Two bits is more than I paid for my first post treatment haircut today. Jodi Hanna who has done my hair for years found an appointment for me this morning; Monday of Christmas week! And then she didn't charge me for the visit. Thanks Jodi!
I wanted her to tidy up the back and show me what I could do with it. I explained that when I put gel on it and try to spike it, it all points to the side. As if a conehead was leaning on the arm of the makeup chair so on stage the cone tipped. Jodi said I looked great, and I am probably doing the best thing with my hair right now. I had an appointment with Jodi for August 4th to change the style. This was the makeup visit but the style has already changed.
I'm sorry I don't have a photo with this post, but you would not see much difference. Because I'm unwilling to post a picture of the back of my neck.
The other exciting thing that happened today is the clinic called to schedule my 100 day checkup. (Today is day 88 or 89.) I go in January 6th for "labs and a bone marrow biopsy," then show up on the 19th for the results. I put that in quotes because that is what the tech said but I'm not sure what that means. I have labs every time I go to the clinic. Sometimes it's 3 tubes of blood, other times 13. I think when I was getting ready for the transplant there were about 40. Really! I wonder how many there will be for the follow up.
A scout family has offered to clean my house and move me on Saturday the 27th. They promised to bring their suburban which is overkill for a Wii, a box of books and a few clothes. Perhaps I will get a suburbanful of Christmas presents between now and then. Watch the streets for the Curfman Magic Carpet Moving Suburban.
cm
Monday, December 22, 2008
Friday, December 19, 2008
Holiday Commotion
I just finished reading this morning's paper with its announcements of holiday events like the Rockettes and the Nutcracker and the KC Symphony special performances and of course the Martin City Melodrama. The store ads, which are prolific this year, offer great deals and make me wish I could be out in the commotion, complaining as much as any year. I would even go to Toys R Us.....
I have sent my mother and my sisters and my friends out with ads bearing circles to find gifts. I have my business colleague, Marshall, picking up techno things for me. I order items from catalogs and have some direct shipped. There are some stores that I rely on for inexpensive stocking stuffers but you have to see them to know what is right.
No Christmas tree at my own house this year. A very small tree at Mom & Dad's house. I enjoy decorating the tree. I go through my collection of ornaments and remember the places and people and events associated with them.
I will miss the Christmas eve church service with the children performing. I used to dream of seeing my own children in these events but they adamantly refused to participate. I sighed. Then remembered that I had been tearing up with pride for years at these programs before my kids were even eligible and figured I could keep on enjoying them with my kids by my side in the pew instead of posed about the church in costumes.
And I did not make my traditional batch of kahlua this year. My girlfriend Patty, taught me how to make it and we toasted the start of every season with a round of White Russians.
But there are some really great things about this Christmas.
Mom has all the purple Santa ornaments on the little tree and I try to remember where I found them, but mostly I marvel that I found so many of them. I have time to send lots of cards and to make gifts. I do not wish that my wrapping skills were more spectacular.
I can browse magazines for recipes. I can shop Mom's cupboards for table setting ideas. When the table is set for only three or four, there is lots of room for centerpieces and bread plates and even place cards. This is an unaccustomed luxury: I am usually figuring out how to get a single plate and glass on the table for each person along with food for a crowd. It's a novelty to have only one serving bowl for each item, only one set of salt & pepper shakers to fill.
My friends are making an extra effort to visit and bring little gifts and collect my gift for them. I have managed to find gifts I am happy about for everyone on my list. I can eat all the baked items and traditional Christmas candy without feeling guilty. The clinic LIKES it when I gain weight.
This year's detour was a bigger curve ball than I've faced before. But I have learned through marriage and divorce, moving and children, loved ones here and not, that dipping and swaying are easier ways to deal with life's ups and downs than stubborn adherence to the way it should be.
I try to figure out what is important to me about each tradition. And I know it is the surprise of gifts under the tree. It is the cooking and gathering of family on a day when people are willing to leave their issues at the door. It is the ritual of the church service and the feelings that traditional music inspires. So while I really would like to get out of the house, I'm confident my Christmas will meet my holiday expectations.
Cathi
I have sent my mother and my sisters and my friends out with ads bearing circles to find gifts. I have my business colleague, Marshall, picking up techno things for me. I order items from catalogs and have some direct shipped. There are some stores that I rely on for inexpensive stocking stuffers but you have to see them to know what is right.
No Christmas tree at my own house this year. A very small tree at Mom & Dad's house. I enjoy decorating the tree. I go through my collection of ornaments and remember the places and people and events associated with them.
I will miss the Christmas eve church service with the children performing. I used to dream of seeing my own children in these events but they adamantly refused to participate. I sighed. Then remembered that I had been tearing up with pride for years at these programs before my kids were even eligible and figured I could keep on enjoying them with my kids by my side in the pew instead of posed about the church in costumes.
And I did not make my traditional batch of kahlua this year. My girlfriend Patty, taught me how to make it and we toasted the start of every season with a round of White Russians.
But there are some really great things about this Christmas.
Mom has all the purple Santa ornaments on the little tree and I try to remember where I found them, but mostly I marvel that I found so many of them. I have time to send lots of cards and to make gifts. I do not wish that my wrapping skills were more spectacular.
I can browse magazines for recipes. I can shop Mom's cupboards for table setting ideas. When the table is set for only three or four, there is lots of room for centerpieces and bread plates and even place cards. This is an unaccustomed luxury: I am usually figuring out how to get a single plate and glass on the table for each person along with food for a crowd. It's a novelty to have only one serving bowl for each item, only one set of salt & pepper shakers to fill.
My friends are making an extra effort to visit and bring little gifts and collect my gift for them. I have managed to find gifts I am happy about for everyone on my list. I can eat all the baked items and traditional Christmas candy without feeling guilty. The clinic LIKES it when I gain weight.
This year's detour was a bigger curve ball than I've faced before. But I have learned through marriage and divorce, moving and children, loved ones here and not, that dipping and swaying are easier ways to deal with life's ups and downs than stubborn adherence to the way it should be.
I try to figure out what is important to me about each tradition. And I know it is the surprise of gifts under the tree. It is the cooking and gathering of family on a day when people are willing to leave their issues at the door. It is the ritual of the church service and the feelings that traditional music inspires. So while I really would like to get out of the house, I'm confident my Christmas will meet my holiday expectations.
Cathi
Wednesday, December 17, 2008
Neither rain nor snow.....
Tuesday morning Sally picked me up at 6:15 so we could make my 7am clinic appointment despite the snow and dicey roads. We tooled along carefully and arrived safely at 7. But none of the staff made it until after 7:30. One tech told me she didn't even realize it was bad out and turned on the TV to check the temperature before she left and discovered her kids were out of school. So I count among my blessings not having to worry about school closings any more.
I saw Dr. Male, the fellowship doctor. She didn't remember me. I think that's a good thing because I think it's because I'm doing so well nobody is worrying about me. She performed the "assessment" which is a series of questions about side effects then listening to my lungs and heart, checking for swelling or tenderness anywhere. She also reported that the CT Scan of my lungs last week showed more improvement. She explained that lungs take a very long time to heal completely. And that you always feel much better than your lungs look.
Dr. Abhyankar came in to tell me that my WBC count was down to 1.6, but he didn't know what the neutrophils were yet. I said I hope it's good because Sally and I want to go eat lunch in a restaurant after this. He laughed and said "Take me with you." Ha ha. Not what I was expecting. He's a bit shy, but I'm finding he has a great sense of humor.
Last week I told him I had reread my blog from the summer and that we had a mutual friend, Mitch Hamburg. Until then I had not read Mitch's post on the blog. So I told a couple of scout stories about Mitch, in particular the one about the turkey feather at summer camp. We (Dr. A and I) had some good laughs over that.
At the end of the day, the ANC (absolute neutrophil) was 70%. The Hg was up a little bit. Platelets were up. He said all this bobbling around is good. It means there is action in my bone marrow as Walt's cells try to beat out the last of the Cathi cells.
So good news but of course, no eating in a restaurant. I can have guests though so give me a call if you have any time and interest in this very cold, very busy, holiday season. Things are not coming together for the move back home this week so I guess it's delayed a while longer.
And a final bit of good news, I took the last Prograf pill this morning. Prograf is an anti-rejection drug that I have been taking since the week before the transplant. I was excited about having fewer pills to take, but yesterday I received a prescription for an another antibiotic because my WBC is so low. It is 3 pills twice a day. So get rid of one, gain three. I think I'll be happy they are three small pills. And that I can eat some takeout food. And that I can have guests.
Cathi
I saw Dr. Male, the fellowship doctor. She didn't remember me. I think that's a good thing because I think it's because I'm doing so well nobody is worrying about me. She performed the "assessment" which is a series of questions about side effects then listening to my lungs and heart, checking for swelling or tenderness anywhere. She also reported that the CT Scan of my lungs last week showed more improvement. She explained that lungs take a very long time to heal completely. And that you always feel much better than your lungs look.
Dr. Abhyankar came in to tell me that my WBC count was down to 1.6, but he didn't know what the neutrophils were yet. I said I hope it's good because Sally and I want to go eat lunch in a restaurant after this. He laughed and said "Take me with you." Ha ha. Not what I was expecting. He's a bit shy, but I'm finding he has a great sense of humor.
Last week I told him I had reread my blog from the summer and that we had a mutual friend, Mitch Hamburg. Until then I had not read Mitch's post on the blog. So I told a couple of scout stories about Mitch, in particular the one about the turkey feather at summer camp. We (Dr. A and I) had some good laughs over that.
At the end of the day, the ANC (absolute neutrophil) was 70%. The Hg was up a little bit. Platelets were up. He said all this bobbling around is good. It means there is action in my bone marrow as Walt's cells try to beat out the last of the Cathi cells.
So good news but of course, no eating in a restaurant. I can have guests though so give me a call if you have any time and interest in this very cold, very busy, holiday season. Things are not coming together for the move back home this week so I guess it's delayed a while longer.
And a final bit of good news, I took the last Prograf pill this morning. Prograf is an anti-rejection drug that I have been taking since the week before the transplant. I was excited about having fewer pills to take, but yesterday I received a prescription for an another antibiotic because my WBC is so low. It is 3 pills twice a day. So get rid of one, gain three. I think I'll be happy they are three small pills. And that I can eat some takeout food. And that I can have guests.
Cathi
Saturday, December 13, 2008
Another dog story
It’s difficult to photograph a black dog, even one as anxious to please as Hayward. Here he is in the front yard of the lake house, which might be his favorite place. He loves to jump off the dock and fetch anything out of the water. A ball, a toy, a stick, a duck….. The first time I took him to the lake we discovered this affection of his. I threw a ball off the dock. He jumped in the water and collected the ball, swam to shore, jumped up the three foot sea wall and trotted back down to the dock to do it again. I threw the ball for hours, Dad threw the ball for hours, the neighbors threw the ball for hours. We were all having fun.
We came home and slept. When I roused Hayward to go get the paper the next morning, he limped out and limped back. He didn’t eat much, he wasn’t interested in fetching a stick, just not his usual self. After three days of this, I took him to the vet. I was worried he had giardia, an infection pets get from lake water. She looked him over carefully then told me to take him home and give him enteric aspirin. He was sore from all the fun at the lake. Since then we restrict the fetching at the lake to 5 throws at a time. He knows this. On the 5th throw, he collects the ball, exits the lake and trots back up to the house.
I’m feeling wonderful since Thursday in body and mind. The news of the high donor chimerism brought my total recovery much closer in my head. I’m finishing up my Christmas projects and making plans to move back home. Guests will still be limited to one or two at a time, and I can’t go out. I'll need someone to do laundry for me because the washer/dryer are in the basement and that is off limits still. And someone else will be grocery shopping for me. But I just think it’s time for me to start acting well. And being in my own house is the next step.
We came home and slept. When I roused Hayward to go get the paper the next morning, he limped out and limped back. He didn’t eat much, he wasn’t interested in fetching a stick, just not his usual self. After three days of this, I took him to the vet. I was worried he had giardia, an infection pets get from lake water. She looked him over carefully then told me to take him home and give him enteric aspirin. He was sore from all the fun at the lake. Since then we restrict the fetching at the lake to 5 throws at a time. He knows this. On the 5th throw, he collects the ball, exits the lake and trots back up to the house.
I’m feeling wonderful since Thursday in body and mind. The news of the high donor chimerism brought my total recovery much closer in my head. I’m finishing up my Christmas projects and making plans to move back home. Guests will still be limited to one or two at a time, and I can’t go out. I'll need someone to do laundry for me because the washer/dryer are in the basement and that is off limits still. And someone else will be grocery shopping for me. But I just think it’s time for me to start acting well. And being in my own house is the next step.
CM
Thursday, December 11, 2008
Tis the season to be jolly!
I dutifully reported to the clinic at 7am today, accompanied by my sister Mari. And Dr. Abhyankar reported to me that my bone marrow is actually 90.6% donor. What Mary was working from Monday was the blood. (Remember Dr. Ganguly ordered both tests on the same day.)
Dr. A said that the blood is usually behind the marrow.... he was clearly pleased with the results. He believes that as I continue to taper off the transplant drugs that the donor cells will take over the rest of the marrow. If a booster is necessary, they will do that after the 100 days. So I need the bone marrow biopsy after 100 days to show more than 90.6% donor. It just needs to be higher than the last one.
My blood counts were up. The WBC was 1.9, but the ANC was .7 meaning I can celebrate with a salad! I get a printout of my blood work each time I visit the clinic. Two pages, one CBC and one chemistry each with 12 or 15 line items. (you can look it up, I don't know what CBC stands for.) When I started this process every single line had an (L) or (H) beside it for low or high compared to normal. Today there are only 5 or 7 (L)s on the list. Most of them are beside the cell counts that I chronicle over and over.
Mari and I danced and cried all the way out of the clinic. We got in the car and shouted and celebrated and called my family all the way to Starbucks for a celebratory coffee. This is the greatest news!
This purple christmas tree appeared on the deck at Mom & Dad's after dark one night. Someone set it up, plugged it in then thumped on the window on the way out. I thought it looked especially pretty with snow on it this week.
So altogether now! let's boost those XY cells from my donor brother over the last 10% of my puny cells. I am forever grateful to the folks who are carrying me through this adventure.
Tuesday, December 9, 2008
Chimerism (ki-mer-ism)
Another Monday clinic visit. I spent 5 hours at the clinic yesterday and all that happened is they drew blood and gave me a Neupogen shot. Sometimes it's like that. There seemed to be a serious staff shortage yesterday. No doctors at all, one nurse and one nurse practitioner. Every tech was there however. I asked where everyone was and got a short, frustrated answer, "OUT!"
Mary Burkhardt, NP, reported the chimerism (ratio of donor cells in the bone marrow) is 56% donor and 44% recipient. This is from the bone marrow rather than the blood which I reported a few weeks ago. Everyone would like that number to be 100% at this stage of the game. A likely next step is a booster of lymphocytes (T-cells) from Walt's original donation. (Remember they froze enough stem cells for a second transplant.) This 56/44 ratio is the likely reason that the WBC persist in remaining low.
I have broken with my practice of not researching and looked up some of this stuff. Neutrophils are the portion of white blood cells that are actually capable of fighting infections. Thus the emphasis on the ANC or absolute neutrophil count. No matter what the WBC count is, the ANC must be more than 5% to be non-neutropenic. Mine is currently 3%.
The booster of T-cells is a not uncommon event in this process and often leads to a full donor chimerism in the bone marrow.
Personally, I feel good. I am chafing more every day at the restrictions. I want to start living like a well person. I am considering breaking some of the rules, while still not exposing myself to any risks. Sometimes when I ask about more freedom the answer is "no" but nobody has any real reasons for the restrictions. "Just because" is soothing me about like it soothes a 3 yr old who has been denied an afternoon cookie.
Hayward is on his way to Oklahoma City for a few weeks. He is recovering nicely. He had an infection that dogs get from the urine of wild animals, e.g. the raccoon that occasionally haunts my back yard. Fortunately it responds to antibiotics and is relatively easy to cure.
Daisy, my more independent dog, will be living with Mark in Manhattan for those weeks. Daisy thinks having a raccoon in the back yard is great fun. She can spend hours under a tree traumatizing the creature. If there is no raccoon, a squirrel makes good prey. I had my roof replaced a couple of years ago and the dogs were kennelled for the duration. The neighbors remarked on the return of the squirrels to their yards when Daisy was absent. I am very grateful she ran off the chipmunks wreaking havoc on the step from the house to the deck where they lived. I hope they don't return while she is on vacation.
I return to the clinic on Thursday. Hopefully I will see a doctor and we can establish a plan. However, staffing is on Mondays and it's very possible they will not have pow-wowed to decide the next steps for patient Cathi Maynard.
Mary Burkhardt, NP, reported the chimerism (ratio of donor cells in the bone marrow) is 56% donor and 44% recipient. This is from the bone marrow rather than the blood which I reported a few weeks ago. Everyone would like that number to be 100% at this stage of the game. A likely next step is a booster of lymphocytes (T-cells) from Walt's original donation. (Remember they froze enough stem cells for a second transplant.) This 56/44 ratio is the likely reason that the WBC persist in remaining low.
I have broken with my practice of not researching and looked up some of this stuff. Neutrophils are the portion of white blood cells that are actually capable of fighting infections. Thus the emphasis on the ANC or absolute neutrophil count. No matter what the WBC count is, the ANC must be more than 5% to be non-neutropenic. Mine is currently 3%.
The booster of T-cells is a not uncommon event in this process and often leads to a full donor chimerism in the bone marrow.
Personally, I feel good. I am chafing more every day at the restrictions. I want to start living like a well person. I am considering breaking some of the rules, while still not exposing myself to any risks. Sometimes when I ask about more freedom the answer is "no" but nobody has any real reasons for the restrictions. "Just because" is soothing me about like it soothes a 3 yr old who has been denied an afternoon cookie.
Hayward is on his way to Oklahoma City for a few weeks. He is recovering nicely. He had an infection that dogs get from the urine of wild animals, e.g. the raccoon that occasionally haunts my back yard. Fortunately it responds to antibiotics and is relatively easy to cure.
Daisy, my more independent dog, will be living with Mark in Manhattan for those weeks. Daisy thinks having a raccoon in the back yard is great fun. She can spend hours under a tree traumatizing the creature. If there is no raccoon, a squirrel makes good prey. I had my roof replaced a couple of years ago and the dogs were kennelled for the duration. The neighbors remarked on the return of the squirrels to their yards when Daisy was absent. I am very grateful she ran off the chipmunks wreaking havoc on the step from the house to the deck where they lived. I hope they don't return while she is on vacation.
I return to the clinic on Thursday. Hopefully I will see a doctor and we can establish a plan. However, staffing is on Mondays and it's very possible they will not have pow-wowed to decide the next steps for patient Cathi Maynard.
Saturday, December 6, 2008
Saturday - return to the clinic
I went to the clinic this morning, accompanied by Charlene. They drew blood and gave me another Neupogen shot. The WBC count was up .1 to 1.2. Other counts were close to what they have been. Still no news on the ratio of donor to donee bone marrow. I hope I get that on Monday.
Mark is coming to town today from Manhattan. He was here for Thanksgiving weekend, all 4 days. He took me "shopping" which looks like this: I give him a list and as many details as I think he will need. He goes into the store with my credit card and returns to me in the car with the items on the list. I send him back in to return the ones that don't work. Something happened to that return trip though and Mom ended up doing some returns this week. My Christmas shopping is progressing thanks to on-line retailers, and a generous family willing to strike out for the stores with my pictures and instructions. Mark did a great job buying the makeup items I needed!
Mom and Dad are having their annual Christmas function with their grandchildren tonight. It's a little different this year because of me, the houseguest with all the restrictions. Usually the kids come over and decorate the Christmas tree, then eat chili. This year they are going to the luminary walk at the Overland Park Arboretum and then eating chili at a restaurant in that neighborhood. Charlene and I will be watching the Big 12 championship game and cheering for OU.
A year ago, Charlene turned 50 and she collected a group of 9 women to join her in Las Vegas to celebrate. We had a fine time seeing the town. A niece on the trip knew her way around all the clubs and we had a look at all of them. We danced and shopped and took a dancing class which was a highlight of the trip. (I'm not getting too specific about the class to protect the innocent.) Since the trip said niece has had a baby, one of Charlene's sisters was diagnosed with cancer and I have been diagnosed with cancer. So we've become an informal support group for each other, always looking forward to another trip to Vegas.
Hayward is better every day and is now looking forward to going home with Charlene for a few weeks. Charlene's daughter, Hilary, is very excited about the houseguest. Hilary is a student at Baker University and last year during the January term she took a sewing class. The assignment was to make matching outfits for you and a pet, so Hilary chose to make a costume for Hayward. When the day of the style show arrived, the weather was 22 degrees and I walked Hayward for 2 miles to make sure he was relaxed for the show. He and Hilary were a great pair in their black/silver/pink outfits and Hayward was a model dog, too tired to club anyone to pieces with his tail while playing with the other dogs and cats in the show.
I go to the clinic again on Monday and will see a doctor who can explain the BMB results. My sister Janice characterized this up and down time thusly. "This is such a crazy, extreme process that pretty much anything that happens is the way it goes." And so it goes.
Cathi
Mark is coming to town today from Manhattan. He was here for Thanksgiving weekend, all 4 days. He took me "shopping" which looks like this: I give him a list and as many details as I think he will need. He goes into the store with my credit card and returns to me in the car with the items on the list. I send him back in to return the ones that don't work. Something happened to that return trip though and Mom ended up doing some returns this week. My Christmas shopping is progressing thanks to on-line retailers, and a generous family willing to strike out for the stores with my pictures and instructions. Mark did a great job buying the makeup items I needed!
Mom and Dad are having their annual Christmas function with their grandchildren tonight. It's a little different this year because of me, the houseguest with all the restrictions. Usually the kids come over and decorate the Christmas tree, then eat chili. This year they are going to the luminary walk at the Overland Park Arboretum and then eating chili at a restaurant in that neighborhood. Charlene and I will be watching the Big 12 championship game and cheering for OU.
A year ago, Charlene turned 50 and she collected a group of 9 women to join her in Las Vegas to celebrate. We had a fine time seeing the town. A niece on the trip knew her way around all the clubs and we had a look at all of them. We danced and shopped and took a dancing class which was a highlight of the trip. (I'm not getting too specific about the class to protect the innocent.) Since the trip said niece has had a baby, one of Charlene's sisters was diagnosed with cancer and I have been diagnosed with cancer. So we've become an informal support group for each other, always looking forward to another trip to Vegas.
Hayward is better every day and is now looking forward to going home with Charlene for a few weeks. Charlene's daughter, Hilary, is very excited about the houseguest. Hilary is a student at Baker University and last year during the January term she took a sewing class. The assignment was to make matching outfits for you and a pet, so Hilary chose to make a costume for Hayward. When the day of the style show arrived, the weather was 22 degrees and I walked Hayward for 2 miles to make sure he was relaxed for the show. He and Hilary were a great pair in their black/silver/pink outfits and Hayward was a model dog, too tired to club anyone to pieces with his tail while playing with the other dogs and cats in the show.
I go to the clinic again on Monday and will see a doctor who can explain the BMB results. My sister Janice characterized this up and down time thusly. "This is such a crazy, extreme process that pretty much anything that happens is the way it goes." And so it goes.
Cathi
Thursday, December 4, 2008
Down Again. Rats.
"Rats" to quote Charlie Brown.
Dr. Abhyankar was my physician this morning. The white blood cells were down again (1.1), Neutrophils were even lower (2%), Hg down to 10.2 (ha ha I used think that was way high) and Platelets down to 150 something (which I used to think was high.) For someone who skated along at just under normal platelets and WBC, and very low Hg for 10-12 years, I'm sure irritated today that these counts are down from Tuesday.
A little perspective makes it kind of funny. I used to be so pleased to have a Hg of 9.2 and here I am complaining when it's a whole point higher than that.
So I'm being very careful now. Washing my hands for longer, not eating things right out of the pantry (I have reverted to childhood habits living with my parents again,) and nothing fresh at all, even washed.
The checks for infection or viruses came back negative. This is good. The liver enzymes are comfortably in the middle of the normal range. This is good. And I still feel great.
So Dr. A changed my meds again and I go back Saturday to check my blood. They still did not have the Walt/Cathi ratio from the bone marrow biopsy. I have been taking an antibiotic since about 21 days post transplant that is specifically to prevent pneumonia. Every transplant patient takes it, not just me. Dr. Ganguly changed the actual drug once and it changed again today. It's a little more interesting than just taking a different pill though. Today I had to sit in a tent and breathe the medicine for about half an hour. It wasn't uncomfortable but it tastes bitter. I will do this every 3 to 4 weeks. He reduced the antiviral medication I am taking by half. And gave me another neupogen shot.
The possible reasons for this slowdown are quite a list. None of them sound very serious. It's more a case of not great news than bad news. My report is colored by my frustration. When I look at the big picture, that I have an entirely new blood making factory, (leaving out that it came from my brother) these little bumps in the road don't seem so large.
Hayward, on the other hand, is thriving. He has been eating his food again, enjoying a rawhide strip, and has taken a couple of short walks. He is still weak, and the walks are actual walks rather than the usual drag. I have some friends from Arkansas City who are regular house guests and Mark often gets up early and takes the dogs for a walk. When I get up and ask if he's been out, the answer is something like "yeah, we went for a drag...." Hayward will heel and walk right beside me anywhere when I train him. But put a leash on him and he starts pulling immediately. Mark and his sons like to wrestle with Hayward and play with a pull toy. One time son Andy's then girlfriend (now wife) was along and she might not weigh as much as Hayward. She wanted to play so grabbed the other end of the pull toy. Hayward started pulling and Melissa and the ottoman bounced all the way across the room!
My sister Mari is here for a couple of days. and my friend Charlene is coming this weekend. Giving Mom a break from the clinic visits. I think Mom would rather clean the toilets than take me to the clinic.
So to sum up, things are progressing.
Cathi
Dr. Abhyankar was my physician this morning. The white blood cells were down again (1.1), Neutrophils were even lower (2%), Hg down to 10.2 (ha ha I used think that was way high) and Platelets down to 150 something (which I used to think was high.) For someone who skated along at just under normal platelets and WBC, and very low Hg for 10-12 years, I'm sure irritated today that these counts are down from Tuesday.
A little perspective makes it kind of funny. I used to be so pleased to have a Hg of 9.2 and here I am complaining when it's a whole point higher than that.
So I'm being very careful now. Washing my hands for longer, not eating things right out of the pantry (I have reverted to childhood habits living with my parents again,) and nothing fresh at all, even washed.
The checks for infection or viruses came back negative. This is good. The liver enzymes are comfortably in the middle of the normal range. This is good. And I still feel great.
So Dr. A changed my meds again and I go back Saturday to check my blood. They still did not have the Walt/Cathi ratio from the bone marrow biopsy. I have been taking an antibiotic since about 21 days post transplant that is specifically to prevent pneumonia. Every transplant patient takes it, not just me. Dr. Ganguly changed the actual drug once and it changed again today. It's a little more interesting than just taking a different pill though. Today I had to sit in a tent and breathe the medicine for about half an hour. It wasn't uncomfortable but it tastes bitter. I will do this every 3 to 4 weeks. He reduced the antiviral medication I am taking by half. And gave me another neupogen shot.
The possible reasons for this slowdown are quite a list. None of them sound very serious. It's more a case of not great news than bad news. My report is colored by my frustration. When I look at the big picture, that I have an entirely new blood making factory, (leaving out that it came from my brother) these little bumps in the road don't seem so large.
Hayward, on the other hand, is thriving. He has been eating his food again, enjoying a rawhide strip, and has taken a couple of short walks. He is still weak, and the walks are actual walks rather than the usual drag. I have some friends from Arkansas City who are regular house guests and Mark often gets up early and takes the dogs for a walk. When I get up and ask if he's been out, the answer is something like "yeah, we went for a drag...." Hayward will heel and walk right beside me anywhere when I train him. But put a leash on him and he starts pulling immediately. Mark and his sons like to wrestle with Hayward and play with a pull toy. One time son Andy's then girlfriend (now wife) was along and she might not weigh as much as Hayward. She wanted to play so grabbed the other end of the pull toy. Hayward started pulling and Melissa and the ottoman bounced all the way across the room!
My sister Mari is here for a couple of days. and my friend Charlene is coming this weekend. Giving Mom a break from the clinic visits. I think Mom would rather clean the toilets than take me to the clinic.
So to sum up, things are progressing.
Cathi
Tuesday, December 2, 2008
Tired is one way to ignore the isolation
Last night I ran some utilities on a mail server and stayed up very late. I slept late enough this morning, but have been tired all day. Feeling tired has the effect of diverting my attention from the isolation. I'm not good company when I'm tired. And the things that have to be done take longer so there is less time to think. Right now I'm just about ready to crawl into bed with the crossword puzzle.
The transplant drugs are gradually being tapered away. I like taking fewer pills all the time. The taper is for two different drugs and changes on different days, so I've resorted to consulting the calendar every time I load up the pill dish. It's nice to think that I will not have to refill these two scrips again. They are not the most expensive, but they are the second and third most expensive so I'm happy to be crossing them off the list.
The neupogen shot that I got yesterday should increase the white blood cells. I don't know much about how neupogen works, but it seems to know what it is supposed to do for each individual bloodstream that it hits. I still have a visible rash over most of my body, but it doesn't itch. However, my mouth is more tender which is part of graft vs. host, and means I need to rinse more often with saline water.
Hayward is still taking his pills. He is eating, but only treats. He isn't interested in regular food. I'm not sure whether this is a taste he has acquired, or if something about his food is genuinely distasteful because he is sick. He is 11 years old and he has eaten the same dog food for all of his 11 years. On the other hand, he likes treats a lot. He has chewed a rawhide stick after meals today and that's another improvement.
Hayward is a 95# black Labrador Retriever with a "pork tenderloin" tail that can clear a coffee table in 2 seconds flat, hit the walls so hard the pictures slide crookedly, and bruise your leg while he's expressing how happy he is to see you. Labs are never full, and they look at you with big sad eyes when the food bowl is empty. When Hayward was a puppy I started giving him a small piece of rawhide when he returned the empty food bowl to me. It signaled the end of the food and distracted him. (I guess.) He would take the piece of rawhide and bound to the top of a half flight of stairs. Then he tossed it in the air and caught it, pawed it on the floor and pounced on it. Occasionally he even tossed it down the stairs, then skidded down to catch it before it stopped. This little routine has continued for his whole life.
So you see, when he didn't wag his tail, or want a rawhide chew, we knew he was really feeling bad. Through the years I have marveled at his constitution which has survived eating all sorts of things that are traditionally bad for dogs. One time he ate a 2# box of See's Chocolates, filched from my brother-in-law's suitcase. Another time a dozen Krispy Kreme donuts...leaving the box so untouched, we thought one of the house guests had snuck in when we weren't looking. He is sometimes discriminating, choosing to eat only the strawberry licorice and not the raspberry. Perhaps the funniest event was a large bucket of runts (little fruit shaped, fruit flavored candies) wrapped in Christmas paper under the tree. He ate them all except the bananas.
So hopefully by Thursday, Hayward and I will both have better reports.
Cathi
The transplant drugs are gradually being tapered away. I like taking fewer pills all the time. The taper is for two different drugs and changes on different days, so I've resorted to consulting the calendar every time I load up the pill dish. It's nice to think that I will not have to refill these two scrips again. They are not the most expensive, but they are the second and third most expensive so I'm happy to be crossing them off the list.
The neupogen shot that I got yesterday should increase the white blood cells. I don't know much about how neupogen works, but it seems to know what it is supposed to do for each individual bloodstream that it hits. I still have a visible rash over most of my body, but it doesn't itch. However, my mouth is more tender which is part of graft vs. host, and means I need to rinse more often with saline water.
Hayward is still taking his pills. He is eating, but only treats. He isn't interested in regular food. I'm not sure whether this is a taste he has acquired, or if something about his food is genuinely distasteful because he is sick. He is 11 years old and he has eaten the same dog food for all of his 11 years. On the other hand, he likes treats a lot. He has chewed a rawhide stick after meals today and that's another improvement.
Hayward is a 95# black Labrador Retriever with a "pork tenderloin" tail that can clear a coffee table in 2 seconds flat, hit the walls so hard the pictures slide crookedly, and bruise your leg while he's expressing how happy he is to see you. Labs are never full, and they look at you with big sad eyes when the food bowl is empty. When Hayward was a puppy I started giving him a small piece of rawhide when he returned the empty food bowl to me. It signaled the end of the food and distracted him. (I guess.) He would take the piece of rawhide and bound to the top of a half flight of stairs. Then he tossed it in the air and caught it, pawed it on the floor and pounced on it. Occasionally he even tossed it down the stairs, then skidded down to catch it before it stopped. This little routine has continued for his whole life.
So you see, when he didn't wag his tail, or want a rawhide chew, we knew he was really feeling bad. Through the years I have marveled at his constitution which has survived eating all sorts of things that are traditionally bad for dogs. One time he ate a 2# box of See's Chocolates, filched from my brother-in-law's suitcase. Another time a dozen Krispy Kreme donuts...leaving the box so untouched, we thought one of the house guests had snuck in when we weren't looking. He is sometimes discriminating, choosing to eat only the strawberry licorice and not the raspberry. Perhaps the funniest event was a large bucket of runts (little fruit shaped, fruit flavored candies) wrapped in Christmas paper under the tree. He ate them all except the bananas.
So hopefully by Thursday, Hayward and I will both have better reports.
Cathi
Monday, December 1, 2008
No guests allowed
The bad news from the blood work this morning is that the WBC are still at 1.5 but the neutrophils are only 4%, so no guests. And back to the neutropenic diet.
Rats! I sure thought I had seen the last of that diet. Back to nothing fresh and everything canned or frozen. No fresh fruit, even frozen. No leftovers. Everything well cooked.
The good news is the liver enzymes were normal. Yippee.
Not all the results of the bone marrow biopsy are back yet, but they do know there is no "disease" in it. (Disease in this case means leukemia. I don't know why he didn't just say that.) The rest of the results should be back Thursday.
The Hg was 10.9 and the Platelets 199. These are great, but count for nothing when the Absolute Neutrophil count is .1.
I am feeling a bit discouraged and annoyed at the moment, but I reckon that will pass as I get into my To-Do list today. Or at least I will forget it for a while.
I saw Dr. Aljitawi today and Dr. Male, a new face. Dr. Male is doing a fellowship in oncology, rotating through the different disciplines. I'm not sure how long she will be at the bone marrow transplant clinic, but I liked her. They drew extra blood to check for an infection or virus, then sent me upstairs for a Neupogen shot. We'll see the results on Thursday.
Meanwhile, on other fronts, my pet lab, Hayward, is under the weather. He has seen the vet and now has his own prescription for Amoxycillin. He laid around for 3 days, then seemed to perk up a bit on Saturday night. He is 11 years old, and has had a good, healthy life. However, I really hate the idea of him going when I am away. Dad is keeping a close eye on him, and is in charge of dosing him with the drugs. My dad is very fond of Hayward. You could almost call Dad a dog person, except that he likes dogs that live in someone else's house.
I'm going to have a round of bowling or boxing on my still new Wii, and then tackle the list.
Rats! I sure thought I had seen the last of that diet. Back to nothing fresh and everything canned or frozen. No fresh fruit, even frozen. No leftovers. Everything well cooked.
The good news is the liver enzymes were normal. Yippee.
Not all the results of the bone marrow biopsy are back yet, but they do know there is no "disease" in it. (Disease in this case means leukemia. I don't know why he didn't just say that.) The rest of the results should be back Thursday.
The Hg was 10.9 and the Platelets 199. These are great, but count for nothing when the Absolute Neutrophil count is .1.
I am feeling a bit discouraged and annoyed at the moment, but I reckon that will pass as I get into my To-Do list today. Or at least I will forget it for a while.
I saw Dr. Aljitawi today and Dr. Male, a new face. Dr. Male is doing a fellowship in oncology, rotating through the different disciplines. I'm not sure how long she will be at the bone marrow transplant clinic, but I liked her. They drew extra blood to check for an infection or virus, then sent me upstairs for a Neupogen shot. We'll see the results on Thursday.
Meanwhile, on other fronts, my pet lab, Hayward, is under the weather. He has seen the vet and now has his own prescription for Amoxycillin. He laid around for 3 days, then seemed to perk up a bit on Saturday night. He is 11 years old, and has had a good, healthy life. However, I really hate the idea of him going when I am away. Dad is keeping a close eye on him, and is in charge of dosing him with the drugs. My dad is very fond of Hayward. You could almost call Dad a dog person, except that he likes dogs that live in someone else's house.
I'm going to have a round of bowling or boxing on my still new Wii, and then tackle the list.
Saturday, November 29, 2008
I am grateful for scouting friends
I have spent most of my time being thankful this weekend. A long time ago a friend told me to make a gratitude list with 100 things on it. She suggested this as an antidote to feeling sorry for myself. I started the list with my house, my car, my kids, my job and realized my needs were met. As I continued the list I started listing my friends and my family. It was easy to get to 100 items. If I sat down to list the things I am grateful for today, just my scouting support group would number over 100.
I have been a "hanger-on" in Boy Scout Troop 91 for many years. We define hanger-on as a parent who keeps coming to meetings and activities after his or her son stops coming.
While I was in the hospital I received cards every single day. And every day there was one or two or more from scouts and their families. Since the transplant, the troop has been sending me photos of themselves. Special pictures of members holding signs that say "We miss you." and "Get well." The pictures are of kids and adults [and 2 dogs] and have been the highlight of my weeks.
Thank you Troop 91 Scouts and Scouters!
I have also worked in scouting at the District level and many of those folks' names appear regularly in my email, blog posts and on cards. Some of the best jokes and some of the biggest groaners, but always good for a laugh.
I am especially thankful to the folks who stepped up to help my Venturing Crew when I fell off the radar. Terry Dodson and Bobanne Kalkofen accompanied 4 teenagers to Rocky Mountain High Adventure Base this summer. Mark and Sarah Curfman have taken responsibility for organizing the crew for meetings and monthly activities.
My fellow Wood Badgers in the Owl Patrol and on the 2004 staff have been big boosters. Lots of phone calls and visits (some in the black hole of "they did?") emails, blog posts and cards. It will be a big whoooooooooooooop-ti-do when we gather again.
I'm grateful for all of you. Those who have called, emailed or visited. Those who have prayed, those who have just thought about me. Thank you.
I have been a "hanger-on" in Boy Scout Troop 91 for many years. We define hanger-on as a parent who keeps coming to meetings and activities after his or her son stops coming.
While I was in the hospital I received cards every single day. And every day there was one or two or more from scouts and their families. Since the transplant, the troop has been sending me photos of themselves. Special pictures of members holding signs that say "We miss you." and "Get well." The pictures are of kids and adults [and 2 dogs] and have been the highlight of my weeks.
Thank you Troop 91 Scouts and Scouters!
I have also worked in scouting at the District level and many of those folks' names appear regularly in my email, blog posts and on cards. Some of the best jokes and some of the biggest groaners, but always good for a laugh.
I am especially thankful to the folks who stepped up to help my Venturing Crew when I fell off the radar. Terry Dodson and Bobanne Kalkofen accompanied 4 teenagers to Rocky Mountain High Adventure Base this summer. Mark and Sarah Curfman have taken responsibility for organizing the crew for meetings and monthly activities.
My fellow Wood Badgers in the Owl Patrol and on the 2004 staff have been big boosters. Lots of phone calls and visits (some in the black hole of "they did?") emails, blog posts and cards. It will be a big whoooooooooooooop-ti-do when we gather again.
I'm grateful for all of you. Those who have called, emailed or visited. Those who have prayed, those who have just thought about me. Thank you.
Wednesday, November 26, 2008
"We will tell you when." S. Ganguly
Day before Thanksgiving. The house smells of garlic from the preparations. The garlic has completely overtaken the apple pie aroma from this morning. Dad and I took the dogs for a short walk because the weather is so beautiful. I am looking forward to eating a big dinner tomorrow. Since I no longer have to consume 100g of protein my calorie intake dropped 600-800 calories a day. I lost one pound in 4 days, and tomorrow I shall make up for it with second helpings of pumpkin pie and mashed potatoes and gravy.
Yesterday was a very long day at the clinic. I had a sonogram of my liver, that I had expected to be a CT Scan. "Doesn't matter, you shouldn't have eaten," snapped the technician. (I suspect she had missed her own breakfast.) She showed me the black spot on the monitor that represented the peanut butter toast I had consumed on the road to the clinic.
Nothing prepared me for her disposition or the sonogram. Too bad. boo hoo. She must have managed to get some pictures despite the breakfast because Ganguly had a report.
Ganguly arrives in my room and reports "You have gallstones. The gallbladder is going to have to come out. But not now. You will have to decide that later." A welcome respite since I've never had a single symptom of gallstones and surely have enough going on in my body at the moment.
Next he says "Your liver is inflamed. I am looking at your medications. I want to take you off of everything unnecessary. Like Effexor. You do not look like a depressed person to me! You do not need Effexor!" I laughed back at him that I'm taking it for hot flashes not depression. He replies in his own crisp accent "you will not have those now that you have your brother's blood! ha ha ha ha" Then quickly tells my mother "that is just a joke...."
We continued the discussion of medication. I was willing to give up the Effexor, the sleeping pill, the antibiotic. I was game for all of it. Then he says "I just have to see your blood results." DOH I think to myself. I told him I was a new grandmother. "Congratulaaaations!" then the crisp "We will tell you when you can be around the baby."
When he came back with the blood results he started with "Can you have a bone marrow today? Your white count is down for some reason. I want to check how much is you and how much is your brother." I told him yes and reminded him that Wendy had just drawn blood to check that. "Not the same. That is the blood. We are going right to the factory."
On the other hand the liver was good. "Don't change a thing" he trumpeted. "I will write your prescriptions." So happily, the Effexor is still working its magic on the hot flashes.
So I had a bone marrow biopsy. Mary Burkhardt performed the procedure and she gets high marks for painless, during and after. Of course Jenny was as always, the nurse in the room and sorry to report to you Walt that she would now like to meet Mark! It was supposed to be just an aspiration but the white cell count apparently skewed the smears so she went back in and got the bone chip.
Finally I left the clinic. The first appointment was at 8am and we did not get home until about 3pm. By then I was seriously hungry and it had been hours since I ate. I considered reporting this to the sonogram tech but decided to leave well enough alone.
The dropping white cell count means I must be careful of visitors. sigh. I return to the clinic on Monday and I am optimistic that the white count will be up.
Meanwhile I'm making my list of questions for the next visit. I'm going to rephrase them, to-wit:
1. How long til I must stop driving?
2. When should I not fly?
3. What is the time frame for avoiding babies and children?
4. How much less wine should I drink with my dinner?
Yesterday was a very long day at the clinic. I had a sonogram of my liver, that I had expected to be a CT Scan. "Doesn't matter, you shouldn't have eaten," snapped the technician. (I suspect she had missed her own breakfast.) She showed me the black spot on the monitor that represented the peanut butter toast I had consumed on the road to the clinic.
Nothing prepared me for her disposition or the sonogram. Too bad. boo hoo. She must have managed to get some pictures despite the breakfast because Ganguly had a report.
Ganguly arrives in my room and reports "You have gallstones. The gallbladder is going to have to come out. But not now. You will have to decide that later." A welcome respite since I've never had a single symptom of gallstones and surely have enough going on in my body at the moment.
Next he says "Your liver is inflamed. I am looking at your medications. I want to take you off of everything unnecessary. Like Effexor. You do not look like a depressed person to me! You do not need Effexor!" I laughed back at him that I'm taking it for hot flashes not depression. He replies in his own crisp accent "you will not have those now that you have your brother's blood! ha ha ha ha" Then quickly tells my mother "that is just a joke...."
We continued the discussion of medication. I was willing to give up the Effexor, the sleeping pill, the antibiotic. I was game for all of it. Then he says "I just have to see your blood results." DOH I think to myself. I told him I was a new grandmother. "Congratulaaaations!" then the crisp "We will tell you when you can be around the baby."
When he came back with the blood results he started with "Can you have a bone marrow today? Your white count is down for some reason. I want to check how much is you and how much is your brother." I told him yes and reminded him that Wendy had just drawn blood to check that. "Not the same. That is the blood. We are going right to the factory."
On the other hand the liver was good. "Don't change a thing" he trumpeted. "I will write your prescriptions." So happily, the Effexor is still working its magic on the hot flashes.
So I had a bone marrow biopsy. Mary Burkhardt performed the procedure and she gets high marks for painless, during and after. Of course Jenny was as always, the nurse in the room and sorry to report to you Walt that she would now like to meet Mark! It was supposed to be just an aspiration but the white cell count apparently skewed the smears so she went back in and got the bone chip.
Finally I left the clinic. The first appointment was at 8am and we did not get home until about 3pm. By then I was seriously hungry and it had been hours since I ate. I considered reporting this to the sonogram tech but decided to leave well enough alone.
The dropping white cell count means I must be careful of visitors. sigh. I return to the clinic on Monday and I am optimistic that the white count will be up.
Meanwhile I'm making my list of questions for the next visit. I'm going to rephrase them, to-wit:
1. How long til I must stop driving?
2. When should I not fly?
3. What is the time frame for avoiding babies and children?
4. How much less wine should I drink with my dinner?
Tuesday, November 25, 2008
This is Harrison. I received the photo this morning while I was at the clinic. Somehow I wasn't on the "A list" for pictures. But these little things can be forgiven of an excited new parent. I just got home from an 8am appt at the clinic. I'll talk about me tomorrow.
Meanwhile, welcome the newest Cubs fan to the family.
Monday, November 24, 2008
Harrison has arrived
Harrison made his entrance this afternoon about 3:30, weighing in at 8# 1 oz, and being 21" long. I wish I had a photo to post but I have seen him on the video and he is a beautiful baby. Annie is fine and Conor is thrilled. As am I.
I finally called Cheryl, Annie's mom, this afternoon. I knew she was in the waiting room at the hospital. Then Conor sent me a text, and said "tell Cheryl he's almost crowning" I shot back "Rnt U coaching?" He said "yes! but take breaks between contractions." I called Cheryl who swore she had the worst situation sitting in the waiting room outside. Worse than me sitting in Kansas City. I'm inclined to agree with her, especially when I figured out Conor was texting news to me to relay to her.
But Cheryl called from the room a few minutes later to tell me he had arrived and all was well. Then Conor called. It was exciting to hear the baby cry. And a huge relief to hear everyone was ok.
This evening we had a video session and Mom & Dad and I watched him and chatted with Conor & Annie and Cheryl. Conor has a Cubs hat on Harrison. For those who wonder, his hair is light but not blonde. About the color of Conor's hair.
So tomorrow, back to the clinic. CT scan of the liver and the usual blood work. I do not expect to have the Walt/Cathi DNA ratio until next week.
Grandma Cathi
I finally called Cheryl, Annie's mom, this afternoon. I knew she was in the waiting room at the hospital. Then Conor sent me a text, and said "tell Cheryl he's almost crowning" I shot back "Rnt U coaching?" He said "yes! but take breaks between contractions." I called Cheryl who swore she had the worst situation sitting in the waiting room outside. Worse than me sitting in Kansas City. I'm inclined to agree with her, especially when I figured out Conor was texting news to me to relay to her.
But Cheryl called from the room a few minutes later to tell me he had arrived and all was well. Then Conor called. It was exciting to hear the baby cry. And a huge relief to hear everyone was ok.
This evening we had a video session and Mom & Dad and I watched him and chatted with Conor & Annie and Cheryl. Conor has a Cubs hat on Harrison. For those who wonder, his hair is light but not blonde. About the color of Conor's hair.
So tomorrow, back to the clinic. CT scan of the liver and the usual blood work. I do not expect to have the Walt/Cathi DNA ratio until next week.
Grandma Cathi
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