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If you’re of a certain age (I am not of that age, but I was always into “oldies”) you may remember “King of the Road“, a Roger Miller song which lists some of the woes of life on the road. “No phone, no pool, no pets…” is running through my head these days as we try to get our trac phone going, miss playing pool in the staff room and really miss having a cat that wants to get between me and my laptop and sleeps on our bed at night.

Filling out forms is a lot harder when you’re not sure what address to put – where you are temporarily, or where you’ll be (hopefully sooner, rather than later). Without our own, whose phone number do we give? Before Elena came home from hiking fourteeners in Colorado, her answering machine’s blinking red light eyed us balefully, daring us to push the button and risk disaster. Not being answering machine smart, we left it until she rescued both her and our messages on Sunday. It’s not that we don’t have a cell phone. We have two. A trac phone purchased for our

From Newton – La Junta

2007 cross-country bike ride to San Jose, CA and an Indian one purchased just months ago to give the doctors and hospitals and us a way to keep in contact. We were probably about the last Americans to get a cell phone – and – the last in India as well. That is not a leading edge of technology that we are on. There are more Indians with access to a cell phone than to a toilet. We bought two SIM cards there to increase the possibility of getting coverage. Yesterday, trying to reactivate our trac phone here, we discovered it has an outdated SIM card. Here, its not something you can just go buy in the buzz (bazaar) for less than a dollar. Here, the company has to send us one. In the meantime, we do listen to messages on Elena’s answering machine, er, she listens and we get the message…

While we missed the big Kansas heat wave, if we had been here all summer, our backyard pool would still be up and a quick dip before bedtime would help in a mostly un-air-conditioned house. Here in the country, the wind has blown through the house every night to the point where we’re adding a light quilt before morning. The other kind of pool we’re missing is the daily shoot-out in the staff lounge at Woodstock. A great way to let off steam is to hits some balls as hard as possible. I seem to have perfected a technique that allows the cue ball to jump its target and land on the floor. Even so, I’ve managed to beat Dave a couple of times. Not often, but occasionally. There are quite a few staff who play. It’s interesting to see how quickly new staff have gotten sucked into this little routine played out every day during the lunch hour and afternoon tea. There is quite a bit of etiquette involved, a graciousness with newcomers, and an unwillingness by anyone to hog the table.

Vandana was the Queen of women players.From 2009 Staff candids

Ajay, who came to Bethel for two years.  From 2009 Staff candids

Dave and Judy. From 2009 Staff candids

We are animal people. From the dogs, cats, ducks, chickens and calf in Newton, to the dogs, cats, chickens, goats, donkey -and- monkey in Chad and both times – cats in India. We’ve always had pets. From Kitties

Last summer, we left behind wonderful cats, our alpha mama ended up on a farm and our shy, darling lilac-point Siamese ended up at the pound in Wichita. This summer, we left behind a very affectionate tabby that we had just gotten from departing staff. I haven’t done the “research” yet (Google and I are friends), to see if there are serious concerns about having pets while immuno-suppressed. The only thing we’ve seen so far is that I shouldn’t clean out the litter box. No problem, I’ll be happy to leave that for Dave.

He’s found a couple of cars to check out in Wichita.  Just now, a hawk landed on the garage roof outside Elena’s dining room table.

2010-09-01

I’ve put off our walk until evening in order to get to this. We brought home dirty rugs that I’m now trying to wash in Carol’s front-loading machine. If I’d washed them in India, they wouldn’t have been dry until mid-September, and thoroughly mildewed in the meantime. Our renters are having trouble finding places and figuring out what to do with their stuff – and their lives. Our coming home in an emergency has not been kind to them, though they are being kind to us and trying to be accommodating. It sounds like they will not be able to be out in time for us to move in over labor day weekend.

I need to possess my soul in patience and relax – while frantically filling out forms that will help get my medical treatment paid for. Hopefully.

Pray for our renters to find places, for the chemo to work and lead to a successful surgery on Sept. 28th, for Dave to get a job (with benefits) and/or for me to be approved for disability and medicaid.

In the meantime, the sun is shining, my husband loves me and I’m feeling okay today.

Peace,
Cookie

Yesterday, he says (in his normal voice), “Would you set the table please?”

He expects me to carry two plates from Elena’s kitchen to her dining room? And – two forks? And – two glasses? Not only am I now expected to go for a daily constitutional of not less than 1.5 miles (preferably 2-3), but, I will now be expected to start acting “normal”, and do something besides show off my shaved head and blog about it. This is the man willing to (literally) give his right arm for me – asking me to WORK. Has he forgotten that I am deathly ill, that I might, in fact, have to die???? No, he just wants me to have some balance in my days. And honestly, he can’t do everything.

I’ve been up since before 2 am. I have swept the downstairs of Elena’s house and washed the dishes. This has been the normal division of duties: Dave cooks, I clean. I’ve left shaking the rugs, washing the sticky kitchen floor and cleaning the bathroom for him and retreated to my computer to write about it, I don’t feel THAT good. Wednesday’s full night of rest must have been an anomaly, ’cause here I am again at 5 am on the computer.

I got the key from Elaine and stopped by our house in the afternoon. I wanted to see the inside and have time to “adjust my expectations” on what needs to be done when we are able to move in. Dave absolutely did not want to set foot in the house until the renters are out. He went to buy grape juice (good for me) and I saw what my house looks like – with a couple of single guys living there. They are our second renters in the year we’ve been gone. In part, because we’re generous and in part because we didn’t have time to get everything packed up, our renters (all have been young singles, fairly fresh out of college), have been using our pots, pans, lamps, ironing board, and even the afghan on the sofa. Our spice jars are still on the shelf, as is our antique kitchen scale. I had forgotten, how big of a mess we had left in our rush to get to India after the basement was done. In a moment of madness, we went ahead with plans to put a basement under our house in the six weeks before we left.

Putting a basement under our house

Madness. But – a place to store our stuff. So much stuff… And, we brought home more?

Last night over dinner with Mike and Cindy, we exchanged cancer stories with Jeannie and Gordon. Jeannie has been able to maintain a holding pattern with her inoperable tumor for several years. Dave teased the cat, he missed the two we left behind in Newton and the one we just left at Woodstock. He is looking for a car – and a job. Today, he will call the Wichita School District to see if their perennial ad for math teachers means anything right now. A job with a school would mean getting on a group health insurance plan – which would cover me too.

I would dearly love to go to Final Friday tonight – at least to a couple of galleries. It’s the monthly art gallery crawl in Wichita for which we were diehard regulars, visiting a broad spectrum of small galleries and introducing everyone we could drag along to the delights of, (among many others) Fiber Studio, Blank Page and finally Tangent Labs as the last stop before heading home close to midnight. Leroy says this weekend is Yoder Days. I would love to see his family, as well as the Amish buggy races (which we participated in two years ago).

We could go chasing trains like we used to, we know where to go in Wichita to find the parked boxcars. Haven’t seen an actual train in Newton yet, but will definitely post any good graffiti photos as soon as. we have thousands of train graffiti photos, these are from 2008 Biking Across Kansas.

BAK train graffiti

My second chemo will be on Monday, the 30th. This may be the best I feel for a while. I don’t, of course, want to over-do it, but… I will – definitely – need a nap this afternoon, just in case.

Art, Artist & Audience: Final Friday

When people ask me “how are you?”. They are often a bit uncomfortable, as am I. What to say? Thursday’s answer:”The sun is shining, it’s not too hot, my husband loves me. What more do I need today?” So, go ahead and ask. I need to be asked and I need to answer.

I hear a different kind of owl and step outside. There’s a faint lightening up of the sky in the east. It’s 5:30 am, but because of daylight savings time, the sun thinks its only 4:30.

Peace,
Cookie

PS Went back to bed at 7 am and slept until almost noon. No nap necessary. Will call for results of blood test to see how vulnerable I am to infection before deciding on Final Friday.

Had my first appointment with Dr. Delmore this afternoon. We are both very happy with him. He has a great receptionist, Marsha, who dealt with my sister over the phone to set this whole thing up while we were still in India. She thought my sis was pretty great too! Said she knew her stuff. No kidding. Birdie was the office manager for a group of 20 doctors for over 20 years (tell me quick, Bird, if I’ve got essential info wrong…).

I will have one more chemo – Monday – and plan to have the surgery about a month later. The surgery depends on whether the solid cancer mass is move-able (detached) or not. It not, we’ll do another round of chemo before attempting the de-bulking/cytoreduction surgery. The estimate for the chemo is approximately $5,000 – less than we expected. This first one will be on us, as I won’t be through the application for medicaid/disability in time.

The final diagnosis on cancer type and stage cannot be made until after the surgery – from the biopsy. If it is endometrial, it would be stage four, as endometrial does not normally spread outside the pelvis. If ovarian, stage three. Possibility of “cure”? 25-30% if stage three. Much less if stage four. You know what to pray for…

Because I have already had one round of chemo, I do not qualify for any research trials at this point. My next chance for joining a trial would be after all treatment is finished, or if nothing works. Dr. said the pain just under my ribs could be referred pain from my colon – which may have trouble flexing due to that solid mass down there. Pain doesn’t necessarily mean it’s cancer in that location.

Nurse said I looked good with a shaved head, nice shape… Awright!!!!!

From Back home Aug 2010

I didn’t know my ears stuck out so much.

Got an email from a former Woodstock student in our advisor group. Said, “you’re funnier than I remember.” Love you R.J.!

We are replacing our very old kitchen stove, we had planned to put a new one in for the renters. Found a really great gas stove for half price at Sears. Does God provide appliances when needed?

Peace,
Cookie

Today, I wake up again at two-something in the night and come downstairs. My stomach is complaining and, as it resembles hunger, I eat a bowl of granola. I step outside in the full moon and listen to the coyotes’ enthusiastic chorus from the pasture. I decide to come back in, it’s been a long time since I’ve been a country girl.

I fill out the paperwork for my first doctor’s appointment this afternoon in Wichita. There are lots of blanks: Employment, Spouse’s employment, Primary insurance, Secondary insurance. I start the Social Security Disability application. “Please list any doctors, hospitals, clinics, therapists, or emergency rooms you have visited because of your conditions.” I skip the one that called it Irritable Bowel Syndrome and list the last four doctors I saw in India. Do you think Social Security will call them? “Please list any medicines you take and why you take them.” I list taxol and carboplatin as well as those to lessen the side effects. “Please list any medical tests you had or are going to have in the future.” I list sixteen, including three ultrasounds, an MRI, a PET, a mammogram, colonoscopy, fractional curretage (endometrial biopsy), omental biopsy, EKG and pap smear. The first two sonograms in May and early June are “normal”. I organize all of my medical reports in plastic sleeves by date, most recent on top, into a new three-ring binder. I notice that while, the earliest biopsy result is positive for endometrial cancer, my discharge from MAX Hospital lists my diagnosis as ovarian cancer. I remember that I need to take the actual x-rays, MRI’s and PET negatives and CDs, as well as actual endometrial biopsy slides with me this afternoon.

At a quarter after six, I step outside again. It’s cool, there’s an owl in Elena’s shelter belt of trees, near the road. Larry and Carol are up. The sky is lightening up, but the sun is nowhere near up. I debate going back to bed. Why do I keep waking up in the middle of the night? It happened in India before we left. There, I just got up and started emailing family and friends on this side of the world. Without internet, I find other things to do. I drink red grape juice and eat dark chocolate. I really, really wonder what Dr. Delmore is going to say. I wonder if it has continued to spread in spite of the first round of chemotherapy. I wonder what my “chances” really are.

It’s a glorious morning, the overnight low was in the 50′s – downright cool for KS in August.

When we were at Woodstock in the ’90s, there was a staff member who cut hair. When she cut mine, she said, “You’d look good with a shaved head”. Well, what do you think? Click on the photo to see it larger, click the link for the album underneath the photo to see the whole album.

From Back home Aug 2010

Off to see the doc this afternoon – will report as soon as we can.

Cookie