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