Merry Christmas

May you all have a very merry Christmas!

The Eve of the Feast of the Nativity of Our Lord

Have a blessed Holy Day! Many of you will be celebrating a vigil of this great feast day. I plan to attend the early Eucharist at the children's pageant this evening. I hope to see some of you there.

Because you asked: I must tell you that I have no real news concerning my health. Later in the week I should get the results of the tests from last week. No word yet. I do know that my optic nerves are still swollen. They are swollen (a) because it takes time for the swelling to go down or (b) because I still have inter-cranial pressure that is too high. The CT scan should give us a clue as to the correct answer.

I am so very grateful to be celebrating Christmas with my family and friends and to be returning to full health. I could not ask for a better present!

A Grace Filled Fourth Sunday of Advent to All

I did not attend worship services today. I fear I am still recovering from the Ordination service on Friday evening and my Son's Birthday celebration on Saturday. I hope to be with everyone on Christmas Eve! But for today, God bless all of you on this the Fourth Sunday of Advent.

Got a Ride!

A very big "thank you" to everyone who offered a ride. I will let you know how it goes.

More Rides Needed

One docs appointment turns into more. I have to be back at Baptist Hospital East tommorow at 2:20 p.m. Anyone available to give me a lift?

A great big THANK YOU to Carlile Crutcher for giving me a lift today.

Health News. Optic nerves are still swollen. I had to go to Suburban Hospital and have some pictures taken. I have to go to Baptist East tommorow and have a CT of the head. Oh, well. Just goes to show you that you can't always go by how you feel, because I continue to feel better each day.

Chas.

I need a ride

I have a appointment with my opthamolgist tommorow to check my optic nerves. Anyone available to drive me? It is at Baptist Hospital East at 9:30 a.m. I live at 124 Bayly Ave (not far from St. Mark's). Call if you can help--396-8183.

Perking Along

I vested for the Saturday evening worship service. The first time I have been in vestments since July 22.

I did not, as I had hoped, vest for the 8:00 a.m. and 10:00 a.m. services. I missed the 8 entirely and sat in a pew in the back for the 10. but my "experiment" was successful in that I know my current "energy level." I am better, but I am not yet "back."

I certainly could push myself and do more, but that probably would not be good for my long term recovery. So, I am trying to listen to my body.

I do believe the shunt is working and will return me to normal in short order.

I still, however, have not found a local neurosurgeon to take me as a patient. But I have not yet given up looking.

Chas.

Heat Pump Works, but....

Well, the fact that I didn't have heat on the second floor turned out to be no big deal. Easy fix. Now, if it turns cold I will not freeze. I count that a victory.

On other fronts, however, not so good news. The neurosurgeon who performed my biopsy will not do my post-op checks for my shunt. Says I should go back to Rochester for those. I am not happy.

Back from the internist

My post-surgical infection (staf) is getting better the doc says. Now if I can get the HVAC at home to work on the second floor....its always something.

Got to Church Again

I was able to attend services at St. Mark's again today. It was good to be in church. I have to go to the internist again to check on my infection. The office called on Friday with lab results they didn't like. With that said, I feel better than I have. I talked Mayo into letting do post-op in Louisville--if I can find a doc who will do it. I called the doc who did my brain biopsy. He should telephone me back on Monday. Hopefully, I will not have to make another trip to Rochester.

Visit to the Internist

Had my first post-op doc visit yesterday. Results: (1) abdomen incision is infected (I am now on antibiotics), (2) Internist wants me to go back to Mayo for post-op check. I had hoped to do all post-op medical checks locally and not have to make another trip. But my internist in Louisville was emphatic. Oh, well. Got to call Mayo today.

I went to Church

I felt well enough to attend worship services today. It was good to be at church. I slipped into the pew just before the service started and left after I took communion. I enjoyed seeing everyone. Maybe next week I will be up to coffee hour!

Feeling Stronger

I am feeling better each day. Each day the effects of the surgery recede a bit further. I am having to take fewer and fewer pain meds. The sites seem to be healing nicely. I am over the anesthesia “hangover.”

The docs were very confident that the shunt would deal with the symptoms of the hydrocephalus--I share their confidence. I can’t, however, verify that improvement. After brain surgery headaches are “normal.” Don’t really know what I am dealing with in that area. I am, however, assuming that the headache is surgery related. I will go to the opthamologist to take a look at the optic nerves and see if the swelling is going down. I will also be going to get a CT scan of the brain and see how the hydrocephalus is responding to the shunt.

The docs said that I would be my new normal in two weeks from surgery. So, next Friday I will report on the new normal.

Home

I'm back. We got in Monday evening and I went to bed. I feel like I have been hit by a truck. I do, however, feel better than I felt yesterday. I guess I was thinking that this surgery would be like the last one--but this has been different. the doc said I would feel like myself in a couple of weeks from surgery. I don't think it will take that long.

I have a great deal for which to be thankful. I will certainly be giving thanks tommorow.

Surgery

We are waiting in the hospital room for Charles to be released. He has seen the surgeon this morning and things seem to be going as planned. We are going back to the hotel room for the rest of the day and to spend the night. Charles is pretty tired. We will get up in the morning and drive part of the way home. It's going to take awhile because the doctor wants him to get out of the car every hour and walk around to prevent blood clots. We should be back in Louisville on Monday afternoon. I think we are getting out of Minnesota just in time because it is snowing this morning. They aren't expecting accumulation yet....Katherine

5:45 a.m.

Mayo called. I have to be at the hospital at 5:45 a.m. Better go to bed!

link to National Institutes of Health site

http://www.nlm.nih.gov/medlineplus/ency/article/003019.htm

If you want to read about the procedure, click the link above.

Brain Surgery

The neurosurgeon has suggested a particular surgical procedure to deal with the hydrocephalus. He will perform the surgery on Friday morning. Don't' know what time yet. As brain surgeries go, this one is pretty routine. We should know in a couple of weeks how successful it was, but the doc seems confident that it will reduce the inter-cranial pressure enough to relieve the papilledema, etc.

I will write more later when I have a time for the surgery.

Progress

Infectious Disease agrees with the uber-specialist. If I had an infection, its gone now. They are worried that if it was an infection that it will come back. But nothing to do for that except wait and watch. Hopefully, the meningitis part of this is in my past.

The neurologist also signed-off on Askimit's plan of action. Both have now discharged me to the Chair of Neurosurgy here at the Mayo. I meet with him, tomorrow to discuss treatment for the Hydrocephalus. I will know more about the treatment plan after that meeting. The most likely outcome--more brain surgery.

I will keep you posted. Meanwhile, I am going to get some dinner and celebrate progress. Waiting for a plan has been difficult for me. I am pleased to say that I think that wait is drawing to a close.

Uber-specialist's Opinion is in

My consult with Dr. Allen J. Askimit was today. He will be reporting his opinion to my neurologist, Dr. Swanson. He believes that I may have had a fungal infection, but that my body has already killed it. He believes I am dealing with the aftermath of having had a fungal infection.

I see the infectious disease doc tommorow--we will see if he concurs with Askimit. After infectious disease doc tommorow I see my neurologist. It looks like I may come home with a plan of action (I am more hopeful now than I was an hour ago).

Rochester

Round three. We are here safe and sound. Typical day for me--no better, no worse than usual.

I see the neuro-pathologist tommorow. Maybe he will have some new ideas as to how best to proceed.

Bloomington, IL

We are in route to the Mayo--again. We stopped for the night in Bloomington, IL. We will get into Rochester tommorow sometime.

I made it to the Colts game last week and made it through the game. My hat is off to David and Jamie Ramsay for helping William and I pull it off.

My father-in-law is back on Bayly Avenue taking care of my children. He has been great.

My first appointment is on Tuesday. I will keep you posted.

Cost of Health Care

Got my bill from Mayo for my first two visits: $18,000 and change. I am glad I have insurance. St. Mark's provides health insurance for all full-time employees. In my case, the parish pays the difference between individual and family plans on my wife's insurance policy. She works for the Commonwealth and doing it this way saves the parish a great deal of money. (The same coverage through the Diocese would be twice as much).

(1) I am grateful that the parish provides health insurance for its full-time employees.

(2) I worry about all those persons who are uninsured.

How do I feel?

All the medical mumbo jumbo to the side, people ask me, "but how do you feel?"

A great deal of the time I feel fine. I feel "bad" when I am having a headache. On a typical day I will have two to three headaches. My doc gave me some meds for the headaches, and it helps.

I often get dizzy and sometimes I loose sight in one or both eyes (but only momentarily).

I can't read very well, but I got a magnifying glass and that is helping a great deal. (When I can find it).

Sometimes lately I walk like I am drunk (but that does not effect the way I feel.

I am often fatigued. I sleep a great deal. I am really only good for one "outing" a day--then I have to rest. I over did it yesterday, and I had to lay in bed all morning today. But I "feel" better now.

I am in no pain (except when I am having a headache and only then does it get excruciating if I don't take my meds quickly enough or can't find them).

The absent minded professor routine I have been cultivating for years seems to be getting worse. My son gives me grief about it. He says, "must be the fungus."

He wants me to take him to a Colts game this weekend (his Pee Wee Football team is going). His mother was to take him, but he really wants me to go. David and Jamie Ramsay have agreed to drive us (their son Carter is also on the team). I am going to give it the ole college try. Wish me luck.

Tonight is Halloween. I tried to figure a way to work my brain biopsy scar into a costume, but it healed too quickly. Its not very scary now.

News!

Just kidding. We talked to my Neurologist. The last spinal tap, CT scan review, and biopsy of my eye turned up nothing new. More dead ends.

What they know: I have chronic meningitis, hydrocephalus, and papilledema. What we don't know is what is causing it. Can't treat until we know the cause. So, I only have meds for the headaches (which has helped manage the pain). But we are not solving the underlying problem. I haven't been to work since July 22. I had to go on short-term disability beginning August 14. I would really like to get back to St. Mark's. I miss everyone terribly. This whole thing is taking too long.

I am still to meet a new doc in November. He handles all the difficult neurological cases at the Mayo. Maybe he will be able to help. The Neurologist I am presently seeing began preparing me for another brain biopsy--this time they are going to want to attempt biopsy at the back and base of my brain. Procedure is riskier than the last brain biopsy, but they think they may stand a better chance of getting infected tissue.

Truth is--it is shot in the dark--but it may be all there is to do.

Chas.

Back Home

We got back into town Thursday evening. Bad headache day on Thursday, but I have been better today. Hard to believe that we have been trying to get a diagnosis since August 1 and we still don't have a diagnosis. But that is the way it is. I continue to be hopeful that we are going to get answers. I just have to be patient.

Day One of Round Two

7:30 a.m. Neuro-Opthamalogy & Biopsy of Eye. Not as bad as I feared.

Then I went to Infectious Disease. All tests from Round One were non-diagnostic (i.e., they don't have a clue). Looks to him like a Fungal Infection of unknown origin and type. He ordered more tests.

So I then went and gave blood (lots of blood--both arms, several vials and bottles). Then I went for another Lumbar Puncture. Not fun. Having had two LPs in Louisville and two at Mayo--I'd rather have the LPs in Louisville. I thought I was a detainee at Guantanamo Bay, Cuba for a few minutes. I confessed I was a spy.

Then I saw my neurologist who said "You are a puzzle." Bottom line: He is sending me to what Katherine is calling the "uber-specialist" in neuropathology. The neurologist says he has to refer one or two patients a year to this "uber-specialist".

Meanwhile, they are testing the blood, spinal fluid and rechecking an old CT scan of my chest.

I get to come back to Mayo for Round Three in November

Questions: "When can I start treatment?" Answer: "When you get a diagnosis." The treatment for sarcoidosis is steroids which if it is a fungal infection would feed the infection, probably killing me. The treatment for fungal infection of the brain needs to be tailored to the fungus and all treatments are toxic and if it is sarcoidosis would do nothing to help me. So--I wait.

Rochester Again

We are here. I see the neuro-opthamalogist at 7:30 a.m. Let you know how it goes. Chas.

I'm OK

I got a lot of phone calls yesterday concerned because I haven't posted. I'm OK. The end of last week was kinda rough, but this week hasn't been too bad. I get up and shower. Rest. put on my clothes. Rest. make the bed. Rest. Eat breakffast. Rest....so on and so forth. In short, it takes me all day to do nothing. If it were not for the fatigue, headaches, dizzyness and blurred vision--I'd be bored. but being sick takes all my time.

In short, nothing has changed lately. I am just waiting to go back to Mayo.

The reason I haven't blogged all week is that my wi-fi is down. I have to go to Heine-Bros to blog

Don't have any news. I go to Mayo next week for another round of appointments, tests, etc. With any luck, I will know more then.

Back in Town

My last post from Rochester didn't post till today. Sorry about that.

We got back to Louisville late Saturday. We drove all the way through. I have been exhausted since our return and haven't done a great deal.

My father in law has returned to Alabama. Katherine has returned to work.

No news. I don't really expect there to be any news until I get back in Mayo the week of the 16th. If, however, there is any news. I will let you know.

Last Posting from Rochester: Friday 8:00 p.m.

Round One is over. We are coming home. My next appointment is October 16.

After lunch on Friday we continued to have no luck in Neuro-opthamamology. Finally, we had to leave for my Lumbar Puncture. After the Lumbar Puncture, I had to lay flat for the rest of the evening.

While I was having my LP, however, my wife left "supportive-wife" role and went into lawyer mode. When I emerged from the LP, all my appointments had been rescheduled so that they were clustered together and so that I would no longer have to wait in waiting rooms for the "first available opening."

My next trip will be more sane. We are both a little worn out from the 8 hours of sitting in Nuerology before seeing a doc and 10 hours in neuro-opthamalogy without ever seeing a doc. When they told us that we would have to do more of the same, my wife could take it no more. So, bottom line, I have appointments and a schedule and no more endless waits.

We will probably leave Louisville on October 14 to drive back (flying is so expensive), spend the night in route and then be in Rochester the night of the 15th.

I will blog more when I get back to Louisville.

mid day report

Friday at Noon. One last appointment (a Lumbar Puncture), and we are done for the week. We plan on driving back to Kentucky tommorow, probably spending the night half-way (but we shall see how I am feeling--maybe we can drive straight through).

I am at a good place to access the progress of the week.

Monday we saw the internist and did the usual blood and urine work ups. I also had a chest x-ray.

On Wednesday, I saw the neurologist, who ordered more tests (more blood and urine and an MRI of my head). The nuerologist also referred me to a neuro-opthamoloogist. The neurologist's working hypothesis seems to be that I may have sarcoidosis.

On Thursday, I saw the infectious disease doc, who ordered more tests, including a lumbar puncture. His working hypothesis is that I have a fungal infection.

Thursday was also the day I did the MRI and the second round of blood and urine tests.

Today (Friday) I tried to get into see the neuro-opthamalogist in the a.m. (I arrived at 6:45 a.m.), but no luck so far. If I have not gotten in by early afternoon it will have to wait until my return to Mayo next week.

Katherine--On a long day

As exhausted as we both are, I am impressed by the collegiality amongst the doctors. I have never seen the degree of voluntary interaction between specialists that we both have seen at the Mayo Clinic. It really seems that the problem is being approached from all the relevant angles. With the database that the doctors have at their fingertips, all the test results can be accessed by any of the doctors at any time.

Having said all that, the Mayo Clinic suffers from all the problems inherent in a bureaucracy. Think J.K. Rowling's Ministry of Magic, the scene from the afterlife/hell in the movie Beetlejuice or The Hitchhiker's Guide to the Galaxy--complete with Muzak piped into every waiting room. It is truly surreal. At times I feel like we have entered a Salvadore Dali painting with a "sensible" Midwestern bent.

Here is an example of how a bureaucracy can be evil, without really meaning to do so. The first thing you do when you get to the Mayo Clinic is you have an appointment with an internist who will serve as the "hub" of the wheel, gathering and helping you interpret data. The internist does an intake and his office schedules the first available appointments with specialists and schedules testing. As a general rule, the testing (i.e. bloodwork, x-rays, etc,) is scheduled within the next twenty four hours. The appointments with specialists, however, may take some time.

Charles' first appointment with the neurologist originally was scheduled for next week. (Arguably, this was the most important appointment we had scheduled at the Mayo.) Since we did not want to set up residence in Rochester for any longer than necessary, we could go to the neurology area and be "checkers" waiting for someone to cancel, allowing Charles to be worked into the schedule. That is what finally happened on Wednesday morning, but not until we had waited eight hours in the waiting room on Tuesday.

This is where the bureaucracy takes over. An obviously ill and elderly lady laid on the couch almost all day waiting with us in the waiting room as a "checker". She finally gave up with thirty minutes left to go and we got the last minute cancellation for the next morning within that last thirty minutes. I felt really guilty after my admitted exultation at getting Charles seen by the neurologist. Sometimes this week, I have felt like our relative youth and reserve of stamina has worked in our favor. At the same time I have been offput by the assumption that the patients who come to the Mayo can all afford to stay awhile and all the implications of that assumption of being well to do and subsequent access to healthcare....After the experiences of the last few weeks, I am more convinced than ever of the need for healthcare reform. I really have been left with a sense of "there but for the grace of God go I."

Speaking of grace for the unworthy, I am extremely thankful that we have good health insurance and for all the help we have received in getting Charles this far. There is no way we could have gotten this far on our own. People have been so generous with their time, their financial help and their emotional support. Thank you all for helping us make sure that Charles stands the best chance possible of getting an answer. All kvetching aside, we are extremely fortunate.

Katherine

Another Day...

As predicted, today was very busy. I started with urine testing at 6:45 a.m. (I am carrying around a jar the size of a countertop pickle jar), followed by an MRI at 7:15. After MRI I had another blood test, followed by my first visit with my infectious disease doc.

I was supposed to be fasting until my blood test. Didn't get to eat, however, until lunch. The dye of the MRI made me sick. I had to go back to our room to change clothes.

After lunch, however, I began to feel better. I saw my internist mid-afternoon. He told me to loose weight and keep an eye on my cholesterol and that he didn't need to see me again. He said that if the neurologist and the infectious disease docs come up with anything, he would write me.

On the brighter side of things, I really liked both the neurologist and the infectious disease docs. Both had several new theories to test and they (unlike my internist, seem more focused on why I am here and) want to see me again.

Tommorow I have a lumbar puncture and with any luck will see the neuro-opthamalogist. I think I am coming home on the weekend, be home for a week and then return for more quality time with the nuerologist and the infectious disaese doc.

Day Three better than Day Two

I saw the neurologist today! I now have a full day of testing tommorow.

I spent the morning with the neurologist. I spent the afternoon trying to see the neuro-opthamalogist, but no luck. It was so nice to have gotten into see the neurologist, it made waiting four hours to see the neuro-opthamalogist (and not seeing him/her) a piece of cake.

Tommorow is a very full day. It starts at 6:45 a.m. with an MRI. More blood work, etc. Then I see the Infectious Diease doc.

They have lots of ideas. They seem to like a "puzzle." I am brain candy for them.

Bishops Meet in New Orleans

Not everything interesting is happening in Rochester....

[Episcopal News Service, New Orleans]

After nearly a full day of deliberations, the House of Bishops on September 25 agreed overwhelmingly by voice vote to reiterate the 2006 General Convention Resolution B033 that said they would "exercise restraint by not consenting to the consecration of any candidate to the episcopate whose manner of life presents a challenge to the wider church and will lead to further strains on communion."

They also pledged not to authorize public rites for same-gender blessings "until a broader consensus emerges in the Communion, or until General Convention takes further action," according to the response.

Presiding Bishop Katharine Jefferts Schori told reporters at a news conference following the conclusion of the meeting that bishops found "common ground to stand on … high ground. Not everyone is 100 percent happy with every word in this document, but we believe we have found a place that all of us can stand together -- at the foot of the cross."

The final statement adopted by the House of Bishops is being sent immediately via email to the JSC and the Archbishop of Canterbury, who is traveling in Armenia and Syria, a spokesperson for the Anglican Communion said.

Intended to clarify General Convention Resolution B033, the document offered the strongest language thus far about interventions from overseas bishops in local dioceses. "We deplore incursions into our jurisdictions by uninvited bishops and call for them to end," the document said. It also called for "unequivocal and active commitment to the civil rights, safety, and dignity of gay and lesbian persons."

Its overwhelming passage indicated strong support for the leadership of Jefferts Schori, who received a standing ovation and sustained applause at the news she is approaching her one-year anniversary as presiding bishop and primate of the Episcopal Church. Bishops supported her plans for: episcopal visitors; communion-wide consultations; increased listening across the Anglican Communion and assisting in ways to invite the Bishop of New Hampshire to the Lambeth Conference in 2008.

Jefferts Schori praised the "remarkable work" of the bishops. "We have reaffirmed our firm desire to remain as full members of the Anglican Communion."
She emphasized that the meetings were carried out within a context of mission, outreach and transformation, noting that nearly $1 million was raised for Gulf Coast hurricane relief efforts and that bishops and their spouses painted, installed sheet rock, helped rebuild damaged homes and made other community connections. That spirit of connectedness and service infused the deliberations, she said.

Bishop Robert Fitzpatrick of Hawai'i, agreed. "It was non-adversarial and it was holy," he said of the efforts of the bishops to craft a statement that all could accept with integrity.

The conversations "were not a battle between right and left, but a discussion across a spectrum" with the main question being "what will the Episcopal Church be and how will we fit into the family of the Anglican Communion."

"It's not that you make a compromise; you live into your reality," he said. The resulting document represents the current reality of the House of Bishops "right down to the parsing of every word" and is an "honest portrayal of where we are without overstating any position," he said.

Former South Carolina Bishop Ed Salmon said that even though the process used to reach the final document did not acknowledge the "unconscious oppression of those who don't agree," the effort "represented significant progress in terms of the House of Bishops working together."

However, he said that the document did not directly address the Primates' Communiqué.

"I believe we have a problem in the Anglican Communion because we have a problem in the Episcopal Church," Salmon said, explaining that the problem is "symptomatically" about human sexuality, but "more deeply" about theological differences.

Still, Salmon said, he would do everything he could to make the statement work.

Bishop Caroline Tanner Irish of the Diocese of Utah, a diocese in which same-gender blessings have been offered as a pastoral response, said she would have to "unpack" the statement for the members of her diocese.

"I think putting [same-gender blessings] in the context of 'pastoral care' is the critical word," she said. She praised the House of Bishops for what she called the hard work and compromise offered by all the members.

"It was hard," she said. "We were doing very hard work. It required discipline and courtesy to each other."

Diocese of Texas Bishop Don Wimberly said that the bishops were "really sobered" by hearing from Archbishop of Canterbury Rowan Williams and the members of the Joint Standing Committee of the Primates and the Anglican Consultative Council earlier in the meeting. It is one thing to "read reports" about what the rest of the Anglican Communion thinks about the actions of the Episcopal Church, he said, but it's another thing to sit face-to-face with people expressing those concerns.

"I'm going to support this," he said of the resolution, adding that the Episcopal Church would have to wait and see how the rest of the Anglican Communion will respond.

'Good and glorious work'
In other business, the bishops: updated reports of Designated Episcopal Pastoral Oversight or DEPO within their own dioceses; received information about an awareness campaign coinciding with Theological Education Sunday to, in accordance with General Convention Resolution B006, help avert the crisis in seminarian debt and counter its impact on attracting potential clergy.

Bishops also addressed anti-racism and antiwar issues, and urged the U.S. Congress to extend more assistance to the Gulf Coast for hurricane rebuilding efforts and also recognized the National Episcopal Health Ministries Network for organizing gifts of prayer shawls for bishops and spouses.

Jefferts Schori reported that she has visited 26 dioceses "in more than a perfunctory way and four others for just one event" within the past year. "Consecrations are not the only reason I come" for visitations, she told the gathering, adding that she likes to spend several days during visitations, face to face with clergy and laity, as well as "be present in some kind of public forum, not specifically church-related. You have the opportunity to say what would be most helpful, the possibilities are as broad as your imagination."

She told bishops "what's been most surprising to me about this ministry is the media interest," but added that it is a remarkable opportunity for evangelism and to talk about "the vitality and effectiveness and mission work in the Episcopal Church."

There is "good and glorious work that is going on in many, many, many places in this church. The conflict you read about in the headlines is not reality in 95 percent of this church."

Day Two

I was told to be at Neurology at 7:00 a.m and they would work me in. At 11:15 a.m. they told me to go eat lunch and be back at 12:00 noon. I came back by 11:50 a.m. (snarfed my lunch in the cafe). At 4:05 p.m. they told me to go home and come back tommorow at 7:00 a.m.

Believe it or not, sitting 8 hours in a waiting room is exhausting. Doing so and not even getting to see a doc is frustrating. Maybe tommorow will be better. Chas.

First Day Down

Was admitted at 7:30 a.m. Saw my Internist at 8:15 a.m., Dr. Riveria. He then sent me for (1) blood test, (2) urine test, (3) chest x-ray, (4) oxygen levels and (5) electrocardiogram. Nothing new there--did it all a few weeks ago.

Tommorow I move on to Neurology and Infectious Disease. I will keep you posted.

On the Road Again

Travel was smooth. No problems. We have arrived in Rochester, MN and have settled into our hotel room. We found the building I will be going to tommorow morning and we ate dinner (tasteless Italian). I will post again tommorow.

On the Road

We are just north of Chicago. My Father-in-law is staying with the kids. We will be traveling on to the Mayo Clinic today. When I have news, I'll post something.

Archbishop of Canterbury gets a taste of New Orleans

Williams visits lower Ninth, preaches at jazz-backed Evening Prayer

By Mary Frances Schjonberg
September 21, 2007
[Episcopal News Service]

Archbishop of Canterbury Rowan Williams suggested September 20 during an ecumenical service at the Ernest N. Morial Convention Center that New Orleans's recovery could remake the city into God's image of the holy city.

Noting the service's reading from Zechariah 8:3-13, Williams said that the image of the holy city is not based on strength of a city's arts community, business sector, educational offerings, or social-welfare programs.

"What makes a great, godly city is that it is a safe place for older people to sit and children to play in the streets," he said, adding that few people live in that kind of city anywhere in the world today.

Earlier in the day, Williams visited the site of a former Walgreens drugstore in the lower Ninth Ward to bless what will become the new home of the Church of All Souls, founded in New Orleans' lower Ninth after Hurricane Katrina and the ensuing flood devastated the neighborhood. The Episcopal Diocese of Louisiana helped to plant the church at the invitation of the neighborhood.

Williams said that, like the rainbow was a promise of God's everlasting presence after the Flood, the All Souls effort is a sign that "God hasn't gone away and God's people haven't gone away."

Convention center service features hymns, jazz
The September 20 service, titled "Humanity -- Renewed, Restored and Re-Centered in God," was sponsored by the Episcopal Diocese of Louisiana. In addition to Williams, participants included Presiding Bishop Katharine Jefferts Schori; Louisiana Bishop Charles Jenkins; Mississippi Bishop Duncan Gray III; Elder John Pierre, pastor of Living Witness Church of God in Christ; and Bishop J. Douglas Wiley of the Life Center Full Gospel Baptist Church.

Some 25,000 people were stranded at the convention center in the days after Hurricane Katrina hit the city in late August 2005. They had no food or water. The people who died there were left unattended. Their plight outraged many Americans who watched the scenes on live television. It took National Guard troops, which arrived four days after the first people camped out at the center, to restore order and evacuate the complex.

Jenkins described the service's leaders representing people "who in the past had little time for each other" but now have become partners in the city's recovery.

The service, he said, was a "symbol of the good that can come from utter destruction."

In June, Jefferts Schori asked the bishops to be in consultation with their dioceses about contributing to a purse for hurricane relief. Each donor diocese was asked to consider contributing $10,000, and during the service the bishops presented the gifts, which will be divided between the two dioceses of Louisiana and Mississipi.

Williams said the choices now facing New Orleans represent the time in every community's life when it has to ask itself what its citizens owe one another.

"The bottom line is that what we owe to one another most deeply of all is gratitude -- not even respect, not even the recognition of dignity so much as gratitude," he said. "We are indebted to one another. I am indebted to your existence because I would not be myself without you. A community -- a society -- that can get to that level of recognition is one that lives from a deeper place."

When a community lives with this attitude, Williams said, it will value the young and the old who round out the life of the community, but who are "not part of the system of profit."

One of the gifts of the old and the young is that they show us that the leisure of "enjoying who we are and who each other is in the presence of God is, all being well, what we should be spending eternity doing," he said.

This sense of indebtedness and gratitude towards one another is exactly the attitude with which people ought to relate to Christ because of all he has given to the world, Williams said.

"We owe Christ big time, as they say," Williams said.

The evening prayer service took a distinct New Orleanian flavor when jazz trumpeter Irvin Mayfield and the three other members of his quartet played a melody of songs typically used in the city's signature jazz funeral processions. Members of the evening's congregation danced along the hall's aisles, waving handkerchiefs and orders of service as the four played and improvised around "Just a Closer Walk With Thee," "I'll Fly Away," and "When the Saint Go Marching In."

As the jazz died away and Jenkins turned to Williams for the blessing, he said, "I told the archbishop that the only thing Elizabethan about this service tonight would be him."

Williams visits lower Ninth Ward
The Ninth Ward is the largest of New Orleans' 17 wards and runs along the easternmost downriver portion of the city. Located downriver from the Industrial Canal, the lower Ninth was known for its high level of homes owned by working-class African Americans. The lower Ninth received between four to 20 feet of floodwater following Katrina. Hurricane Rita's storm surge flooded the lower Ninth again a month later.

Arriving after an all-day session with the House of Bishops at the Intercontinental Hotel in downtown New Orleans, Williams visited one of two mobile respite care units that had made their routine stop in the parking lot of the former Walgreens. He also briefly toured the inside of the building before speaking to the members of All Souls and other neighborhood residents.

He blessed the congregation with holy water and incense, and he and Jenkins signed a large placard which proclaimed that blessing.

Williams said that the planting of All Souls showed that "when other people are running away, we as Christians ought not to run away; we ought to be there."

He called the church plant "a new shoot of life in the body of Christ."

"I want you to know that the Anglican church worldwide knows about you, cares about you, prays for you and we won't leave you alone," he said.

Williams spent a considerable amount of time talking with neighborhood children and young people, asking them about their experiences during and since Katrina.

The Diocese of Louisiana and the Church of the Annunciation in New Orleans launched the Church of All Souls as a mission station to minister to the many working-class families who are trying to return to their homes.

Jenkins September 20 called the invitation to plant the church "a sign of hope for us" and said he prayed that the church "will be a sign of hope for the people living here."

The Rev. Shola Falodun, an Anglican priest from Nigeria who moved to the United States to be a missionary to African Anglicans, began assisting with the relief work in the diocese immediately after the hurricane.

Falodun proposed planting a church and received the diocese's blessing to start All Soul's. Falodun has said he chose the name to honor the new souls who will be coming to worship and those souls who were lost in Katrina's waters. When it began, the church was housed in the garage of a parishioner during a time when few homes on the street were occupied. The congregation now rents space at a nearby Baptist church.

"If we are here, we are a light to the world," he told reporters September 20, adding that the light of Christ could banish the darkness felt in the neighborhood since Katrina and her aftermath.

Such efforts, Jenkins said, are part of the diocese's new-founded role in racial reconciliation in the city and the state. There was a diocesan presence earlier in the day in Jena, Louisiana, at a rally that drew some 60,000 people to protest the treatment of six black teenagers arrested in the beating of a white schoolmate last year.

In Other News....

For Your Information...

House of Bishops sessions reflect 'passionate commitment' to Anglican Communion

By Pat McCaughan
September 20, 2007
[Episcopal News Service]

Bishops meeting with Archbishop of Canterbury Rowan Williams in New Orleans on September 20 characterized their conversations with the spiritual leader of the worldwide Anglican Communion as reflective of a "passionate commitment" to the future of that communion.

Bishop Robert O'Neill of Colorado told reporters after a nearly seven-hour session with Williams that the "best way to characterize our conversation is to say that collectively as a House of Bishops who exercise oversight for the common life and ministry of each of our dioceses, we take our responsibilities and our ministries very seriously. We're passionate about the work that we all do both individually and collectively.

"That passion was reflected in our conversation today; it reflected a passionate commitment to the vitality of life and ministry of both the Episcopal Church and to the global Anglican Communion."

O'Neill, along with Bishop John Rabb of Maryland, met with more than two dozen reporters, from as far away as Toronto, London and Los Angeles, after the bishops opening plenary session. They offered a perspective about the discussions with Williams, which are private and are expected to conclude on Friday morning.

Rabb noted that the September 20-25 session is well-attended and included the "largest gathering we've had in some time" of bishops including bishops who are retired or have resigned. "It includes bishops not only from different parts of the country but also of differing theological points of view, on any number of issues," he added.

O'Neill declined comment about how news of the New Orleans meeting might be evaluated or received by primates who in February issued a communiqué from Dar es Salaam calling for a ban on consecrating gay bishops and the blessing of same-gender unions. He also declined comment on questions about alternative primatial oversight --bishops from outside the United States exercising oversight within another bishop's diocesan jurisdiction -- except to acknowledge that Presiding Bishop Katharine Jefferts Schori has announced the appointment of eight bishops to provide oversight.

"Nothing happened conclusively about that, except it is reasonable to say that Bishop Katharine announced she was exploring ways of providing for some kind of oversight," O'Neill said.

Williams was not at the news conference. He paid a pastoral visit to All Souls' Church, in New Orleans' Ninth Ward, an area severely affected by Hurricane Katrina, to observe rebuilding efforts. (Story to follow.)

They also declined to speculate about whether or not Bishop Gene Robinson of New Hampshire would be invited to the Lambeth Conference, the once-a-decade gathering of the worldwide Anglican Communion's bishops. The election of Robinson, a gay man living in a committed relationship, has been an topic of contention with more conservative bishops across the 77-million-member worldwide Anglican Communion.

O'Neill and Rabb emphasized that Williams attended the gathering at the invitation of the bishops, in his capacity as Archbishop of Canterbury and, in response to a reporter's question, said Williams had made no specific requests prior to the gathering. They characterized the tone of the meetings and discussions as respectful.

Earlier in the day, Jefferts Schori presided and preached at a spirited Eucharist and called the bishops to self-awareness, accountability and mutual respect during their deliberations.

"We have lived in this Church and in this Communion for a number of years with abundant disdain, violent words, and destructive action toward those who hold positions at variance with our own. None of us is wholly free of blame in this game, for we have all sought to judge those who oppose us," she said during her homily.

Reflecting upon the ways language can be "violent," the Presiding Bishop recalled former radio personality Don Imus's derogatory references to the Rutgers Women's Basketball team in April.

"What he said about them implied they are not my equal, they are not worthy of dignity and they [the team] responded with an invitation to conversation. When you and I can meet our rhetorical opponents with an invitation rather than judgment, remarkable things can happen … conversation becomes possible."

She added that: "we must begin by recognizing ourselves as beloved and forgiven, and by extending that recognition to those around us. I can assure you that there are some in our midst who feel quite unwelcome, who have not known what it is to be beloved."

Noting that "we've consecrated three new bishops in the past two weeks, three others since we last gathered and elected two more who are waiting to be consecrated," she invited newer members of the house to let their voices be heard.

The honor goes to....

Jenny Mehling is giving me a lift to the doc tommorow. Thanks Jenny!

Yesterday and Tommorow

Yesterday is the day I would have figured out I was sick with something new. Rather than my opthamologist making the discovery by accident, I would have called her yesterday.

On three occassions yesterday I lost sight completely for a few moments. The first time was when I bent over to pick something up. I completely lost sight in my left eye, but by the time I could count to twenty my vision began to return. I could see a small circle in the middle at first, then slowly it widened until it was its usual blurry self.

Happened a second time when I stood from having been sitting. A third time when knelt. I called my opthamalogist, she said it was to be expected. She had been asking me about visual changes--apparently this is what she meant. So I said, "This is normal." She said, "No Charles, this is not normal, but given your condition it is to be expected." Oh, well.

I am to see her tommorow morning at 9:30 a.m. I know that Katherine has a court appearance at that same time. If you are free in the morning and could give me a ride to Baptist Hospital East, I would be most appreciative. First person to call me gets the honor! 396-8183 (cell phone).

No more staples

I saw both my docs today. I was so tired afterward I came home and took a long nap.

First visit was with my infectious disease doc. He said he could not identify an infection. The six week reports are back from the first spinal tap--no news. Brain biopsy produced nothing new. His theory: I had a fungal infection, but my body killed it. My current problems are caused by the scarring that took place as my body healed itself. His treatment plan: Shunting and begin maintaince meds to ensure the fungus does not come back.

Second visit was with my nuero-surgon. He said he would not shunt because he is sure my protien levels would not be elevated if I did not have an infection. If he shunts and there is an infection he says it will spread to my abdomin, etc. Further, he believes that if we identify and treat the infection that I may not have to be shunted.

Both are glad I am going for a second opinion since they cannot agree to a plan of action amongst themselves.

Its Raining Second Opinions

Just when I had given up being able to get a second opinion, everyone calls. Mayo in Jacksonville can see me on Friday. Mayo in Rochester can see me on Monday. Cleveland Clinic called and left a message for me to call them to arrange an appointment.

A big thank you to all you helped this happen. I was hoping one would work out, and three have! I will review with my wife tonight when she gets home from work and we will decide where to go.

Again, thanks for all your help, kind thoughts and prayers.

Maybe Next Week

Next week may prove eventful in my health care saga. I see my infectious dieases doc (Julio Melo) and my nuero-surgon (Steven Reiss) on Tuesday. I don't expect to hear anything from the neuro-surgeon--they are just going to take out my staples. Melo, however, may have news.

Today marks six weeks since my first spinal tap--so maybe those infamous fungi cultures will be back from the lab. One can hope.

My test results have been sent to the Mayo Clinic in Rochester, but I have not yet heard back as to whether or not they will see me and if so when. I have other options as well for second opinions The Mayo Clinic in Jacksonville can see me on Friday (but they will not review my test results first). The Cleveland Clinic is also an option. I am waiting to see who can see me first. I thought by today I would know--but it looks like the first of next week before I can make a decision on second opinions.

Saw my internist

Saw my GP (acually she is in internal medicine--one of the docs in Charlie Hornaday's practice) yesterday. She is referring me to the Mayo Clinic in Rochester. I have not decided if I will go or not (or if I will go someplace else) but she is sending my file to Rochester for review. If they have any ideas, I may be going north for a few days.

Other news. Now that I have been out of work for 30 days, the Episcopal Church wants to put me on short-term disability. This is good thing--its why we have such insurance. The funds made available will help the parish pay another priest until I can return to work. My internist is filling out the paperwork for the Church's short-term disability program.

Tommorow will mark six weeks since my first spinal tap. Which means, I should be getting the results of those cultures soon. Hopefully they will help make a diagnosis so that we can begin the treatment phase.

What Now?

(1) We wait. The cultures from the first of August are due back soon. A week later the cultures from the second spinal tap will be back. Six weeks from now the cultures from the biopsy will be back. Those results may prove useful in establishing an accurate diagnosis.

(2) I have another round of doc visits. I see my GP tommorow and my infectious disease doc later in the week. Both will tell me what they make of the non-news of the pathology report from the biopsy.

(3) I have to decide if I am going to go out of town for a "second opinion." I will probably make that decision by the end of the week (I want to talk to my GP and my infectious disease doc first).

Summary of where we are: (1) I have papiledema, hydrocephelus, and chronic meningitis (and a few other related ailments), but (2) we don't know what is causing it. The speculation is that I have a rare fungal infection--but so far, we cannot identify it (if it is a fungal infection at all).

Biopsy Scar

More Non-News

The pathology report is back from my biopsy! The pathology report was negative: no cancer, no fungus, no tumor, no baccateria, no virus, no anything. Lab cultures from the biopsy will take six to eight weeks.

So, the news is that there is no news.

No news

We called the doctor's office at close of business today and they had not received a pathology report. I said that I wasn't going to get my hopes up for a definitive diagnosis, but of course had done just that. Nothing to be done but to wait for Monday to see if there is any news. Katherine

Health Insurance Reform

Back in January I launched a "MySpace" page for the Reform of Health Insurance in Kentucky. I have (as you might imagine) been thinking about health insurance of late. Therefore, I thought I would take this moment to share my "plan" with you.

Each company selling insurance in Kentucky should sell the same coverage to everyone for the same price.

Currently, the price you pay is dependent upon your "group." If you are in a large "group" you will generally pay less than if you are in a small "group." If you are in a healthy "group" you will pay less than if you are in a sick "group."

Under my reform plan, everyone buying insurance with a particular carrier will be in the same "group" (or pool). Everyone will pay the same price. One "group" per insurance company. Every individual doing business with a particular carrier, pays the same price for the same coverage.

Each company selling insurance in Kentucky should never deny coverage to anyone.

If you want to purchase health insurance you should be able to do so at the same price everyone else pays for the same coverage.

Currently, health insurance companies can refuse to sell you insurance at any price, or they can sell you insurance, but at a price that far exceeds the cost of the average plan.

Under my reform plan, insurance companies would be forced to have open enrollment 52 weeks a year, 7 days a week, 24 hours a day. Anyone living in the state of Kentucky would be eligilbe to enroll in any plan sold in the state of Kentucky and the price of that plan would be the same for everyone enrolled.

These two reforms are about fairness (everyone pays the same) and accessiblity (no one is turned away).

visit http://www.myspace.com/healthinsurancereformnow to learn more.

Slept Well

I slept well last night. There is no place like home. Katherine got me a donut shaped pillow that supported my neck, but didn't put pressure on my "hole" in my head. Worked great!

I am hoping to recieve a pathology report today (so much for 24 hours!). With any luck they will be able to make a treatable diagnosis. I am ready to move from the diagnosis stage to the treatment stage.

As soon as I hear anything, I will post here.

I'm Home

Arrived at home by lunch. Took a nap. My biological mother, Lou, has been here and my father-in-law, Karl, has been here. They will go home tommorow. It has been nice to have them here for the biopsy. They, like so many of you, have been kind to help Katherine during my illness. Getting kids to school, picked up from school, taken to football practice, brought home from football practice, picked up from cross-country practice, et al. Once again, thank you.

Surgery

The brain biopsy was completed as planned. No problems with the surgery. I now have a hole in my head (behind my right ear).

The surgeon just left my room and he is sending me home. He had said I would be in ICU overnight, but I did well enough he just sent me to a regular room. And now I am doing well enough I can just go home.

The site of the biopsy is sore. I couldn't get comfortable enough to sleep last night. I am pretty tired today.

The pathology report is not back yet. No news. I am getting accostomed to waiting.

I should be home by dinner tonight.

Biopsy Day

Iti s 6:30 on Wednesday and I am preparing to go to the hospital for the biopsy. I have to be there at 7:00 a.m. and the surgery is at 9:00 a.m.

I feel fine. They gave me something for the headaches over the weekend and it helps. I still get very tired and still have dizziness and blurred vision--but 95% of the time I feel fine.

They tell me I will be kept in ICU overnight and then moved to a regular room and then sent home. When I am in a regular room, I will post again.

Thanks

Thank you for all the emails, cards, letters, notes, flowers, food, and prayers!

Pre-Op Testing

Did my pre-op testing this morning at Baptist Hospital East. I am now set for surgery next Wednesday, 9:00 a.m. at BHE. Dr. Steven Reiss will be performing the surgery.

The surgery entails drilling a hole in my skull (behind my right ear) and removing a piece of my brain for testing. The testing part is two-fold. They will look at it and see if they see anything (pathology) which will be quick. They will also send it to the lab to culture, which will take 6 weeks.

Biopsy

My Health Update. I saw Dr. Steven J. Reiss today, my neurosurgeon. We scheduled a biopsy of my brain for next Wednesday. I go in tomorrow for pre-op testing.