Sunday, August 31, 2014

Ken's Ordeal #17: No More Tests to Do

In the last post with the tag "Ken's Ordeal" I said that Ken was waiting for a brain MRI and to hear the results of many hours of neurological and psychological tests.  There were delays, but finally the MRI was done and we returned to the VA for the results.  The MRI reveals some abnormalities, but nothing immediately alarming.  There may be frontal lobe damage from many severe episodes of hypoglycemia (low blood sugar), thanks to the pheochromocytoma.  We were told that there is really no way to know. 

We were also told that there are no more diagnostic tests to do.

The psychological tests revealed some deficits in cognitive function, especially for things that required quick responses or multitasking.  Otherwise, his cognitive function is normal, and his IQ is still mostly in the above-average to superior range. 

His psychological profile was not as positive.  He is depressed (of course) and there are other things that I do not want to post about.  Some may be the long-delayed result of much abuse in his childhood. 

There is no real explanation forthcoming for the weight loss, continued exhaustion, or any of the other symptoms.  They are recommending he meets with a psychiatrist who specializes in helping people deal with severe, chronic pain.  The hope is to reduce the need for narcotic medications.  If that can happen, his mental function should improve too.

I keep thinking of T.S. Elliot's poem "The Hollow Men."  It is a poem I greatly dislike, especially the final lines.

This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang but a whimper
.

But this feels like that. An anticlimax. We have been searching for a diagnosis for a long time now.  Ken has been noticeably ill for about three years.  When the rare adrenal tumor, a pheochromocytoma, was diagnosed, we thought that at last we had an answer.  Partially, we did.  Looking back, we know that the pheo was likely present, wreaking havoc, for decades.  After it was removed, along with the adrenal gland it had invaded, many of Ken's symptoms were reduced or gone.  His blood sugars are easily controlled with minimal insulin.  His blood pressure is on the low side.  There are no more "episodes."

I will always think the pheochromocytoma was due to the toxic water situation at Camp Lejeune.  We will never know.

However, many other mysterious symptoms remain.  Two years of tests at many medical facilities, including the Mayo Clinic, have yielded limited answers.

Ken has aged many years in the last three.  He has lost a lot of hair, his shoulders are stooped, he is thin and his muscles are atrophied, he walks unsteadily and slowly, is nearly always exhausted, depressed, and in chronic severe pain. There are some other mental and physical symptoms I do not want to write about. 

Recently I had a conversation with an acquaintance who hadn't seen Ken in some time.  She encountered  him in a local store, and later she told me, "I did not recognize him.  I can't believe the change.  I wasn't sure if I should speak to him and was thinking, 'Can that man be Ken?' -- and then I recognized his hat."

So...we now are faced with answers that are not much of an answer.  And we will need, evidently, to find way to deal with the new normal.

I may not write about this again.  I'm not sure, but Ken asked me to do so, believing there would be answers.  As for now, there seems little point in continuing.

PS  About the pheochromocytoma
Just in case you may read this and find yourself with the same symptoms, Ken really was a classic case.  When, AFTER the tumor was accidentally discovered, I did some research, I saw how Ken had experienced all the typical warning signs.  Pheos are very rare, "one in a million" we were told.  But someone, particularly his endocrinologist, should have known. Symptoms were: unexplained weight loss, uncontrolled blood sugar highs and lows (that had no reasonable explanation), "episodes" of faintness, heart palpitations, and light-headedness.  Also high blood pressure that was not well controlled, even with three medications.  In the last months, episodes of faintness and heart symptoms also included a pounding headache and discomfort that travelled from Ken's feet to his head, or vice versa. On the day he was finally admitted to the hospital he shook so badly he could hardly stand.  It was almost like a seizure.  It would likely have soon been fatal because the flood of adrenaline and other hormones would have caused heart attack and/or stroke.   It may be rare, but if this sounds familiar, make sure someone does a CT kidney scan.

Tuesday, August 26, 2014

The Blue Shard

I walked in the city
On a sidewalk
No one else near.
Strangely lonely,
Empty city.

Glancing at the gutter
A glint of sunshine on glass,
I stopped,
Looked. 

Vivid with color
A large shard of glass,
Cobalt blue, shot through
With streaks of scarlet,
Gold, and purple.

Just a sharp sliver…
Of... something.
Thick on one side,
Thin on another,
Sun bright on its curve.

Had this glass,
Been a plate?
Or a cup?
Graceful vase?

I stepped into the gutter,
Stooped down to touch the surface,
Half afraid,
Half admiring,
Of the arrowed, slivered remnant

Something once complete.
Covered with cracks,
Some ridged and defined,
Some fine as a web,
Every part.

How came it?
Who made it?
For what purpose?
Why here, a once-lovely thing,
Just a piece, just a shard?
Slivered,
Cracked,
In the street.
Like me.
 
Carefully,
Mindful of my fingers,
I picked up the glass and
Held it to the light.

A beautiful thing, made for…something.
Its network of cracks caught the light,
I thought it sad to leave it,
I should put it in a fishbowl,

Or on a window, or…
As I sat on the curb to consider,
I gently placed it back
On the pavement,
 
And the shard crumbled to slivers in the gutter

Friday, July 25, 2014

Friday Five: The Sound of Muzak (tm)

I have not played the Friday Five for a very long time.  Today is the day, since I'm home from work.  Over at Rev Gal Blog Pals, Deb has this to say:

Recently, we got some Indian take-out food. While we were paying for our order, we heard a “Bollywood” version of “My Favorite Things.” We almost missed it because music is so much a part of our lives that we can ignore it!

Since then, I’ve been noticing some of the background music in my world. Sometimes it’s the busker at the Metro station, playing away for some quarters. Sometimes it’s the usual “oldies” station, or the “Mix” station (“the BEST of yesterday and today!!!”). And sometimes it is completely random, like that Bollywood moment…
SOooo let’s talk background music this week for our Friday Five.
1. At the office: If you have a choice, do you turn it up, turn it off, or drown it out with headphones? 
It depends on what I'm doing.  If I really need to concentrate, sometimes music gets irritating.  In general though, I turn it up.

2. At the grocery store or mall: What song (or genre of music) makes you want to hurl? Or throw something?
Genre: Rap.  If there is one thing I dislike, music wise, it is repetitive sounds over and over and over and over and over and over and over.  But you already figured out I HATE techno, but that usually isn't heard in grocery stores.  As for a song I never need to hear again, "The Pina Colada Song" might just top the list.

3. If you were going to create a “perfect playlist”, who are the artists (or songs/pieces) that you would include?
This is very hard because I love all kinds of music.  It would depend on my mood of the day, but somewhere in there I'd have Mozart, Bach, Debussy, The Iron Butterfly, The Beatles, Ian and Sylvia, Joan Baez, Bob Dylan, Coldplay, Dave Matthews Band, Simply Red, Louis Armstrong, Jason Upton, Casting Crowns, Eric Clapton (unplugged), B.B. King, Fleetwood Mac, Aretha Franklin, maybe a little Who, Stevie Wonder, Michael Jackson, Cherry Poppin' Daddies, Fish, Straight No Chaser....oh....it is a looooong playlist.

4. Have you ever tried using recorded music in worship? If so, what was your plan, and how did it go over?
At my last pastorate, there was no worship team when I arrived.  We sang to CDs.  Many people were used to it because it had been the norm for a while.  I disliked it intensely, but you do what you gotta do!  One of my first goals was to get some real singers and musicians together.  As for using a special song, I did this often.  Sometimes it was a secular song, but always with a specific purpose.  I recall, "All We Need is Love" from the Beatles and "The Times They Are a Changin' from Dylan and once something from Harry Connick Jr.  I think it went over fine.  I often used a recording of a particularly nice communion song--"Come to the Table"--and it was beautiful.

5. When is the earliest you’ve heard Christmas music in the grocery store or mall?
August.  It was at Kohls.  I was so irritated I refused to shop at Kohls till the Holidays were past.

BONUS: “Weird Al Yankovich” has been releasing a stream of his parody music videos lately. Among my favorites: “Because I’m Tacky” :) If Weird Al was going to do a music video of your life, or a recent experience, what song/hymn/musical would the parody be based on?
I LOVE Weird Al.  I think it would be....hmmmm....."An American Tune" from Paul Simon. Here is a clip.

http://youtu.be/AE3kKUEY5WU

Saturday, July 12, 2014

The Story of the Blue Countertops

The story of the blue counters begins with a dream that came at a terrible time in our lives.  While this story is not about that time, I share a little of it so you understand--and so I don’t forget--why the dream was important.

Ken and I were struggling with the sudden death of a big plan, one that we had cherished for years and believed was God-given.  Ken had spent nine years in the US Marine Corps as a COBOL computer programmer and systems analyst.  This was in the late ‘70s and COBOL, a complicated business data processing language “spoke” to computers so large entire frigidly air-conditioned buildings were required for them. Brilliant and extraordinarily good at his job, when Ken decided to leave the military he received several offers to work in data processing for large private companies.  The starting salaries he was quoted would compare to six figures today.  Flattered, he nonetheless declined all offers.  He was resigning from the USMC in order to study theology.  As it turned out, we both did, helping each other with coursework, kids, and work.  That was not an easy time, but we had a goal.  We were going to minister overseas as missionaries. 
Fast-forward several years.  We were co-pastoring our second church, but some time before we had applied to our denominations’ world missions department.  Things were moving along in the complicated process, albeit slowly.  We were shocked when we received a letter that turned out to be a polite but strangely unequivocal “No, thanks.” 

I remember the two of us sitting on our bed staring at each other, speechless and stunned.  This sudden death of something we had planned for and worked towards for years was devastating and confusing.  A long time later we learned a tiny piece of the “why” behind this flat denial, but it was too late to try to straighten out the misunderstanding. 
We were also, frankly, living on a very low salary and struggling to make ends meet. We thought about those large salary offers from nationally-known companies, and we cried and we prayed and we struggled to understand.  We never did, and this was deeply painful for a long time. We tried to find out more, but there was, we were told, no negotiating and no further explanation forthcoming.  While we struggled with the unexpected ”No,” we struggled even more with the seeming injustice of it.
Our small rural church had been growing.  We were excited about what might lie in store and we talked about the approaching need to expand our facilities. Then things began to go bad—very bad.  Unknown to us, a monstrous lie had been told, followed by another and still another. No one told us, so we were mystified at what was happening to our congregation.  There were other complicated issues involving a beloved former pastor (who remained in the congregation) and the deacon board, one of whom was the son-in-law of that former pastor. 

Things got really ugly.  Small towns are often places were news travels fast and rumors travel too. Unfortunately, there are plenty of people who love to spread gossip—especially if it is about clergy.  One very bad day, our daughter came home crying because someone on her school bus had repeated the first monstrous lie about her parents.  Once a teacher at the middle school said to her, “I don’t believe what people are saying about your mom and dad.  They must be good people to have a daughter like you.”  That teacher’s comment was well meant but not particularly comforting.    
I wanted Ken to resign, but he said he could not. We still disagree, all these years later, about what the “right” thing to do would have been. The stress on us was extraordinary and unrelenting.  Eventually we were asked, at a particularly horrid business meeting, to leave.  Only afterwards did a dear church couple visit us and tell us about the second and third lies. Too late, of course, and we were horrified and our hearts were broken. 

We examined our motives and our actions, reminded ourselves that we could not afford to get bitter, did our best to forgive.  Still, we were spent and knew we could not just try to pastor another church somewhere.  We needed to leave “the ministry” for a while, but we had two children as well as ourselves to think about.  We had to quickly find an income, but the computer world had changed in the years since Ken’s expertise had been prized.
The church building was right across a narrow driveway from our home, which was a “parsonage” owned by the church.  We had 30 days to vacate. I closed the curtains so we did not have to constantly see the church building.  Looking back, I think both of us were perilously close to breakdowns. 

All that leads me to the night I had the dream of the blue counters.
I lay in bed, deeply depressed and trying to pray. Eventually I slept and dreamed a vivid dream.  Ken and I were with our children in a kitchen, the counters of which were a deep royal blue, my favorite color.  I still remember, nearly 30 years later, the expression on our little boy Joshua’s face as he laughed, jumped and clapped his hands. We were extraordinarily excited. There was more exuberance than we would likely have displayed in real life. Even in the dream, I knew we were happy because we had found a new home.  We were safe.

Next morning I didn’t say anything, but the details remained clear in my thoughts--our dreamt-of laughter, our smiles and joy.  And most vivid of all were the blue counters.  I couldn’t stop thinking about them, and the details seemed much more like a memory of a real life event than a dream.  Eventually I wondered if the dream might be important, and I somewhat sheepishly told Ken about it.
Not long afterwards, Ken found a job as a fuel truck driver. (I had already been working part-time for the county Department on Aging.)  About a week before we had to leave the parsonage, we found a house. The house and yard were a mess, but there were many things to like about the place and the rent was affordable.  The landlord was a hate-filled nut, but we didn’t know that yet.  The relief at having a source of income and a place to live was enormous, but I stood in the kitchen and looked at the counters.  They were not blue. They were a particularly ugly brownish yellow. I told Ken, “I guess that dream was just a regular dream after all.” 

The spitefully mean nature of our landlord soon became apparent. We avoided him as much as possible.  One day we came home to a hand-written note that informed us we were being “evicted” and had two weeks to leave.  He would not be returning our deposit.  We went to small-claims court and we listened, incredulous, as the landlord described how we had ruined his house.  He had no proof (we had actually cleaned up a great deal of garbage and improved the place enough that someone wanted to buy it).

The clearly intoxicated judge said he didn’t know what to believe and handed down a decision completely contrary to landlord-tenant law. While we weren’t exactly evicted, the landlord had sold the house and we had to move.  It was a few weeks before Christmas.
Someone told us about a house owned by a missionary couple who were relocating and needed to rent it quickly.  One cold night, Ken and I, feeling utterly defeated, went to look at a large house secluded in thick pine woods. There were no visible neighbors.  In the back, a hill sloped down to a small lake. We soon saw that the house was beautiful inside too. 

Ken whispered to me, “Don’t get your hopes up. On my current paycheck there is no way we will be able to afford what they will want for rent.”  I whispered back that it would be rude not to take the tour. 
We passed through a formal living room to an oak stairway. On the second floor were three bedrooms. The master bedroom was about the size of the parsonage living room, with a private bath and large glass doors leading out to a deck that overlooked the moonlit lake.  Downstairs we saw a dining room and a large family room with a fireplace.  Another set of glass doors led to a second deck.  Ken looked at me and shook his head, but talked to the husband of the pair about rent as, chatting about the loons that lived at the edge of the lake, the woman led me to the kitchen. I heard no more of what she said.  My mouth, I have no doubt, was open. 

The counters in the kitchen were blue.  Not just any blue, they were a lovely, bright royal blue. I had never before, and I have never since, seen royal blue countertops. This was the kitchen of my dream.   

I bit dazed, I followed her back to the family room.  Ken told me what they wanted for rent, adding to the man, “I’m not sure we can do that.”  Some sort of negotiation followed, but all the while I was urging Ken towards the kitchen door.  “Honey, you must come see the kitchen.”
Ken sighed a bit, and said, “Dorcas, this is a great house, but we just can’t afford the rent.  It is less than I expected, but still too much for us….” He stopped talking and stared at the blue counters. 

We rented the house for a lower figure than first asked and we lived there nearly three years.  They were difficult years but the time was made easier by our secluded house in the woods.   We didn’t have to see anyone if we didn’t choose to—and we usually didn’t.  We marveled at the deep silence and the beauty of the snow-covered pines all around us.  In spring their scent filled the air.  We often sat on the deck to listen to loons calling across the lake, and we watched a pair of Canadian geese teach their little ones to swim.  At night, a great horned owl sometimes hooted in a tall pine just beyond our bedroom deck.
At some point, Ken applied to the Wisconsin Department of Corrections (the DOC) for a chaplain position.  He took the test and scored highly. He expected an interview but we heard nothing and after a time we forgot about it. 

Eventually our landlords wanted more rent and we moved into a tiny house in town.  As it turned out, it would have been better if we had just stayed a few more months because not long afterwards, Ken heard from the DOC and was subsequently hired at Kettle Moraine Correctional Institution near Plymouth, WI. There had been a "hiring freeze" for all state positions, and his test results had remained in a file for over a year.  
He applied for and received official endorsement from our denomination as a “nationally-appointed home missionary.”
We sometimes missed our beautiful, secluded home in the woods.  But the healing of our hearts had begun there, and life went on.  Ken spent over twenty years at KMCI, only leaving when his illness made it unavoidable. 

It seems to me that God is silent and distant.  I can’t pray. I struggle with tears and anger every time I attend church. But lately I have been thinking of that other time of sorrow and confusion.  I am, for the first time in a long time, thinking about that vivid dream and those beautiful blue counters. 

Monday, July 07, 2014

Ken's Ordeal Part 16: Neurological Tests

It has been three months since a post about Ken, but here is number sixteen.  That in itself is a bit horrifying.  I think I have avoided posting because things seem pretty grim.  It is difficult to be optimistic when writing post number sixteen.

For the good news, Ken's knee healed fine with no infection.  It is a bit swollen, which will be the case for about a year.  He limps slightly when walking, but this is a great improvement over his really frighting, lurching, bow-legged gait before the surgery to "revise" the previous knee prosthetic.  He has very little knee pain. The VA rheumatologists have prescribed an antibiotic that has a side effect of lessening joint pain, and it is helping somewhat with Ken's overall pain, though not enough to discontinue the high levels of pain meds.

Last post, I mentioned tests in the VA neurology department.  Ken had a nerve test to once again try to discover if his pain is due to nerve damage or some undiagnosed nerve disease.  It is a painful test that always brings Ken to tears and has now been done three times, once in Sheboygan, once at Mayo and now at the VA. The results, once again, showed the kind of neuropathy that would be expected in a long-time diabetic but nothing of note.

Then we went back for an actual neurology consult.  (I had insisted on one and the rheumatologist had agreed.)  I wheeled Ken into the little room in a wheelchair.  In the room were a white-haired doctor about our age who had been present during the previous nerve testing, and  a young, soft-voiced middle-eastern woman who appeared to be a student.  The older doc was grumbling quietly to her.  ".....and what are those guys in rheumatology doing?  What do they want?  We already did the test..." 

The woman began to ask Ken about his knee, apparently thinking he was in a wheelchair because of that.  (There is a bad-looking scar.)  Then she asked other very general questions about pain.  Ken was not having a good day, and he struggled to answer. His voice was weak, and he kept his head down. Meanwhile, the older doctor had his back to us as he typed on a computer keyboard.

I got angry.  I said, "STOP!  Please stop asking questions and just listen to me, and I'll save us some time." 

The young woman stopped, looking surprised, and the typing at the keyboard stopped too.  I apologized for being rude, telling her I wasn't angry at her, but I was frustrated.  (Serious understatement.)

I went on, speaking quickly, "Ken is not in a wheelchair because of his knee.  He does not have enough energy to walk around this medical center.   He is in severe pain, as you know.  He has also lost about 130 lbs. with no dieting.  His testosterone level remains quite low in spite of monthly injections.  He sleeps a great deal of the time.  He has trouble with memory, and this is getting worse.  He has been to Mayo six times and between Mayo and here has been tested for all kinds of things.  We still have NO DIAGNOSIS after over a year and a half!  He had a pheochromocytoma. [If you are one who has read these posts from the first one, you will likely remember that is what started this series--the one-in-a-million tumor that is often diagnosed post mortem because it is so rare.] The tumor was removed in February of last year and he was expected to get well.  His blood pressure is no longer high.  His blood sugars have stabilized and he no longer has to deal with hormonal 'storms' that caused all kinds of weird symptoms for years on end--but as you can see, he is NOT WELL!"

At this point the older doctor turned and said, "Well, your husband has been a diabetic for a long time, I see." He started explaining to me as if I did not know what diabetes can do to a person.  I put my hand up.  "Please stop.  We know this."

He looked irritated, started to say something, stopped, and then looked closely at Ken who was still sitting with his head down. After a long moment, the doctor asked quietly, "Mr. George, how old are you?"

"Sixty-two.  I'll be 63 in July."

"Hmmm...sixty-two...." he paused, and I said, feeling testy, "Yes, he is only 62.  He is 62 going on 82."  Tears came to my eyes, and the doctor looked at me kindly. I have since wondered if he is 62.

"I see," he said.

And it seems he did.  The atmosphere in the room changed.  He asked Ken some simple questions, examined his hands, had him raise his arms and do some other range-of-motion movements.  Ken mostly kept his eyes closed.  I'm not sure why.  I expect just from exhaustion and maybe frustration.  

"Mr. George, you can open your eyes," the doctor said gently. 

Looking at me, the doctor reviewed the symptoms I had just recited. Then he turned to Ken.

"Mr. George, did you have any episodes of hypoglycemia?"  (That's low blood sugar.)

Ken said, "Yeah.  A few." He shrugged.

I said, "Not a few.  Many.  And some were severe enough that he passed out.  His blood sugar swings were crazy.  He could go from a blood sugar level of over 300 to one below 50 in half an hour.  Of course, we now understand why nothing Ken did made any difference.  It was the tumor."

"Aha.  Yes." 

He paused a long time, continuing to look at Ken, before saying, "High blood sugar is a bad thing, of course.  But low blood sugar can be even worse.  We may be dealing with brain damage." 

Ken had a stroke many years ago.  He recovered well, and he never even missed work, though he should have.  There were some lasting effects, but they were mild and went mostly unnoticed by people who did not know him beforehand.  The doctor told us that sometimes low blood sugar could increase the damage already caused by the stroke.  Of course, other areas could be damaged too.

He said to me, "You were right that I did not understand, but now I do. This is really complicated, so thank you for helping me put it together. There must be some sort of central event, some single cause for why Mr. George has changed dramatically in a relatively short time.  There has to be. This can't be all unrelated."  He began to explain, but I nodded and said, "There is no need to explain. Ken and I understand this.  We have been saying that to every doctor we have seen.  So many I don't remember them all."

He scheduled two things.  First, Ken would have several hours of neuropsych tests.  Second, he would have a brain MRI.  He seemed astonished that Ken's Aurora Clinic doctor had never ordered a MRI.  He said, "I would have ordered one be done yearly, since you did have a stroke."  He was surprised that none was done at Mayo either.  Perhaps it eventually would have been, except that the VA stopped payments to outside providers and required Ken to receive all care at the VA. 
(And I am broken hearted by the news on TV about the VA and deeply glad we do not live in Phoenix, AZ.)

Anyway, a few weeks later, Ken spent an hour talking to a nice woman who is a nueropsychiatrist.  When Ken left the room, our daughter, Kris, who was the one with Ken that day, said "My dad used to be a genius."  Kris told me that the doctor replied, "Oh, I can tell."  She even told the technician who would administer the testing, "This will require some additional tests.  This is a very intelligent man."

When Ken was in the US Marine Corps, his IQ test had a result of 170.  Yep.  A very intelligent man.  In the USMC he was a computer programmer/systems analyst and was the lead programmer who wrote the fiscal system for the Marine Corps (winning the prestigious Navy Acheivement Medal for his work).  He graduated from college Magna cum Laude with five minors (missing "Summa" by one tenth of a point) in spite of having a family, working several hours a week, and playing basketball on the Trinity team.  On the morning he went for the neuropsych tests, he said, "If I am The Scarecrow will you still love me."  I can't type that without crying.  The Scarecrow, of course, is the Wizard of Oz character who had no brain.

The tests were all about mental functioning and took nearly four hours.  Tomorrow I will take Ken to the VA Medical Center for the brain scan.  Then we will make an appointment to meet with the original white-haired neurologist to discuss the results of these tests. 

So at Post Number Sixteen, we are back to looking at the results of the pheochromocytoma, the "little ball of hate" as the urologist who did the surgery to remove it over a year ago, said to us.

Thursday, April 17, 2014

Ken's Ordeal Part 15: Knee Surgery

On April 4th the long-awaited replacement of Ken's failed knee prosthetic took place at Milwaukee's VA Medical Center.  His pain had steadily increased in the two weeks or so leading up to surgery, perhaps because he had reduced his level of pain meds or perhaps because the damage in his leg was worse, or both.  At any rate, walking was difficult and his knee looked like a large cantaloupe.  Reducing the level of narcotics meant that post surgery pain could be better controlled, but there had been weeks of increased misery. 

So even though we were aware it might be  a challenge, Ken mostly seemed relieved that the time for this surgery had finally come.  It was last summer when an orthopedic doctor at Mayo had said, "This replaced knee MUST come out, and soon."  No one knew if they would be able to put in a new knee or if they would discover previously hidden infection, necessitating months of immobility and a delay of replacing the prosthetic.

The VA staff was friendly and efficient.  I was a little sad when a tall, smiling black woman came in and introduced herself as the anesthesiologist who would be taking care of Ken during the operation.  I had been looking forward to seeing the doctor I wrote about in my last post--an anesthesiologist who seemed to "get it" more than most had.  As Ken was wheeled away, she gave me a little pat and a large smile, assuring me, "We'll take good care of him."  I nodded, trying to smile and failing.

I waited in a rather unpleasant family waiting room.  It was crowded, noisy, and the opposite of private.  There were rows of uncomfortable chairs.  No coffee, no snacks or fruit, none of the trappings one might see elsewhere.  I had been told that the resection of the failed knee prosthetic would likely take longer than a typical first-time knee replacement and to expect a wait of three to four hours. 

Pastor Sharon came and sat with me in the cafeteria and we talked as we munched on lukewarm biscuits and gravy and drank bad coffee.  A bit later, Rev Gal (and a longtime cyber friend) Julie came and we talked about church and life and how things have changed for us both.  She gave me a hug that was from all my dear Rev Gal Blog Pal cyber friends. 

About three hours after Ken went to the operating room, I received a call from one of the nurses.  "We are still working on getting the old knee replacement out.  He is stable though, and vital signs are good.  It will be a while." 

Our daughter, Kris, arrived and we sat in the waiting room trying to ignore the loud cell phone conversation about someone's bladder infection, the complaints about Obamacare and politics in general, the anxious people.   We talked a little, read, took short walks.  And we waited and waited and waited.  It was three more hours before we were informed that the surgery was finally finished and Ken was in the recovery area.  Ken later told us, "It was really crowded back there."

A surgery resident told us that it had been quite difficult to remove the old prosthetic.  They needed to remove large amounts of inflamed tissue in order to get to it, resulting in quite a bit of blood loss.  The thigh bone had been badly damaged by the "rattling around" of the loose knee replacement, so they had to repair it with cement before they could put in the new prosthetic.  He commented, "That was on the difficult end of the scale of surgery... but it looks good now."  There was no sign of infection in the knee.   This was both good and bad news.  Good news because instead of months of recuperation followed by another surgery, they were able to put in the new knee now.  It was bad news because an infection might have explained Ken's months of illness.

The subsequent hospital stay was a mix of good things and bad.   There were competent and caring nurses, a great physical therapist and occupational therapist, and a pleasant room (unlike some others at the VA).  There were also inexcusable incidents of missed medications and a very evident lack of communication between members of the health care "team."  Ken seemed exhausted, was in great pain and quite depressed, and no one seemed to have been told that the knee pain was not the only issue.  He was told more than once to , "Just grab the trapeze and pull  yourself up; after all you have upper body strength" and similar remarks. 

Kris posted a large sign that read something like:
Ken George is ill. He has lost 130 lbs. with no dieting.  He experiences severe all-over joint pain similar to RA.  He has limited hand and upper body strength. 

After he received two units of blood, Ken felt better. He was discharged after six days in the hospital.  He is still waiting for the authorization to receive physical therapy locally.  He is very tired, but he is walking reasonably well and doing leg lifts as much as he can.

Two days ago we drove to Milwaukee to see the doctors in the rheumatology clinic. The ride to Milwaukee and back was painful for Ken because he can't straighten his knee.  He looked grey and had a hard time talking by the time we arrived.  It was a depressing and mostly pointless visit.  They clearly have no ideas, but they did say they are referring Ken to a VA neurologist.  They also said his blood count was quite low, about the same as when he had received the transfusion after surgery.  They sent him to the lab for some further blood work. 

We have heard nothing about the lab results, but we are going back to Milwaukee today for the follow-up visit at the orthopedic department so we will check to see what they plan to do. As for the knee, hopefully the staples can come out today, and hopefully Ken will be able to get going on  physical therapy. 

And we will wait for the tests that are scheduled in the neurology department.  Some of these tests were undoubtedly done at Mayo--but we shall see.

Friday, March 14, 2014

Ken's Ordeal Part 14 No Cancer, But is this Good News?

It has been two months since I posted.  Where to start?

Ken had a PET scan.The rheumatologist says that the illness Ken has, whatever it is, cannot be RS3PE, much as the symptoms fit, because certain things should show up on the PET scan and did not.  Ditto for rheumatoid arthritis. 

As I mentioned in #13, they were looking for cancer (because if Ken had a new tumor, RS3PE would almost certainly be the diagnosis).  The VA Rheumatologist (the Fellow I mentioned before) said, "It is good news, Mr. George.  You do not have cancer."  Of course, that is good news.  But in a strange and sickening way, it would have been a sort of relief to have a tumor show up on the PET scan.  Why?  Because then we would have had a plan of action, a known enemy--even if a bad one--to fight.  As it was, it doesn't mean Ken is better.  He is continuing to get worse. It just means we still have no diagnosis. 

They decided to try Ken out on an Rx that might reduce inflammation and pain.  It has been two months, and there is no improvement.

Meanwhile, he has a horrible open wound on one of his toes.  He has been going to Milwaukee to the VA wound clinic for weeks now.  It is finally starting to show a little progress in healing.

As for the request for a new primary care doctor, Ken's request was denied.  He was informed that his PCP was doing "all he needed to do."  Interesting, since he has never seen Ken again after the introductory visit.  He was told, "If you do not like our decision, write to your congressman."

So we have been waiting for the time to pass for the replacement of the failed knee prosthetic to finally take place in early April.  Ken can hardly walk, especially when first rising from a sitting position.  His leg is bowing outward.  It is severely painful, in spite of the narcotics he is taking.  Yesterday we went to the VA for the usual preoperative lab work and visit with the anesthesiologist.  The anesthesiologist was concerned about the wound on Ken's toe.  He delayed his appointment with Ken and instead sent us to orthopedics.  They inspected the wound, ordered additional labs and withdrew four large syringes of bloody fluid from Ken's nearly-basketball-sized knee.

I asked about the possibility that the inflamed knee could be causing Ken's other illness symptoms and was told it was "highly unlikely."  The very young ortho doc, who Ken had not seen before, said the wound looked "clean" and cleared him for surgery.  Relieved, we headed back to the anesthesiologist. 

He was great.  I only wish Ken's primary care doctor had shown such careful concern.  He asked many questions, looked up records from other places, and said, several times, "But what is wrong?   Clearly something is wrong beyond a failed knee replacement.  What tests have been done?"

At this point, I think every possible diagnostic test may have been done, either at St. Luke's (at the time the pheochromocytoma was removed) or at Mayo (remember, Ken was there six times) or at the VA.  The PET scan was the last. 

The anesthesiologist kept shaking his head, looking perplexed.  He looked very serious.  He told Ken all the risks, of course, which are horrific.  And then he added, looking directly at me, "If it were me, I would not get this done until your toe wound is healed.  Dr. C. (the surgeon who comes to the VA once a month just to do failed knee replacement surgery)  does not know your whole history.  He does not know how bad your leg circulation is, nor about your several severe bouts of cellulitis (leg infections).  Nor about your current general state of illness.  The risk of infection is great and having a wound makes it greater." 

Then he said, "If you have an infection, in spite of all the lab work and scans saying you don't, it would explain why you are so ill. You do have to do this knee surgery, because the knee may be making you sick."He went on, "I understand that you do not want to delay.  It has been too long already.  I am just the anesthesiologist, but I am very concerned.  On surgery day, if you don't delay it, insist that Dr. C. actually looks at your toe and talks to you before he does ANYTHING.  Insist."  He repeated this at least three times before we left. 

He told us he was very concerned about pain management post surgery, since Ken is already in severe pain in spite of taking both methadone and Oxycontin.  He urged Ken to cut back, saying, "Of course, you are dependent by this time."  Of course.  "Don't suffer unduly, and if you have to keep up the current dose, do so.....but....really try to lessen it.  If you can't you will pay for it later when the knee is worked on." 

We decided not to cancel the surgery, for now.  If the toe wound is still open at the next visit to the wound clinic, we will consider cancelling.

Which is worse?  The possibility of severe infection?  Loss of a leg, or worse?  Or continued decline because all this illness is due to hidden infection or prolonged inflammation?

We were silent on the two-hour trip home. 

There was a letter from Aetna in the mailbox.  It informed Ken that his long-term disability with the state is denied.  They never received any form from the rheumatologist, in spite of us sending it twice and calling them twice as well.  (Remember, the primary care doctor refused to fill it out but the rheumatologist said he would.)  We have appeal rights. 

I went to bed,  put the pillow over my head and cried for a long time.  Ken told me this AM that he didn't get much sleep, since he cut his pain med in half before taking a bedtime dose.  He looks miserable. 

I am going to see my sister in South Carolina next week.  She had a near-fatal medical situation earlier this year.  I feel guilty saying it, but I am glad I will have a week away while Ken attempts to lower his pain meds.  I will file an appeal about the denied disability claim, and I will call the VA patient advocate and pitch a fit when I get back home.

And we will keep close watch on Ken's toe, and try to decide which course of action is the wise one.  I hope this makes sense and isn't full of typos.  Written on the fly.

Thanks to those who are still reading.  I love you.

Saturday, February 08, 2014

Remembering Kevin

Last Sunday, January 2nd, Ken's brother, Kevin passed away.  He was 54.

Kevin lived with us for almost five years.  The last few months, mainly because Ken has been so ill, Kevin has lived in a group home. We all knew that it was not likely he would live a long life, but the end came shockingly quick. 

When I think of my brother-in-law, Kevin, it is as one of three quite destinct persons. The first is the child.  My earliest clear memory of him was after going to 4th of July fireworks with Ken, his mother, and his two little brothers, Kevin and Keith.  Ken and I were just teenagers. We were all eating ice cream at the counter of a Howard Johnson's restaurant somewhere in California's San Fernando Valley.  Kevin (about  five years old) said, "Mom, is Ken going to marry Dorcas?"  I can still see him--dark brown eyes full of childlike innocence, and that mop of thick wiry hair.  Ken and I laughed self-consciously. 

I soon learned that the George household was not a happy one.  I saw and heard things that shocked me. I was young and I was horrified, and I did not know what to do about what I observed.

Both my mother and father in law have died.  I loved them, and I miss them.  They each had some wonderful qualities.  Mom and Dad were not bad people, but they were very bad parents.  They had no idea how to raise children. I think they loved their kids but were afraid that to show tenderness or affection would make their children weak.   It was impossible to know what would set one, or both, of them into a rage.  A Mormon family, the nice fa├žade was on when needed, but it was quickly discarded at home.

Kevin was an average child with three very intelligent siblings.  The eldest, Karal, was the only girl and had left home by the time I met Ken. All of them endured physical and verbal abuse.  They were  demeaned constantly.  They were hit, sworn at and repeatedly told that they were stupid, dumb, or worthless  Kevin took it to heart the most perhaps. I sometimes wondered, "If the Georges act like that with me around, what must they do when they don't have company?"

Kevin was a good-looking little boy, a  tall, gangly, rather hapless kid. I can see his face when Ken graduated from Marine Corps boot camp. He smiled and smiled--so proud of his big brother. It was a rare good day with the family.  The child Kevin had a sweet smile and an innocent and kind heart. He made me sad.  I knew he was a child who needed affirmation and encouragement but rarely got it. 

Kevin tried to kill himself at age twelve. He was in a coma for a few days, and he was never quite the same afterwards.  A few years ago he told me that he started using drugs at 14. "The stoners," he said, "accepted me."

The second Kevin became an angry, selfish, rebellious teenager who landed in juvenile hall more than once. Mom and dad couldn't handle him, so he was sent to live with big sister, Karal--a  disaster that lasted only a few months and ended very badly.  Next stop to land was with us.  While longer than the stint with Karal (about a year and a half), it did not go well.  We tried, but we were young and Kevin was broken.  There were sometimes glimpses of the person he should have been, but they were rare.  He was too angry, too sullen, too bitter and hate-filled for anyone to deal with.  When I picture him during that time, his face is dark--and not just from his olive skin.  He was quite handsome, but he was always scowling.  He was a thief and an almost pathological liar. 

He did go to church with us, and there was a time when we saw a change which lasted a couple of months. Then he was worse than ever.  He ran away, missing finishing high school by a mere three credits.  After a few encounters here and there, one for his father's funeral and one for his sister's funeral, we did not see him again.   Years passed. Rarely, we heard a little about him.  He was a carnival worker down south somewhere. He was in the Army. He was tossed out of the Army. He was married and back in California.  He was divorced.  He was homeless. He was living with a cousin. 

All attempts to talk to him, including a phone call when his mother died, were refused.  We prayed for him, off and on, and we thought about him sometimes--less as two decades went by.  Sometimes we wondered if he was still alive.

And then one day the phone rang.  It was Kevin.  He was clearly strung out.  He couldn't stop talking.  The voice was unrecognizable.  But it was Kevin.  So I talked, or rather listened, for a while, tears running down my face and then passed the phone to Ken.  Afterwards, we hugged each other and cried.  There were no words to say.

I don't want to write much of what we learned about Kevin. The details of his life are gruesome and sordid.  He had endured eight amputations.  A diabetic who never took care of himself, he developed gangrene in his foot. His foot was amputated, and then, as the infection advanced, more of his leg.  But he said to Ken, "They told me they couldn't take off any more and if it didn't work this time I would die.  I left my anger on the operating room floor with my leg.  I love you and Dorcas.  I don't remember why I hated you so much.  I asked God to forgive me."  He sent us a picture--a scrawny shadow of his former self, with no teeth.  I threw it away. 

A few years passed with occasional phone calls, and two brief visits.  I wrote about one HERE.  He wanted to move here, I think because he thought living with us would help him stop the drugs.  We had no room for him, because my elderly mother lived with us.

Once he called after an extended hospital stay.  He had suffered a third heart attack and he realized that meth, which he had been shooting up for years, was going to kill him at last.  He told us, "I had been trying to talk to God ever since I forgave you when the last of my leg came off.  I just couldn't stop the drugs, and I knew I was going to die.  I never forgot what I heard when I lived with you guys.  I was desperate and I cried out to God to deliver me.  And God did!  I mean, I haven't used meth since.  It has been a month.  I haven't even wanted any.  It has to be the Lord."

Eventually, after my mother died, Kevin moved here with his dogs, Soo Lin the pug and Juanita the Chihuahua--the Most Annoying Dogs Ever--but enough about them.  That brings me to the third Kevin I think of.

Having Kevin at our house was not easy.  He had clearly done a lot of damage to his body and mind.  He had some annoying quirks, like talking loudly to the television.  His hygiene was sporadic.  He was often ill.  He had lived on little besides Ramen noodles for a long time.  Better nutrition and regular doctor visits helped.  There was no more smoking pot, and with the help of Chantrix he even quit smoking cigarettes.

Kevin was almost painfully polite and rather articulate.  Many people did not realize that this middle-aged man was vulnerable and childlike in numerious ways. He continued to make foolish decisions, such as refusing to drink water or really anything but highly creamed and sweetened coffee or diet soda.  It took more than one visit to the Emergency Room with dehydration to eventually convince him that he had to drink water.

He thanked us many times for bringing him to Wisconsin, saying he loved it here. It was so clean...so green...so friendly...so safe.  The first fall, with our beautiful trees, amazed Kevin, as did the first major snowfall.  He took pleasure in simple things.

He attended church at Jubilee AG for a while, even though I was no longer the pastor. In warm weather he could motor there in his electric wheelchair. He became a greeter--a very good one I am told.    Eventually he started coming to church with us, and he loved to sing.  He was baptized and became a church member, something of which he was very proud.    He loved it when Kris, our daughter, and her family moved not far away.  Trinity, his grandniece, often spent Friday night at our house, and many Saturday mornings found the two of them propped up on his bed, laughing together at cartoons.  When Noah, our son Josh's little boy, was born two years ago, Kevin rejoiced at another child in the family.  He often forgot Noah's name, so he usually called both Noah and Trinity, "Baby."  Having children around caused him to think of his long-ago family.  He expressed much sadness and regret about his failed marriage, telling me not long ago, "I will always love Michelle.  And I will always love Kenny and Kelly, my step kids. I did a lot of bad things.  I was not a good dad.  I hope they forgive me." 

He talked to anyone who would listen--the mail carriers, the garbage men, the neighbors, the grocery clerks.  He wasn't shy about sharing his past and telling people that God was the reason he was still alive.  Once he was invited to speak to a local youth group.  With help, he shared his story, telling the kids, "I am a wreck because of bad choices.  I did this to myself, and I am an example of what not to do."  I was later told, "It was probably the best meeting we ever had.  The kids hung on every word, and asked lots of questions.  Even the 'difficult' kids who sit in back were quiet and listened intently."

In the end, the Kevin I will choose to remember is the third one.  He was the affectionate child Kevin returned in a broken adult body.  Emotionally he seemed about 14.  But he was drug and alcohol free for five years, and he gradually laid down most of his bitterness and anger.  He once again became the sweet person he always was underneath.  He loved to hug us and was always glad to see any family or friends who visited.  We had a wonderful time Thanksgiving of 2012, meeting up with  youngest brother, Keith, and other family, our first time together in many years. 

Keith came to our house at Christmas along with Josh, Stephanie and Noah. Our house is small.  Ken, me, Kris, Daryl, Trinity, Josh, Stephanie, Noah, Kevin and Keith in our living room is about six people too many for comfort, but we had a good time.  Yes, Ken remains very sick.  Still, we laughed and smiled and opened presents, and ate too much and watched the two cousins play. There were jokes and hugs and remembering.  There was joy.  Kevin was loved.  All of us were.

Last week he got pneumonia and his kidneys failed and his heart soon gave out.  As the ICU doctor said, "The damage to his body has been great.  It is just too much to undo."

Kevin failed at many things. In the end, he succeeded at the most important things of all.  He gave his live to the keeping of God, he forgave, he loved, he accepted responsibility for his wrongs, he spent several years clean and sober.  He touched many people with his smile, his conversation, his honesty. 

As we talked to him in the ICU, the only part of his body that could move was his foot. He moved his foot at specific times.  We held his hand and told him we love him. We shared a few stories. Trinity was a little scared, but at the end she went back to say, "Good bye, Uncle Kevin.  I love you." 

We said good bye for others who couldn't be there.  We told him that Juanita would be cared for (not by us!) and we told him how glad we were that we reconnected and that he came to Wisconsin.    We told him we were proud of him.  We told him we will see him again.  We remember Kevin.
 

Tuesday, January 14, 2014

Ken's Ordeal Part 13: Scans and more Scans

Ken has returned to the Milwaukee Veteran's Medical Center a couple of times for scans that are designed to reveal infection in the bones.  The good news is that the scans reveal no infection.  Why the knee replacement failed (it's been getting worse for over 10 years) remains unknown.  The chance of post operative infection is still a great concern. There is some confusion as to whether Ken can go out of the VA system (due to backlog of surgery scheduling) or not.  The "patient advocate" is trying to get that clarified for us and if Ken has to stay at the VA he is trying to get the surgery expedited.   Meanwhile, Ken can barely walk.  He uses a wheelchair when he has to go to the clinic.   

As for the rheumatology issues, prednisone is the treatment of choice for RS3PE, the disease Ken apparently has.  He had prednisone many months ago with no change.   As I mentioned last post, RS3PE is sometimes connected with tumors.

This series of posts started with a diagnosis of an adrenal tumor, a pheochromocytoma, which was removed last February.

When prednisone doesn't wok, a tumor is suspected.  The VA rheumatologist is scheduling a positron emission tomography (PET) scan, an imaging test that uses a radioactive substance called a tracer to look for disease in the body.  We assume the PET scan is checking for cancer, though no one has said this.  That is the primary reason for PET scans.

The scan is projected to last two hours and, like an MRI, is done in a large "tube."  Because of excruciating pain, Ken was unable to lie still for MRIs at Mayo that lasted for a much shorter time.  We informed the rheumatologist of this, and we are waiting to see what they suggest.

He also has an open wound on his big toe that has been there for a while.  He has been to the VA podiatrist twice, and yesterday finally saw an RN in the wound clinic.  I hadn't seen the wound for a few days, and I was shocked at what I saw when the dressing came off.  His toe looks horrible.  The RN says it is not infected, just not healing and she is trying out some high-powered cream  He goes back in two weeks.

Ken is deteriorating.  He is weaker, the weight loss continues, along with the severe pain, and he can hardly get out of his recliner.  He can only walk very short distances.  Yesterday, I am chagrined to say, as I tried to help share the urgency of the situation with the nice man who is the VA Patient Advocate, I started crying.  I don't cry in these kind of situations.  Not usually.  It isn't that I think crying is bad, especially given the nature of this whole process, it is that I am afraid that if the dam breaks, as it did yesterday, I won't stop.   

Ken has been on short-term disability which now should be switched to long-term disability retirement.   He received a simple form from the insurance company back in mid December (about the 5th or 6th one that has had to be filled out over the last year).  He sent the form to his primary care physician--the new one at the VA.  A few days ago he got a call from the insurance company asking about the whereabouts of the form.  Two calls to the doctor led to him saying that he did not know Ken well enough to fill out the form and that he should go back to his doctor at Aurora to get it filled out.  This from a physician who was quite frank about having not looked at any of the numerous records that Mayo had sent to him.

Ken relayed this to the insurance company.  They said the form had to be from his current doctor, not from one who has not seen him in months.  Of course. 

Ken called and asked for an appointment with his VA doc.  This was refused.

So yesterday we spoke to the patient advocate about this, as well as other issues.  He contacted the primary care doctor and later relayed the following to Ken.  Dr. __________ says, "I can fill out the form for Mr. George if he insists.  He won't like it, because he may lose benefits.  I do not think he is disabled."

We have asked for a different primary care physician, but do not know what will happen.

Thursday, December 19, 2013

Ken's Ordeal Part 12 in Which We Learn of a New Disease, RS3PE

Ken's appointment in Rheumatology was at 2.  At about 3:30 we finally met the rheumatologist, Dr. Z., a "fellow" as it turned out.  He looked very young and he was extremely serious.  English was clearly his second language.  I was not impressed. 

He hurt Ken badly, bringing him to tears during the exam.  He did apologize profusely about five times.  He asked all the usual questions, and he told us that he had actually spent several hours reviewing Mayo notes and conferring with Dr. N. the staff rheumatologist, who was, he assured us, "very good doctor and very experienced."  I thanked him for taking the time to read the notes.  He nodded seriously.  After about 15 minutes he said, "I have ideas.  But I am calling Dr. N."

More than a half hour later, Dr. N. entered the room.  Ken, meanwhile, had left.  He was too agitated and too uncomfortable on the tiny exam table, and I hadn't been able to convince him to stay put.  I called his cell phone.   Dr. N. was not amused.  A small dapper man in his 50s, he asked me questions and tapped his foot.  I wasn't too impressed with Dr. N. either.

Ken arrived.

After more questions, he said, "Dr. Z. and I independently reviewed the records sent from Mayo.  We each came to the same conclusion.  Not everything fits, but many things do.  We think you may have
a very rare disease, Remitting Seronegative Symmetrical Synovitis with Pitting Edema, or RS3PE for short."

Ken and I just stared.  What?  He went on, "Rheumatoid Arthritis, or some other rheumatic disease is really not the disease.  It is a symptom.  What really sent us in the direction of thinking you have RS3PE is the comment someone put in the Mayo notes, that your hands looked like baseball mitts when you came out of the surgery to remove the pheochromocytoma."

I nodded, saying, "Yes.  I said that to the doctor at Mayo.  Ken's hands had been badly painful and quite swollen for weeks.  But in the recovery room, well, it was shocking."

"Yes," said Dr. N.  "Very descriptive of you.  So let me tell you the symptoms of RS3PE."  And he listed them.
  • Symptoms that appear to be seronegative rheumatoid arthritis (RA).  ("Seronegative" means that the symptoms are of RA, but the lab work does not indicate RA.  The Mayo rheumatologist said they suspected seronegative RA.)
  • Extreme pain in shoulders and hands and often other joints.
  • Pitting edema (swelling) particularly in hands or feet.
  • Fatigue and general illness.
  • Severe weight loss.
The doctor went on to tell us that this disease was "discovered" in Milwaukee, Wisconsin.  And then he said, "It just seemed too coincidental that your tumor symptoms became extreme at the exact same time as your hand swelling and the severe, all-over pain began." 

We nodded.  I asked, "What do you mean, 'coincentidental? How are the pheochromocytoma and the hand swelling connected?  I have lost track of how many times one of us had said to some medical doctor, 'These two things just have to be connected, somehow.'  After a while we stopped saying it because our comment never led anywhere."

The two doctors glanced at each other, and then Dr. N. added the sentence that made my mouth drop open.  "RS3PE is associated with tumors.  Nobody knows why."

And I exclaimed, "Get out!" (I think Dr. Z. thought I literally was telling Dr. N. to get out of the room, because he looked at me in surprise.) 

And the St. Luke's rheumatologist, the doctor who saw Ken's hand and their swollen condition about a day after the tumor came out, and the Menominee Falls rheumatologist, and the Marshfield rheumatologist and the Mayo rheumatologist did not make the connection?  But two doctors at the Veteran's Administration did?  Dr. N. turned us back over to Dr. Z and left.  I wanted to hug the serious young Dr. Z, but I was trying not to cry. 

The bad part of this is that it is so rare that he admitted he really did not know what to do next.  "Usually," he said, "prednisone is the treatment that works well.  We have already been researching when we read the Mayo notes.   But you have had prednisone with no effect." 

They are going to do further research and talk to Ken in a month or so if not before.

I later did some research on the Internet.  RS3PE occurs most often among white males over the age of 60, particularly those who live in rural areas.  

Usually when prednisone does not work, a cancerous tumor is found upon further investigation. 

I do not know what to think.

Wednesday, December 18, 2013

Ken's Ordeal Part 11--From the Mayo Clinic to the Veterans' Administration at Milwaukee

As I typed the title, and "Part 11," I stopped and walked away from the computer for a few minutes.  I am astonished, and not in any sort of positive way. 

When I began these posts with the label "Ken's Ordeal" I had no idea that there would be so many installments. And here I am, one year later, and I look outside, and once again the ground is snow-covered.  Spring and summer came and went with no real answers and no celebrating of restored health.

As I wrote in Part 1, Ken has been increasingly ill for some time.  No one paid much attention. 

Anyway, the tumor was discovered in December of 2012, as the urgent care doc looked for possible kidney stones.  It was, he said, "Pretty common, likely benign, and usually nothing to worry about."  He told Ken to make an appointment with his primary care doctor after the holidays.

And then Ken's rapidly deteriorating condition grew alarming, and I took him to the Emergency Room in a snowstorm, praying all the way that he would make it.  As the days in the hospital passed and tests confirmed that the nothing-to-worry-about tumor was very dangerous indeed, no one seemed too alarmed about the hand swelling he was developing nor the horrible pain in his back, shoulders, hands and neck.  It was all likely part of the strange array of symptoms caused by the tumor.  After all, they were so rare no one really knew quite what to expect from a patient who had one. 

Weeks went by as Ken took meds to prepare him for the risky surgery. The tumor was removed in February.  And Ken's erratic blood sugars became more stable than they had been in years.  And his weird "episodes," that I have written about in previous posts, ended.  And his high blood pressure became a bit on the low side--and we breathed sighs of relief.  But his pain continued, and his weight loss continued unabated.  Tests revealed nothing wrong.  He tried stronger and stronger pain meds.  Alarming loss of weight (and height) continued, along with fatigue, worsening depression, and general illness.

I won't retell the whole story.  I wrote in September that after multiple visits to Mayo Ken was told he likely had a rare kind of Rheumatoid Arthritis or some other rheumatic disease.  And his knee replacement, the one he had about ten years ago that had never been right, would have to come out.  There would be no treatment for the rheumatic disease until the knee was dealt with because treatment for the RA would increase his chance of infection, and taking the medication could even prove fatal if there was hidden infection in the knee.  The knee surgery would be extensive but needed to be done "as soon as possible."

Back in September, I wrote that Mayo doctors requested that the procedure be done there.  The Veterans' Administration denied the request.  He would need to come to Milwaukee.  Not long after that, we were informed that he could expect to soon have his "fee based" status changed.  That means any VA payment for services outside their system would end and he would be assigned a doctor in the VA clinic. 

Earlier this month Ken was finally assigned a primary care physician at a VA clinic about a half-hours drive away.  The clinic was reasonably spacious, and the staff was pleasant.  We spent nearly three hours there, and we really didn't explore anything in any depth.  The doctor, who seemed competent, was forthright in acknowledging that he had not looked at the numerous records from Memorial Hospital in Sheboygan, St. Luke's Hospital in Milwaukee nor anything from the numerous visits to Mayo. He simply didn't have time. 

Then, a few days later, we went to Milwaukee to the "big VA" for a visit with an orthopedist. We are still waiting for the knee surgery that needed to be done, "right away."  I have no desire, nor does there seem any point, in detailing the numerous frustrating reasons for delay.

I couldn't help but contrast the VA with Mayo.  The VA is overcrowded.  The buildings seem always in need of paint or repairs.  The furniture is a bit shabby.  The magazines are sometimes years old.  Scratches abound on walls and at the bottom of doors.  There is no parking ramp with elevators, just a big sprawling, always-full parking lot.  No beautiful artwork at the VA either.  Instead the walls are graced with the same posters that have been there for decades.  No music and no beautiful atriums or highly-polished floors.  No Chihuly blown glass here!  However, the people at the VA are helpful, and the majority of the staff, though obviously sometimes overwhelmed, seem to care.

The orthopedic clinic waiting room was overheated and very crowded. On a table with the usual dated magazines stood an ugly plastic rubber tree plant.  The pictures on the walls were badly faded. We sat in the waiting room for well over an hour.  When we finally got to see the doctor, he apologized, saying that the other ortho doc was out sick.  After the usual exam and review of Ken's history, the doctor told us that it was clear the knee replacement was loose and it had to come out.  He ordered more tests to try to discover any infection.  He scheduled some sort of special three-stage bone scan that will be done in January.  Then he told us that surgery would have to wait for three to four months.  The waiting list is long and they are overwhelmed--too many veterans and too few operating rooms.  He said the surgery might be able to be "fee-based" meaning it might be approved to take place outside the Veterans' Administration system.

BAM.  BAM. BAM.  That is the sound of me beating my head against the wall.  Not really, of course, but inside my own imagination.  Hadn't we all but begged for that, back in September? We waited nearly four months only to be told that we might be able to go elsewhere.

And he suggested that Ken not wait to schedule the appointment with a rheumatologist.  Even though treatment from those doctors might have to wait till the knee procedure was healed, it might be a good idea to meet.  So we  scheduled an appointment.

And, as it turned out, something surprising happened.  More about that soon.

Saturday, September 28, 2013

Time Keeps on Slipping: Unpacking the Pile of Boxes

That last post went in a direction I hadn't planned.  Now, isn't that ironic?  I just realized it and laughed as I typed that.

I've written about The OASIS at St. Nazianz on this blog. There is a link in the sidebar to OASIS posts, in fact.  It started just about one year ago.  Tonight will be our last meeting together, at least for a while.  Maybe it will be resurrected.  I have no plans.  I am sad, and I have many questions.  Many, many unanswered questions.  My deepest questions have never been answered.   In spite of the sadness and the questions, I feel peaceful about my decision.  There is only so much me to expend, and I'm stretched beyond what I think is healthy.  I know some precious people are deeply disappointed.  I would never have started The OASIS if I had known what 2013 was going to bring.  How good it is that we do not know the future.  As someone said to me recently, "If we did, we'd never get out of bed." There are other reasons to stop this ministry as well, and it is difficult but has to happen.

I am still trying to put together my teaching for tonight.  Feeling a bit blank about that.  I love teaching scripture and I love interacting with people...

Perhaps my official ministry days are ended.  I know, that doesn't mean there is nothing left of value for me to do.  I am grateful for that.

Our daughter, Kris, and her husband and kiddo are moving in today and tomorrow.  Our house is not large, so stuff has to go.  When I resigned as Jubilee AG's pastor, it was not my plan that I never pastor another church. I knew who I was, knew what my gifts were, knew I had more to do.  I packed up my books and "ministry stuff" and stacked them in the basement, figuring I'd unpack them when needed.  Lots of people told me things like, "God never ignores a willing servant.  You won't wait long."  Or, "Something is coming.  Something big.  You have so much to share."  Or, "It will happen.  God never closes a door without opening another."  Where is that in scripture?  I've come to hate those little "christianese bits of wisdom" that sometimes get quoted more than the things that actually are in the Bible.  Five years have passed and I have avoided the pile. 

This was the week I had to open those boxes.  That is why I found myself humming, "Time Keeps on Slippin'" off and on for days. 

So many memories.  So many decisions to make.  Life has happened while I was making other plans.

I tried not to get distracted by contents of the boxes.  Tried hard to just sort into piles.

Keep handy--I might need this. 
Keep in storage. 
Toss in the trash. 
Take to the thrift store.   

The trash pile grew the fastest, and that made me cry.  As I tossed lots of things in the trash and also watched my "thrift store" pile get higher, I almost felt (foolish I know) that I was throwing life away.  Cards and letters, notebooks from long-ago studies....An A in Dr. James Hernando's difficult but excellent Hermeneutics Class...still proud of that.  A theme paper about divorce and the church.  So many notebooks and class notes and papers that have travelled with us for years. An old edition of "Enrichment," the magazine for Assemblies of God clergy.  Why had I kept that for decades?  Ah, the title article is, "Women in Ministry."  A good article.  My transcripts and the bulletin from graduation.  Sermons written for  homiletics class, some preached and others not.  Resources I had collected to use for teaching or preaching, some utilized and some not.  It was hard to get rid of the ones I had saved for years.  I had lots of great stuff.  And now we have the internet and many ministers don't have much stuff anymore. 

My sheep collection had to go.  I kept two, but they went into a box for storage.  My kids will get rid of those sheep when they sort my stuff after I'm gone.  Ha!  My diploma, license to preach, ordination certificate and picture of me and Ken with then-superintendent Arden Adamsen and his wife Glenna--those went into storage.  Ditto what I said about my two saved sheep.

Hey, here was the copy of Mutuality magazine that featured my article, "Is the Church Feminized?"  I had a flash of the joy I'd felt at having my words appear in published print! Here were copies of my poem, "Father's Daughter" that was published online at Everyday Liturgy

The hardest things to eliminate were the books.  I'm a bibliophile from early childhood on.  Books bring back memories.  So many books and so much to learn and know and do.  A few of my really good textbooks had travelled with me for decades.  How had so much time passed in a blink?  They went to St. Nazianz Christian Center and I hope some aspiring preacher stops in to their thrift store. 

The books I couldn't stand to part with went into a box for storage.  They turned out mostly to be the books from Christians for Biblical Equality, my beloved and life-changing CBE.  When I found them, an evangelical organization all about women and church, my world opened up in an astonishing way.  CBE books are almost never found in your average religious book store, but they are some of the best books I have.  Here are titles for a few of them,

"Daughters of the Church."
"Men at the Crossroads" (just in case you think I don't care about men)
"Why Not Women?"
"What Paul Really Said About Women"
"Community 101"
"Heirs Together"
"Equal to Serve"
"Women in Ministry Today"

Ah, that last one was dog-eared, but it wasn't a CBE book.  Years before I ended up studying for a theology degree, I had purchased a book published by Logos called "Women in Ministry Today" by Helen Beard.  The book scared me. I was drawn and repelled at the same time, thinking it was interesting and thought-provoking but too radical for me.  I figured she was some sort of "women's libber."  I can still hear my mother's tone and see her expression the day she asked me if I was becoming one.  Oh no.  I put the book on the shelf and it stayed there.  But I kept it.  Her painstaking scholarship and her love for scripture was undeniable.  I smiled as I flipped through a few pages. I no longer find her book radical. 

I sat on a small love seat to give my back a break and I let my mind wander to days before Ken and I were ministers.  I was surprised but happy about Ken wanting to be a missionary.  I figured it would be difficult, but I am usually up for a challenge and I always wanted to do something significant for the Kingdom of God.  So off we went to what was then called, Trinity Bible Institute, Ellendale, ND, with visions of Europe in our heads.  I won't bother trying to explain why we figured it would be Europe for us. In the Assemblies of God, it was preferred that couples who planned on going overseas would have no more than two children.  So that is what we did.  We had Joshua, our second and last child not long before leaving the USMC to head for North Dakota.  Where was North Dakota, exactly?  Wasn't it terribly cold there?

When we were in North Dakota, I found another book that rattled me.  This one was by Kenneth Hagin called, "The Woman Question." Hagin's book stops well short of affirming many of the things I now believe, and it isn't even all that well-written.  Those CBE books are far better written and the scholarship is superb.  However, there was no CBE yet.  This was one of the few books in print on the subject.  I still have that one too. Not because it is a great book, but because it shook my world and started a theological battle in Southern-Baptist raised me.  I started thinking for myself. 

I've written on this blog in years past about the day that our instructor in a "Women in Ministry" class, Rev.Rosa Mae Wead, pointed her finger at me as she fairly shouted at a room full of women who were married to men studying for the ministry, "I asked about why YOU are here, and all I'm learning is why your husband is here.  Aren't any of you women called to preach?" 

"Sister Wead" had lived an amazing life.  She had been a travelling evangelist, a  church leader, an educator and much more.  She had asked us why we were in her class and in response everyone had explained what their husband was going to do and how they were going to help.  Our usually gracious and very ladylike instructor  got more and more frustrated and then she exploded, glaring and pointing right at me, who was seated smack dab in the middle of the front row of her class. 

When she shouted that question, almost every woman in the room sat in stunned silence and then burst into tears.  Imagine!  A classroom full of weeping women.

That class continued long past its scheduled end time. There was a genuine visitation of God's Spirit that I've never quite seen the like of since. Several of the women admitted that they had indeed felt such a call, but they did not want to be in competition with their spouses, had been told they were "unbiblical," had been patronized or minimized or shooed back to the appropriate place.  Some just stared as Sister Wead give us a short history lesson about women leaders and preachers.  It was a life-changing moment.  Sister Wead had cancer but most of us believed she would get better.  She had a powerful ministry and was a woman of great faith.   In fact, that evening was the last time she taught a class.  She died not long afterwards.

I was convinced, after years of praying and studying and questioning.  Women could be preachers.  Where were they?  Why hadn't I seen any? 

Later, when Ken was a pastor, I struggled with my own call.  I won't detail all of that.  But when clergy couples got together I tended to want to hang out with the guys.  I am sad to say that I found their conversation more interesting and thought-provoking than the women's.  I loved my husband and my children deeply, but I didn't want to just talk about my kids, or recipes, or what my husband was doing.  I don't mean to be proud about that.  I sometimes found myself wondering if some of the clergy wives I met  if truth be told, were like my classmates.  If challenged, would they weep and would I see a very different side of them?

That was over 30 years ago.  Eventually I came to peace about the whole thing, surrendered to a plan I did not understand, and obtained my clergy credentials.  I ministered alongside my husband, encountered some of those wrenching transitions.  We never did go overseas.  That is a long story that caused deep pain for a long time. 

Eventually Ken realized it was me, not him, who was cut out to be a pastor.  He did become a missionary, a "nationally recognized home missionary with the Assemblies of God" actually.  That's what the official certificate says.  As I've shared, he stopped working in December and has not been back.  He spent 22 years ministering to prisoners as a chaplain.  One of the other Wisconsin Department of Corrections chaplains recently wrote him a get-well note, saying he was saddened to hear of his forced retirement and adding, "That makes me the new senior among us.  I'd rather not be."

I need to stop writing and get something together to share with my friends at The OASIS.