worked on Ella's quilt and put together each of the blocks. I need to lay them out and then we will sew them together with all the borders and stuff. We are both seasoned quilters and the work went very smoothly with me cutting and directing and Lori stitching and ironing.
I've had some time alone so I've worked in my kitchen and tidied it the way I like it. Same with the bedroom. Having my house look moderately organized is soothing to me.
I guess the final news for today is that Dr. McGuirk reduced my appointments from 3 a week to 2 a week. So I don't go back til Tuesday. I think this means I'm going to be taking the full dose of TPN for an extra week or so but we'll see. I must get the food journal updated to doctor style speed reading and perhaps one of them will make the call on Tuesday.
I wish I weren't still taking some of these "help me not vomit" drugs because most of them are anti-anxiety and I can't drive. But I'm sure feeling better and better.
~Cathi
McGuirk stepped in after I was already on the procedure table for the biopsy and cancelled it. Then came by to see me and gave me a nice pep talk. He started with a lot of questions about how I feel and eating and all that. And he said "you're in this spot because of your spirit. You have a wonderful spirit." (This practically rendered me speechless.)
We talked about grandkids and my nephew Mason earning his Eagle and calling me and he said "these are the things that make me feel I am doing God's work. These are the important things in life--buying costumes for your grandkids and answering the phone call from your nephew. Thanks for trusting us to take care of you. He also asked when I was going to visit Chicago. That will be a while, but I know it's going to happen.
It was a humbling encounter. He is still amazed that the chloromas melted away. I don't think about it too much; I just keep on truckin' That's my approach and I'm sticking with it. Just proceed.
Mom got sick this week so she is at home recovering (minor gut issue) so I've scrambled around to fill in the blanks. Peggy stayed last night and we watched our recorded "Biggest Loser" from Tuesday. My out of town friends, Mark & Deb Paton are in town today and will stay tonight. Then they head to Manhattan for the showdown against Texas tomorrow night. Mark cooks a fabulous breakfast and nearly always cooks it when we are together, so he's cooking in the morning. And we are going out to eat tonight. Which is why I'm blogging instead of napping.
Let's see Sharlyne is coming in the morning and staying into next week. Lori and I worked on Ella's quilt and put together each of the blocks. I need to lay them out and then we will sew them together with all the borders and stuff. We are both seasoned quilters and the work went very smoothly with me cutting and directing and Lori stitching and ironing.
I've had some time alone so I've worked in my kitchen and tidied it the way I like it. Same with the bedroom. Having my house look moderately organized is soothing to me.
I guess the final news for today is that Dr. McGuirk reduced my appointments from 3 a week to 2 a week. So I don't go back til Tuesday. I think this means I'm going to be taking the full dose of TPN for an extra week or so but we'll see. I must get the food journal updated to doctor style speed reading and perhaps one of them will make the call on Tuesday.
I wish I weren't still taking some of these "help me not vomit" drugs because most of them are anti-anxiety and I can't drive. But I'm sure feeling better and better.
~Cathi
Wednesday, November 3, 2010
The Very Latest!
and really, not much has changed. The clinic today only took 3 hours and Lori is now my babysitter. She is a quilter so tomorrow we will tag team the Ella quilt and hopefully get that pieced. I got platelets again today.
I am still happily eating along, though I did lose the Mexican food from Monday night. I knew that was a risk but I dared. I'm definitely still relying on the steroids for womit control. However the blood sugar has settled down quite a bit. We started measuring it more often so we could see what it's doing. Of course I have been eating regular for a couple of weeks now so it might be adjusting to the new intake.
My appetite is coming back and I'm actually beginning to wish for certain things to eat. Dinner things. Non-sweet things. Totally unlike the last few weeks. Soon I will be gaining weight and I'll have to lay down on the bed to zip my jeans.
I got a pedicure monday--did I mention that? A wonderful invention, pedicures. When I was young, very young, I sat on the floor at my Granny's feet and gave her pedicures. Of course I had no knowledge of the name of what I was doing but that was it. Soaked her feet, trimmed her ingrown toenails, tidied up and polished. I can't reach my feet properly to work on my toes so I think a storefront you can walk into and get this service for a little bit of cash is just wonderful. (I have made progress on reaching my feet because I can put my socks on by myself.)
And that's probably enough prattle. I'm still scheduled for a bone marrow biopsy on Friday. I'm still scheduled to see a doctor on Monday. I won't have results of the biopsy for a few days. We are most interested in the chimerism--the degree of donor and host cells in there.
Finally these are the grandkids' Halloween costumes in here. Ella was a strawberry and Harrison was DJ Lance Rock (look him up.) He was very cute because he totally gets the dress up and act like someone else gig. His 2nd birthday is in just a couple of weeks!
~Cathi
I am still happily eating along, though I did lose the Mexican food from Monday night. I knew that was a risk but I dared. I'm definitely still relying on the steroids for womit control. However the blood sugar has settled down quite a bit. We started measuring it more often so we could see what it's doing. Of course I have been eating regular for a couple of weeks now so it might be adjusting to the new intake.
My appetite is coming back and I'm actually beginning to wish for certain things to eat. Dinner things. Non-sweet things. Totally unlike the last few weeks. Soon I will be gaining weight and I'll have to lay down on the bed to zip my jeans.
I got a pedicure monday--did I mention that? A wonderful invention, pedicures. When I was young, very young, I sat on the floor at my Granny's feet and gave her pedicures. Of course I had no knowledge of the name of what I was doing but that was it. Soaked her feet, trimmed her ingrown toenails, tidied up and polished. I can't reach my feet properly to work on my toes so I think a storefront you can walk into and get this service for a little bit of cash is just wonderful. (I have made progress on reaching my feet because I can put my socks on by myself.)
And that's probably enough prattle. I'm still scheduled for a bone marrow biopsy on Friday. I'm still scheduled to see a doctor on Monday. I won't have results of the biopsy for a few days. We are most interested in the chimerism--the degree of donor and host cells in there.
Finally these are the grandkids' Halloween costumes in here. Ella was a strawberry and Harrison was DJ Lance Rock (look him up.) He was very cute because he totally gets the dress up and act like someone else gig. His 2nd birthday is in just a couple of weeks!
~Cathi
Monday, November 1, 2010
Blood Sugar Seesaw
After several weeks of blood sugar readings consistently around 100 they have suddenly started bouncing all over. Highs, and lows. Neither one of which is real comfortable for me. I reckon this must be because I've started eating enough to matter. So I'm now recording just about everything. Everything I eat, everything I drink, every blood sugar reading, all with times and other info. Today they did cut back the prednizone another 10 mg so hopefully that will help, at least with the high bs readings.
Friday I have a bone marrow biopsy to see where we are on this continuum. Today my WBC and my Hg were both "up" and healthy, but I still needed platelets. The platelets are just not being produced by the bone marrow. A dropping platelet count was the first sign of relapse before the whole boob leukemia thing. I'll just have to see what the biopsy shows.
Meanwhile Mom is staying this week and my big goal is to get Ella's quilt assembled but the days get pretty crowded with clinic visits and social calls. The courier for blood products at the clinic changed and sometimes I have to wait 4 hours for platelets to be delivered, before they even pour them into me. It's very frustrating. The blood sugar swings affect my momentum.
Gail asked why the vomiting stopped and I'm not sure but here's what we threw at it ultimately. Prednizone (steroids) which would reduce inflammation, and control GVHD; Marinol....more commonly known in its native format of weed; klonipin, another anti-anxiety drug used to control nausea. Meanwhile I worked very hard to avoid hitting that gag reflex, like don't even bend over the sink to brush my teeth.
Tonight is actually the first time I've even felt close to womiting for about 2 weeks. And tonight I went to Tequila Harry's for taco night with M&D and two nephews, Eric and Carson. Carson and his twin brother Blake turned 18 Saturday (Trish's kids.) Blake had to work unexpectedly so missed our dinner. Anyway I ate half a taco; half a very big taco.
I have spent a few afternoons on my own and I confess to enjoying them very much. But the blood sugar seesaw is going to ensure I don't sleep alone for a while. The TPN (nourishment) is also a factor. It is a real production to get set up, hooked up and going. It seems to stop arbitrarily sometimes, different people get different results getting it going. It's just a nuisance.
However today the clinic told me to keep a food diary and if I'm consuming a consistent 800 calories a day they will look at reducing the TPN. And then doing away with it. That should also help with the blood sugar. So it's just going to be a while before I am anything more than a patient. Sigh.
~Cathi
Friday I have a bone marrow biopsy to see where we are on this continuum. Today my WBC and my Hg were both "up" and healthy, but I still needed platelets. The platelets are just not being produced by the bone marrow. A dropping platelet count was the first sign of relapse before the whole boob leukemia thing. I'll just have to see what the biopsy shows.
Meanwhile Mom is staying this week and my big goal is to get Ella's quilt assembled but the days get pretty crowded with clinic visits and social calls. The courier for blood products at the clinic changed and sometimes I have to wait 4 hours for platelets to be delivered, before they even pour them into me. It's very frustrating. The blood sugar swings affect my momentum.
Gail asked why the vomiting stopped and I'm not sure but here's what we threw at it ultimately. Prednizone (steroids) which would reduce inflammation, and control GVHD; Marinol....more commonly known in its native format of weed; klonipin, another anti-anxiety drug used to control nausea. Meanwhile I worked very hard to avoid hitting that gag reflex, like don't even bend over the sink to brush my teeth.
Tonight is actually the first time I've even felt close to womiting for about 2 weeks. And tonight I went to Tequila Harry's for taco night with M&D and two nephews, Eric and Carson. Carson and his twin brother Blake turned 18 Saturday (Trish's kids.) Blake had to work unexpectedly so missed our dinner. Anyway I ate half a taco; half a very big taco.
I have spent a few afternoons on my own and I confess to enjoying them very much. But the blood sugar seesaw is going to ensure I don't sleep alone for a while. The TPN (nourishment) is also a factor. It is a real production to get set up, hooked up and going. It seems to stop arbitrarily sometimes, different people get different results getting it going. It's just a nuisance.
However today the clinic told me to keep a food diary and if I'm consuming a consistent 800 calories a day they will look at reducing the TPN. And then doing away with it. That should also help with the blood sugar. So it's just going to be a while before I am anything more than a patient. Sigh.
~Cathi
Friday, October 29, 2010
To illustrate how much improved I'm feeling I will just tell you that I ate a McDonald's happy meal for lunch yesterday. The fries didn't taste so great but the burger was fine. And no womiting. I ate at McDonald's because Mari and I were on a major shopping trip and simply didn't have time to stop. We hit JoAnn fabrics, Marbeck's, and Aldi's. All in one trip. I came home and took a nap but I take naps most days.
Tuesday I got a call from the clinic that my CMV came back positive. That would be why Mon and Tues were not so great days. Changed my meds again but at least I can swallow pills again these days. So I take this big honkin expensive pill for a week and check again. Then I think I'm off a week and back on a week. I have felt good since Tues.
I'm pretty weak and not really getting stronger, thanks to the prednizone. They cut it back 10 mg on wed so now I'm taking 5 pills a day instead of 6. Of course I have to split them between morning and evening so that means I'm still taking 6 pills because 1 is cut in half. The new antiviral is 2 big pills to replace 2 big halves of 1 very big pill; and of course they added a nice size capsule to the mix--all twice a day. So it will be a while before I'm driving. Tractors anyway.
My niece's wedding was lovely and she was beautiful. It was fun to see all the family. I was pretty tired after just the wedding though so we headed home instead of to the reception. Mark and his buddy came to the wedding which was a nice benefit--Nice to get his big bear hugs. When we arrived at the church for the wedding I checked my blood sugar and it was 48! yikes! so I sat in the car and drank juice while the kids rustled up some chicken nuggets for me to eat. It took a while to get the blood sugar count up to normal but I scrambled in to the church at the last minute.
Well it's another long day at the clinic. We've been here 2 hours and just got lab results. I could still be here at 5 the way this is going. One fellow just sat down outside my door and got his labs in half an hour or less. I seem to get the short end of the lab stick every time this week. sigh.
~Cathi
Tuesday I got a call from the clinic that my CMV came back positive. That would be why Mon and Tues were not so great days. Changed my meds again but at least I can swallow pills again these days. So I take this big honkin expensive pill for a week and check again. Then I think I'm off a week and back on a week. I have felt good since Tues.
I'm pretty weak and not really getting stronger, thanks to the prednizone. They cut it back 10 mg on wed so now I'm taking 5 pills a day instead of 6. Of course I have to split them between morning and evening so that means I'm still taking 6 pills because 1 is cut in half. The new antiviral is 2 big pills to replace 2 big halves of 1 very big pill; and of course they added a nice size capsule to the mix--all twice a day. So it will be a while before I'm driving. Tractors anyway.
My niece's wedding was lovely and she was beautiful. It was fun to see all the family. I was pretty tired after just the wedding though so we headed home instead of to the reception. Mark and his buddy came to the wedding which was a nice benefit--Nice to get his big bear hugs. When we arrived at the church for the wedding I checked my blood sugar and it was 48! yikes! so I sat in the car and drank juice while the kids rustled up some chicken nuggets for me to eat. It took a while to get the blood sugar count up to normal but I scrambled in to the church at the last minute.
Well it's another long day at the clinic. We've been here 2 hours and just got lab results. I could still be here at 5 the way this is going. One fellow just sat down outside my door and got his labs in half an hour or less. I seem to get the short end of the lab stick every time this week. sigh.
~Cathi
Saturday, October 23, 2010
Another focus shift
I am still at home. I feel surprisingly good. I have only womited twice this week. My blood sugar is pretty stable so incidents of lightheadedness are infrequent. The clinic actually suggested staying by myself in the afternoons.
A few weeks ago I did not expect this. I did not expect to be shopping for November birthdays or Christmas presents. My white count and my red count are holding up pretty good; no neupogen or blood transfusions for a couple of weeks. Just the platelets need supplementing.
I ask the providers what's going on, what's likely to happen and the universal answer is "we don't know." So I could continue improving and enjoying life for months, a very indefinite number.
I have to change my thinking. Shorten the horizon. Do what's possible today. And be very very grateful for the opportunity and for my caregivers who make it possible. I have approached this illness from the start with a lot of energy, with specific recovery goals. Now then I am coasting. My family and friends who are such diligent, loving caregivers are putting in the energy. The folks at the clinic and the hospital are no longer surprised by the number of people involved but they are amazed. Few patients are so lucky. I think this is the reason I'm still here and feeling good.
So feeling good means that yesterday Mari and I went to a quilt shop and bought fabric for Ella's quilt. Today we are driving down to Ft Scott for my niece's wedding. We cut an article from the paper about driving routes with good fall color. Obviously I hope to sew the quilt. So short term plans but not staying home.
The visit with the kids was awesome. I could not lift HB or Ella but once someone put them in my arms we were good. Harrison went across the street to play with Jake and Clare each evening which tickled them all. Conor and Annie took very good care of me and the house without complaining. It really added a lot to their workload but they just got after it. Annie's Mom, Cheryl, drove up from Liberal with baby things so we were well equipped.
Between Walt and Margaret/Craig, little things around the house are getting done. Mari makes the house shine every day. Last night she tried a new recipe which was fun and tasty. Margaret is now expecting a baby in May...we're all very excited.
Meanwhile I am at home. I visit the clinic every other day. I'm semi busy and semi content.
~Cathi
A few weeks ago I did not expect this. I did not expect to be shopping for November birthdays or Christmas presents. My white count and my red count are holding up pretty good; no neupogen or blood transfusions for a couple of weeks. Just the platelets need supplementing.
I ask the providers what's going on, what's likely to happen and the universal answer is "we don't know." So I could continue improving and enjoying life for months, a very indefinite number.
I have to change my thinking. Shorten the horizon. Do what's possible today. And be very very grateful for the opportunity and for my caregivers who make it possible. I have approached this illness from the start with a lot of energy, with specific recovery goals. Now then I am coasting. My family and friends who are such diligent, loving caregivers are putting in the energy. The folks at the clinic and the hospital are no longer surprised by the number of people involved but they are amazed. Few patients are so lucky. I think this is the reason I'm still here and feeling good.
So feeling good means that yesterday Mari and I went to a quilt shop and bought fabric for Ella's quilt. Today we are driving down to Ft Scott for my niece's wedding. We cut an article from the paper about driving routes with good fall color. Obviously I hope to sew the quilt. So short term plans but not staying home.
The visit with the kids was awesome. I could not lift HB or Ella but once someone put them in my arms we were good. Harrison went across the street to play with Jake and Clare each evening which tickled them all. Conor and Annie took very good care of me and the house without complaining. It really added a lot to their workload but they just got after it. Annie's Mom, Cheryl, drove up from Liberal with baby things so we were well equipped.
Between Walt and Margaret/Craig, little things around the house are getting done. Mari makes the house shine every day. Last night she tried a new recipe which was fun and tasty. Margaret is now expecting a baby in May...we're all very excited.
Meanwhile I am at home. I visit the clinic every other day. I'm semi busy and semi content.
~Cathi
Sunday, October 17, 2010
Home in the zone
Sunday night and I am home. I got out of the hospital Thursday late afternoon and have been enjoying being here. I have the TPN to carry around most of the time, and baby bottles of Caspofungin, the current anti-fungal I'm taking.
The rest of the pills are a crapshoot. I try to spread them out so I don't take too many at once but my stomach still revolts against the pills. The womiting continues but there is no blood.
I'm trying to eat so I can gain some weight and most things stay down. But it's not enough to stop the weight loss.
Conor and Annie arrived today with Harrison & Ella and I am totally charmed by both of them. Harrison is having the most fun with my Halloween candy bowl that has a green hand in it that reaches and talks when you reach in the bowl. But we have plenty of toys for him. Zack & Jenn loaned us some, and Annie's mom drove in from Liberal with all sorts of baby gear to make life easier.
My counts are holding pretty steady except for platelets. I went in for one unit today and I go back Tues mid day to be checked out. I must check my blood sugar 3x a day and take insulin if called for. Though yesterday I had a spell of low blood sugar that we like to never got to sort itself out. Juice and peanut butter and finally hard candy.
So I'm going to meander over to the pill cabinet and see what I think I can safely take this evening that will stay down. The puzzle is made more interesting because the prednizone interferes with my sleep. Did I mention that? Prednizone is now part of the regime.
~Cathi
The rest of the pills are a crapshoot. I try to spread them out so I don't take too many at once but my stomach still revolts against the pills. The womiting continues but there is no blood.
I'm trying to eat so I can gain some weight and most things stay down. But it's not enough to stop the weight loss.
Conor and Annie arrived today with Harrison & Ella and I am totally charmed by both of them. Harrison is having the most fun with my Halloween candy bowl that has a green hand in it that reaches and talks when you reach in the bowl. But we have plenty of toys for him. Zack & Jenn loaned us some, and Annie's mom drove in from Liberal with all sorts of baby gear to make life easier.
My counts are holding pretty steady except for platelets. I went in for one unit today and I go back Tues mid day to be checked out. I must check my blood sugar 3x a day and take insulin if called for. Though yesterday I had a spell of low blood sugar that we like to never got to sort itself out. Juice and peanut butter and finally hard candy.
So I'm going to meander over to the pill cabinet and see what I think I can safely take this evening that will stay down. The puzzle is made more interesting because the prednizone interferes with my sleep. Did I mention that? Prednizone is now part of the regime.
~Cathi
Wednesday, October 13, 2010
blog update
Wed. 10/6. Discharge from hospital. Vomit 1st thing I try to eat. It's late, I went to bed.
Thu. 10/7. Margaret and Craig arrive. They are so kind and loving and hard working. Eat just a little. Vomit.
Fri. 10/8. Craig takes me to the clinic and I see Dr. Aljitawi. All kinds of ideas which have been tried. Get some platelets.
Sat. 10/9. Eat a big breakfast that Craig cooked. Coffee cake and baked eggs. Then have a big supper that brother-in-law Mark cooked--bit of steak, carrots, baked potato. Followed by healthy serving of Mom's cherry cobbler. yum
Sun. 10/10. Mom takes over from Margaret & Craig who head back to Kentucky. She is on a mission to get food and drink into me. My throat is blocked somehow and I can only drink a couple of small sips without choking/vomiting. Same for food. Vomit often, with lots of blood. While taking ambien to just get rid of this day, begin vomiting violently with lots of blood and clots and 1 very large clot that obviously had been blocking my esophagus. I'm happy to be able to take a large gulp of water, not happy about going to hospital.
Sun 10/10. 9:30 pm. Get admitted to hospital. Room 4112. a nice big room.
Mon. 10/11. Much commotion because I've been given 2 units of blood with no corresponding rise in Hg count. "You are still bleeding internally somewhere." Rock and roll the GI docs and an endoscopy, meanwhile drawing blood about hourly to check levels. Scope finds a protrusion in esophagus which is not currently bleeding so took pictures and backed out. Vomited at end of procedure while still all trussed up, very messy. Doc said that was good, "all green bile no blood." (Have they forgotten the original problem is vomiting?)
Mon. 10/11. 7pm CT scan with contrast to check for fistula relative to protrusion located above. Extremely weird sensations go with that contrast. Overnight goal is to get platelets over 50 for another scope on Tues to fix it.
Tues. 10/12. No food or drink after midnight til everything was ready for the repair mission. Platelets 57, woot woot. Scope finds protrusion was another blood clot, easily removed. Completed scope but did not take biopsies (don't know a good thing when they see it.) However two recent scopes with biopsies showed no GVH.
Tues. 10/12. 5pm. Ate a bowl of cream of wheat and a pancake both of which tasted great. Watched Wheel of Fortune and The Biggest Loser. Got in bed and vomited. No blood.
Wed. 10/13. Vomited. Ate Blue Koi noodles for lunch. BMT doctor wants GI docs to step up and help diagnose the vomiting. Waiting on sonogram of liver. Expect to vomit again before then. However food tastes better, and the food appears to be digesting and leaving the stomach.
sorry updates are so long in coming. I feel pretty good right now, just frustrated and tired.
~Cathi
Thu. 10/7. Margaret and Craig arrive. They are so kind and loving and hard working. Eat just a little. Vomit.
Fri. 10/8. Craig takes me to the clinic and I see Dr. Aljitawi. All kinds of ideas which have been tried. Get some platelets.
Sat. 10/9. Eat a big breakfast that Craig cooked. Coffee cake and baked eggs. Then have a big supper that brother-in-law Mark cooked--bit of steak, carrots, baked potato. Followed by healthy serving of Mom's cherry cobbler. yum
Sun. 10/10. Mom takes over from Margaret & Craig who head back to Kentucky. She is on a mission to get food and drink into me. My throat is blocked somehow and I can only drink a couple of small sips without choking/vomiting. Same for food. Vomit often, with lots of blood. While taking ambien to just get rid of this day, begin vomiting violently with lots of blood and clots and 1 very large clot that obviously had been blocking my esophagus. I'm happy to be able to take a large gulp of water, not happy about going to hospital.
Sun 10/10. 9:30 pm. Get admitted to hospital. Room 4112. a nice big room.
Mon. 10/11. Much commotion because I've been given 2 units of blood with no corresponding rise in Hg count. "You are still bleeding internally somewhere." Rock and roll the GI docs and an endoscopy, meanwhile drawing blood about hourly to check levels. Scope finds a protrusion in esophagus which is not currently bleeding so took pictures and backed out. Vomited at end of procedure while still all trussed up, very messy. Doc said that was good, "all green bile no blood." (Have they forgotten the original problem is vomiting?)
Mon. 10/11. 7pm CT scan with contrast to check for fistula relative to protrusion located above. Extremely weird sensations go with that contrast. Overnight goal is to get platelets over 50 for another scope on Tues to fix it.
Tues. 10/12. No food or drink after midnight til everything was ready for the repair mission. Platelets 57, woot woot. Scope finds protrusion was another blood clot, easily removed. Completed scope but did not take biopsies (don't know a good thing when they see it.) However two recent scopes with biopsies showed no GVH.
Tues. 10/12. 5pm. Ate a bowl of cream of wheat and a pancake both of which tasted great. Watched Wheel of Fortune and The Biggest Loser. Got in bed and vomited. No blood.
Wed. 10/13. Vomited. Ate Blue Koi noodles for lunch. BMT doctor wants GI docs to step up and help diagnose the vomiting. Waiting on sonogram of liver. Expect to vomit again before then. However food tastes better, and the food appears to be digesting and leaving the stomach.
sorry updates are so long in coming. I feel pretty good right now, just frustrated and tired.
~Cathi
Thursday, October 7, 2010
Muscling through
I came home yesterday. It's very nice being here. Sleeping in my own bed and moving around without a pole even though I have a heavy backpack of nutrition to haul around.
However I have not been keeping my food down. I am bound and determined to muscle this out and figure out how to eat and keep it down. Today my stomach has actually made hungry noises and I have obliged it by eating and since breakfast that's been successful.
Yesterday after the neupogen shot my wbc was 3.2 and my anc was 4.760 or some ridiculously high number. This means I can eat anything I want if my stomach was cooperating. I go to the clinic at 8 tomorrow morning. We're going to try an every other day schedule. That should be enough to keep my platelets and hemoglobin in the functioning range.
I confess I don't feel very good. This may be the normal pains of taking neupogen or it may be something else. I don't have the energy that I had even earlier this week.
My niece, Margaret, and her husband Craig are my caretakers this weekend then after a day with Lori, Trish will come for a few days. I think that gets me to the weekend that Conor and Annie are coming with the kids.
However I have not been keeping my food down. I am bound and determined to muscle this out and figure out how to eat and keep it down. Today my stomach has actually made hungry noises and I have obliged it by eating and since breakfast that's been successful.
Yesterday after the neupogen shot my wbc was 3.2 and my anc was 4.760 or some ridiculously high number. This means I can eat anything I want if my stomach was cooperating. I go to the clinic at 8 tomorrow morning. We're going to try an every other day schedule. That should be enough to keep my platelets and hemoglobin in the functioning range.
I confess I don't feel very good. This may be the normal pains of taking neupogen or it may be something else. I don't have the energy that I had even earlier this week.
My niece, Margaret, and her husband Craig are my caretakers this weekend then after a day with Lori, Trish will come for a few days. I think that gets me to the weekend that Conor and Annie are coming with the kids.
Tuesday, October 5, 2010
Hi everyone,
Robbie here, posting for Cathi. I'm heading back to Vermont later today but have enjoyed hanging with Cathi in 4102 in the ol' KUMC BMT. She's doing pretty well and is anticipating going home tomorrow or Thursday. Dr. Abhyankar ordered another neupogen booster shot for today to kick those white blood cells into gear, the first one since Thursday. Cathi's making progress with eating and has two meals down today so far. She's still using Ativan (an anti-throwing-up drug) to keep things settled but no womiting so far today. We're heading out soon to walk a few laps around the unit.
I'm getting this hospital figured out, and my routines here. Because it takes several minutes to enter the unit (push wall button to open first set of double doors, wash hands thoroughly for 15 seconds, dry hands, sign in, pick up the phone to request second doors opening, wait for doors to open, enter unit) I try to group things together. I go down the stairs, get the newspaper, peruse the options in the cafeteria and plan lunch; see if there's anything new in the gift shop; climb the stairs back up to the 4th floor, stop by the Resource Room to see if there's anything new and to heat up a cup of water for tea; then go through the process of entering the unit again.
The unit is very well staffed - plenty of nurses and aides. When Cathi pushes the button asking for help, response time is excellent. Of course, she knows them all and they all know her. The nurses in particular are caring and seem to be on top of her needs. It's a small unit - only 12 rooms. Transplant patients are usually admitted for a four-week stay so they often bring their own TVs, DVD players and other things from home to make their stay easier. When we were walking laps yesterday we saw a darkened room lit with several candles (or those battery tea light things that look like candles - I can't imagine that real candles would be allowed). Of course, Cathi has her purple-jacketed dancing Elvis clock on the wall of her room, thanks to Mark who brought it from her home. Each to her own!
Robbie here, posting for Cathi. I'm heading back to Vermont later today but have enjoyed hanging with Cathi in 4102 in the ol' KUMC BMT. She's doing pretty well and is anticipating going home tomorrow or Thursday. Dr. Abhyankar ordered another neupogen booster shot for today to kick those white blood cells into gear, the first one since Thursday. Cathi's making progress with eating and has two meals down today so far. She's still using Ativan (an anti-throwing-up drug) to keep things settled but no womiting so far today. We're heading out soon to walk a few laps around the unit.
I'm getting this hospital figured out, and my routines here. Because it takes several minutes to enter the unit (push wall button to open first set of double doors, wash hands thoroughly for 15 seconds, dry hands, sign in, pick up the phone to request second doors opening, wait for doors to open, enter unit) I try to group things together. I go down the stairs, get the newspaper, peruse the options in the cafeteria and plan lunch; see if there's anything new in the gift shop; climb the stairs back up to the 4th floor, stop by the Resource Room to see if there's anything new and to heat up a cup of water for tea; then go through the process of entering the unit again.
The unit is very well staffed - plenty of nurses and aides. When Cathi pushes the button asking for help, response time is excellent. Of course, she knows them all and they all know her. The nurses in particular are caring and seem to be on top of her needs. It's a small unit - only 12 rooms. Transplant patients are usually admitted for a four-week stay so they often bring their own TVs, DVD players and other things from home to make their stay easier. When we were walking laps yesterday we saw a darkened room lit with several candles (or those battery tea light things that look like candles - I can't imagine that real candles would be allowed). Of course, Cathi has her purple-jacketed dancing Elvis clock on the wall of her room, thanks to Mark who brought it from her home. Each to her own!
Friday, October 1, 2010
Grallace & Womit
Gail updating the blog this afternoon.
Cathi has steadily improved since earlier this week. 2 days of no womiting, followed by 2 days of womiting. Very little vomiting, but vomiting, nonetheless.
Meds have been changed. Cathi is getting only overnight nutrition (TPN) and some other antibiotics via IV. After those finish, the IV pole is pushed aside. More meds are showing up in pill form, including Ativan for nausea. Dr. Abyankhar has also provided a base rate of Klonopin to battle the nausea. It seems to be working well since over the last 36 hours Cathi has only had to womit twice and only upon waking in the morning.
Her counts continue to rise slowly. She had received Neupogen shots to boost the neutrophil production in the bone marrow and the latest test puts her over the neutropenic threshold, meaning she can eat anything she wants to! (the irony is obvious in that statement...)
The neupogen shots have stopped for a couple of days to see if things will maintain on their own. If the numbers begin to decrease, then more neupogen to urge those buggers back into production.
Her white blood cells, hemoglobin, and platelets are slowly improving. Dr. Abyankhar seems to think that those counts will jump aboard the healthy train any moment. Every day that they inch up is another indicator that the bone marrow is working.
Cards keep showing up in the mail and Cathi is DELIGHTED to open and read each lovely written note. Friends from around town have popped in for a few short minutes to say hello and catch up very briefly. It is good for Cathi to see people and know that she is not forgotten in our busy lives.
I (Gail) spent all day Thursday taping Cathi's stories about her growing up years. I ran out of time Friday to finish the project, but Cathi's friend, Robbie, who will be here over the weekend, will take up where we left off. The stories are poignant and funny at the same time. I've learned things about Cathi I never knew - such a treat to get to know Cathi through the telling of her memories. If you've ever listened to NPR's Story Corps programs, you will understand the format of this project. I have a lot of editing to do, but will be able to help Cathi cross a few things off her list very soon. It will help relieve some of her feelings of too many things to do in too little time.
Cathi's days seem to blend one into another. Having emails, cards & blog posts is such a treat every day. Keep 'em coming & keep up the NO WOMITING karma!!
Cathi has steadily improved since earlier this week. 2 days of no womiting, followed by 2 days of womiting. Very little vomiting, but vomiting, nonetheless.
Meds have been changed. Cathi is getting only overnight nutrition (TPN) and some other antibiotics via IV. After those finish, the IV pole is pushed aside. More meds are showing up in pill form, including Ativan for nausea. Dr. Abyankhar has also provided a base rate of Klonopin to battle the nausea. It seems to be working well since over the last 36 hours Cathi has only had to womit twice and only upon waking in the morning.
Her counts continue to rise slowly. She had received Neupogen shots to boost the neutrophil production in the bone marrow and the latest test puts her over the neutropenic threshold, meaning she can eat anything she wants to! (the irony is obvious in that statement...)
The neupogen shots have stopped for a couple of days to see if things will maintain on their own. If the numbers begin to decrease, then more neupogen to urge those buggers back into production.
Her white blood cells, hemoglobin, and platelets are slowly improving. Dr. Abyankhar seems to think that those counts will jump aboard the healthy train any moment. Every day that they inch up is another indicator that the bone marrow is working.
Cards keep showing up in the mail and Cathi is DELIGHTED to open and read each lovely written note. Friends from around town have popped in for a few short minutes to say hello and catch up very briefly. It is good for Cathi to see people and know that she is not forgotten in our busy lives.
I (Gail) spent all day Thursday taping Cathi's stories about her growing up years. I ran out of time Friday to finish the project, but Cathi's friend, Robbie, who will be here over the weekend, will take up where we left off. The stories are poignant and funny at the same time. I've learned things about Cathi I never knew - such a treat to get to know Cathi through the telling of her memories. If you've ever listened to NPR's Story Corps programs, you will understand the format of this project. I have a lot of editing to do, but will be able to help Cathi cross a few things off her list very soon. It will help relieve some of her feelings of too many things to do in too little time.
Cathi's days seem to blend one into another. Having emails, cards & blog posts is such a treat every day. Keep 'em coming & keep up the NO WOMITING karma!!
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