The Grands

Fonel and Dindley are what my two oldest grand-children call each other. They are 6 months apart, 3 and 2 1/2 years old, and intense competitors. Sunday they came to our house for lunch. Fonel with his parents and sister; Dindley's mother would come after work in the afternoon.

Dindley stayed at our house the night before because her Mom had to get up for the early shift. She turned a bar of soap into a security object after her bath, carrying it around and sleeping with it. We didn't let her take it into church the next morning. The bar of soap waited in the car, but the minute she got back to our house she rarely let go. When Fonel got here, he immediately lusted after her soap bar and so began many skirmishes - including pushing, shoving, roars of rage, and baring of teeth. We had reprimands, we had times out, we had counting, we had apologies.

I should explain that in our family there are "sharing" objects and there are special "non-sharing" items. The purpose is to teach children to share and to respect boundaries. Since we aren't Communists we think boundaries are important too. We had explained to Fonel that the bar of soap was a non-sharing item (It was functioning as a mother substitute after all!).

After lunch while we were chatting over coffee with all our guests, we heard a roar of pain. Fonel had stolen Dindley's bar of soap and in a rage Dindley had clocked her cousin on the head with a mini hot pink dumbbell (she likes to carry that around too), trying to commit sobrinuscide* in defense of her "mother," the bar of soap. The mercy was - no concussion or broken nose. Once this was all settled, I asked Fonel if he would like his own bar of soap to lug around for the rest of the day (Granny has a duh moment). "Yes," says he. So I gave him one. I suspect his bar of soap meant, "I'm now equally empowered." They ran around the house cheerfully for an hour and abandoned the soaps when they left for home.



I just don't know. I was so glad when she quit lugging around an oval lump of granite that she called her "baby turkey." I was afraid she'd drop it and break her toe. So far some of her security objects have been a lump of granite, a pink puppy, a nutmeg grater, a baby doll, a pink dumbbell, and a bar of soap. I hate to think what she'll choose when she's 5. Poor Fonel.



Then sometimes they see each other and run, shouting, "Fonel!!! Dindley!!!" and the result is this photo.

* I just made that up. It means "maternal cousin" + "kill" in Latin.

Despite What I said in the N'Awlins blog

I have to briefly eat my words. When I got back from Atlanta I spent one week recovering and two weeks sick in bed. When I got back from New Orleans, I spent two days recovering and 6 days in bed. Sigh. Being immune compromised does have its drawbacks; it takes me forever to kick sickness. Hopefully I'll kick this thing soon. I'd like to focus on Advent and Christmas a little.

I Have Insurance!

I now have expensive High Risk insurance with a lifetime limit of $1 million dollars and a deductible of $5,000.00 a year for health care and $2,500.00 a years for meds. It's strange what we get excited about, isn't it?

My Winter Face

I thought you might enjoy seeing my winter face. Mom had pneumonia at the time and was joining in the effort to protect me. This was Christmas 2006. Happy Advent everyone.

From N'Awlins

I was thinking the other day how this blog does not accurately reflect my reality. Because it is mostly to update kind and interested people on my cancer story, it generally focuses on that topic and as a result I hardly write in it because there is not much news (Great!).

I thought that I would let you know that 90% of the time I actually forget that I have leukemia because it does not currently affect my life very much. It does make me tired and I can feel a bunch of little marble shaped lumps in my armpits and I get sinus infections and yeast infections more often. Every once in awhile I hit a wall of huge fatigue and have to go straight to bed, but that is about it. Oh yeah, in the flu season I have to walk around with a big blue or yellow surgeon's mask over my face to protect me because the flu could kill me.

Having this leukemia is living with a big question mark over my head and I could obsess about it. But since I have no control over it or answers, I choose not to worry about it and to get on with life. Worry is corrosive and useless. I choose grace.

When blood tests come up, my heart beats faster for a few days, but so far I have been remarkably stable and I am very grateful.

Meanwhile, I am sitting on a balcony in the French Quarter, freezing my toes and my nose so I can get wifi coverage, listening to calliope music wafting over the rooftops from the river boats. Behind me, 3 buildings away, is where our friends, Billy and Brenda, lived until this past Saturday. It is strange to see no lights up in their apartment and it is making me miss them. But we get to spend Saturday with Mike and Terri while we have our board meeting to discuss their hopes for StreetLevel ministries. That will cheer me up.

Please have a wonderful Thanksgiving.

I am hoping that when I get home from this trip it is not too late to prune the wisteria vine climbing over my front door. We often get a huge freeze with snow or ice rain right after November.

That Blasted Insurance

The hunt for insurance is progressing. I had help from an elder at church who has also been uninsurable (What a silly word! As if anyone is "insurable"), and we're grateful because he directed us towards an exceptionally helpful agent. We are applying to the Missouri Pool which it turns out is Anthem Blue Cross Blue Shield High Risk insurance. Expensive with a large deductible, but it will give us some protection from major disaster. Every time I look at the requirements I find another document that I have to dig up so we are waiting on those to come through to finish the application process. I technically have until December 2 to get the application in the mail, but I'd be more comfortable doing it sooner. It turns out that I might be able to keep my doctors or some of them.

It looks like the insurance won't be active until January first so we decided to postpone my check up at the oncologist until January when the cost will be credited to the deductible instead of being tossed into the wind. As such, I won't have any blood counts etc. to report until January.

Thanks for your unflagging concern for my well being!

Just Hello

It's time for an update, any update. I am in hot and steamy, despite the bad draught, Atlanta, GA. Mom and Dad had a car accident and we decided it would be best for me to come here and finish packing the house to prepare them for their move to the retirement duplex.

My oldest daughter, with her spouse and two progeny, came for a visit of a little over a week. Her little son loves to drum anything that will make sound. So he drummed for most of the week - he loved drumming two boxes and banging on the fire screen with his elbow in between which made a nice clash. His sister mostly sucked quietly on her fingers and watched all the activity.

I don't see the Doctor until November, but so far I do not have large bulbous lymph nodes so that's good. I am up to a count of 30 slowly enlarging nodes, but they are all still small. The rest of me still feels fine.

The biggest issue that we are working on is insurance. The laws have changed in Missouri and I am apparently "uninsurable" despite having faithfully maintained our insurance status all these years. No insurance company wants to risk the odds of my leukemia and my chronic asthma as pre-existing conditions. This means that I will supposedly be kicked into the Missouri State Insurance Pool which was designed for uninsurable people like me. This will be bad coverage at a steeper rate and I will lose all my current doctors; it also comes with a lifetime cap of 1 million dollars per person. This sounds like a lot of money until you contemplate the fact that bone marrow transplants cost between $500,000.00 to $1,000,000.00 and that is the only known cure for this disease! I think my asthma meds alone will reach the one million cap in a few years (joke).

So we've been wrapping our heads around all this, trying to figure out what to do. Is there anything we CAN do? We're busy exploring all our options. It's impossibly ridiculously complicated to figure out the possible contingencies when there are so many unknowns.

*********

It is now October and I am home. It was an exhausting, but happy, 3 months in Atlanta with my parents and with my sister dashing over from Birmingham whenever possible. Mom and Dad are well settled in the Retirement Community. It has about 4 villages composed of quadruplex apartments, a village for children at risk, an assisted living apartment building, apartments for HUD housing candidates, a nursing home, and a hospital. So about a community of 4000 clients and staff. There is beautiful Georgia landscaping all around and a wildlife manager to boot. People have been very friendly and helpful to Mom and Dad.

Claire and I have cleaned out the house; it looks clean and repainted, but not spectacular. I keep fantasizing about going back down with a group of people and doing some work to make it snazzy. As you can see I had a hard time leaving... We are hoping for a miraculous sale as Mom and Dad need the money.

We've been tackling the insurance issue and we may have found a solution - it's called high risk insurance and is expensive, but we can carry it for now. Meanwhile, John lost his contract work. Since most companies do not hire between November and March we are looking at a possible long dry income free spell. Something more to pray about!

I told John that we are in an unusual place with very little "security" in our lives. It is oddly liberating, but it also causes a few nights of tossing and turning. We are looking for work anywhere in the US, Canada, or any other English speaking country (I didn't do well at teaching John French).

I am supposed to visit the oncologist on November 18th. We'll have to see what happens with the insurance. I'll update you on all that.

My Childhood Castle

For some reason I thought it might be fun to show you the castle where we grew up. This land and these buildings are soaked in happy memories. Here is a photo taken by a friend, B., right after the castle was recently sold to the village of Lamorlaye where we lived in France.

The castle housed an Institute of the Bible, l'Institut Biblique Europeen, created for the training of Protestant pastors and lay ministers from all over Europe, Africa, and some from Asia. The school was bi-lingual, French and English. Every class was taught in both languages. If students came from the countries with romance languages, they tended to study in French. If they came from Northern Europe or Britain, they tended to study in English. Africans studied in the language of whichever country had colonized them. The staff and faculty were also international. The school moved there in 1960 from a manor house in Chatou, a suburb of Paris. The village of Lamorlaye is an hour North of Paris near the town of Chantilly. The village is surrounded for miles by famous woods and trail.

The school was sadly disbanded in 2000-2001. The community lasted about 50 yrs. People living together, rehabbing old buildings, teaching, laughing, playing, rubbing each other wrong, resolving issues, learning to love each other. In this building they dug the floors out of dirt piles and stuff that piled up to the second floor, relaid warped oak floors, scraped burn marks off the floor where tramps had warmed themselves, carved replacements and repaired missing moldings and medallions, stripped, painted, put in sewers, heat, repaired plumbing.. They transformed the ballroom into a chapel, the private chapel (in the tower) into a bathroom, and the former carriage house into my mother's recording studio...

B. took the all the pictures except for the postcard and etching. I hadn't seen her in a very long time and she came to visit my parents' house last Winter during my visit. We laughed the whole time. One of my family's furlough years was spent in North Carolina where my two older siblings went to a VERY strict and legalistic boarding school. B. and I were in 6th grade together in a small little Christian School in town (actually I was in 6th, 7th, and 8th grade depending on the subject).

The very first day that I met her at her house, she challenged me to climb a tree. As you can see in the background of the picture, I grew up with many trees and did not consider this a challenge. When I climbed the tree, it made B. mad because she had never succeeded at it. So she took the garden hose and tried to wash the upstart out of the tree. Her mother was furious, but it was the beginning of a long and funny friendship. Later, when I attended that same VERY strict boarding school for 2 years, her mother was my guardian, there being no furloughing family anywhere near. They took good care of me and spoiled me by taking me into their home as many week-ends as were allowed; they also "adopted" my 2 room mates. B. came to spend the Summer with my family in France between my Junior and Senior year of American High School. Eventually, she and her sister attended the school in the castle so she has her own lovely set of memories. She drove by to take a few photos. a few years ago. She's now a sharp shooting Colonel Nurse in the U.S. Army. As such, she sees a lot more of Europe than I do. She could now shoot me out of any old tree...

This is the gate on the North side of the wall that curves around the front of the large oval lawn and driveway seen in the first photo. It is tucked behind the lilac patch that you see on the right in that photo. When the school first moved into the castle, we lived in the top floor of the long building on the right. The apartment was just behind those bushes. We went to school through this gate everyday.

In this photo, if you look at the top left corner, you can see that the fence is composed of tall iron bars, set atop a low wall (varying between 2 - 4 feet high) topped with gold arrows. My sister V. used to walk along the top like a tight rope walker, placing her feet between each arrowhead at 90 degrees to the bar.

Here's how the building looked from the back well over 200 ago when it was a luxurious home to French nobility. I copied this from a reproduction of an old etching.

Here is an old postcard showing what the castle looked like in 1962 with a dirt drive and fields between the highway and the castle, allowing a clear view. It looks like it was a warm scruffy Summer day.

This is what the castle looks like now from the national highway, with apartment buildings where there used to be fields.

And a statue of a race horse and jockey on a "rond point" blocking the view. Since I was a child I think that every intersection in France has been replaced with British style round-abouts. This is famous horse racing country and Lamorlaye used to have more race horses than villagers when we were growing up. The village sign used to read 366 Inhabitants, 1600 Race Horses. Up the road, near the castle of Chantilly (which houses many Leonardo da Vinci drawings and the Very Rich Hours of the Duc de Berry) there are famous fancy stables which the Prince of Conde had built because he believed that he would be reincarnated as a horse. Nearby are famous race tracks where royalty hob-nobs to this day.

Facing our castle on the other side of the highway is a training field for horses which is huge. From 5:00 A.M. to evening every day "strings" of lads and trainers would ride their horses from the hundreds of stables in our village to that field and take turns training.

Once someone hired a donkey and cart to give rides around the oval lawn of our castle at some child's birthday party. The donkey escaped and ran across the lawn, down the street, across the highway, and onto the training field through the tall galloping legs of highly bred horses. There was a string of children and adults screaming all the way behind him. I can't remember how we caught him. It was thrilling.

Thank you B. for the photos and the laughter.

Mercy

Sorry it has been so long; it's catch-up time. I'm behind on my life as usual, trying to be calm and not unhinged by this fact. To be specific I haven't visited with friends, kept up correspondence, or answered e-mails in awhile. Not sure when I will do all those good things, but I think about you a lot. Sigh.

After recovering from the Christmas season, I had a wonderful energetic Winter, forgetting for long pleasant stretches that I have a DISEASE. It was great. I stayed at my parents for a little over six weeks in January/February, sorting through my Dad's office (he had Minutes from 13 organizations going back to 1986), plastering walls (I love it. It was my reward for sorting the office), and other little stuff. Dad had always said that he sat on 7 or 8 boards. When I showed him my list of 13, he said, "Oh, I forgot about those." My Sister, C., was able to come over from Birmingham every other week-end and sometimes weekly (It is a 3-4 hour drive which is a "nothing" drive in the U.S.A.). Her apartment in my parents' house is almost completely packed up and she has been working on Mom's office etc. So we are making serious headway. My parents have put their deposit on a retirement duplex and are hoping to move in September 08. The house is for sale in a very poor realty market, in Atlanta, so we're looking for miracles. They need the income from it. We all had a good time together, and I'm hoping to get back and do some more this Summer.

After 6 months of no work, John finally found employment with a long term contract job at the end of April. We're working on getting the finances in sufficient order to weather the contract slumps. So he's continuing to be self-employed and in many ways this seems to be the best option for now. He's become a bit of a "repairman Jack" to various companies and re-organizes projects which have gone badly off course. He establishes a line of action, lines of authority, the concept of deadlines, and gets the employees back on task. He's never bored. Right now the project he is re-organizing is a doozy; he's been working like a mad man and is much happier.

My blood counts in April and in June have been rock solid. They have been almost identical for the last nine months and the red blood cells are in good health. So I again feel very blessed and happy with this development. I have been demoted to a "smoldering" version of the disease which puts me solidly in Stage 0 ( I know. How can you have a Stage zero? It's like women who wear Size 0 clothes. How can one exist at a zero embodiment?). So I have moved backwards from a Stage II, to Stage I, to Stage 0. Practically speaking, this means that I will only have blood tests every 6 months instead (as well as Doctor visits) of every 3 months. This is excellent news.

On the other side of the coin I have learned to take more seriously the CLL patient's propensity for infections. This Spring I have had 3 infections and my body has a hard time fighting them off, because of the high white blood cell count, which wears me out. Two were sinus infections and one was a skin infection. I'm learning to become more American and shower more frequently...! Watching the skin infection spin out of control was educational. Some of my lumpy lymph nodes have gone down (yeah) and some new ones have swollen up (sigh). It's hard to keep track of them, but they are all still on the small side which is excellent. I periodically palpate my body in search of lumps and try to keep a record of them for the Doctor. They don't count until they are the size of a kumquat. I have no kumquats on my body to date (three cheers).

Mayo Clinic has done a trial on green tea which has shown that it is capable of controlling this disease though not of curing it. This is the only supplement that my Doctor allows me to take (many other "immune boosters" increase your white blood cells which we do not want). I've been taking it for 1 1/2 years as well as drinking 2 or 3 cups a day. I really wonder if this is keeping my counts so stable. Whatever the reason, I am very grateful.

My Grand-Baby count has increased to three. The latest has a tuft of fluffy straight black hair and big eyes and fat cheeks. She was born in April to S. and J. She looks remarkably like her Mother did. Here are some photos of her and her big brother. If you want to see more pictures of that clan you can go to - www.ourbabybean.blogspot.com or click on the button in the right column which says, "2 Wee Monsters."






Here are some of Grand-Child #2, F. The middle photo is of G's boyfriend rescuing the azalea bushes at Missouri University in Columbia.





Our son, T., was accepted in the School of the Chicago Art Institute. We are proud of him for achieving this. Now he has to figure out the cold hard cash side of the equation. Here are some of his portfolio shots of his metal work with his photo at the end. The order is- arm scultpure (forged iron, found object, carved/dyed wood, copper and steel wire), dragon bracelet (forged iron), flower sculpture close up (forged iron), and rings (forged iron)







My Sister-in-Law is taking us to see Willie Nelson this coming week-end. He's an ornery old liberal Texan that we enjoy despite all reason. Thanks D.!

Love you all despite lack of succesful communication and I appreciate all your kindnesses. Mercy flows over us, K


P.S. 1 A few of you told me that there were some inappropriate blogs when they hit the "Next Blog" button on the bar at the top of my page. These objectionable sites are not allowed on Blogspot. If that happens again, please hit the "Flag Blog" button which will be on the top bar on the objectionable site and the company will remove them.

P.S. 2 If you ever want to know more about this disease, go the www.clltopics.org. It's a patient activist site that is packed with info, a lot of it is technical, but some of it is good basic stuff. This is such a common form of leukemia, especially with the elderly, that I wouldn't be surprised if you have other people in your life with it and this site is extremely informative.

More Good News

Hi Everyone,

I hope and pray that everyone had a wonderful and worshipful Christmas. J and I were in Baton Rouge, Louisiana, taking care of J's brother. We attended a Christmas Eve service at a Presbyterian church there. I confess to being simultaneously seized with the giggles and with joy at the end of the service when we raised our candles and all joined in Haendel's Hallelujah chorus. The joy came from the sheer delight of that wondrous music; the giggles came from a powerful tiny operatic soprano who managed to drown the 150 others of us who were singing. Afterwards we decompressed for a few days in New Orleans in the Vieux Carre with our friends in ministry there. We are always well loved by them.

My blood counts continue to be stable. My white cell counts, though still high, have not gone up, and my red cell counts continue to be rock solid and normal. The oncologist is very puzzled. He tells me that he has never had a leukemia patient with such stable white blood cell counts in 35 years of practice, apparently they normally bounce all over the place. I have developed some swollen lymph nodes in my neck and arm pit, but they are not yet large enough to be "officially" swollen. So the disease is growing but at a slow slow pace. I have been demoted from 3 month visits to 6 month visits/3 month blood tests which is a wonderful development. So we know ourselves to be truly and deeply sustained by your love and your prayers. Thank you.

We are finally having our empty third floor worked on. The ramparts, mansard roof, and windows are being repaired. The brick tuckpointing is being repaired and all the third floor windows will be replaced. The window facing the backyard will be replaced with a door.We are very excited about all this. We also had 5 junk trees taken down in the backyard and we had the old sewage system replaced. They had to dig out so much contaminated earth that we have put in a giant mound of soil to replace it. We are told that it will take two years for the soil to sink down into the long hole. It looks like someone blew up our formerly lovely garden and replaced it with a giant slug and a collection of weeds. Since the house is our greatest investment/entrustment, we feel the need to keep it in good shape, and we decided to use a portion of J's termination package from work to get all the work done. So there was one blessing from that event.

This has been the "year of the varmint" in our house. The new roofs will be a great help in our ongoing battle with pigeons roosting up there and pecking through the rotten parts. We also bought a few hundred feet of anti pigeon wire to ward them off. Our neighbors suffered a fire this Summer and decided to take the opportunity to do some badly needed updates. They dug out the old cinder basement floor (by hand with a volunteer team of 25 men and buckets and wheelbarrows. The source of the big free earth slug in our backyard) and went down two feet in order to install a modern concrete floor and plumbing. This is wonderful, but it disturbed the old rat tunnels that wind around under our 150 year old neighborhood and the varmints decided that our basement would make a dandy new domicile. We finally had the rats exterminated by the early Fall when we noticed strange scratchy sounds in our bedroom ceiling. Could it be squirrels again? We thought that we had conquered those last Winter. Happily thinking that we had one squirrel up there, we set out traps. We caught one, then another, then another... To date we have caught five and are working on number 6. The cat, however, is dong its duty with the mice and we think that they are gone. Varmints! Everywhere!

On that note, I will close.