A quick post on my birthday.

Janet's joke made me very happy that peanuts are on the "do not eat" list since they appeared to incite the gall bladder attack. I'll decide if I'm for peanuts after the gall bladder is out and I have forgotton that joke! It will be coming out after the first of the year.

At the clinic today for labs and a neupogen shot. The ANC was up to .2. Not a huge gain, but going in the right direction.

No news is good news at this point about the bone marrow biopsy. If there was disease in it, I would have heard that today.

I have a better view of the world today. I still feel alarmed about the blood counts, but it is what it is.

I dressed up in new clothes with makeup....alas no mascara yet. New clothes always make a girl feel better!
cm

I feel as blue as I have felt through this entire recovery process. My counts are very low. I must have gall bladder surgery after the first of the year. The 100 days is going to pass with me still visiting the clinic daily and living with my parents.

I had a bone marrow biopsy today. I go the clinic every day for labs and a neupogen shot until the ANC gets to 1.0. Today it was 0.1.

Changed all the drugs around and made a lot of encouraging sounds.

I am having a hard time adjusting to this unexpected agenda.

Cathi

Is this the ditch?

Maybe it's a curve ball.
Perhaps just a curve in the road.
Feels like a ditch though. Ran off the road, need a tractor to pull me out.


I haven't decided what analogy to apply to events of the last 24 hours. I had a very nice Christmas. M&D and I enjoyed breakfast and good coffee and plenty of presents. I received a fine, over the top glittery, Elvis ornament to remember this year by. I also added a fat pig ornament to the collection of pigs on my future trees.


M&D went off to Lori's for a big family gathering and I settled in to watch White Christmas and cry at appropriate moments. And just before they returned home a burning pain gripped my middle. THE GALL BLADDER. eeeuuuk! I rolled around, and finally vomited and got some relief. The doctor said "only clear liquids and see you at the clinic 7:30 tomorrow morning."


At the clinic this morning the liver counts were high. The blood counts were low. The ANC was a big fat O. Julie, the nurse practitioner, wanted to have the gall bladder out NOW. Good Grief. Altogether not a happy event. I pleaded to wait til after the first of the year and she agreed. Then she changed her mind. Then she changed her mind about the ANC. Then she changed her mind about the next clinic visit.


I think she wasn't feeling great this morning. By the time I had orders in my hand nurse Wendy had to sit down and go over the final decisions with me. Come in next Tuesday as scheduled. Go upstairs for a Neupogen shot. The doctor will call you to schedule the GI workup preparatory to surgery.


I went upstairs for the shot and tech Michael, escorted me to my cubicle. When I went up there on Tuesday, Michael met me in the hallway on my return from the coffee machine and insisted on putting the hospital bracelet on my arm. I groused and asked the desk in general "where did this guy come from?" Nurse Apinya laughed back "Rule followers! Everybody's gotta have one." But today Michael only complimented my new pink bag and did not make me wear the bracelet.


So now my diet is back to canned everything, nothing fresh. But added to those restrictions are things like no nuts, popcorn or orange juice. Low fat, low fiber.


I've had a cry. A little pout. And about 10 Pringles. (low fat, low fiber, low taste)


CSM

Deck the Hogs

The latest look in hair and holiday fashion. This sweatshirt has been in my closet for years but it never fails to get a chuckle from me and anyone who sees it. A fellow in the waiting room at the clinic a couple of weeks ago wanted to know where I got it.

The shirt was a gift from my friend Joan, of Girls on Tour, who died this summer just after I came home from the hospital. Joan is the friend who began writing Knock Knock jokes in her blog comments. She visited me in the hospital with Janet, the other member of our trio. I was already very sick and don't remember the conversation but I do remember them being in the room. Janet claims I was able to give them good pointers about Kansas City, but they brought me gifts that I had no idea I even had, much less who gave them to me!

Joan died unexpectedly in August of lung failure/pneumonia but she remains a voice in my ear. She was a three time cancer survivor and her approach to life and health is a model for me these days. She lived every day to the fullest. She never missed an opportunity to laugh...and she had plenty of laughs poking fun at me, a much more intense person. Just this week something happened to rattle my cage and I could hear Joan's gravelly voice saying "see, I just don't have time for that shit..." and poof! I let it go.

I don't know that I will be able to live up to Joan's standard of getting the most of every minute, but I do know that I will worry less about things that used to cause me "tornado brain"--where your mind works on a worry endlessly, until it winds you up back where you started.

On this snowy Christmas eve I will be cooking a big dinner for tonight for M&D and my sister, Janice. I will know that Joan appreciates being remembered and making me laugh. I will be praying that Janice's husband flies uneventfully from Hartford, CT and sending thanks that he is not connecting through Chicago. I will revel in eating fresh spinach salad and non-soggy asparagus.

At the clinic yesterday, I saw Dr. Aljitawi. He was happy to see me feeling and looking good. I have one more Cellcept pill to take on Friday. That is the end of the immune suppressant drug. He said they will be watching closely for any new symptoms of graft vs. host in the next three to four weeks after completion of the two transplant drugs.

My counts were all down and I took another Neupogen shot to prod the factory along. I remember this from the last days in the hospital. I had almost daily Neupogen shots to stimulate the bone marrow until it began producing on its own. I expect the same thing to happen now. I return to the clinic next Tuesday, December 30th.

I told Dr. Aljitawi that is my 55th birthday and I would like to have the PICC line out for my birthday and he made note of this in my file. I have mixed feelings about this because I also confirmed that they will be drawing dozens of vials of blood at the 100 day check up on January 6th. The PICC line offers painless access to as much blood as anyone orders and after it is gone, I will get stuck each time. Still, it's fun to imagine life without it.

Other progress indicators include getting an eyelash in my eye. This is news because I haven't had any eyelashes at all, much less any growth that would include one falling out. I had Mark buy mascara when he was here for Thanksgiving, but there's really nothing to put it on. He was thoughtful enough to not point that out.

Y'all be careful out there today.

Cathi

Shave and a hair cut - 2 bits!

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

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

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

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.

CM

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.

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.

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

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

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

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.

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.

"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?

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.

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

Waiting for baby

Conor and Annie are going to the hospital at 10:30 tonight to start the birthing process. The doctor hopes they get some sleep tonight to prepare for the big day tomorrow. Annie's mother has been in Chicago since mid-week helping finish preparations. She will be staying for a couple of weeks to get Harrison and Annie settled and happy at home.

I had a long chat with Conor today and I feel a bit weepy confronting the event of a grandbaby via web cam. I can't believe that baby is going to be born without me there! But I am here and I am getting healthier by the day and focusing on the long term brings me back to my task at hand.

I finished a baby quilt and sent it off this week. Conor and Annie report that it looks good in the room. A few weeks ago I put on my mask and boldly entered the quilt shop with paint chips from the baby's room to choose the fabric. There were only 2-3 other people in the shop including the staff, but I still felt very brave and daring in such a public place.

I have heard the story often of when I was born. My parents were still in college at K-State and I was born in Manhattan. My two grandmothers lived in Winfield in south central Kansas and my then single Uncle Wendell was designated to drive the ladies to Manhattan. Wendell reports that is the only time he ever drove the car with two old ladies when they wanted to go faster. He says "I could drive as fast as I wanted and nobody complained. They were both in a big hurry!"

And when Conor was born some years later in Winfield, my grandparents were visiting the next morning before the sun came up. Grandma had a set of gifts all ready for any event, and we got the boy collection. My parents arrived for his homecoming. I remember Dad marvelling "this baby is a perfect little person. 10 fingers, 10 toes, everything is there, it's just little."

Now in this age of technology we are waiting for Harrison to arrive and I will be able to see him "live" using the internet. But he will still be a "perfect little person, 10 fingers, ....."

Cathi

Week of the girlfriends

I have had so much fun this week with my different companions that I haven't posted much. It's been exciting to have a social life outside of the clinic personnel. I am crazy about the folks at the clinic yet aware that they are not my 'real' life. I'm posting a picture of me with Robbie and Carla so you can see my "new do." (That's Carla on the left and Robbie in the center.) I can't say I'm crazy about it, but I'm comfortable with it. My hair seems to be coming in exactly the same as it was before it went out.

In fact, if you really want to get to know your hair, shave your head. You can see every single individual gray hair as they come back in. The cowlicks and growth patterns become apparent. Right now it looks like I have a permanent sleep disorder on the right side of my head. The hair seems to grow straight up toward the top of my head resulting in an off center peak something like what Conor used to spend hours creating along the part in his hair, using mustache wax. I don't know whether to treat it with mousse or creme rinse so as they say, no decision is still a decision.

Bridget took me to the clinic yesterday and was treated to the one and only Dr. Ganguly. He dismissed the remaining rash as dry skin, informed me that "we will tell you" referring to when the PICC line can come out, confirmed the "no dogs for 100 days" and inquired why I was still eating 100 g of protein per day. He went off to find Melinda, the nutritionist, and returned to tell me I could stop eating protein bars. (This when I finally decided on the tastiest bars for the least cost. If you find yourself wondering, shoot me an e-mail.) The blood counts are holding steady but the liver enzymes were up again.

So cut out the extra protein and come back Tuesday for a CT Scan of the liver. Even at that, no one seems particularly worried about the liver. Dr. Ganguly suggested I lay off the alcohol, which warning Dr. McGuirk repeated in the hall when he stopped me on the way out. Dang! I met with the pharmacist to get instructions for tapering off the anti-rejection drug which I thought I would be taking for much longer. So the immune suppressant and the anti-rejection drugs are both on the way out, to be finished by Christmas. Getting these out of my system should permit the white cell count to rise the rest of the way to a healthy immune system, able to fight off germs floating around in the real world. Meanwhile the hemoglobin and platelets continue a slow rise.

Other company this week including my sister Lori who shopped and washed and cleaned, getting everything ready for Sally to come on Thursday and Lisa to spend the night Thursday night. Lisa got engaged a few weeks ago and we stayed up way too late talking wedding, which I didn't mind a bit. Sally made a really tasty stew and some excellent brownies.

Sally made luscious oatmeal chocolate chip cookies last weekend and when she delivered them she offered to bring more in a couple of days. I reminded her that Dad was gone so they probably would not go so fast. "oh yeah" she said. However, I had not considered my sister Mari's sweet tooth. I ate 1 1/2 cookie, and Mari ate the rest! In record time I think.

So I have another girlfriend here today while M&D go to the K-State football game and then we start preparing for Thanksgiving dinner.

Change of companions today. Robbie left to return to Vermont and Lori is here for a couple of days. Robbie and I had a good time together. Yesterday at the clinic I received permission to eat restaurant take out food, so we bought JackStack burnt ends and Carla came out and joined us. Carla's birthday was Sunday so we had birthday cake Saturday night for her.

So I can have guests.

Also at the clinic yesterday the liver enzymes were up again so I'm still on twice a week visits and still have the PICC line til they go back to once a week. I saw Abby, the greatest nurse practitioner, and she took away the V-fend altogether for the rest of the week. I go back on Friday. The other counts were steady. The ANC (absolute neutrophil, some ratio of the other counts) is 1.1. It has to be solidly 1.5 before I can go to restaurants.

Robbie and I walked the dogs around the block this week. That felt really great. I can walk them outside if someone else leashes them up. I'm waiting for the predicted 65 degrees tomorrow to do it again.

Everything else is a frustrating "wait and see." Wait until past 100 days, and closer to the time of the event to see if it is okay. Translation: don't make any non-refundable vacation plans til you get the all clear which could be "a while."

Mom and Dad are still at the lake. I think Mom is feeling pretty good now but they are enjoying the break while the sisters pitch in and stay with me. It doesn't look like I will get back to my house before the 100 days. Everyone at the clinic yesterday said no dogs for 100 days. Deep sigh.

But the holidays are coming up and I have shopping to do. and my room upstairs feels a bit more like "my own" than being in Mom & Dad's room did. I am ever so grateful to them for loaning it to me for so long, giving me time to recover enough to go up and down stairs several times a day.

I still have the rash which is not too annoying and is a good thing. During the preparation for the transplant, the experts told me that people who have a little graft vs. host seem to do better over the long run than people who have none. It comes and goes and covers most of my body at one time or another. I'm satisfied with it at this point.

The liver stuff I am a little worried about. It could mean some kind of internal graft vs. host or it could just be a reaction to the drugs. I hope it is the drugs. Meanwhile I have no special instructions about it. Just change and wait.

And that's the rather unentertaining update for today.
Cathi

Another weekend

Saturday morning in my new digs. Not at my house yet, but upstairs at Mom & Dad's house. Mari is here, otherwise known as the "Red Tornado" (a reference to the old Ajax commercial and her red hair.) She is a cleanin' machine. She nuked the upstairs bed and bath and I gathered my stuff and we moved. I slept upstairs last night....completely unremarkably.

I have accumulated a lot of stuff here. Clothes and books and files and medical paraphenalia. The clothes are being winnowed of all the summer items and the britches that wind up around my ankles when I put them on. This gratifying experience is dimmed only slightly by having to give up some favored bloomers.

Mom and Dad are at the lake house where Mom is recovering from an illness. She visited the doctor and got a prescription for antibiotic, but it might be a virus, might be asthma, might be... At any rate, the sisters showed up to bail me out. Lori and a friend finished cleaning my house yesterday and located my treasured recipes so I will browse and make some menus.

My friend Robbie is coming from Vermont today, a trip put on hold this summer. She will stay with me til Tuesday when she returns home and after that I am calling on the girlfriends. It will be an interesting relay of people.

I have a rash that appears over most of my body at one time or another. It comes and goes and sometimes itches like crazy. I discovered that my fingertips are numb yesterday while working on a sewing project. I could not feel the thread and had to operate visually, thus clumsily. A very peculiar sensation. They tingle and burn from time to time but I had not been aware of numbness.

Good news is my hair covers my head now. It gets messed up and there are some annoying cowlicks in it. I don't know where to get creme rinse or mustache wax to keep it tidy. (My kids used mustache wax on their hair during a one-time trend.)

And I'm off to my day of high protein and lots of water. And a different companion.

Cathi

ENZYMES PLUMMET

Dateline: KU Cancer Clinic, SM Parkway & Belinder

Cathi Maynard, of Overland Park, was seen today by Dr. Joseph McGuirk. McGuirk was interested in a rash which has covered much of Maynard's upper body for about a week. He was happy with the rash but offered a different ointment which is more greasy but should bring more relief from itching.

McGuirk was pleased to note that Maynard's liver enzymes were lower today than Monday and attributes it to a reduced dose of the anti-fungal drug, V-fend. The enzymes will be checked again next Monday. The doctor expects the trend to continue.

Other information available from Maynard's bloodwork includes WBC 1.9, Hg 9.4, Platelets 183, and ANC 1.2. A normal WBC is 4.0, normal Hg is 12-14. Her platelet count is in the normal range.

Maynard commented that she is happy with today's results and looks forward to Monday when she expects all counts to move in the appropriate direction. She is anxious for the WBC count to stay over 2.0 for 2 weeks to allow more freedom of movement for her. Meanwhile she is resting comfortably in her temporary lodging with her sister from Wichita.

Anniversary : 4 months since "the call"

July 11th. I went into the hospital thinking I had choices to make only to find they were all made for me, and I dropped out of my life to live those choices. I had no time to worry, just get busy and deal with what was in front of me. It did take a few days to get my head into the game...which only left a few days til my head was completely out of the game for quite some time. (that's a laugh folks...)

I recall when Dr. Abhyankar told me I would be in the hospital 42 days, I could not even get my head around the number. I was still feeling okay, at least in my head. And I figured I would be busy running my business from the hospital. Then I completely forgot that I owned a business. Always be prepared for the unexpected. I was reasonably prepared, but my family didn't know where the "red notebook" was with all the special, emergency information, copies of all important documents and what kind of food to buy the dogs.

So today my grasp of numbers of days, e.g. 52 days til freedom, is no clearer than it was then. My sense of time is distanced from reality. Reality is that Conor & Annie are going to have a baby sometime in the next week or 10 days. In my head this time has passed unremarkably. The only thing that changes is the date on the newspaper every morning. No sense of urgency (hence the unfinished baby gifts laying around.) Unlike the house in Chicago which has been a constant list of shopping and errands and classes and PREPARATION.

Thanksgiving is coming up pretty quickly too and I am as distant from that today as I was in July. I have been the family host for several years now, having anywhere from 12 to 25 or more for dinner. Planning menus and assigning jobs and figuring out the chairs and how many babies and choosing new tablecloths and centerpieces. This year I'm thinking it looks like me and mom and dad. Which is only disappointing because I love planning the big feast and cooking and taking lots of pictures. We are a big family and there are lots of options for getting together. Some of my brothers-in-law will probably be grateful there will be no "magazine" dish this year.

So, I'll be watching for my birthday, Dec 30th. Assuming I check the date on the newspaper that morning and don't miss it.

Cathi

Monday, Monday. sometimes it just turns out that way.

Clinic visit today. I am "holding steady" but the liver enzymes are still up. So I have to return on Thursday. They reduced one medication, the anti-fungal, to see if that makes a difference. If it doesn't, then they will schedule a GI workup to see if there is graft vs. host in my gut somewhere. This will start with the colonoscopy that I managed to duck this summer since I was in the hospital receiving chemo for leukemia. Sigh.

Nobody seems too worried. And this is one of the possibilities listed for me while preparing for the transplant. The PICC line isn't going anywhere yet since the white blood cells are "steady," but under 2.0. They are about 1.7 The Hg is 9.6 which is nice and I feel pretty energetic when I get enough sleep.

Sleep is elusive some nights. and other nights I sleep like a rock. No matter what drugs, teas, or other routines I try. I have just stocked up on crossword puzzles and work them mindlessly until the body finally gives up.

I have had more nausea in the last 3 weeks which I attributed to the magnesium that was added to my pharmacy. but could be more to it I reckon. (like graft vs. host in my gut)

Today is day 47. Thursday is day 50. Halfway. I still need a 24 hr caregiver. but I can cook. (I'm wondering why my mother asked that question today? Was she sending a message?)

Take care now....
Cathi

The view outside

I love the little purple birdhouse tucked in the ivy on the trunk of this walnut tree. The shadows change on it as the sun moves across the sky during the day. Which will tell you how much time I have on my hands. So I tell you with some confidence that no birds are living in this house.

I am busy sewing....I'll tell you what if and when I finish it. Planning a bathroom remodel. Wondering what I would do if I weren't quarantined. The first thing would be to walk the dogs outside in this beautiful fall weather.

Still limited on guests though the rash has disappeared. I expect the counts will have to be up two weeks in a row before I can go out to eat. Macaroni Grill is what I've been interested in for weeks now.

Dad's birthday was this week and for the 19th year in a row I gave hime a purple Santa ornament. His comment was "I can't believe you keep finding them!" Fortunately I scored big last year and had one stashed for him. It started because I thought the purple Santa I spied was fun. The next year I stumbled on one from Hallmark. And since then it's a traditional hunt every year.

From boring to exciting and back again

Tuesday when I showered I discovered a rash on my upper back and chest. After this discovery, I registered that my back had been itching for several days. So we dutifully reported this change to the answering machine at the clinic. About an hour later the nurse called and said "Can you come in right now? If it's graft vs. host, we need to get ahead of it as quickly as we can." So I cancelled my engagement for the afternoon and loaded up for the clinic instead. sigh.

I arrived. I was seen. I was dismissed. "maybe it is, maybe it isn't" Use this ointment and call if anything changes. another sigh, but on with the day. (it's like the old saw "take 2 aspirin and call me in the morning.")

I called my friend and we took the planned drive to have a look at the fall colors a little later than scheduled. No problem. It was nice to get out and go someplace besides the clinic, even if we were going nowhere. and there was enough color still to satisfy me.

So that was the Tuesday excitement in my life...since I voted by mail a long time ago.

Today is Dad's birthday and sister Lori is here from Fontana, KS (in case you haven't heard of it) to give M&D the day off. They left this morning headed for the Liberty Memorial and WWI museum. Hope they enjoy it. Lori and I ran some errands, though alas, we did not find a WII. Now she is baking a birthday cake for Dad and I am relaxing with the computer.

Meanwhile I continue to feel good and energetic.

Don't get konked on the head when a squirrel drops his nut. These guys around here are just moving too fast. Seems like they drop as much as they stash. One on the bedroom deck this morning had what must be the only remaining walnut in the yard. A tasty, trashy treat.

Cathi

I am 94% my brother.

Dr. McGuirk today reported that my blood is 94% donor. He was positively agape over that percentage, saying it's really great for this soon after transplant. Today is Day 40.

So look out world. There's more of Walt's genetics out there. No idea what the long term consequences of that will be.

McGuirk also called me "boring" and said he liked boring. No eating out yet, but guests and mall walking. At the empty Metcalf South mall. NOT at the crowded Oak Park mall.

So I will continue to Christmas shop in the Sunday paper ads and on-line and etc. I think the hardest part of shopping though is that I haven't seen anyone to get ideas about what they want. I have found a couple of things I want though. One of the items being touted for exercise by the clinic staff is the Nintendo Wii Fit. Who knew?

Meanwhile, the WBC count was down a little today as was the hemoglobin. The magnesium is creeping up. Mom and I trundled around the mall a couple of times on the way home and did a couple of other errands, most important of which was driving through Starbucks for a soy Carmel Machiato to celebrate how boring I am!

Another big thing from today's clinic visit...I'm down to onc clinic visit per week now. Cancel the visit this Thursday and don't come back til Monday. These lifestyle changes are coming at a rapid pace! Not as fast as the change that started July 11th, 2008, but fast enough. Today I start tapering off one of the immune suppresant drugs. It's a big honking purple thing, 4 a day, and I will be glad to lay it to rest. It also has to be taken on an empty stomach, which is a nuisance because I like to eat. all the time! The taper lasts til Dec 22, so it's not speedy or anything and involves lots of pill chopping. Music to my ears.

y'all be careful out there!

Will the Y chromosome cause that?

Happy Halloween.

I tripped out to the mall this morning and walked a whole 12 minutes. My joints ached this time unlike the last time when my legs got shaky, like muscle overuse. "Time" here refers to events. The "last time" being that interim period post hospital and pre transplant when I had a little bit of freedom. and "this time" being post transplant when I have a little less freedom than last time. (Watching all the political ads is affecting my lexicon.)

When we arrived home, Dad was blowing leaves. Smiling and having a great time. He made us wait at the end of the driveway while he blew them out of the garage. Mom remarked on how happy he was handling that blower. And I said "Just like the guy at the lake who comes down and runs the power washer all weekend." Janice warned "It's the Y chromosome. It could happen to you, Cathi!"

That's fright enough!

My end of the see-saw goes up

Visited the clinic today and the counts are up. As if they were never down in fact. They are recovered and then increased. I may have mentioned before that the Hg is now in the range where I have been operating for the last 11-12 years so I'm feeling energetic and maybe a little ADD.

My reaction today is one of relief more than exuberance. I am pleased to have guest privileges back and mall walking privileges. Still no eating out or movies. But what I really want to do is have a really long browse through the tile samples at Lowe's or Home Depot to choose some for my house. But that isn't authorized either.

Here are the rules for guests. Not sick (I know...a no-brainer) and not been sick for 3 days. And not exposed to any sick person for 3 days. No children under 12 (not my own but that's moot.) So if your kids are sick, that renders you inelgible darnit. Be clean. Like showered with clean clothes if possible. I'm plotting a post for myself in a front window away from the door to watch the Trick or Treaters tomorrow night.

I have not had any blood products or chemistry through IV for several weeks now. I still visit the clinic twice a week to have blood drawn. But as soon as it goes to once a week, I think the PICC line will come out.

I'm not going to list any current projects...see note about ADD above.

We are on Day 36 of the 100 days. 1/3 of the way through.

Cathi

Word Associations

Meltdown
Three Mile Island
three lime island
key lime pie
lemon meringue pie
lemon tree
"very pretty and the lemon flower is sweet. but the fruit of the poor lemon is impossible to eat"

Post some jokes, folks. That was fun.

Cathi

The bear market affects everything!

A downturn today! Alas! No going out, no guests!

White cell count was way down. Ganguly was the doctor today and he delivered the news and instructions in his clipped way of speaking.

Good Mooooorning! How ARE you? yes?
your counts are down.
I am not worried. this is normal. do not worry.
When did you start taking Bactrim?
ok. do not take it tonight. do not take it again.
I am going to draw more blood, sorry. You have a line? oh well then no problem.
We will see if you can take a different antibiotic.
Magnesium is down. How many are you taking?
ok. take 2 at lunch too. so 2,2,2.
I am also going to check and see how much of your blood is you and how much is your brother. that will take a while, you will find out on Monday.
come back on Thursday. we will check your blood without the Bactrim.

I asked my questions.
"I'd like to get back in my house with my dogs in December. Is that possible?"
"yes, I think so. We have a little drop now but that will go back up. should be fine by then."
He didn't bat an eye about the dogs.

I ask "how long will I take Cellcept?" and he explains the taper process.
"40 days. then taper. Right now? 2,2. 40 days, 2, 1 for 2 weeks then 1,1, and so on"

And I said "well I'm not going to ask the last one"
He says, "the one about eating out? no you can't do that yet. no going out. no guests"

I reckon there must be some way of reading my mind when he reads my blood.

So I will close with this. I received a card today. with a flowery angel and script flowing on the front that read "Every germ has a little angel watching over it"
Inside in the same flowery script: "saying Die, Germ, Die"

Watch out for bears.

Just letting everyone know that I am still here and still feeling good. I finished plowing through the insurance paperwork that is in my hands yesterday. A real slog, but something that was too discouraging to do til now.

Last night I had my first guest. Peggy joined Janice and I for dinner. Janice is a great cook and she tries new recipes often. We critique them and decide whether it's repeatable or not and what might make it better. However, last night was comfort food, meatloaf and baked potatoes. and salad of course!

I have one more gift that I am trying to locate the giver. Lavender body lotion and pillow spray. Anybody remember? So far I have discovered two gifts that I thanked the wrong person for! sigh. This is what happens when you lose your memory. I'm grateful that didn't seem to happen this time, though feel free to remind me that it has if it did. (if you can make sense of that sentence....)

Today we are taking another field trip to see "St. Norman's Cathedral", the new house that Sally and Norman are building near Paola. It is, apparently, very large; and set up on a high hill. Thus the local's name for it. (Janet, I do not believe it has a steeple to designate it Norman or Saxon as in England, but I will report back.)

Everytime we flush the PICC line, I think about getting it out. Now that the subject has been introduced, I am anxious to get it out of there. It will mean more sticks, but those will get fewer and further in between. There are two little valves hanging out of my right arm just above the elbow. If the dressing is not just right, they crunch against each other in the crook of my elbow, usually pinching some skin in between. Plus I can't easily wear long sleeve shirts, at least for clinic days. Something that would be comfortable these days.

Today is my niece, Margaret's, wedding in Lexington, KY. I am hoping that someone in attendance sends me phone pics so I can see what is going on. Conor and Annie are counting down the days to the due date...22 to go. whoop whoop.

Later, Cathi
p.s. and I identified the "Soup Nazi" post on the blog! LOL

Privileges

I now have mall walking privileges and guest privileges. The mall walking feels like a hall pass. I am looking forward to that as much as seeing friends. I have lost some strength during the confinement of the last 30 days.

Guests! I can have guests. One or two at a time. Very clean, no touching and sit yea so far apart. Don't come if you have a drippy nose or anything else, or if you have been exposed to such in the last 3 days. (I know...how can you live your life this time of year without encountering someone with a cold.) Anyway, I'm sure that plenty of people will qualify and I'm anxious to see people again.

I saw Dr. Abhyankar today and he was just full of good news and very friendly. Occasionally the question still comes up, "Could I have done anything to prevent this?" And the answer is always, "probably not, don't torture yourself." It just happens.

I have enough hair on my head now that it looks dark and Mom & Janice are encouraging me to go without a hat and wear big earrings. Which of course means someone will have to dig them out of my house. I've no idea where my earrings are at this point. The yoga bricks have never shown up so I am using rectangular kleenex boxes instead. So far I have not crushed one. Which is more an indication that I can't stretch down even that far, than that I have good balance. I did find my MP3 player this week which has been missing since before I got sick.

The problem with going hatless is that my head gets cold. I do not understand why the bald head is so popular among men these days....it's freezing!

Clinic visits appear to be down to twice a week. I don't return until Monday. The counts are stable. We are back to flushing the PICC line daily here at home...always an exciting event!

And I no longer keep peanut butter in the fridge, Diane. Because Conor made fun of me for it.

Cathi

Salad Days

Hello,

Nothing like a good crunchy salad to lift one's spirits. Janice went on a special trip to the store to get the freshest vegetables and fixed a deluxe salad that was on all 4 plates at the table Monday night. No longer a forlorn dish of canned fruit in front of Cathi to offset the crispy greens at the other 3 places.

It was outstanding. Every bit as good as the beef broth and applesauce in the hospital after I hadn't eaten for 10 days or so. I never thought beef broth could taste as good as it did then. I don't remember a lot from that time but I do remember that!

I am spending these 2 days off taking charge of my life. Things like why the trash service thinks I owe them a $10 late fee and why the state of Kansas insists my second quarter sales tax return has not been filed. (I pulled it up on their web site and then had to fax that to the KDOR. Is that crazy or what?) Getting the pictures off my camera (and helping mom with hers) and, sigh, going through the insurance paperwork. I would rather deal with the KS dept of rev than the insurance company. ugh. But that's life and I've got one so I'm not complaining too loudly.

Mom and Dad are busy preparing to go to Kentucky for niece, Margaret's, wedding. I can't believe I'm not going to be there, but I'm sending an awesome gift. and Margaret has promised to text photos from the event. Janice and I are preparing to run rampant while they are gone.

Conor and Annie are preparing for the advent of baby Harrison around Nov 16th. The car seat has been installed. They seem to have classes several times a week for hospital tours, breast feeding and baby burping. I wonder how I knew what to do without all those classes? ha! I grew up with 6 younger siblings....I knew exactly what to do when Conor was born. Nevertheless it's good to have up to date information and I recall women in my own pre-baby clases who hadn't any idea how to care for an infant. I admit to having a leg up.

So from a satisfied consumer of fresh vegetables, I'll sign off and go have some celery with peanut butter.

Cathi

The significance of a flu shot

Hello.
Today I got a flu shot. This is significant because I could not get one until the blood counts reached certain sorta healthy levels. (All things being relative in this post transplant world.)

My white count more than doubled. My hemoglobin is in the range I was accustomed to operating before I got sick. My platelets are high enough to use real toothpaste. The ANC (Absolute Neutrophil Count, which is some ratio of the others) is 800. So I can have salad.

I was so excited about having a salad I forgot to ask about guests. I will ask that when I return to the clinic, which is not until.......Thursday! A change of routine here.

I am getting rid of one prescription (not the expensive one) and am going to try an oral magnesium. If I can tolerate that (magnesium as in Phillips Milk of.....) then the central line will come out in 2-3 weeks. (central line goes from arm to just above my heart in a vein which just makes life simpler for cancer patients...aside from being useful for drugs I don't have to get stuck every day when they draw blood.)

I am excited. I am still bound by the isolation and companion for 100 days, but I appear to be at the point where the restrictions will begin to relax.

Thanks everyone again and again for your support, prayers and good wishes. And wish me luck as I go off to try to best Janice at Scrabble again.
Cathi

The weekend off

No salad for me yet. But I do have the weekend off from clinic visits. The ANC was just 500 yesterday and the white cell count dropped a bit. So it's good to have the weekend off.

And y'know, that's about all that's new in my life. I could tell you how far I am in my book, or list the words from it that I've written down to look up later. But y'all have better things to do.

So I might sneak a cookie from the community package. I always have my own package of cookies, and sometimes the one M&D are eating from looks better. But I won't be mall walking yet.

Cathi

Dreaming of salad

Day 22. Day 2 of high counts. So if day 3 has high counts I hope they term that engraftment. I am feeling pretty good these days. Sleeping better and doing more stuff. not very much more, but a little more. My bones don't ache very much and aside from a little tingling here and there, no other side effects.

I'm hoping the counts are high tomorrow and I shall indulge in a huge salad tomorrow night for dinner. At the clinic on the treatment floor (where I go for magnesium every day) a cart of sack lunches comes around at noonish. I get the lunch but ironically, the sandwich has lettuce on it, a no-no for my diet. So I give the sandwich to my companion of the day and I eat the chips and Oreo cookies. (Today I have sent mom out for a 3 Musketeers candy bar...and it is not nov 5th yet.)

Yesterday I wore my new t-shirt to the clinic (see the picture) and got some big laughs out of the staff. There are a lot more patients at the clinic these days. When I first started going I rarely saw another bald person, now there are dozens. I reckon this is the surge of folks who were keeping the hospital so full near the end of my stay and now we're all visiting the clinic. So while I have to wear a mask everywhere except in a treatment room, it's nice to have company.

Three jack-o-lanterns appeared on the back deck yesterday along with a big white mum for background. Mom lit them last night and permitted me to take photos from inside. One fellow is lopsided and Sally carved a startled face on him. It's a total smile out there!

I'm reading more but nothing too deep. Current book is "Notes from a small island" by Bill Bryson. While I have never lived in England, many of his observations are like those I have recited from my visits.

Yesterday I saw Dr. Abhyankar and he spent a few minutes discussing politics. The subject of "Field dressing a moose" came up and he said he had never heard of that before this election. Then he asked me how to do it. His final remark was something like "so as long as you have the back at the top and you stick at the bottom it's good." Who am I to argue with a hero? Though I have to say, it's a pretty good simplification of the process.

Cathi

Tues, 10.14 - Grafting is very individualized

I have a day off from the clinic. yippee! It's gray outside, Mom is running errands, Janice and I are still in our pajamas at 11 am.

Yesterday I talked to Nurse Practitioner Mary about how long it's taking to graft and revealed that I am worried. She said "we're not worried so you stop worrying." Grafting is "very individualized" and can take 30-45 days. Well my dad always told me "Be an individual" when I wanted to do what the other girls were doing...so I reckon that advice is still ingrained deep in my psyche.


The effects of the chemo are wearing off. I have a little bit of hair on my head including that pesky corkscrew gray hair right on top. and a forest on my legs. (I would count hairless legs among the pluses of chemotherapy.) So far the hair is all brown...no red from that Y chromosome.

I feel more energetic which doesn't necessarily mean my body can carry that out. Sunday I unrolled the yoga mat, then walked around it all afternoon, never putting a foot or hand on it. I'm counting the walking around it as exercise.

I'm still getting magnesium every time I visit the clinic. It got very low last week and I had a day where my breathing was heavy. Not difficult or short, just heavy. So I am a believer in magnesium. The body needs it to graft. The word of the hour.


Cousin Nancy sent a good visualization from her private car whisking her from the NYC airport to the office in White Plains. "a private car escorting Walt's cells to work in your bone marrow" I like it.

I have been a little blue for a few days. The combination of worrying about the graft and being so dependent on folks to do things for me. So I got the directive to stop worrying, then came home and issued a list to Janice and Mom of things I want. This feels very bold and demanding but y'know? They were so happy to hear it and those things are part of mom's errand list today. It's odd watching my head process all this stuff, but gratifying to figure it out.

Signing off today.

Fri, 10.10 - No Weekend Off :(

Hi everyone, a posting from Conor. I know you missed me. :)

The ANC (Absolute Neutrophil Count) did not stay up so Mom will be visiting the clinic this weekend. Per the subject, no weeekend off. That's the disappointment. However - it's not the hospital. So as Mom would say, 'we're grateful for that.' Also, the WBCs and hemoglobin continue down which is good.

Her bones are hurting now. If you can imagine (I could not quite when she said it), it's in-between the joints as well as the joints. Talk about an odd feeling and a new meaning to the phrase 'I hurt all over.' But this is a good sign so we'll take it.

Gist of all this is there are true signs of engraftment but it's not done yet. There's a long road to go in the near-term as well as long-term, and we're all marching to that one day at a time. After all, it is day 15 and engraftment is supposed to happen 12-15 days. So hopefully the neutrophil count will stabilize at a high enough level that they'll consider her 'grafted.' :)

Mom was ecstatic that Oreo cookies tasted good today at the clinic...evidence that her taste buds are recovering. She also visited Starbucks on the way home for a Caramel Macchiato. Those haven't tasted good for a long time!

Janice's husband, Chuck, is staying at Mom's house to look after the dogs. This includes walking them. It's especially good for the senior citizen, Hayward, as he seems to be particularly lonely.

Mom's looking for some new visualization so if you have recommendations on engraftment and the appropriate neutrophil count, send them on!

Hope everyone has a great weekend!

Good News from the Lab

After a blue day yesterday, and very long day at the clinic, today's blood work showed real progress. If the levels remain this good for 2 more days, I can skip a day at the clinic. woo hoo, maybe I'll get the weekend off!

Nurse Mary was on duty today and she explains things so thoroughly to me that I feel like I understand exactly what is going on in my body. When some things are low, others should be high. All according to plan and presenting more signs of engraftment.

My joints still ache but not as much, with one exception. The tailbone. Ever think about that joint? only when it hurts!

I figure at this rate my diet restrictions will be lifted before I can taste those things I miss. Today's craving is for apples. Fresh, cool, crispy apples. And the outdoors. All in good time.

Signing off before I get maudlin.
Cathi

30 days til chocolate tastes good again

I like that count much better than Day 12, etc. Nothing really tastes good right now and chocolate doesn't even feel good in my mouth. How weird is that? Don't you think they should list that as a side effect "may lose taste for chocolate"?

News today is "My joints hurt"--that's the bone marrow working.
"Ridges inside my mouth"--mild graft vs. host
Platelets are up. They are the first to go up in a mini-transplant. I'm just tickled they never dropped below the sponge on a stick level.

and more magnesium. A body requires magnesium to keep the organs in sync with each other. And it must be delivered slowly so that the heart doesn't react to it. It comes in pill form but think "milk of magnesia" and that is why I don't take the pills.

The sender of the gifts owned up...thank you Diane. She told me they came with chocolate that made two trips between KC and Houston in August. The chocolate did not make it through the travel.

I feel sharper today which doesn't seem to translate to more energetic. It's probably a good day to have a Scrabble challenge.

But first, another protein shake.

Seriously drooping

Hello on Sunday, Day 11.
I am very tired and am not doing much besides lying in bed or the recliner watching the tube. (which is ever so painful at the moment since the Chiefs seem to be having an off day.)

I went to the hospital outpatient yesterday and today. Just returned home today after leaving here at 7:30. Things move slower at the hospital on the weekends, and I needed magnesium, lots of it. I don't feel like a new woman. I feel extremely apathetic. Dr. Aljitawi said to get up and walk around the house 3x a day and that is sufficient exercise. That is about as much as I feel like doing. This is because the action is all on the inside these days.

The good news is that on the inside engraftment is in progress. The counts are bobbing all over the place, but today the platelets were up and they are the first to rise. Of course they could go down and back up a couple of times before they stay up.

The mouth sores have cleared up. Plenty of rinsing with saline I guess.
Walt flew home today. He is feeling fully recovered and back to himself. No headaches, no joint aches and no feeling loopy.

My appetite is just about gone and food is not so tasty. But I keep on eating, especially protein bars. Hot tea is the best tasting thing around right now. Janice snuck into World Market and fetched me some P&G Tips, so I have GOOD hot tea to drink. And speaking of Janice, I beat her twice at Scrabble last night. So while I might not remember, I can still spell.

100 days of isolation is 100 days of no guests. I am hopeful that will be eased before the 100 days is up, but meanwhile I'm restricted to email and waving through windows.

Footnote: I have sent many thank yous for gifts whose source I could identify. But there are some I just don't remember and didn't get written down at the time. Some blue pajamas left on the kitchen counter at my house? a block of notepaper with black polkadots on the side and tied up in a big pink bow? Would the senders please own up? And if you sent me something and didn't hear from me, let me know that too. I'd like to have the opportunity to say thanks personally.

And that's the wrapup today.
Cathi

Day 9 - something's happening

Today is Day 9. The count begins the day after the transplant. Transplant day was ZERO. The days before were -4, -5, etc. The days after have positive numbers...all the way to 100.

Mom took me to the clinic today and I saw Ganguly. He was excited about what's happening. The white cell count was up .1 and the platelets continue to drop. Hemoglobin still holding at 8.4. But I have a "tender" spot in my mouth and a tender spot in my abdomen when he presses. So I will visit the bone marrow outpatient unit at the hospital this weekend so I can see a doctor every day.

One of the side effects of something...chemo, grafting, something is mouth sores. I rinse several times a day with saline water to prevent this, but nevertheless this time I appear to be more vulnerable and have the beginnings of a sore in my mouth. The first time around I vowed I could tolerate all side effects this one and I never got them. Perhaps I swore to the wrong deity this time?

The white cell count going up, however slightly, is an indicator that Walt's cells are starting to work. The tenderness in my abdomen is a symptom of graft vs. host. (Remember we want a little bit of this fighting to ensure a better long term graft) So Ganguly was excited.

Since about 7:30 last night I have been in bed or the clinic. I am extremely tired and even though I slept pretty good last night I have slept a lot this afternoon.

"Graft" means Walt's cells are grafting to my body and working. It could be compared to grafting a beautiful, weak rose bush to a stronger rose root. You want the rose to start drawing sustenance from the grafted root. We want the bone marrow to start operating with Walt's healthy stem cells.

I've no idea what to expect. and fortunately I don't care much right now. I just go where I'm told and then back to bed. This might be the part I don't remember.

Cathi

The restrictions get tighter

Sure Happy It's Thursday. sigh.


The blood work today showed a very low ANC (absolute neutrophils) which means no more fresh food. No salad, no fresh vegetables, not even the celery sticks I had packed for lunch. They have been my vehicle of choice for eating 15 grams of protein via peanut butter.


It's temporary.

The good news is that I saw nurse practitioner Mary Burkhardt and she was a little more sympathetic to my hot flashes complaint. She gave me a prescription for something that might help them. Hot damn! In addition another friend suggested a small fan on the nightstand while I'm sleeping and that did make a difference last night. Pointed right at my head. (sigh of pleasure)


What is all this isolation and restriction about? The white blood cell count is .9. Normal is 4.5 - 11. So I am without defense against a bug of any sort. If I catch something it's going to be a big deal. and having such a low count means I've no defense against exposure either.


What's it like? I have my own bathroom that only I use. Someone cleans and disinfects it every other day. My bedding is laundered every other day. I am not permitted to clean or cook or launder. I have to sit around and let others do it (does the introduction of the Y chromosome make this easier?) All food has to be prepared here. There is a laundry list of things I cannot eat that runs along the lines of fermented or pickled. All food has to be cooked thoroughly...think well done steak and soggy asparagus.


Drink a gallon of water a day to keep everything working properly. Even my chair is disinfected regularly. I only wear my clothes once (I know I'm repeating myself.) I can eat chips and crackers but only if nobody else has had their hand in the bag. So some items in the pantry have rubberbands and CATHI ONLY labels.


The inside of the fridge has to be sanitized regularly, and all groceries sanitized before they go in there. To date that has been washing all fresh stuff thoroughly before it goes in the fridge. Now, I guess all bets are off. I can't eat it anyway. So mostly I eat vegetables and fruit from a can.


Nevertheless I look forward to first salad after this period. I remember clearly how tasty it was the last time.


So far no reactions to the transplant. and so far no indicators of graft either. All in good time. This is normal.


Cathi

Ganguly makes me laugh

Clinic today with Janice, ho-hum.


Here is a recap of the conversation with Ganguly.


G: any nausea or vomiting?
C: nope
G: diarhea?
C: nope
G: any rash or fever?
C: nope
G: any swelling?
C: nope
G: sleeping well?
C: nope
pause
C: the hot flashes wake me up
G: perhaps when your brother's cells take over you will not have them.

giggle


So things are going well. Clinic every day for the next 7 days. Things are starting to happen. WBC is 1, platelets are 108k, hg is beginning to drop at 8.4. Tomorrow will likely be a longer day for the magnesium.


I am still in the strictest isolation. Shower every day. Don't wear the same thing twice (like I get anything dirty sitting in a chair all day) No children not your own. No guests. Wear the mask even in the hall at the clinic. This is not the bottom yet. And I confess today I don't feel hunky dory. No telling how I will feel at the 'bottom'


The plan calls for 100 days of 24/7 surveillance. Never be alone. Never be more than 30 minutes from the hospital. No guests, no sitting outside on the deck. No eating food that anyone brings in. This is all to prevent exposure to or infection from any germs. The only time I get a hug is when the folks here in the house have showered and put on clean clothes. Another forbidden is shaving my legs. fortunately there is no hair on my legs these days....which begs the question of why they even list this?


When the platelets drop to a certain point, then no teeth brushing. They give me this odd green sponge on the end of a stick and something like mouthwash (nothing so abrasive as toothpaste) to deal with my teeth. They call this oral hygiene. It's more like camping. My dentist told me how important it is to keep the mouth clean as teeth harbor germs. I explained that I can't floss, and at a certain point I can't even brush. He made an ugly face.


But I don't make the rules, I just follow 'em. I'm amusing myself by taking photos through the windows. It's entertaining, I don't know how good the photos will be. My attention span for reading is about a paragraph. I am willing to be bored by the television, and I might get talked into a game of scrabble...or battleship.

Cathi

The end of September

I believe that I still have all my marbles. But just in case I don't, I'm continuing the journaling on the last day of September. I haven't counted the days since I dropped off the radar but it still seems pretty surreal.

The weather is lovely, the trees are starting to turn and Mom & Dad's house has many windows looking out on a wooded lot. In addition a thoughtful friend deposited a large bouquet of roses on the back deck that I can enjoy in the changing sunlight through the day.

The lot is full of walnut trees and they drop constantly. A thud on the deck, a surprising thud when you back over one in the driveway. I mention this because it is a daily ritual for Dad to gather walnuts. and in a like father-like son episode on the weekend, Walt complained that he cleared all the walnuts Satuday morning and there were now 70 laying on the deck. He used that specific number...I have not decided whether he actually counted them.

I feel pretty good, not so foggy as I felt on the weekend. The basket of pills does not look so overwhelming...some days it really looks like an egg basket, some of them are so big.

The clinic visit today was uneventful except for seeing Dr.Ganguly practically exuberant over the chest scan from yesterday. He is generally low key and business-like, but today he was downright excited and clearly much less worried about difficulties with my recovery from this phase of treatment. My WBC count was 1.3 this morning, which is surprisingly low to me. He said it could go to zero, but not likely. And of course, the whole point of this mini-transplant protocol was to avoid going to zero, thus avoiding a recurrence of the lung disease. The platelets are dropping daily, but the Hemoglobin is still high (for me) around 9. It is the last to drop. They estimate I will be needing transfusions again next week.

Mom is going to bridge and Unit tomorrow. I'm excited. She has not attended her routine social gatherings since I came to stay and I think it takes a bigger toll on her than the constant cleaning and monitoring that is required to ensure a safe environment for me. Janice is here for the month of October. She has taken a leave from her job as a special ed teacher in Ft. Scott, KS to be here through the grafting process. I bought a book "All about Scrabble" in order to better defend myself against her. Unfortunately, she found it right off and even pointed out some things to me that I had overlooked. sigh. Lucky I have chemo-brain to blame. (The book is out of date because it doesn't have the 2 letter word "QI" which is a lifesaver. sigh)

Walt is feeling pretty good. He still has the occasional headache. He moved into the Marriott yesterday for the John Deere annual meeting. So we won't see him again until Friday.

Janice ordered a t-shirt for me today that says "Blame it on the Y chromosome" Since I received stem cells from my brother, my blood will be boy blood. I will have XY chromosomes instead of XX. The transplant team likes this because it's easy to tell how things are working by how many XX vs. XY cells there are. But I plan to take full advantge of this new excuse when I lose at Scrabble or Gin.

So many thanks to my caregivers. all of them. Mom and Dad. Mari and Janice. Conor and Walt and Mark. Lori. Trish and Rhonda. Nieces and nephews. Everyone has chipped in. Thanks to everyone for the cards and letters and email. Some send me jokes, some send me pictures and some send little tokens. I treasure them all. My scout friends have been there in spades. My book club friends, girls on tour, work friends. Even the liberals and conservatives all seem to be on the same page. I feel like it's a huge team working on my behalf and I am just coasting along atop all the good wishes.

Thank you everyone.


Cathi