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.