Home and healthy

I went to Chicago. My whole family was there thanks to Conor and Mark getting Mark out of OKC before they closed the airport Thursday morning. I played with Harrison. And I came home healthy. Very remarkable considering I have almost no white blood cells.


Mark got up there Wednesday evening and the kids scoured the house again getting ready for me. I so appreciate all the work and special food so I could be comfortable and safe.


I wish I could have stayed longer because I was just getting the hang of Harrison's routine when I had to leave. I spent most of the day Saturday at Loyola hospital getting refueled. They transfuse at a much slower rate than KU. I persuaded the nurses to speed it up a little but not enough to get much HB time. Conor and I got home in time to bathe him, which is very fun.


We made keepsake plates with penguins made from everyone's thumbprint. Conor and Mark didn't laugh at me for once and were very good natured about painting their thumbs. Harrison wasn't so sure. But we got a print from him.


The clinic visit Monday was uneventful. I saw Dr. Aljitawi but don't have any news or even speculation. We have to see what's going on in the bone marrow and the biopsy is scheduled for Thursday. After that I expect news to trickle in, starting with no news is good news.



Meanwhile, I'm still at home. My birthday is tomorrow and I'm hoping friends drop by. If you're in town, stop by. I feel good and energetic. I loaded Christmas pictures up to Facebook, and I will put them out on Snapfish or something so more folks can see them. But here's the prize.



~Cathi

Dang the flu anyway!

Well I missed my planned flight to Chicago today. But not because of anything here, because the poor kids in Chi-town have the flu. We're hoping it's shortlived and I can go up on Thursday. Meanwhile Walt took me to the clinic bright and early this morning where I got platelets. And the counts from the lab were not so hot. Even after a neupogen shot yesterday my white cells were at 1.7. Not much resistance in that.

So I have done the things today in preparation for Christmas that I had decided didn't have to be done. There's always one more thing to do to get ready I think. I always have one more thought for a stocking stuffer, or one more recipe I haven't made this year. I plan to bake again tomorrow, but today I picked up a couple of those stocking stuffer ideas. I wear a mask in the store, use lots of sanitizer, and try to resist picking up too many things in the process of making my decision.

Last night my old Venturing Crew paid a visit. Venturing is a boy scout program for boys and girls age 14-21. Our crew had a trip planned to Packard High Adventure Base near Salida, CO when I got sick. Fortunately they were able to find women to accompany them so the trip went off nearly as planned. Three of the four kids who took the trip visited me, returned my borrowed gear, and delivered a wonderful photo book. Jerrod created the book and his sense of humor and writing skills are excellent. They had a poster with them on the trip "We miss you Cathi and wish you were here." The book includes a couple of shots with the poster. There is a pic at the top of Mt. Shavano, a 14er, and I'm reasonably certain they would have missed me for that leg of the trip even if I wasn't in the hospital!

To cap it off, they wrote a song about the adventure for the last night campfire that they sang for me last night. It's pretty special to have 3 teens in your living room singing. It was a wonderful holiday visit.

Clearly my counts are not recovering after being off the Revlimid. Perhaps the Revlimid just hastened what was already happening. I am just focusing on the here and now. I still feel energetic and upbeat. I have a bone marrow biopsy scheduled for Monday the 28th to see what is really going on. Hopefully a booster will still be possible. Hopefully the 5qs will not have taken over. The sinus infection seems to be completely cleared up. I have a new humidifier on my furnace that is keeping the house less dry. Plenty of Ocean spray. (That would be from the pharmacy aisle, not the fruit juice aisle.)

I have more time to finish the laundry and pack and get ready. I would like to be playing with Harrison, but soon.....
~Cathi

Chicago, Chicago. Oh that toddlin' town....

It's been a week of ups and downs. The graft v. host is driving me nuts. Itching, nothing tastes good, mouth tender. The blood work showed rising liver counts so I'm on an additional drug to deal with that.

The sinus infection is not going away nicely. I'm getting daily IV antibiotics at the clinic. I assume they haven't switched me to oral antibiotics because my counts are bobbling all over the place. I've had several transfusions this week. Platelets were 22 one day, 38 the next and 8 the day after that. This is down from well over 100 for weeks.

The only real news I've had is that they are going to make sure I get to Chicago for Christmas. The NP said "we will just transfuse you and throw you on the plane." KU will set something up with a BMT program in Chicago for a pre-flight refuel on the return trip. So I'm wrapping and packing. A person has to have platelets of 50 to fly.

We will do a bone marrow biopsy after Christmas to see what's going on. I expect the counts to be back up by then. Revlimid has a long half life and its effect on my counts can last quite a while after I stop taking it. The team is very worried about losing the graft again, but always in the past when I had GVH the donor cells were working. I just cannot reconcile all the symptoms I have with losing the graft. So I remain optimistic. Most of the time.

I've been a little teary worrying about not being able to go to Chicago, and about the transplant failing again. So the key is to stay rested and stay busy. There is lots to do here at Christmas time.

I made Rocky Road candy today and I felt pretty smug about not having to hide it from Mark. I used to make it, then try to fan the chocolate smell out of the house, then hide it somewhere because if he knew I made it, he would be busy looking for it. And half the pan would be gone in the morning! However, I underestimated how much Walt and Caroline could eat in mere minutes when I offered it to them during a shopping break! I will be making more tomorrow.

I stayed at Mom's for a couple of days and Walt stayed here with me for a couple of days. I ran a fever every day with the sinus infection and that just took the vinegar out of me so I needed a companion. Walt has fixed a lot of little things in the house and is here again working on a humidifier. Hopefully that will help prevent more sinus problems.

I still have lots of energy, except when the temp goes up, so I'm enjoying baking and cooking. Wrapping and nesting. What we do when it's cold outside.
~Cathi

Revlimid and why I did not get a booster

The goal of a bone marrow transplant is for the donor cells to graft to the host environment and the host cells then disappear for lack of use. (Think of grafting a beautiful rose with a weak root onto a stronger root stock.) Gauging the progress of the transplant is some art, some science based on watching the body's reaction.

While the donor cells are working on the graft, Doctors are looking for symptoms of graft vs. host disease (gvhd.) These symptoms commonly include rash, nausea, diarrhea, facial flushing, loss of appetite. As long as one or more of these symptoms is present they know the donor cells are busy.

Another indicator is the blood counts, specifically hemoglobin, white cells and platelets. If those counts are rising while gvhd symptoms exist, then we can be pretty sure the donor cells are active.

Results of bone marrow biopsies over time show exactly what is happening in the marrow, but this is invasive and is generally called for when there are no other signs to rely on.

The results of my last bone marrow biopsy showed 66% donor/34% host. And 95% of the host cells had 5q-. So I started taking Revlimid to kill the 5q- and preparing for a booster. Two separate courses of action. By the time of that biopsy, most of the gvhd symptoms had disappeared, indicating the donor cells were slowing down. But the blood counts were still high and rising which was a good sign. So the booster was to "rearm" the donor cells so they would go back to work. The Revlimid is to kill the 5q- cells so I don't get Leukemia again.

After taking the Revlimid for a week, the gvhd symptoms reappeared in the form of a rash. The rash first showed up on the day the booster was scheduled. There was a lot of debate about whether it was actually gvhd, but the doctors felt they had time to see if it developed further before they proceeded with the booster. Having gvhd symptoms again indicates the donor cells are back at work.

And it has developed into full blown, uncomfortable gvhd. Now we still have the booster option in our arsenal of backup ammunition.

Revlimid has an impressive track record at curing 5q-. It has some side effects that include blood counts dropping. Stopping the Revlimid for a few days usually sees the blood counts return to normal. My counts are rising daily so I will probably start taking the Revlimid again by the end of this week. The only sure way to check the results of Revlimid is with a biopsy and as long as things on the outside are looking good, we won't do a biopsy for a few weeks.

My theory is that 5q- is what powered my cells and made it impossible for Walt's cells to graft. Killing the 5q- weakens my cells and his cells can get busy. My hope is that we can maintain this balance of weakening my cells and strengthening his til a full and effective graft can occur.

~Cathi

Neutropenic again

Neutropenia means my white cell count is too low to fend off any germs and I must follow careful guidelines to avoid them. The no raw food diet, the don't go anywhere precaution, the guests check germs at the door.

The low counts are likely the result of the new drug, Revlimid. The prescription advisory says that 80% of patients have to stop it during the 1st 4 weeks because of low blood counts. Which makes me part of the normal majority, whatever normal is. I think that it won't last long because the counts this morning were much higher than last night.

Last night I went to the hospital because I had a fever, most likely from another sinus infection. Of course they drew blood and my hemoglobin was 5.5 so they would not let me leave the hospital without receiving a unit of blood. The good news is the hemoglobin this morning was 8.4 which is a much bigger jump than the 1 point or so expected from a unit of blood. So the factory is still working, it just can't keep up with the consumer demands here at Christmas time. I also got a neupogen shot this morning to boost the white count.

So my plan is to finish my shopping on line and do some baking here at home. I needed a reason to stay home and hit the paperwork. As if the forecast of 18 degrees high today isn't enough to keep a person home!
~Cathi

Lucky tractor socks

Tuesday, December 8th, yesterday, was Booster Day. I had a clinic appointment at 10:00 and then off to the hospital. I showered and dressed carefully in all my lucky items: tractor (John Deere) socks, "Life is Good" hat, and my Cabbage Key t-shirt. Walt and Dad went to the apherisis unit very early and Walt was hooked up to donate the booster cells.

Robbie and Charlene and I loaded up and rolled in to the clinic. I persuaded the nurse at the clinic to put in an IV so I only had to be stuck once, then I visited with Dr. Abhankar. I reported a rash on my chest and blotches on various other parts of me. Dr. A looked the spots over and asked me a lot of questions about the bright red flush in my cheeks that seem to just happen to me occasionally. Finally he sent me to the hospital to the dermatology suite to have them look at the spots.

The resident I claim as my dermatologist looked at the rash spots. Then she called in her supervisor who looked them over. Everyone seemed to agree they looked a lot like Graft vs. Host Disease, but nobody was certain a biopsy would be conclusive. So the dermatologist called Dr. Abhyankar and reported. Then Dr. Abhyankar called back and told me that they (Drs. A and M) hoped the rash is GVH and so they decided to not give me the booster. "But go ahead to unit 42." The purpose of the booster was to boost Walt's cells into waging war again with mine and inciting GVH so the graft will get stronger and more permanent.

So we three trooped up to the 4th floor and finally found our way to my room on unit 41. Robbie and Charlene went off to find some lunch and the doctors continued thinking out loud. Finally my nurse came in and said "you are the easiest patient I've ever had." She removed the IV line and gave me a printout of my labs and shooed us out of the hospital.

Seemed like a very big day on which virtually nothing happened. And another surprise was an email in the afternoon scheduling my next clinic appointment for a week later! A longer leash is always enjoyed. Walt's cells have been stored in the freezer for possible future needs.

Today the rash is plenty itchy. It's still inconsistent, moving from my neck to my back to my abdomen and it doesn't look very red. I expect it will be more itchy tomorrow.

Robbie left for Vermont today but Charlene is still here. She cooked a fabulous gumbo for supper tonight and there is plenty left over for another meal. We had bar-b-q last night. Visited the Boulevard brewery Monday, had a fine dinner Monday night with other friends. I have enjoyed myself and maintained my energy through it all. Feeling energetic is WONDERFUL.

I am washing the lucky tractor socks so I can wear them again tomorrow. And every day after that they are clean in my drawer. They don't itch, but they seem to cause it.....

~Cathi

Don't wiggle the toes.

I have neuropathy in my feet. They tingle. Sometimes they tingle sharply and sometimes just barely. They only tingle from my toes to just past the ball of my foot most of the time.

The more I stand or walk, the more they tingle. Most of the time it's tolerable. Particularly if I am engrossed in something like the Barbie doll exhibit at the Toy & Miniature Museum.

But when I get in bed at night, the tops of my toes tingle. It feels a little bit like cold so I wiggle them inside my socks to warm them up. This is instinct or reflex, I don't know which: but it is NOT the right thing to do. Wiggling makes them tingle more. I lay a quilt over my feet whose heaviness forces the blankets down to the tops of my toes. And then I repeat a mantra, "don't wiggle." I forget sometimes and wiggle, then the voice in my head says "oh yeah, that doesn't work." doh!

I wish for the voices in my head to be more active than observant but that's probably another reflex thing.

Charlene is here from Oklahome City. I drove to the airport yesterday by myself. Remembered where it was and arrived a full hour early because I confused the times. Bought a Starbucks and read the paper. Her daughter, Hilary met us and we went to the Barbie exhibit and did some serious shopping. That would be lots of walking and browsing but not much buying. Today Charlene and I will drive to Baker University to hear Hilary's choral concert.

Robbie arrived today and Carla collected her. We will all meet up sometime tomorrow.

Tuesday is the booster. Walt goes in early to donate and I get the cells fresh. I don't have a time yet so I'm packing the scrabble game and a book and going along.

I am still in my house and still enjoying it. I have lots of energy and as long as the tingling is tolerable, I just keep on going. I went to Nebraska Furniture Mart this week and purchased a computer on behalf of a group organized by Sally. We are making a good Christmas for a young girl with chronic myeloid leukemia. I am tickled to be able to walk the aisles of NFM without tiring, and to be a part of making something good for someone else.

~Cathi

There's going to be a bump in the road....

I went to the boy scout court of honor last night with Brant. I had a great time. With adults, it was like I was at the meeting last week--we just picked up where we left off. With the kids I had to ask their names. They came up to me and said "Hi Mrs. Maynard. Remember me?" Weeellll, maybe.... Seems like they should stay short and scrawny til I give permission for them to grow.

When Brant dropped me off he had this to say which put things into perspective for me. He had been reading the blog and all the good news and had the thought "It really doesn't happen this way, just sailing on up. There's going to be a bump in the road."

So here we are at the bump in the road. The new drug arrived via FedEx today. Revlimid. Walt received his call from the transplant coordinator arranging the donation for next Tuesday. I don't know if I get the boost Tuesday or if they will freeze it until some designated time. A designated time would be after so many weeks of Revlimid, or when counts equal something or a bone marrow biopsy shows something.

I'm having fun living in my house. There are still bags and boxes of unidentified stuff around here and I've dug through one or two. Lots of laundry but I decided 2 loads a day is plenty. Yesterday I found my treasured recipes. The ones torn out of magazines and written on scraps of paper by friends. There have been lots of searches for them. "They are in sheet protectors in a file folder and they were laying on the island in the kitchen" I told everyone. The unsuccessful searchers insisted that nothing was thrown away! So yesterday I picked up a random pile of folders in the basement (where my business was) and there was the recipe folder, where all folders belong. Now if I can just translate that logic to a quilt top and the sewing machine....

There are clothes in my closet that I don't recognize. This is either a testament to chemo brain or my lack of interest in fashion. The clothes I have seem to be 80% brown. Brown is a fine color on me, and perhaps a good base color to build around, but 80% seems like overkill in a wardrobe.

I went to the grocery store by myself for the first time this afternoon. I found everything I wanted which would be counted a successful trip. But it was more tiring than I expected.

Tonight, Chinese in front of the television with Peggy.

~Cathi

On the up side

Up on the housetop click, click, click.

Down through the chimney with good St. Nick.

Today I used my new energy to decorate for Christmas. Debbie called this morning and said "I want to come up and take you shopping or help you decorate or whatever." I jumped on that offer and we hauled out the holly. Here we are in front of our handiwork (actually mostly Debbie's handiwork.)



This evening I still feel good, not at all worn out like I would have before 7-11 (July 11, 2008 when I went in the hospital.) I am making use of the continuing high counts. The only thing that bothers me is the tingling neuropathy in my feet. I have managed it so far by changing shoes and socks, but Mom suggested vitamin B complex this week and perhaps I noticed a difference today.

Dad woke me up this morning with a Starbucks and I roused up and went downstairs to find my cousins sitting in the family room. Ha ha. They were supposed to stop by and eat lunch with me, but decided to drive all night from Cincinnati for some reason. So I had a great visit with Carol, Roger and Brian, then I fixed their lunch for Debbie. Thank goodness Dad came over--no telling how late I would have slept.

Yesterday I took niece Caroline shopping for her bedroom. She is a young artist (12) with a surprisingly thorough eye for home decor. We decided on a bedspread from the store, but opted for curtains found on-line. We walked through several stores including Bed, Bath & Beyond before my feet told me to give them a break. I had a great time with her and I held up well.

So, to the clinic tomorrow for new drugs and ideas. But tonight, retiring with the Sunday crossword.

~Cathi

I had a lovely Thanksgiving starting with mimosas and egg casserole with the newspaper ads at Walt's and ending with a big dinner at Walt's. In between I baked my famous Maple Glazed Sweet Potatoes and Apples. We had a satisfying number of people present: my family and Walt's in-laws, kids of all ages and generations. The turkey was fabulous and I didn't care who won the football games. What could be better?

Today Mark and Walt moved a couple of things from Mom's house and rearranged things at my house to suit me. I sorted out my new upstairs office. I'm ready to open and dissect broken computers. I'm not the least regretful about not doing any kami-kaze shopping today.

Mark left this afternoon and took Daisy with him. I almost asked him to leave her. She is so sweet and well behaved. But I decided living back at home is risk enough for now. Daisy is a small "cattle dog mix." She weighs about 35#, is tri-color except for a blue streak on her nose and is self feeding, something of a novelty for a lab lover. She was Mark's dog originally but I got her when he lived in the fraternity house in college and I refused to give her back.


Bernadette & Richard skype called from New Zealand to send Thanksgiving wishes and we had a fine webcam session with Harrison. Little HB had his first haircut today. I don't remember any sportscars in the Friendly Barbershop where my kids got their haircuts.

I'm getting my head prepared for the next period in this game. I have moved home because I need to live like a healthy person. Mom & Dad need to live their lives too. I don't feel very patient exactly about the process, but it is a process. Just meet each new challenge as it comes.

I believe in the collective subconscious. So y'all need to get your heads in the game too. I want the positive vibes going on around me. This is going to be okay.

~Cathi

It ain't over til it's over

And it's not over yet.
The results of last week's biopsy show a significant increase in Cathi cells, complete with disease. So we are scrambling to implement a new treatment regimen with a drug to combat the disease and a booster of t-cells from Walt.
It's important for the treatment to take effect before any leukemia sneaks back in.
I am continuing with my move home. I feel great. My counts are still very good. Everyone, including the doctor, was in shock at the biopsy results. With the counts improving and staying high, nobody suspected anything amiss inside the marrow.
I'm very mad and a little sad at the same time. It's just irritating to stretch that bungee cord so far I think I've beat it, only to be jerked back once again.
Yesterday was a flurry of paperwork for the new drug, and nurses hugging my neck and saying don't give up yet.
I still feel good and energetic and certainly I know how to avoid germs and things.
One nurse gave me a magnet not long ago that has a quote from Winston Churchill "If you're going through hell, keep going."
So I'll keep going.
~Cathi

Time to move home

Last night I had dinner with 3 girlfriends. We took our time, enjoyed the conversation and the food. Laughed a lot. As I was driving home, still feeling high, a signboard popped up in my head "It's time to move home." When I said as much to Mom she only said "it's going to take a van to get your stuff back up there."

And it's true. I have a whole life here. In one room. Well almost in one room. I admit to spreading out here and there with a project. I even have fat clothes and skinny clothes. I have winter clothes and summer clothes. Only 3 pair of shoes though.

Each of the last few weekends, I have taken at least one bag to my house that did not come back to Mom's with me, so I've started the process. At supper tonight I proposed that perhaps I should come over and fix dinner every night. Mom & Dad both thought that was a great idea. Cooking is more fun with an audience and I tend to not do much when I am alone.

But Mom and Dad are gradually returning to their former lifestyle too. They've been to Tequila Harry's for 95 cent tacos the last two Monday nights. A weekly ritual for years that included Mom's weekly beer; they only visited Harry's when I was in the hospital over the last 16 months. Mom has been going to her book club and meeting girlfriends for lunch. More people drop in, still family mostly but even that had dried up when I was sick. Friends are surely not far behind.

Today I got my H1N1 vaccine at the KC Cancer Clinic. The hematologist I saw for 11-12 years before getting sick is at that clinic. The nurse who gave me the shot said "tell McGuirk and Abhyankar hello from Mary Beth." I asked if she had worked with them at St. Luke's and she told me she had worked with them, AND had a transplant with them. Holy Cow! Not so many years ago. She looks lovely and healthy (plenty of hair) and said she goes to the clinic every 6 months. Anyway, I will be seeing my old hematologist Monday as that was a requirement for getting the vaccine from them. I'm still surprised that the KU Cancer Clinic does not have the vaccine.

So I'm going to sign off here and go upstairs and see what can be moved, and try to locate packing containers other than grocery bags.

~Cathi

A common cold

Another week and another clinic visit under my belt. The counts today were just delicious! Platelets 120. Hg 8.5 and white blood cells 4.5.

I had a bone marrow biopsy today and I will get the results of that next week, I hope. I want NO phone calls, NO emails in the meantime. That would be good news.

So the biopsy today wasn't totally routine because one of my favorite nurses from the hospital finished her Nurse Practitioner degree, passed her boards, and was learning to do a bone marrow biopsy. It took a little longer, and it's a little more sore tonight. But I'm happy to report it did not hurt during the procedure. I have very hard bones, and the best of doctors have had mishaps doing that procedure--a broken needle, a slip and skid down the curve of my hip bone. The first time I had one, the doctor put his knee up on the table to pound the needle in. Thankfully I had some kind of feel good gas for that one, and nobody has done that since.

I'm excited to see these nurses finish school and go to work as practitioners. On the other hand, it is a measure of how long I have been hanging around the BMT unit at KU Med Center! At the hospital one of the technicians (formerly called nurse's aides or LPNs) finished her nursing training, passed her boards, and was my nurse for a day. That was a thrill.

I am just getting over a cold. A plain cold. It's a real novelty to have just a cold, no infection. It is however, a real pain to stay home and miss all my social engagements of the weekend. I even moved back to Mom & Dad's house Friday night because my throat was so sore. I had flashbacks of waking up on Craig Dr with a horrible headache, a high fever, and pneumonia not so many months ago. But my fears were unnecessary, it's just a cold and it's almost gone.

I had a webcam session with Harrison Sunday and he is changing so fast. He waved to me a lot on the screen and did a little showing off. He is nearly walking, and based on what I saw Sunday, will be keeping his parents busy. I think his favorite place to practice was around the kitchen from cabinet to cabinet, opening each of them. Just a matter of time til he doesn't need those hands to hold himself up!

I am optimistic about the biopsy results since my counts have been consistently high and higher. I finally located one of my non-KU doctors with H1N1 vaccine and I will be getting that this week. Then, look out world! Cathi Maynard's on the move!

~Cathi

a very happy day

Today I went to the clinic and saw Dr. McGuirk. Keeping in mind that he is the eternal over-optimist, it was a VERY positive visit.

My counts were high. Platelets were 111. Platelets go up first. Hg was 8.5 and wbc 4.0. I have more stamina than I did before I got sick in 2008.

I can drive.
I can move home.
I have a beeeeuuuuteeeeeful rash. Be careful with it but it's what we want to see.

No gardening, but what else do you want to do?

I picked up my car and took it to the shop for the brake work it needs. Mom put the last coat of varnish on the new stair railing (I've been using it, but it wasn't quite finished.)

I am really getting well.

It has been a very happy day.

I had lunch with two scout friends, Dick and Brant. We had a great time catching up, gossiping and trading stories. Dick stood up to leave and he said "I'm going to go home and Pat is going to ask me questions about you and I'm going have to answer "I don't know...we didn't get to that."" Ha ha. We had a lot of laughs. I am thinking about when to go to a scout meeting. There are things to think about like H1N1.

I have had a flu shot but the clinic does not have H1N1 vaccine yet. BMT patients like myself cannot be around people who have the nasal spray H1N1 vaccine for 8 days, and of course we can't get that one. So I will be making calls to my other doctors to see if someone has the vaccine.
Never, ever, ever, ever give up.

~Cathi

Strength & stamina

Sunday evening full of pot roast and fresh broccoli salad. And a little bit of ice cream. I haven't itched much today but it's beginning to happen now. Hopefully I'll be in bed asleep before it gets bad. The rash is bright red spots that live on my abdomen, chest and back, but move around the rest of my body. The ENTIRE rest of my body: my arms, legs, face, neck, ears, head, etc.

I saw a dermatologist this week who biopsied a bright red rash spot. Then wanted to biopsy two ugly scars on my back. That have been there unchanged for 45 years or so. Good grief. I ignored that but made an appointment to go back in two weeks to have a cyst removed.

The mammogram this week was uneventful, looked exactly the same as last year. The radiologist who read the CT scan of my lungs saw something abnormal in my breast and ordered a mammogram. Turns out it was a thick spot that was examined ad nauseum 6-8 years ago. So onward. It was time for the annual mammo anyway.

I spent Friday night at my house alone. Peggy and I went out to dinner and did some shopping. Several stores, we had all kind of things we thought we needed. We ate at Cactus Grille where they have a bottle of hand sanitizer on every table. I reckon the swine flu has made the world safer for me to navigate at this point in my recovery.

I have purchased airline tickets for me and Mark to go to Chicago for Christmas. I have purchased a birthday and a Christmas present for Harrison. (I bought the birthday toy that Peggy and I played with the most Friday night.)

Saturday I visited Kemper art gallery and went to my nephew's last football game. I came home and took a nap after that, but overall I have really good stamina.

This week I have PT tomorrow, the last session. And I still need to blow up that balance ball because that is what she's going to teach me. This will likely be my last PT session. I have lots of exercises and doing them regularly will build strength and flexibility. I don't have near the arm strength that I had before, but my legs are beginning to resemble real legs.

I go to the clinic Tuesday and assuming the numbers are good, I'll be doing more. I'm anxious for the driving privileges.

~Cathi

Dr. Aljitawi, sigh....

Today I saw Dr. Aljitawi for the first time since I left the hospital. COWABUNGA! I still love him!

My counts were good. My platelets were sky high! 89. That's approaching normal (115) but it is high enough to see the eye doctor and get my eye fixed. I had cataract surgery a few years ago and the scar tissue has built up. They laser a hole through it which takes about 3 seconds (and costs $3000.) It would be really nice to get that sorted out. It affects reading and computer work, but it really skews my color recognition. I had the left eye done a couple of years ago. But of course the right eye is dominant and it's the cloudy one now.

No driving privileges because I'm not strong enough. Maybe in two weeks. I guess he noticed I had a little trouble standing up out of the chair to hug him.

Public transportation and events after the end of November. (I didn't mention the theatre on Saturday. yikes.)

Flying to Chicago for Christmas and playing with grand baby Harrison APPROVED! woot woot.

Family gathering this week for Dad's 78th birthday? "If you promise to wear a mask and go easy on the hugging." yippee. I assured him we are all experienced "air huggers."

Now about this itinerant pain in my chest. It moves around, it's inconsistent, no fever, no cough, no nasal drainage. So I had a CT scan of my chest. I received an email this afternoon from my nurse that Dr. Aljitawi will give me the results of the scan next week so I guess there was nothing too bad on the scan. I figure it's something like a rash on the inside. And, if the scan is okay, I can go two weeks between clinic appointments.

Tomorrow I see a dermatologist for a biopsy of the rash to make sure it is GVHD. doh! I still itch everywhere. My skin is dry and flaky, no matter much lotion I slather on. But this is good. Itching augurs well for full recovery. I don't mind.

Meanwhile I am back at M&D's house. The plan was to spend 4 days at my house and just see how it felt. It felt very good, but I did not eat very healthy when I was alone. Next time I will take some frozen dinners with me. I guess I need an audience to cook because I sure enjoy it here at M&D's house.

I'm planning to go back to my house this coming weekend, after meeting Lori up there Thursday. Lori offered to come up and help me find things. I have clothes I don't remember buying and clothes I know I had that are not in the closet. I can't seem to locate any of the art from my walls. One picture that is leaning in the dining room I wasn't able to lift and hang on the wall again. It's one discovery after another at my house.

And that's the news. I still have lots of energy. I still feel good. I still eat a lot, though I have a few more pounds to gain. The bruises over my body from the long months of treatment are finally fading noticeably. My hair is growing: I can see the cowlick in front and three gray hairs.

Gotta go. Gotta buy those tickets to Chicago in December!
~Cathi

The itch to get well

I have been at my house on Craig since Friday. It has been a fabulous long weekend. Sharlyne stayed with me til Sunday and Walt spent the night Sunday night. This morning I am sitting at my kitchen table with my computer looking out the windows at my gorgeous back yard. Just like the old days. The sweet gum has finally turned completely yellow and is dropping its leaves; the Japanese maple still has enough glowing red leaves to be a pretty contrast. The plants at the base of the deck are in some stage of color and it's just lovely to watch. And it is familiar.

Saturday Sharlyne and I painted the town. We started shopping at Macy's and I have some new items that FIT. Then lunch at Houlihan's (their new small plates menu is tasty and inexpensive.) On to the Bloch Building downtown to watch "Palomino" on the Copaken Stage, a theatre with nearly perfect acoustics and a very worthy play. We went to see Sharlyne's bathroom remodel in progress, then took the long way home. I saw the new building that has happened since I've been inside, most notably the Kaufman Center for the Performing Arts. That's a spectacular addition to the skyline. We picked up Jack Stack carry out for supper, then hosted trick or treaters. And watched "Slumdog Millionaire."


Walt and Suzanne brought Anthony and Caroline over to TorT. I have bought or made their costumes since they were born and this was my first opportunity to see them live. A very good Halloween! I'm posting a picture of them here. The biggest bonus was to realize about 9:30 Saturday night that I had been going all day and still felt great. Before I got sick I would have flagged after the theatre for sure. The day was just exhilarating.

This week I have lunch plans with scout friends. Clinic visit on Wednesday. I'll be pressing for driving privileges and a date for flying. Little by little I am rejoining the world.

The desirable rash is now present over most of my body including my face and head occasionally. I itch somewhere constantly. It is the itch to get well. I'm happy about it!

~Cathi
.S. Anthony, 10, is Indiana Jones. Caroline, a few days shy of 12, is a Renaissance Witch.

I started to post last night but was interrupted by something. Since I've slept since then, I can't even remember what was more important than updating the blog!

The count numbers were good at the clinic yesterday. Nice jump in platelets again. White cells and hemoglobin holding steady. I still feel really good. Yesterday Mom and I went shopping and hit 3 stores. And I still had energy to come home and fix supper. Most of the pains in my mid-section have eased so I can exercise again. It seems like every exercise I have on the list affects the "core."

Janet, physical therapist, called yesterday while I was at the clinic and told me she had the flu along with 3 of her 4 kids. She said "I might feel good enough by tomorrow afternoon to come see you..." I replied, "Don't come to MY house tomorrow!" yikes! Don't come for 2 weeks. I told her I have plenty of exercises and I will keep up with them. The balance is improving but I still can't stand on one leg for any amount of time. sigh.

When I looked in the mirror this morning, I recognized the face. The puffy moon face is just about gone and the hairline is improving. Sideburns fading, sidewalls filling in. I've even put on makeup a couple of times. Wearing some of my familiar clothes--none of the britches alas. It all feels good.

And the big news I can share today is that Conor & Annie are going to have another [planned] baby in May. We're all hoping for a girl but don't know for sure yet. I'm super excited. Also, I'm planning to go to Chicago (where they live) for Christmas. They want to have Harrison wake up in his own house for Christmas and I totally concur. My mother was the same way. I remember the commotion of going to Granny's for Christmas one time when we were growing up. Our car was a big station wagon but it was not big enough to haul probably 5 kids at the time and all the Christmas paraphernalia to treat them.

So, continuing to improve and feel good and gain strength.

~Cathi

Counts R up!

At the clinic today my blood counts were up way beyond my expectations. I am excited!
WBC 4.2
Hg 8.5
Platelets 42

Still kind of low on the platelets but they are the last to rise. And they're higher than last Wednesday. You don't get a jump in hemoglobin from 6.7 to 8.5 from a transfusion. You MIGHT get 1 point, but you don't get 1.8. That comes from the factory.

And I'm satisfied with the factory.

I have been feeling great. So great that I did all the PT exercises for my arms with weights and pulled a muscle in my right side (the arm that can lift the most.) THAT hurt! Still hurts a little bit. I've still been doing the stairs, but haven't been on the treadmill much because I've been "out." Lots of walking when you go "out." To the grocery store, to the clinic, to the art gallery, even cooking a meal.

So today I had confirmation that the inside matches the outside. And I had a little bit of wine with dinner to celebrate.

~Cathi

I'm getting a rash!

This is great news. This is more graft v. host. So far I have it on my upper back and midriff. It itches a lot, but I have some cream to put on it that stops the itching. The immune suppressant is down to .5 mg twice a day.

Yesterday I did a lot of walking around the Nelson Art Gallery. Before I went I went through all the arm exercises with weights. And Hallelujah, I am very sore today. Before getting off the prednisone, I could just barely do the exercises, and they didn't seem to make a difference; no pain, no gain...literally. As if the prednisone numbs my muscles.

An old friend, Sandy Kramer, took me to lunch at the Grand Street Cafe and then to the Nelson. The new Bloch wing has a permanent space for curated collections out of the Hallmark photographs. The Hallmark photography collection is fabulous, includes photos of all kinds and types from the beginning of very primitive cameras up through today. The photos are printed in different ways (silver, platinum, chromocholor.) Yesterday's display focused on children. I am not so great a photographer, but I love looking at other photographers' good works.

It was a good way to get my mind looking outward at the things that interest me. Today I am having lunch with Skip Peavey, a scout friend. If I'm not too tired after lunch, Mom and I might take in the Grand Canyon IMAX show at Union Station.

So I must go smear cream on my rash to be able to sit through lunch. The rash is exciting!
~Cathi

Different news today

My hemoglobin was so low today that I got a unit of blood. I haven't had a transfusion of blood or platelets for months. My platelets also dropped drastically. Ironically the white count is up. I still feel great though and gained 5# this week.

Dr Abhyankar is worried because of the 5q- that was present in that .8% of the bone marrow that was still Cathi. So we are speeding up getting off the Prograf (immune suppressant). They will check the counts again Monday. If they're still low the action speeds up even more.

If counts are low Monday we will stop the Prograf that day and do another biopsy. Then we'll be looking at a leukocyte booster from my favorite donor brother.

Nurse Amy came in and said "we're not going there yet. It could be any number of things causing this." Nurse Wendy said "Let's face it Cathi. You haven't been ordinary since you got here." Everyone is worried though. Dr. A kept shaking his head as if "dang! we were almost home."

I am reminding myself that I have a champion team treating me.
and that they have been very creative about coming up with options.
and my white count is up so I can still go out.

If I need to get my mind off the situation the physical therapist has given me enough exercises to stay busy all day if I do them all in one day, which is impossible. And I'm reading a David Sedaris book ("When You Are Engulfed in Flames") which is amusing.

~Cathi

Pumpkins and the house on Craig Dr.

I'm comfortable at M&D's house, but I spent the weekend at my house. I had a fabulous time. I was really nervous about going to bed Friday night. I had a little headache. And the last time I stayed at my house I woke up terribly sick and spent over a month in the hospital. Happily I woke up healthy. Peggy stayed with me Friday night and Mark came up Saturday and stayed the rest of the weekend.

Friday I went to lunch with my friend, Lisa, whose wedding I was in last May. Just like a regular person!

Mark installed my new dishwasher (Kenmore Elite) and hung a second railing on the steps so I can get up and down easier. And yes, I have continued to go up and down the stairs at M&D's 5x most days. I am going to make sure Dr. McGuirk knows this flight of stairs has 14 steps instead of the usual 11. I think that should count.

Sunday, Mark and I went to Louisburg Cider Mill to partake of some fun, cider and donuts. I actually had root beer--nothing unpasteurized yet. The place was packed with kids and pumpkins and straw bales and I really enjoyed watching them. Conor and Annie took Harrison to the pumpkin patch Sunday too, so I'm posting two photos here, Mark and Harrison in the pumpkin patches.























No photos of me yet but the fat face is getting closer to normal. PT was today and we worked on balance. I have just about none. So now I have a list of "exercises" to do to improve my balance. No hair to speak of.

I looked for some specific things at my house unsuccessfully. I remember Dad telling me when they finished neutering my house, "your entire life is in bags in the garage." Mom and my sisters have put a lot of it back in the house, but there are still quite a few bags out there. Hopefully one of them has a quilt top that I started in the 80s. And one has my favorite goto recipes.

Tomorrow I go to the clinic. I've no idea what I will find out but I'd like to know there is more information coming my way. Look for news.

~Cathi

5x without stopping....

I climbed the stairs 5x without stopping. Holy cow. I could hardly walk the rest of the day.

Today I had physical therapy AND climbed the stairs 5x without stopping. Good grief.

Two days without prednisone have also been two days without insulin. My blood sugar went to normal levels almost immediately.

I also have pain that McGuirk called graft v. host before the prednisone squelched it. So the GVH is still in there...a hopeful sign. It's not so bad that I want pain killers.

Sleep is not so good but my sisters who lived through my getting off steroids last summer will be disappointed to know I'm not doing or saying anything crazy, just lying awake. Mom has been reminding me of some of them. I think Mari pulled the straw for the worst night where I apparently attempted impossible things like moving beyond the reach of the IV pole without moving the pole.

I am looking forward to spending this weekend at my house. My friend Peggy and my son Mark are pulling the duty to look after me. I have a list of things for Mark to do for me--I hope he gets through it all!

I am moving forward with my 100% donor marrow as if it is an actual 100%. I think that acting healthy and well will lead my body to the healthiest spot. When I put on my dew rag in the mornings I imagine myself in Nedra's sidecar, the two of us riding wickedly through Oklahoma City. It makes me laugh.

~C

100 day results - a mixed bag

I saw Dr. McGuirk this morning at the clinic and he was bursting with the news that my chimerism was 100% donor. "Well 92.8% but that's 100% because there is a 1.2% margin of error." The entire clinic was dancing. Even the cleaning ladies were hugging me (a sure sign I've been there too long.)

It was a celebratory morning. Lots of privileges like road trips and hotels and staying with other people as long as they aren't sick. Even said I could live alone. Dad could work in his shop. No gardening, but movement!

He went on to say he had asked for the determination of 5q- and didn't have those results yet but to call him this afternoon and he would have them. So Mom and I went to the Starbucks drive-through for what has become the traditional celebratory drink (tall soy latte, hers with carmel) and to the grocery store. For the first time I went into the grocery store without a mask and could carry my coffee with me...a lot of freedom.

The phone rang as we were checking out and it was the clinic. Dr. McGuirk told me that there was still 14% 5q- cells. "Stop the steroids, start tapering the immune suppressant. We'll get it," he said with confidence.

So over the rest of the afternoon I've gone from tears to cheers to fears and back again. Here is (with apologies to Paul Harvey) the rest of the story.

The actual explanation is 14% of the .8% Cathi cells remaining in my bone marrow have 5q-. Dad has worked that out to 99.9112% (or something) healthy cells which is a nice number. ("5q-" is the bone marrow disorder I had for years before it converted to Leukemia which it wasn't supposed to do, but life has a way of happening.)

The plan is to immediately begin tapering off the immune suppressant drugs to allow Walt's cells the freedom to overtake the last .8% of Cathi cells left. On the up side, to taper off the immune suppressants I have to stop all the steroids. So muscle building here I come!

We still have options. and options have been good to us this time around. One option in the transplant protocol this time around was to taper the immune suppressants very early in the game (like day 42) to incite graft vs. host disease. We didn't have to do that because I developed a good case of graft vs. host right from the transplant. A good case of graft vs. host is a good omen for longer term survival. So we have that in the can. A good case of graft vs host will hammer the host cells when the immune suppressants go away.

We can get a leukocyte booster from Walt--essentially hit him up for some T-cells.

So this will be a watch and wait process with regular checkpoints. We're on safari looking for those 5q- cells floating around. We're energizing Walt's donor cells to knock 'em out. And we're maintaining a healthy body for the action to take place.

One of the things McGuirk said to do today was go up and down the stairs 5x without stopping. I'll be sure and let you know if that happens! holy cow!

~Cathi

I'll know it when I see it

Day 101. I don't know what I'm counting now. I guess I am just continuing to exercise and get stronger. Take all the meds and stay healthy. Count carbs and keep the blood sugar somewhat even.

The goal might be somewhat like "I'll know it when I see it."

I went to Sears and bought a new dishwasher for my house. One that has a stainless steel interior so it gets real hot and sanitizes the dishes. I promise I will never look at cleanliness the same way again. Will I be able to go anywhere without disinfectant wipes? I dunno. I sure can't go an hour without washing my hands. Every hour "drink a glass of water", "wash your hands."

I also spent some time working on this quilt I started somewhere about 1978 or 79. It's a beautiful quilt if somewhat dated by the color choices. I have a new dew rag straight from Sturgis, SD. Says "Biker Babe 2009" on it. Fits like a dream. I'm considering remodeling some of less well fitting scarves I have into a similar pattern.

And I picked up a David Sedaris book to pass the time. Time on the treadmill, time in the chair, time. I still have idle time. But choices are good. It's great to have choices.

~Cathi

Day 100 - second time around

Today is Day 100. October 7th. 100 days from the 2nd transplant on June 29, 2009.

I've been through all the appointments at the clinic and the hospital. We are all most anxious to hear the results of the bone marrow biopsy, but it will be at least a week before those results start to trickle in. I have an appointment on the 21st to get results of today's tests, but I hope to get some clues at my next clinic appt on Oct 13th. The only thing I have an idea about after today is the pulmonary function test which went fine.

Meantime, I've developed a sinus infection. Dr. Abhyankar asked me yesterday "what do you have in the home pharmacy for the sinus infection?" ha ha... Not surprisingly, I had a couple of options. The daily pill bundle promises to get smaller and smaller though. I can stop taking one when the prednisone goes, another a couple weeks after the prednisone, etc.

I've continued walking a lot and the physical therapy resumed this week. She has me putting weights on my ankles and doing some things with the left rotator cuff damaged by the PICC line.

I am exhausted by the sinus infection. I am spending my time shopping on-line, but not buying anything, and working crosswords.

~Cathi

Looking Up!

Not only is my outlook brightening, but my body is feeling better too. Mom came home from Paris with guns ablazing and she has been shooting my feet making me exercise, exercise, get outside, treadmill, go anywhere she can think of. She has also been following all my physical symptoms closely and making suggestions. She is very hard to ignore. (Treadmill music - "Gershwin plays Gershwin.")


So the result is I can tell I am gaining strength in my legs, and I've had a few days where my stomach wasn't sour all day. A sour stomach makes it difficult to eat, to move, to do anything. I just want to get comfortable in the recliner and not move. Dad is in his hometown of Winfield for a few days and I've even been cooking for Mom and I!


I can't tell you how great it feels to walk outside. I am still wobbly enough that I have to hold someone's hand for the trek around the cul-de-sac, but a little 15 minute spin really clears my head. I begin to believe I will be able to camp in the wilderness for a few days in the future. Speaking of wilderness, I watched all 12 hours of the National Park film by Ken Burns this week. The history was fascinating. I think of all the people who were personally moved by John Muir and described in the movie, and I wonder how many more people he encountered who didn't go on to become movers and shakers but were still convinced that National Parks were a good idea.


I ended up at the clinic this morning unexpectedly because my blood sugar reached a threshold level. They changed the sliding scale dose for insulin and gave me some more "education" about diabetes. I ask questions sometimes about how I miss these "educations" and the nurses all say "but you're smart--you just know this stuff." Well apparently diabetes, even the temporary kind, dulls one's brain. One thing I did read in the literature that I carted home was that it can cause depression. So I'm blaming the recent long funk on blood sugar, and the more recent uptick on managing it.


The blood sugar should level out post prednisone, which I will be taking through the 1st week of Nov. The high blood pressure is leveling out now with meds, but I think it is caused by Prograf, the immune suppressant I take and will likely take through the end of the year.


One field trip Mom dreamed up this week was to Nebraska Furniture Mart. We got there at the opening bell Friday morning and checked out couches. Hardly anyone around. I found a couch but I have some time to decide if I'm going to buy it. But it was great fun shopping and measuring and sitting. One the way out, we wandered through the lamps and I found a funky floor model marked way down that they marked down more at the register so I felt like that was a steal. (Nothing like the garage sale steals my sisters report every week, but satisfying to me.)


I checked out the Sunday paper ads today looking for a mullet wig since Barry had some trouble with the term. I didn't see that specific description, nor for that matter did I see a mullet wig. But think Elvis. Lump on top + lump in the back= mullet.



For some early trick or treat exposure the doctors at the clinic held a scooter race to raise money for the Light the Night walk, a fundraiser for the Leukemia and Lymphoma society. They dressed up, Dr. Abhyankar arrived on the back of motorcycle wearing a bicycle helmet, a black cape and cigarette in his mouth. They raced in heats and Dr. Abhyankar won the crown of Dr. Speed. In this photo, they are left to right Ganguly, Abhyankar, Aljitawi and McGuirk. My team. They are the primo doctors in this field and they believe in me.

The PICC line is OUT!!!!

The PICC line came out yesterday. Unexpectedly. Happily. Whoosh, whoosh. Mary came in to change the dressing and Dr. McGuirk said "let's just get it out of there!" Despite having to spend all day at the clinic because I did need some minerals, I did not care.

Taking a shower today without wrapping my arm in Glad Press 'n Seal was a real pleasure. I only had to dry off once. With the Glad wrap I dried off, then peeled off, then dried again, the drips from underneath the wrap.

And the ongoing problems I've had with the movement of my left arm, relative to the rotator cuff are clearing up quickly. As soon as they pulled the line I could lift my arm in the direction I had not been able to. It will take a while to regain strength, but I have patience.

So big milestone.

I've also started taking insulin for high blood sugar. This is a hopefully temporary thing until I get off the prednisone completely. This is such a weird new experience that I don't have much comment on it now.

Today I walked outside twice, just around the cloverleaf cul de sac where I'm living right now. I've been encouraged to get out more. Not that I can really go anywhere, but the weather is particularly beautiful and as long as I don't step (and roll) on any dropping walnuts, I'm fine. Very shaky and I hold hands with a guide for the trek.

I'm expecting the return of my sense of humor any day now too.
~Cathi

Sideburns and Sidewalls

Taking prednisone for a long period of time is full of new surprises all the time. I now have sideburns. ugh. I can't really cover them up with my hats and dew rags without producing loud and continuous feedback from my hearing aids.

My hearing aids need to be replaced but I can't go to the places of my choice because of the possibility of GERMS. And I'm not sure that would help in this case anyway. You cover up the holes in the hearing aid, you get feedback.

To shave or not to shave? Should I have to make this choice? My eyebrows already rival Andy Rooney's, though they are still dark rather the shaggy gray he has chosen to sport.

Moving on up my head, I still have sidewalls. No hair on the sides. A sort of wide mohawk starting from my prominent widow's peak in the center of my forehead. Normally this widow's peak is an attractive feature of my hairline. Now it is merely the starting point for a Micky Mouse cap-like frame for my moon face.

Folks have been commenting "you have hair!" I had no idea it was creeping down the sides of my face, soon to be Elvis-like in appearance. Perhaps this calls for some of those shiny, chrome sunglasses Elvis was so fond of. Perhaps it calls for a mullet wig.

I'm wondering if I can produce a white cape in this season of costumes and goblins. I wonder what the children trick or treating would make of an emaciated looking Elvis dishing out their candy--or bananas and peanut butter with a side of bacon.

ha ha. I make myself laugh. I did have a Red Robin burger last night and it was tasty and juicy and full of fat. I even indulged in a few french fries.

Saturday was a beautiful day and my friends Debbie and Ernie came up and took me to the garden center open house. Debbie had photos of her yard and a landscape designer helped her choose the right tree for the right place, then we bought a new shrub for my yard which they planted for me. Ernie cut the wild rose completely back, including dismantling the trellis, loaded up all the debris in the truck and hauled it off. Meanwhile we had a picnic on the deck at my house which was delicious. I felt good all day Saturday too. No sour stomach which seems to be almost constant these days. A wonderful day.

Mom had to spend an extra night in Paris and will not arrive home until tonight. Something about the plane and delays, then cancellations.

I feel good today and Lori is here cleaning one more time before Mom comes home. So I'm going to take some time to see if I should dress up as Elvis or Mickey Mouse.

Cathi

Ennui

I think that perhaps if I posted to this blog more often right now I might cheer myself up a little better. As it is I seem to have a serious case of ennui as much as all the physical things going on.

It's been a fun and busy week with all the different caretakers coming in to stay and spoil me. A big visit with Harrison Thursday afternoon! Friends coming later today to do some yardwork at my house and have a picnic. Mom has called a couple of times from Paris and all is going well over there.

Yesterday I got permission to eat carry out food so indulged in some Pad Thai from Bo Lings last night--Thanks to Janice and Chuck. Lotsa fat! I'm still craving a big juicy Red Robin burger but that will have to wait a day or so I think. I've done a little bit of cooking around here and we have some awesome leftovers too.

Things that are keeping me off balance are the annoying diarhea, but my blood pressure has risen dramatically over the last 10 days so I started medication for that last night. And my blood sugar has been too high for too long to ignore so I will be starting insulin as soon as the docs and pharmacists agree on one. The prednisone and the immune suppressant drugs are the culprits in the blood pressure and the blood sugar. So as they go away so should these other symptoms. I don't notice the blood pressure really, but the blood sugar going wonky can really give me the shakes. Coupled with weakened legs and hips this seems like a good time to sit in the chair and do very little.

I've continued walking on the treadmill and can successfully walk for 13-15 minutes if I don't set it too fast! LOL (Imagine the skinniest Cathi Maynard you can loping on the treadmill...no grace about it!)

So Harrison is 10 mos old now and a beautiful baby. Plus he is really well behaved. Take it from his Gram who knows these things. He has the bluest eyes. It took him a while to warm up to me (his mom says that's because I'm not a man) but we got to play. His Dad was here for bar-b-q and Harrison LOVED the cheesy potatoes from JackStack. They are off to a wedding in Topeka for Annie's childhood friend and then early Sunday return to Chicago.

Being flu season, everyone is extra vigilant about germs and things and I appreciate that. I'm afraid it's going to be that way for a while. The clinic ran Dad out yesterday because he has a cold--he had to wait in a common area for me. I am careful to wear my mask when I am out and covered up with a smock to play with Harrison.

I am impatient and a little nervous about the results of the testing on October 7th. All my counts have been great. I haven't had any transfusions since the first weeks after the transplant and this augurs well for 100% donor chimerism on Oct 7th. I'm sort of keeping my emotions tamped down, my life on hold, in suspension waiting for that date and those results. I don't want to think about any option besides success. The medical team is optimistic and excited.

So I think I'm going to stop there and try to get into really living this day. Choosing a shrub, directing the work in my yard. Enjoy some time at my house. Get my head in a different place.
~Cathi

Some cheese to go with that whine?

It's been a rough weekend; and I'm not talking about football. I've had the runs, my stomach has been upset, sorta takes the git up and go outta me. and I'm going to whine.

My vision is blurry, my hearing not up to usual. This is the prednisone and/or dry eyes. I have some artificial tears which don't seem to make enough difference to matter. There is very little hair on my head so I wear some kind of hat all the time to keep from sticking to the back of the chair. Sometimes the hat is hot or uncomfortable or both. And I have hot flashes which make my entire back stick to the chair!

My feet tingle. This varies by the day and night. Sometimes at night the tops tingle so much it keeps me awake. It feels sort of like cold but more covers don't make it warm. I wear socks to bed and put a quilt over my feet. The extra weight from the quilt seems to help. But really it's better when for whatever reason, the tingling subsides. This is from the chemo and may or may not go away.

Food tastes funny. And it depends on the day too. Right now I have a new box of Christopher Elbow chocolates and chocolate does not sound good at all. The funny taste goes for drinks too. Water sometimes just will not go down. I switch to Gatorade or Crystal Light then. But still I can't seem to drink enough.

I have a lot of trouble sleeping. I'm nervous of too many drugs but I try a lot of different things to get some sleep. Sometimes I can't sleep because I'm sick--I spend a lot of time in the bathroom or something. Sometimes I just can't sleep. I try reading and crosswords but refer to the blurry vision (which also applies to the closed captions on the TV.)

I still can't seem to eat much fresh food without consequences in my gut. I got a new scrip today which seems to be helping but it tastes totally nasty. It's something mixed in corn oil and it's hard to get the taste out of my mouth.

My left shoulder and arm don't work right. I can't lift any real weight with it. I think this is because of the PICC line and the blood clots; the docs think there might be some damage to my rotator cuff, which of course can't be dealt with til this is all over.

I take a slew of pills. Granted this is much easier now than it was fresh out of the hospital. In reality I don't gag anymore. Nevertheless, I dread taking them just as much. The physical memory of the gagging has not gone away. Adding this oil stuff is just appalling.

My blood sugar is erratic. I'll be asking about that tomorrow. My blood pressure is high, and normally it's very low. This could be the current drug regime or it could be the prednisone.

I am still isolated and restricted. I can't go where there are crowds and dirt. Everyone who comes in here has to be vetted. I don't have much energy to go anyway. I am missing weddings and birthdays and parties and new restaurants and plays in the theatres.

And that's just how I feel today. Out of energy. I'm not out of optimism even though this is a bag of whining. My friend Sharlyne was here yesterday afternoon and spent the night and was good company. Friend Sally brought supper over with lots of treats. Brother Walt is coming to spend the night tonight. Sistah Trish is coming tomorrow and spending the night. I am sure that coupled with getting my gut settled down, these new faces will freshen my outlook.

normal is flossing

Friday again and I've not updated. I spent yesterday at the clinic unexpectedly, after two nights of diarhea. I was tired from being up at night, a little bit dehydrated, and just felt bad. But I got some fluids and some rest and feel like a new woman today.

I had to cancel PT yesterday so will reschedule that for next week. I have been doing the exercises though you can't tell it from any strength gain. sigh.

On Tuesday this week I saw Dr. Abhyankar and he spent a lot of time with me. He explained that this is how it is when taking prednisone. You work to exercise and the prednisone takes it away. It works on your hips and thighs especially. He said again and again "You are doing really great!" Reminded me that I had a tough time with the transplant (I didn't know any better) and that I am doing the right things by exercising and getting out. But it's hard to gain weight while taking prednizone (even though my face looks like the Pillsbury Doughboy.) He gave me a scrip for Fosamax to slow the bone loss from the prednisone.

Yesterday nurse Amy told me they expect patients to look like me, to recover slowly like me. Even though it seems very slow to me, it's what they expect. So all in all a good report. Just have to slow my expectations.

Now, about normal. Normal is flossing. I've been able to floss my teeth for a while now that my platelets are staying at 50k and above. Soon it will be eating anything I want. Someday it will be wearing clothes that fit. I'm a ways from normal but I have today and today's "normal."

My cousins and my friends are in Winfield this weekend at the Bluegrass Festival. Next year, when I'm back to normal, I'll be there with them.

Cathi

Normal -- YIKES!

I've been away from the computer this week mainly because I don't know what to say. I'm feeling pretty good, still weak, but no real pain. I had an odd headache pain last weekend that turned out to be lack of hydration but am drinking copious amounts of water now to make sure that doesn't happen again.

The blood counts are good. Actually the white count is even doing what it's supposed to. When I had the headache it went up to 10 and when it went away it went back down to 5 or 6, which is normal. Platelets are rising and hemoglobin is holding steady. All good omens.

I started physical therapy yesterday. It's going to take about 4x the energy to get results equal to a non-steroid body. I'm hoping that when I get to the end of the steroids that all the muscle work is just "there" like all the sudden my bottom will be round again. LOL

The nurses are all talking about "when I get back to normal" and frankly, it's scary. I've been sick and isolated for so long that I'm a little uneasy thinking about complete recovery and getting back to a normal life. Even though that is what I can expect at this point. It will be close to the end of the year again before I get completely free, and back to my own house and work.

I guess I'm also a little bit afraid to hope; to count on this. Even though it's the next logical step. and my position since I first got sick was to put my head down and do the next thing that's indicated. Count on the prayers and support from my family and friends and just do what's in front of me to do. Perhaps it's been so long that I need some retraining on what being healthy looks like and feels like. Perhaps a little meditation.

Meanwhile I have discovered Gordon Ramsay on the BBC channel and am enjoying the heck out of his shows. Mom is headed for Paris with a girlfriend next weekend for a week. I go to the grocery store about once a week, got permission to visit the Nelson, and walk the treadmill at least once a day.

So I'll try to update more regularly as I come to terms with "getting back to normal."

Hopscotch vs. Dodge Ball

Today is a pretty good day. I haven't slept all day like I seem to have the rest of the week. No clinic visit so I'm free to set my agenda. And my stomach is better, not so uneasy as it's been. I hope this is from the different drug that Dr. Ganguly gave me yesterday. It's one I took in the hospital that got taken off the list, but designed to deal with graft vs. host in the gut.

It seems like every day is a new day. Every day I start from the same place, no gains left from the day before. I'm only clocking 5 minutes on the treadmill right now. And sometimes only once a day.

Last night I wondered if it was just depression. Lethargy and disinterest that go along with that. Today I feel better. I started taking Effexor this week again. They prescribe it for hot flashes, but I'm sure I benefit from the anti-depressant action as well.

Food still doesn't taste right, or even good all the time. Drinks are particularly annoying. I'd love to have a nice diet coke but it doesn't even taste like coke. Juice and gatorade, neither of which is enough calories to matter.

So the card of the day was Hopscotch Days vs. Dodge Ball days. I'm looking for more Hopscotch days.

Yesterday I had a meltdown. I got on the scale at the clinic and it claimed I had lost 6 pounds. I started crying and pretty much didn't stop except when I was sleeping. I have been feeling so tired and just not great that it all came crashing in. I have been diligent about protein drinks and shakes and was confident that my weight would be inching up. I took a bed for the day instead of a recliner and just cried it out. I made an appointment to go back and see the psychologist yesterday afternoon.

So the psychologist marvelled at how far I've come and said I was doing all the right things. I vomited on the way home, and again last night. And the blood work returned a positive for the CMV virus. After a dose of antibiotic last night I felt like a new woman today. Nurse Wendy says the CMV is the reason I felt so low and I think she's right.

The nurses at the clinic knew I was feeling low and they were lined up to give me a hug, tell me I was doing great, don't lose faith. How cool is that? They also universally dissed the scale...the problem is the scale. Weigh on a different one next time.

So from not moving from the chair for a couple of days, I got out and went to the grocery store today. How sweet it was. I bought myself some candy corn to celebrate the season. And some other junk food besides Heniz 57 sauce which I haven't been able to get on Mom's list for several weeks.

The psychologist told me to do everything they tell me I can do. So walk outside, go to the grocery store. The trouble is they give and they take away these privileges. It's hard to know what's okay to do...but the grocery store was fun.

Today the world doesn't look so blue. It's still a very long recovery ahead, but just feeling better makes it easier to climb the stairs. I downloaded an iTunes playlist for a cocktail party. I'm going to see how that makes me feel while walking on the treadmill.

~Cathi

Dip and Sway

Tuesday felt more like a crash than a dip and sway, but I'm trying to stay realistic here. I woke up early in the clutches of the toilet with a low fever. Spent the day at the clinic getting fluids and TLC. Had to make a run to the hospital in the afternoon for a ct scan of my abdomen. Conclusion? no more fresh tomatoes. We followed all instructions for washing and peeling, and oh they tasted soooo good. But my stomach objected.

However the day really took the vinegar out of me. I've been sleeping mostly since then. Finally got on the treadmill for a few minutes this morning. This afternoon I'm just hanging out in my room, catching up on correspondence. And watching television while browsing the internet for useless information.

No infection is a good thing. Not only did I escape the consequences, but presumably the bone mararow is doing some work like it should be. I'm going back to the very careful, everything cooked diet for a while. There is time to get adventurous.

Meanwhile a couple of friends have kids with swine flu! All I had to worry about when I went off to college was the "freshman 15" but these kids are confronted with a nasty variety of the flu. And my doctors are insistent that I see no one who has been exposed to it. Knowingly. They wouldn't give a time span for clearance, nothing. "Just say no" I suppose things will ease up when the vaccine is finally available but that won't be for a while. They have been worried about it since it surfaced last spring.

I have been spending a lot of time thinking about life after isolation and wondering how it will be. Lonely at my house with no dogs. Stay out of the sunshine: sometimes interpreted as stay out, others as don't get burned. And wondering how long before I stop looking over my shoulder or worrying about every cough. I know that even once I am "released" that I will still have frequent visits to the clinic for the first year. I don't know how my re-entry into a regular life is going to go. I promise it's a little intimidating right now....balance or no.

I distract myself with things like "should I remodel and get laundry facilities on the 1st floor? Should I buy a loveseat or a short couch for that room? what's the difference? What about kitchen chairs? (I have none...I gave them to Mark when he graduated thinking about the big furniture shopping spree I would be going on.)

Cathi

Uneventful Clinic Visit

I waited til today to post so I could tell the results of my clinic visit, but it was pretty unremarkable. Everything status quo. I start tapering off the prednisone, but very very slowly and I will be on it past the 100 days. This suits me just fine. I am not about to complain.

With the "mini transplant" protocol that I had, even though the preparation this time was stronger, the risks are higher than with a full transplant but they gradually taper off to about the same over the first 6 months. So I'm happy to have everyone watching closely and happy to keep taking the drugs.

The clinic was not horribly busy this morning either so I had a chance to visit and catch up with some of the nurses and that was fun.

Debbie spent the weekend with me while Mom & Dad played with their kids and grandkids. They got to spend time with all the youngest grandkids, Walt's 2 children and Rhonda's 2 children and Lori's 2 youngest children. Everyone seems to have had a great time. Rhonda and kids stayed at Walt's house, M&D at a hotel.

Debbie cooked and cleaned and looked after me and I gained 5 pounds. We had good conversation and watched TV. Didn't leave the house. I had company on Saturday which wore me out but I slept very well Saturday night.

I feel good today. I remember waking up in the hospital day after day not feeling great at all and wishing for just one day when I could wake up feeling better than yesterday; now here it is. I have very little stamina, but feeling good goes a long ways. The doctor said this morning that I am good enough to be left alone for short periods now. I can get up and down and around by myself. I forget to count my blessings sometimes. Last summer I couldn't do any of this.

~Cathi

TGIF - Day 53

Back to the clinic this morning to see a provider. They were all absent yesterday! My counts were good, my weight was up and I got more privileges.

I can go to the grocery store if I wear a mask and go when it's not crowded.
I can eat take out food.
I can be outside with sunscreen and a big brim hat.

woo hoo! I haven't been in a grocery store in so long that is going to be a real treat!

I have chipmunk cheeks and chicken legs from the prednisone, but feeling good goes a long way. And besides I don't look so thin and poor. They will start tapering me off the prednisone next week. Hopefully none of the side effects in my gut reappear. Dr. Abhyankar was pleased with my progress. I have given up one pain patch and he suggested I might be ready to give up the second one. I'll see about that when the time comes.

Mom has just returned from the lake house and is making plans for the weekend when Debbie is coming to stay with me. I've done one trek on the treadmill and I may or may not do another. I'm looking forward to some different company for the weekend.

Just keep on trucking.
-Cathi

Feeling better

Today I felt noticeably better. I don't know if it's actual improvement or if it's due to cranking back up the prednizone but I'll take it.

Yesterday the full effect of the new dose of Prednizone kicked in and I was weepy all day, then didn't sleep good last night. I imagine sleeping is going to be the toughest part of this drug regimen. Fortunately the regimen includes other drugs for sleeping and relaxing and so on. Speaking of drugs, they are getting easier to take also.

This morning Dad and I ran errands and we went by the clinic to get some flushers (PICC line has to be flushed daily and we just ran out of supplies.) I stopped and weighed and I've gained 1 3/4 pounds since Monday. That felt great.

A scouter delivered some chicken and noodles Tuesday evening for supper and it tasted fabulous! Thank you Carolyn. It was the first thing that tasted good since this last round of chemo.

I've been able to do a few exercises on the Wii, and am still treadmilling. I'm not sure I'm ahead of the muscle decline but I'm doing my best. I'm traversing the stairs several times a day but still claiming a bathroom on the main floor.

I have really enjoyed everyone's comments on the blog about Hayward. This morning I remembered that now I can plant Black Eyed Susans in the backyard! I would plant them and he would eat the seed heads every year and they never came back. So perhaps I will have a new cutting garden next year.

So I feel more optimistic today. Looking forward to the clinic visit tomorrow to hear what the docs say. I'm only at the clinic twice a week now, typically Monday and Thursday. Hopefully we can keep it that way. So yes I have time to fill and so far I've been using it to plow through 7 weeks of personal and business mail.

This post seems a little disjointed. I'll blame that on the prednizone too.

Course Correction

The fever finally broke last night and I got a good night's sleep and have been up most of the day today. In my chair or on the couch, but awake.

I went to the clinic this morning and saw Dr. McGuirk. He took me off the daily antibiotic ramped up the prednizone again. He says what is going on in my gut is definitely graft vs. host and it's too soon to let go of the steroids. So instead of taking the last half a prednizone this morning, I took 6 of those babies today. Since I'm not sure how I feel now, I don't have any idea how I'll feel when this all kicks in.

So this changes the game plan a little bit. We're happy to have some graft vs. host, but internal gvh is the toughest to deal with. It takes some GVH to make a transplant stick and last time around I didn't have enough. So the protocol this time called for several changes designed to incite GVH. One was to wean me off the immune suppressant drugs earlier which we won't be doing. I'll be taking those drugs for the entire 100 days. They are the primary reason I must continue to be isolated.

I walked on the treadmill today til my body said I was finished. When I walk for only 2 minutes that is less walking than a turn around the hallway at the hospital. It makes me want more. I also need to get the Wii Fit into action again to work on my balance. Dr. McGuirk said the prednizone weakens your thighs quickly so it's important to keep up the working out.

I have eaten tons today, I swear. Constant eating. When I consider that nothing tastes like it should, this is a real accomplishment. But I must gain weight. Protein, protein, protein. Thank goodness I like beans.

Life is dull but comfortable. I don't have much energy but I'm not bored. I cannot remember if I have been here before--perhaps you guys can remind me. I just trust that as I gain more energy I will regain interests.

Cathi

Speedbump

I have been running a low grade fever since Friday afternoon. and sleeping.
Yesterday I spent all day in the hospital outpatient area getting fluids and tests.
I am taking seven days of an antibiotic, starting yesterday.
and sleeping.
so that is why you are not hearing from me. I can barely stay awake long enough to eat.

Never Underestimate Cathi Maynard

Dr. McGuirk came into the exam room at the clinic today with a new slogan. "Never underestimate Cathi Maynard" I like it.

I went to the clinic, promoted to the "exam" area. But I still had to enter through Limited Access and so I saw all my friends. The counts are all good. Dr. McGuirk was pleased. He encouraged me to just do 2 minutes on the treadmill. I do not have to return to the clinic until MONDAY. I must begin thinking seriously about what to put back into this empty life.

So I have been downstairs twice today and completed 7 minutes on the treadmill. It seems like a big deal to trek down those stairs and then back up but really, it's less time that I spent walking in the hall at the hospital.

However, going up the stairs requires muscles I haven't kept in shape. Think of picking up one foot to slip it into a shoe while balancing on the other. I'm not so good at that. But I've also been upstairs at least twice today so the strength will come.

Life at home is TIRING. Everything I do wears me out. From going to the bathroom to getting a drink. I'm wobbly at unexpected times, including carrying things. I don't nap very much but I'm sleeping good at night.

I'm eating a lot, but still with the help of regular Ativan. "Ativan is our friend" is a mantra amongst the BMT staff. I have a few more days of steroids and I am looking forward to getting away from those.

Mom keeps producing little bags of stuff to deal with. Mail, bills, cards, etc. I get through one pile and another one appears in my chair. 7-8 weeks of catching up is going to take some time.

Meanwhile no changes in the plan for a while. A friend suggested Rogaine to encourage my hair to regrow. Anyone know anything about that?

Cathi

Kicking back at home; and a big surprise

I finally arrived home about 5pm tonight and have been eating ever since. Little things. But it's different when you can browse the cabinet or the fridge and choose a little of this and a little of that. I ate beef soup for supper which is the first real meat I've had in several weeks. I sorted out the new list of pills and swallowed them all without immediate mishap.

I confess the pill taking seems to get harder and harder. I was delighted to double check the list tonight and figure out that one pill is only once daily and I took it this morning. I cut them up. I take them with applesauce or jello. I do my best and trust that the process will get easier. After all, I haven't lost my cookies for several days now.

Dr. Aljitawi came in this morning and before he said "you are for sure going home today" he said "your chimerism is 100% donor." I went sailing out of the bed and danced into his arms and everyone picked up phones and took pics. News I was not expecting.

This means that my bone marrow shows 100% Walt cells today, at day 44. This is really great news. The next work to do will be to wean me away from the immune suppressant drugs and hope that Walt's cells continue to claim dominance and mine continue to be absent. That is what happens over the next 55 days, until day 100 post transplant.

Every question I asked was answered with "100 days." No eating out, no grandbaby visits, no parties, wear a mask. 100 days. The way I feel right now, it will take until 100 days to feel whole again. I am wobbly on my feet, my strength is just barely enough to get around by myself. I have some rebuilding to do. I will start short treks on the treadmill tomorrow though I suspect that by the time I get down the stairs to the treadmill, I won't have a lot of extra energy for actually cranking that thing.

Start small. That would be getting up the stairs to bed tonight. I am certainly way way ahead of where I was physically after my first hospital stay. I am still staying at M&D's house for a while. Frankly, the idea of moving to my own house and living on my own again is a little bit scary. Or terrifying.

I have enjoyed a day of celebrating, but I understand that it's head down for the next 55 days so I'm getting my mind set. I'm going to be a winner at the end of this.

And because I need to know. the 100 day target.
October 8, 2009.
That's the goal.

Finally, I don't even go to the clinic until thursday and when I go I will be up front to see a provider. I won't be in the back getting treatment with all my friends. This is going to be really strange.

No pole - no transfusions

No more pole as of about 6pm this evening. I'm free, sorta. I can put both arms in the sleeves of my jacket. I can go to the bathroom without dragging the pole or worrying about unplugging it. Without unwinding tubes from the bed rails or whatever else they might be snagged on.

Yesterday morning they disconnected the oxygen and I've been comfortable without it.

Sometime over the weekend the IV nutrition was discontinued and I am gradually eating more and feeling less nauseous. I still wish I could pick up an ice cold glass of something and swig it down and have it taste great. Unfortunately things still don't taste 'normal.' Interestingly, the IV nutrition causes nausea and vomiting.

Sunday, Walt made a big chart on the white board that we called the "anti-vomitometer." It ticks off the hours without vomiting. I am now close to the 36 hour goal that we had. (Well there is only room on the board for 36 ticks.) No vomiting in 36 hours. I still keep the barf bin very handy but the peanut butter crackers this evening taste the way I would expect them to taste.

I haven't had a transfusion of blood products for 3-4 weeks. A date I didn't think to mark down. but basically I am transfusion independent.

And the goal now is home tomorrow. I've been cautioned to not get too excited and set on going home tomorrow, but I am so ready to be outta this joint.

A friend made an observation this evening from her own cancer experience. When she was diagnosed, she put her head down and did what had to be done and didn't think of anything else. One by one she completed the chemo treatments with spirits intact and not a lot of help from her friends. Because she didn't need it.

But when she went to the clinic for the last chemo treatment, the nurse came to tell her that they would not be able to do it because her counts were too low. Out of nowhere came torrents of tears and the insistence that they had to give it to her. The tears and upset surprised her totally. In hindsight, she theorized that she was holding herself together according to the plan but as she anticipated the end of her treatment her self control loosened because she wouldn't need it so much.

I can put this theory on my shoulders and feel comfortable wearing it. I have held it together, aimed straight ahead, done what had to be done and now as the end gets closer my grip is not as tight. I am crying more. I am not so afraid I think as just anxious. I am ready to go home to bed and just let go. Just be me. Not a cancer survivor or fighter. Just me.

I want to get a pedicure and have my eyebrows waxed. I want to take a bath in a tub. I want to get some paddling gear out and float for a couple of hours on a river. I want to go see "Mamma Mia" at Starlight theatre. These little goals have gradually moved into spots that were filled with go to Italy, visit Vermont, spend 2 weeks in Chicago getting to know Harrison. First the small ones. Then later, the bigger ones.

See you on the other side.

1 forward, 1 back

Marking time in other words.
I slept in the recliner last night, or tried to. Not much sleep but I did manage to get by without painkillers. I have a new Fentenyl patch which seems to be dulling the pain, or else the pain is improving on its own.
Today I have slept several times. A first this week, day time naps. I hope that I will sleep tonight and wake up a new woman.
I have eaten a little bit and not thrown up very much. One pill to be exact....but have kept down quite a bit of food.
I think the keys right now are sleep and food. I must get food to start staying down, including pills. Mom has been reading to me the "Guernsey Literary Society, et al" It is entertaining and she is a good reader. Besides just absolutely beautiful to watch.
I think I have the steroid psychosis on the run, or I wouldn't be able to sleep today. Had a web cam session with Harrison today. I look like a really sick old woman, to my dismay but I think the session was at my worst point today.
I have walked several times today. I'm very weak, but still making progress. My oxygen is about down to zippo but I still need it. The lungs are just not quite pulling enough on their own.
And that's the news that I'm fit to reveal. Except perhaps to tell you that Dr. Aljitawi and I had a happy hug when we saw each other this morning.
Cathi

An Inherent Distrust

Welcome to my 42nd day in the hospital. My 42nd day of a 5-6 day stay. Things seem to be going along okay, aside from a little steroid psychosis today which coupled with Hayward's last day brought forth gallons of tears, no matter what I was doing.

This morning McGuirk came in and began a dialogue with me "now we have a problem coming up here." (This discussion followed the usual back and forth about diarrhea, vomiting, eating, drinking and pain levels.) McGuirk made several appropriate changes, notably to the pain killer. Last night I took some Dilaudid about midnight and threw up within 2 minutes of getting it in my IV. So we're changing the pain killer. Back to the Fentenyl patch I think; I haven't been lucky enough to get there.

But back to the dialogue and the problem coming up here. The problem is that McGuirk is going back to the outpatient clinic to do rounds for a couple of weeks. And the next thing he said was "I have an inherent distrust of you and Dr. Aljitawi together." LOL I laughed and said it was because I love him, but I love McGuirk too. McGuirk made me promise to not leave the hospital til at least Monday. He needs to get some more results from the Endoscopy, which we hope shows a little bit of graft vs. host and will account for this annoying pain in my right side.

So I will get to see Dr. Aljitawi next week, well beginning tomorrow. And I am sure I could talk him into sending me home, but I won't.

Meanwhile Hayward went to the big doghouse in the sky this evening. Mark was in OKC and went with Shane to put him down. He said when the vet brought in the sedative, Hayward lifted up his head and wagged his tail. The vet said that was a sign of a well loved dog. Shane said they were going to go buy a bag of soy nuts and eat the whole bag. I introduced Charlene to soy nuts when she was in Kansas city one time, but Hayward ate the entire 1# package out of her suitcase. I reminded Shane and Mark that he also ate an unnamed friend's knickers right out of her suitcase too. ewww uyuck!

The nurses here have been more than kind, giving me lots of hugs and love and asking for stories about Hayward. My niece and nephew, Caroline and Anthony created some fine pictures last summer with the dogs in them and they are hanging in my room here at the hospital. My apartment really.

I have some new steroid drugs to take that are designed to protect the digestive tract without filling my body with mood swings. However, one tastes like Castor oil. I swear. It is really gross. Walt brought me some Coca-Cola to chase it with but there is still an aftertaste.

A couple of early Hayward pics. One where Mark seems to have him in his arms, and one of my children at the time we got Hayward adding a little perspective.