By end of day Wednesday, things had really perked up. The antibiotic they gave Mom helped a lot and she was feeling better by the time her head hit the pillow (where it spent a lot of the day anyhow w/ the fever).
Yesterday the doctors came in and reported the most important aspect and that's that the transplant is not being delayed as a result of this visit. She will be in the hospital for a couple of days due to a picc line replacement. They have to wait 24 hours to insert a new one which has meant standard IVs in both arms...mom 'loves' this.
But great to see things are much improved from Tuesday night and Wednesday morning w/ no impacts to the previous 'plan'. Now let's keep hoping that things continue where she will get out soon and start ramping up on the transplant!
Friday, May 29, 2009
Wednesday, May 27, 2009
5/27 - Strep Bites
Conor reporting here...
Although mom wasn't set to visit the clinic for a few more days, she went to the hospital last night to get checked out. They sent her home only for her to wake up this morning with a fever. So she went back and is now admitted.
The tests they conducted show that she has some form of infection potentially (still confirming) from her picc line. They ran some tests on the line which came back positive as well as diagnosing her with strep. If the antibiotic they give her to treat the strep works, she'll keep her picc line in place. However if it doesn't address the problem, they'll swap out her line again.
At this point there's still not a lot more clarity unfortunately. Mom will keep taking it task by task, a minute at a time, and we'll go from there. I'll provide another update when I can, but wanted to ensure everyone knew she had gotten strep and was in the hospital again.
Btw, it's KU Med Center Room 4108 for those wondering. I'll update the current address if it appears she's going to be there more than a few days. Otherwise mail is better sent to Grandma and Grandpa's house.
Although mom wasn't set to visit the clinic for a few more days, she went to the hospital last night to get checked out. They sent her home only for her to wake up this morning with a fever. So she went back and is now admitted.
The tests they conducted show that she has some form of infection potentially (still confirming) from her picc line. They ran some tests on the line which came back positive as well as diagnosing her with strep. If the antibiotic they give her to treat the strep works, she'll keep her picc line in place. However if it doesn't address the problem, they'll swap out her line again.
At this point there's still not a lot more clarity unfortunately. Mom will keep taking it task by task, a minute at a time, and we'll go from there. I'll provide another update when I can, but wanted to ensure everyone knew she had gotten strep and was in the hospital again.
Btw, it's KU Med Center Room 4108 for those wondering. I'll update the current address if it appears she's going to be there more than a few days. Otherwise mail is better sent to Grandma and Grandpa's house.
Saturday, May 23, 2009
The wedding
This evening was the wedding and I had so much fun! Lisa was beautiful, the church was awesome and Walt was looking after me. I am appalled at how terrible my arms look but don't think I will be adding weights to my routine right away. I was worried about my double chin in the photos not my arms!
A few pics.
Friday, May 22, 2009
Ups and Downs
After a splendid day off Thursday, I arrived at the clinic this morning to a nurse Gayle's quip "haven't seen YOU in a while." hahahahaha. The clinic was understaffed and overworked this morning. I ended up in a room with a recliner (I usually have a bed which is more comfortable for some of the long days I am there.) The fluid before the Ambisome was started and labs drawn and the nurse practitioner arrived all about the same time. Mary was surprised to hear about the every other day plan for the Ambisome. And she changed it. Every day for the next 2 weeks. ugh. Wendy made the appointments and I pouted.
Gayle wanted to know "why?" She said "nothing changed about your CT scan did it?" So since I was glumming she got busy. I also had a bone marrow biopsy today which screwed up the schedule. I could not get blood before the test and the platelets had not arrived. (This is where I tell you that I was at the clinic for 9 1/2 hours today, a record I think.)
When I returned from the biopsy Wendy was waiting for me and said the pharmacist recommended that the Ambisome be continued every day; he didn't think it would do any good to get it every other day. She was giving me more details when Mary came in behind her and said "We changed it again." We're going to switch you to posiconazole (oral anti-fungal medicine) and have you come in every other day for labs. We may not start the Vidaza on Tuesday because we think you may be ready for transplant. Dr. McGuirk thinks what is left in your lung is probably scar tissue so we may be heading into transplant and we don't want to give you Vidaza if the transplant is that close.
Now keep in mind that you're getting this in 3 short paragraphs and I got it over the course of a day that included setting appointments for every other day, then every day, then back to every other day. I resorted to chocolate from the candy machine when I went to get the biopsy...I simply did not know how to feel. It still hasn't soaked in completely.
Finally, Wendy called the posiconazole into the pharmacy and they were out. As were the other pharmacies we cancer patients rely on to have "our" drugs. So then the doctors decided that I have enough Ambisome in me to float a battleship and I can wait til Tuesday to start taking the posiconazole. Go figure.
Meanwhile I phoned Lisa, tomorrow's bride to let her know I would miss the rehearsal this evening and as long as she didn't have me walk down the aisle first I would be okay. She said "oh no, honey, you're last. So you can sit down with my mom if you get tired standing up there." How considerate is that?
Yesterday was just wonderful. I caught up with a little correspondence, did some laundry, messed with the iPod and the treadmill again (still didn't figure it out....) This morning I did not want to go. I wanted another day like yesterday to relax in. So all in all I'm fine. Just fine.
Cathi
Gayle wanted to know "why?" She said "nothing changed about your CT scan did it?" So since I was glumming she got busy. I also had a bone marrow biopsy today which screwed up the schedule. I could not get blood before the test and the platelets had not arrived. (This is where I tell you that I was at the clinic for 9 1/2 hours today, a record I think.)
When I returned from the biopsy Wendy was waiting for me and said the pharmacist recommended that the Ambisome be continued every day; he didn't think it would do any good to get it every other day. She was giving me more details when Mary came in behind her and said "We changed it again." We're going to switch you to posiconazole (oral anti-fungal medicine) and have you come in every other day for labs. We may not start the Vidaza on Tuesday because we think you may be ready for transplant. Dr. McGuirk thinks what is left in your lung is probably scar tissue so we may be heading into transplant and we don't want to give you Vidaza if the transplant is that close.
Now keep in mind that you're getting this in 3 short paragraphs and I got it over the course of a day that included setting appointments for every other day, then every day, then back to every other day. I resorted to chocolate from the candy machine when I went to get the biopsy...I simply did not know how to feel. It still hasn't soaked in completely.
Finally, Wendy called the posiconazole into the pharmacy and they were out. As were the other pharmacies we cancer patients rely on to have "our" drugs. So then the doctors decided that I have enough Ambisome in me to float a battleship and I can wait til Tuesday to start taking the posiconazole. Go figure.
Meanwhile I phoned Lisa, tomorrow's bride to let her know I would miss the rehearsal this evening and as long as she didn't have me walk down the aisle first I would be okay. She said "oh no, honey, you're last. So you can sit down with my mom if you get tired standing up there." How considerate is that?
Yesterday was just wonderful. I caught up with a little correspondence, did some laundry, messed with the iPod and the treadmill again (still didn't figure it out....) This morning I did not want to go. I wanted another day like yesterday to relax in. So all in all I'm fine. Just fine.
Cathi
Tuesday, May 19, 2009
Celebration at the Clinic
The nurses at the clinic got the CT Scan results yesterday and had a celebration without me, but when I arrived this morning they were still celebrating. They came dancing through my cube making festive noises and I was all about joining the parade.
Another "improvement in left upper lobe pneumonia with improved aeration." And I can reduce my clinic visits to every other day. I have all these ideas about what to do with the time. I hope I have that much energy too. Dr. McGuirk even got into the festivities. So I will get Ambisome every other day for two or more weeks and then evaluate what oral anti-fungal to take.
I called the hot line last night because my throat was sore when I swallowed, the glands in my neck were sore and yesterday I coughed a lot. I got word to gargle with salt water (don't swallow it--did he really need to tell me that?) and show up at the clinic this morning. No sore throat or cough this morning, just the sore neck. Dr. Ganguly was consulted and said "keep taking the anti-biotics and call if she gets a fever. She knows the drill." Still the same that Ganguly. So we'll chalk this up to allergies and move forward.
Dr. McGuirk was enthused. He said now things are moving. We know we'll be doing that next transplant. No dates yet, but I don't need dates right now. Just keep up the treadmill and all the dang pills. Someone suggested I go home and have a martini to celebrate. I suggested some gin in that tonic water. But I'm maintaining my decorum and the volume in the gin bottle.
I go in tomorrow, then friday and Sunday so that I can have Saturday off for the big wedding. I was not enthused about being a bridesmaid at my age, but I'm all over it now. I'm really looking forward to that outing.
Cathi
Another "improvement in left upper lobe pneumonia with improved aeration." And I can reduce my clinic visits to every other day. I have all these ideas about what to do with the time. I hope I have that much energy too. Dr. McGuirk even got into the festivities. So I will get Ambisome every other day for two or more weeks and then evaluate what oral anti-fungal to take.
I called the hot line last night because my throat was sore when I swallowed, the glands in my neck were sore and yesterday I coughed a lot. I got word to gargle with salt water (don't swallow it--did he really need to tell me that?) and show up at the clinic this morning. No sore throat or cough this morning, just the sore neck. Dr. Ganguly was consulted and said "keep taking the anti-biotics and call if she gets a fever. She knows the drill." Still the same that Ganguly. So we'll chalk this up to allergies and move forward.
Dr. McGuirk was enthused. He said now things are moving. We know we'll be doing that next transplant. No dates yet, but I don't need dates right now. Just keep up the treadmill and all the dang pills. Someone suggested I go home and have a martini to celebrate. I suggested some gin in that tonic water. But I'm maintaining my decorum and the volume in the gin bottle.
I go in tomorrow, then friday and Sunday so that I can have Saturday off for the big wedding. I was not enthused about being a bridesmaid at my age, but I'm all over it now. I'm really looking forward to that outing.
Cathi
Sunday, May 17, 2009
Looking ahead
I saw Dr. Aljitawi on Thursday and he was full of ideas and plans. He ordered a collection of blood tests to more specifically look at what is going on with my liver. I have a CT Scan of my lungs on Monday, a bone marrow biopsy on Friday (before the Vidaza starts again on Memorial Day Monday.) We'll look at all that information and see where we are.
The liver tests are back and show my Ferritin (iron) levels at 2000. Normal is 200 or less. So from now on when I get blood I will also get a chelating agent that extracts Ferritin from the system. This agent or chelator has to go in slowly...so much per hour according to your weight. So it could take as long as 8 hours. The plan is to start it at the clinic and then go home with a pump the way I used to do for Potassium. But the first time I will have to hang around for several hours so we can make sure there are no side effects.
If the CT Scan shows enough improvement I may be able to switch to an oral anti-fungal drug and then visit the clinic every other day. A major lifestyle change!
He said the Vidaza often takes 3-4 rounds to show results and I didn't get details of what those results are. I just assumed it was working to keep the MDS in remission because I feel so good. So 4 rounds of Vidaza will put me at about the first of July and the 1 year anniversary of this odyssey.
But the main thing is that I'm feeling good. Yesterday I did 20 minutes on the treadmill at a faster pace with some inclines thrown in for good measure. I did learn more about operating the treadmill, but not surprisingly, I could not figure out how to play my ipod on the dang thing. No matter how many times I read the instructions. So I trudged along with my headphones and was happy enough. Books on tape. A Dick Francis mystery. Anybody out there read Dick Francis? He's an English bloke, used to be a horse jockey, and writes prodigiously. Mysteries set around horse racing. Well written and totally enjoyable. His son is co-writing with him now so I reckon we'll have jockey mysteries for years to come.
So, feeling good. That means I am keeping busier though I cannot report any "projects accomplished." Mark and Conor both visited this past week, 1 night each. They both went with me to the clinic the next morning, causing a buzz among the nurses. "Is that the one......?"
Nurse practitioner Julie told me to drink Tonic Water and see if it makes a difference to tingling in my feet. The feet tingle from the chemo. It started with my toes and is creeping up my feet, almost to my heels now. Sometimes it goes away post chemo, and sometimes it doesn't. I've had it before and it went away. I've also had it in my fingers and it didn't happen with my fingers this time so that's a good thing. I keep trying to imagine water skiing with tingling feet. Might have to get a ski with a closed in shoe...no open toe for rushing water.
So far the tonic water hasn't made a difference. I'm wondering if it's because there is no gin with it. Don't you need gin to activate the quinine or something? (Feeling better means I want more freedom!)
Plans are for Harrison and family to visit in June for a wedding here in KC. I can't wait to get my hands on that little guy again!
Cathi
The liver tests are back and show my Ferritin (iron) levels at 2000. Normal is 200 or less. So from now on when I get blood I will also get a chelating agent that extracts Ferritin from the system. This agent or chelator has to go in slowly...so much per hour according to your weight. So it could take as long as 8 hours. The plan is to start it at the clinic and then go home with a pump the way I used to do for Potassium. But the first time I will have to hang around for several hours so we can make sure there are no side effects.
If the CT Scan shows enough improvement I may be able to switch to an oral anti-fungal drug and then visit the clinic every other day. A major lifestyle change!
He said the Vidaza often takes 3-4 rounds to show results and I didn't get details of what those results are. I just assumed it was working to keep the MDS in remission because I feel so good. So 4 rounds of Vidaza will put me at about the first of July and the 1 year anniversary of this odyssey.
But the main thing is that I'm feeling good. Yesterday I did 20 minutes on the treadmill at a faster pace with some inclines thrown in for good measure. I did learn more about operating the treadmill, but not surprisingly, I could not figure out how to play my ipod on the dang thing. No matter how many times I read the instructions. So I trudged along with my headphones and was happy enough. Books on tape. A Dick Francis mystery. Anybody out there read Dick Francis? He's an English bloke, used to be a horse jockey, and writes prodigiously. Mysteries set around horse racing. Well written and totally enjoyable. His son is co-writing with him now so I reckon we'll have jockey mysteries for years to come.
So, feeling good. That means I am keeping busier though I cannot report any "projects accomplished." Mark and Conor both visited this past week, 1 night each. They both went with me to the clinic the next morning, causing a buzz among the nurses. "Is that the one......?"
Nurse practitioner Julie told me to drink Tonic Water and see if it makes a difference to tingling in my feet. The feet tingle from the chemo. It started with my toes and is creeping up my feet, almost to my heels now. Sometimes it goes away post chemo, and sometimes it doesn't. I've had it before and it went away. I've also had it in my fingers and it didn't happen with my fingers this time so that's a good thing. I keep trying to imagine water skiing with tingling feet. Might have to get a ski with a closed in shoe...no open toe for rushing water.
So far the tonic water hasn't made a difference. I'm wondering if it's because there is no gin with it. Don't you need gin to activate the quinine or something? (Feeling better means I want more freedom!)
Plans are for Harrison and family to visit in June for a wedding here in KC. I can't wait to get my hands on that little guy again!
Cathi
Monday, May 11, 2009
More of the same
The better I feel, the more I chafe at this restricted lifestyle. I have lots of energy (relatively) feel good, and feel isolated. Which of course I am.
I learned at the clinic today that they won't be stopping the Ambizone any time soon. I'll be making daily clinic visits for much longer. Ambizone treatments until the pneumonia resolves either into scar tissue (and the docs deem it scar tissue) or leaves my lung completely clear. I love the people at the clinic, I really do.
Today the clinic was an absolute zoo. I was there for an hour before I got into a room and then it was way down the hall in the exam area of the BMT area. Altogether I was there for 6 hours getting Ambizone and platelets. I got platelets yesterday also. And I got blood yesterday. I got blood and platelets both on Friday.
So I think that even if I wasn't getting Ambizone, I would be visiting the clinic often. Or perhaps the reason for the hemoglobin and platelet counts bobbling around is the Ambizone and if I wasn't getting it I wouldn't need blood products so often.
As long as I am halfway cheerful when I get to the clinic, it's usually a pleasant experience. (If I am bumming, the nurses tend to bum with me.) The nurses are kind enough to laugh at my jokes. Some of them talk to me and we have become friends. According to their scale, I require a lot of attention. Several changes of stuff hanging from the IV pole. They don't count my frequent requests for ice water as attention. The doctors stop and talk to me in the hall as do the nurse practitioners. They are all excited about me being in Lisa's wedding May 23rd.
Today Dr. Aljitawi stopped in the hall and said "so you're coming by yourself to the clinic these days?" I told him yes, even though I got scolded one time, I told them he had given me permission to drive. He gave a thumbs up sign and said "this is a good thing. I like it." I like it too.
I had a lovely mothers day yesterday. A fast visit to the clinic (4 hours for Ambizone, blood and platelets!), a tasty dinner grilled by my sister, Janice, and a satisfying webcam visit with my grandson. Harrison is old enough now to attend to the screen when I talk and we play little baby games like peekaboo and pat-a-cake. Conor sent some new photos and I will try to figure out how to upload one this week.
Graduation announcements are arriving in my mailbox. My favorite children are growing up so suddenly. I am sending folks out for cards and gifts and wishing I could be at the celebration parties. But I feel good and for this I am grateful. I will just keep doing the next thing that's indicated. All signs point to an ultimately positive outcome, we just don't know when it will be.
Cathi
I learned at the clinic today that they won't be stopping the Ambizone any time soon. I'll be making daily clinic visits for much longer. Ambizone treatments until the pneumonia resolves either into scar tissue (and the docs deem it scar tissue) or leaves my lung completely clear. I love the people at the clinic, I really do.
Today the clinic was an absolute zoo. I was there for an hour before I got into a room and then it was way down the hall in the exam area of the BMT area. Altogether I was there for 6 hours getting Ambizone and platelets. I got platelets yesterday also. And I got blood yesterday. I got blood and platelets both on Friday.
So I think that even if I wasn't getting Ambizone, I would be visiting the clinic often. Or perhaps the reason for the hemoglobin and platelet counts bobbling around is the Ambizone and if I wasn't getting it I wouldn't need blood products so often.
As long as I am halfway cheerful when I get to the clinic, it's usually a pleasant experience. (If I am bumming, the nurses tend to bum with me.) The nurses are kind enough to laugh at my jokes. Some of them talk to me and we have become friends. According to their scale, I require a lot of attention. Several changes of stuff hanging from the IV pole. They don't count my frequent requests for ice water as attention. The doctors stop and talk to me in the hall as do the nurse practitioners. They are all excited about me being in Lisa's wedding May 23rd.
Today Dr. Aljitawi stopped in the hall and said "so you're coming by yourself to the clinic these days?" I told him yes, even though I got scolded one time, I told them he had given me permission to drive. He gave a thumbs up sign and said "this is a good thing. I like it." I like it too.
I had a lovely mothers day yesterday. A fast visit to the clinic (4 hours for Ambizone, blood and platelets!), a tasty dinner grilled by my sister, Janice, and a satisfying webcam visit with my grandson. Harrison is old enough now to attend to the screen when I talk and we play little baby games like peekaboo and pat-a-cake. Conor sent some new photos and I will try to figure out how to upload one this week.
Graduation announcements are arriving in my mailbox. My favorite children are growing up so suddenly. I am sending folks out for cards and gifts and wishing I could be at the celebration parties. But I feel good and for this I am grateful. I will just keep doing the next thing that's indicated. All signs point to an ultimately positive outcome, we just don't know when it will be.
Cathi
Wednesday, May 6, 2009
More Ambizone.
Pink hair and a new diet. What great ideas! Even nice to hear from Hayward on the sandwiches. The sandwiches were the only thing I could think of that meets the dual requirements of a neutropenic and dairy free diet (using non-dairy cheese.) But one of the nurses sat down with me this week and made some suggestions, mostly making use of the kitchen facilities here at the clinic that I wasn't aware of. So today I have vegetable soup in one of those heat and eat bowls.
The pink hair I haven't tried yet. Since I can't shop in a store I need to send someone to make that purchase for me. But in the meantime, I'm aiming to be a bridesmaid in Lisa's wedding May 23rd. I have a lovely dress and something of a mullet hair style. Need to get that back part trimmed off for sure. The folks at the clinic are working with me to make sure I get to be in the wedding. I'll be able to walk down the aisle and stand for pictures. Then clamp on the mask and escape. Oh, and the dress I'm wearing is brown....so maybe blue hair?
I'm still having trouble getting motivated but I have a list of things to do and I'm trying to knock them down one by one. Janet sent me a cross stitch bookmark. Harking back to the 80s I think. But I am going to tackle it. And a few other things.
I had a liver scan last week and it was "normal" at least in appearance. The liver counts are high from the Ambizone and from transfusions. Iron from the transfusions accumulates in my liver and it's overwhelmed at the moment. But it is not enlarged; this is good news.
The Ambizone has been ordered for 2 more weeks. I think there is a bone marrow biopsy coming up in that time. But health wise, I feel pretty good. Just need a swift kick in the rear I think.
Cathi
The pink hair I haven't tried yet. Since I can't shop in a store I need to send someone to make that purchase for me. But in the meantime, I'm aiming to be a bridesmaid in Lisa's wedding May 23rd. I have a lovely dress and something of a mullet hair style. Need to get that back part trimmed off for sure. The folks at the clinic are working with me to make sure I get to be in the wedding. I'll be able to walk down the aisle and stand for pictures. Then clamp on the mask and escape. Oh, and the dress I'm wearing is brown....so maybe blue hair?
I'm still having trouble getting motivated but I have a list of things to do and I'm trying to knock them down one by one. Janet sent me a cross stitch bookmark. Harking back to the 80s I think. But I am going to tackle it. And a few other things.
I had a liver scan last week and it was "normal" at least in appearance. The liver counts are high from the Ambizone and from transfusions. Iron from the transfusions accumulates in my liver and it's overwhelmed at the moment. But it is not enlarged; this is good news.
The Ambizone has been ordered for 2 more weeks. I think there is a bone marrow biopsy coming up in that time. But health wise, I feel pretty good. Just need a swift kick in the rear I think.
Cathi
Saturday, May 2, 2009
Just Shoot Me!
I am so tired of this routine.
I'm tired of spending every day at the clinic but I really hate eating a sandwich for lunch every day. A meat and cheese sandwich. Nothing interesting like lettuce or pickles or tomatoes.
I enjoy the home baked cookies and brownies and muffins. Lunch is at the clinic every day....no way around it.
I'm not really blue or depressed. Maybe I'm just ready for a change. Something to change. I'm feeling kind of useless.
My belly is very sore from the Vidaza (chemo) shots. I haven't hurled in well over a week. Still hitting the treadmill at least once a day. I'm sleeping pretty good. I have plenty of curly hair.
And that's the brief update for Saturday.
I'm tired of spending every day at the clinic but I really hate eating a sandwich for lunch every day. A meat and cheese sandwich. Nothing interesting like lettuce or pickles or tomatoes.
I enjoy the home baked cookies and brownies and muffins. Lunch is at the clinic every day....no way around it.
I'm not really blue or depressed. Maybe I'm just ready for a change. Something to change. I'm feeling kind of useless.
My belly is very sore from the Vidaza (chemo) shots. I haven't hurled in well over a week. Still hitting the treadmill at least once a day. I'm sleeping pretty good. I have plenty of curly hair.
And that's the brief update for Saturday.
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