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.

Friday, September 27, 2013

Time Keeps On Slippin' and Transitions Keep Coming

I have been singing this Steve Miller classic all week.  In the 70s, when the song was a hit, I got married, birthed two children, moved away from California (never to return except on vacations) and embarked on a theological struggle.  I did not set out to do that last one.  It just happened as I matured and asked questions and became a more astute observer of the world.  I'll write more about that in another post.

What I did not do much in the 70s was think about aging or changing.

I was busy.  I thought about being a good wife to my Marine husband, about being a good mom, about work, about how to live reasonably on a tiny budget, about getting through the next move.  We moved from the San Fernando Valley to Oceanside's Camp Pendleton, then to Camp Lejeune in North Carolina, and in Ken's final duty station, to Washington, DC.  In the 80s we moved to North Dakota (what a shock to my California system that was!) and I earned a theology degree.  I hadn't planned that.

Come to think of it, not much in my life is what I planned--except being married to Ken, who I met when we were teens.

My life has been all about transitions.  They come to everyone, but for reasons that are a mystery, transition for me has been nearly constant.  Constant transition.  Hey, that is an oxymoron, but true.  I have often found myself envying those whose life seems to have been comfortably settled and stable. I am surrounded by Midwestern folks whose forebears came here and who today are happy to have their family all living within 100 miles.  As for me, I find myself homesick for a place that never existed, a stable family that never was, a life I never had.  I loved my family, but contrary to what many people seem to think about me, my family life was often unpredictable, bewildering, confusing and sometimes frightening.

When I married Ken, I thought my life path was pretty set.  I expected that Ken would, as he had planned, be a "lifer in the Corps" and retire as a youthful 40-something with a nice pension.  He'd go to work for some private company and make good money as a programmer or a systems analyst.  I'd be a stay-at-home mom.  I never thought beyond the "mom" stage.  That is what women did in my world. 

Change is constant for military families. It is what you sign up for if you are a service member or you choose to live life with one.  Making friends only to lose them, finding a church only to depart, developing something so you can turn it over to others--that was a given.  But it is change that is generally expected as part and parcel of military life.  So I expected transitions, but I never expected most of the ones that came.

A big one, early on, was that after nine years serving Uncle Sam, Ken decided not to reenlist .  His lifelong dream had changed and he had new goals.  He was going to be a missionary.  Some people, back in the day, found that amazing.  A Marine turned missionary?  So we went off to the praries of North Dakota.  Ken got a mostly free education in return for helping the school set up its first computer system.  Very primitive by today's standards!  And, as the spouse of a student, I got half off of my tuition.  An offer we couldn't refuse!

When I need to remember when something occurred, I first think, "Where were we living?"  followed by remembering when a child was born.  What was Ken doing at the time?  Was Ken the Marine who had a stellar computer programming career, or a student, or a pastor or a fuel truck driver, or a chaplain?  Was I working?  Studying for midterms?  Struggling through my purpose in life?  Working with teens?  With adults?  With children?  Was I teaching a Bible study, or was I preparing sermons?  Was I trying to forget that I felt called to something more than being a good pastor's wife?  Were we in Ellendale? Tomahawk? Luck?  Grantsburg?  Frederic, or Plymouth or New Holstein?  Was I an Elderly Benefits Specialist at the Department on Aging in Polk County?  Or was it at Legal Action of WI in Milwaukee?  A Long-Term care Ombudsman with the Board on Aging?  Was I a pastor's wife or was I the pastor?  I have "worn a lot of hats" in my life.  Sometimes several at once, making me think of a favorite book from childhood,"The 500 Hats of Bartholomew Cubbins" by Dr. Seuss.

Life has been a series of corners turned.  I mean unexpected, unplanned, sometimes bewildering, gut-wrenching corners.  The only constant of my life has been that a change would come soon.  Another transition.  Another time to regroup, rethink, remake and reform. 

The transitions were sometimes exciting.  I have never been a person who feared change.  I usually see change as a good thing, and I know that it is true that nothing lasts.  Since change is inevitable, I have chosen, most times, to embrace it and make the most of it.  I am adaptable, and I refuse to be "set in my ways."  I remember that when my father said that about someone, I knew it was a bad thing.  I have resisted being "set in my ways" all my life.

Along the way, as I tried to figure out who I was and what I wanted to do or be, time has slipped into the future.  A future I never imagined.  I got a big dose of time-slipping reality this week.

This time of change is a little harder.  More about that in a future post.  For now, my lunch is finished and I need to put on my Insurance Agent hat and make some phone calls.

Friday, September 20, 2013

Ken's Ordeal, Part 10: We Come Full Circle

Ken, and our daughter, Kris, arrived home late last night from the latest Mayo excursion.  I didn't take Ken this time because of scheduling conflicts.  And it seems we have at least a partial diagnosis.  And with that diagnosis, I'm trying  to think towards the future.  Having any diagnosis, after nearly a year, is a victory of sorts. 

Yesterday they did a nuclear imaging scan that is aimed at locating inflamation in the body.  This morning Ken told me that it was clear his joints were "on fire."  He has rheumatoid arthritis, apparantly a "raging case."  He is in the 10 to 20% who have a version of RA that does not show up with the usual tests and does not respond, even a little, to steroids. 

I am trying not to think of the rheumatologist at St. Luke's Hospital in Milwaukee.  Nor the one at the Aurora Clinic in Menominee Falls (he did mention rheumatoid arthritis, but did nothing except prescribe steroids that did not work and then abruptly resigned and went elsewhere).  Nor the one at the Marshfield Clinic.  Especially that guy--the one who announced with complete confidence that Ken did not have any sort of rheumatic disease but clearly had carpal tunnel syndrome and diabetic cheiroarthropathy.

Allow me a necessary digression for a bit.  I have mentioned that Ken had a knee replacement done some time back, and it was one of the relatively rare knee replacements that turned out to be a total failure.  Because of his high risk of infections, his serious "venous insufficiency" (lack of blood flow, mostly due to blood clots) and other issues, the orthopedic surgeon here has told Ken that he would not even consider taking the prosthetic out and putting in a new one.  So he has endured a swollen and painful knee for over a decade. 

Now, the swelling and pain have increased to an alarming level, so we had an orthopedic doctor at Mayo take a look, since we were there anyway.  As I mentioned in the last post, he says the prosthesis is loosening from the bone and recommended immediate surgery.  He also said that even though tests have shown no sign of infection, there coudl be an infection in the bone near the knee that could only be verified by taking a tissue sample during the surgery.  He said "In our world we would assume this knee is infected until we rule it out." 

Remember that back in spring Ken had his third bout with serious cellulitis (a leg infection)?  He had a follow up visit with the infection specialist here.  The knee surgery issue came up.  The doctor's advice was "I agree with the ortho surgeon here.  I absolutely do not recommend it.  The complications could be dire, and there is no way of knowing if the next knee replacement would be any better than this one."  He described several horror scenarios that I won't bore you with, but it may very well not end well at all if Ken has knee surgery again.

Additionally, as I wrote last time, the knee surgery would be done at the VA hospital.  He did advise that if Ken decided to go ahead with the second knee replacement (frown and head shake) that he should be notified because of the serious danger of infection.

Ken decided to forego the surgery until he "couldn't walk anymore." 

Back to Mayo.  After yesterday's tests, the Mayo rheumatologist told Ken that the Rx he would give him would cause lowered immune system function.  In short, if he gives him the Rx that he hopes will help turn off the inflamation, and thus reduce his excruciating pain and his ongoing joint deterioration, he could cause any hidden infection in the knee to enter the rest of Ken's body.  He says it is absolutely imperative to do the knee surgery before anything else is done.

And here we thought the knee was a "side issue" at Mayo.  And we are trying not to think of Ken's numerous bouts of infection and what could happen with an Rx that causes even more liklihood of infections.

He recommends the knee come out right away.  Then, at some future date when danger of infection is past, he will try Ken out on a drug to deal with the RA.  And then, if necessary, the surgery on shoulders and elbows to release the nerve can be done.  He does agree with the dapper hand surgeon that there is clear nerve inpingment, he just disagrees on the cause.  So the surgery that was scheduled for next week is now cancelled. 

The doctor strongly suggests that the knee surgery be done at Mayo so that the team there, orthopedic specialist, infection specialist, rhematologist, etc. can work together to give Ken the most hopeful outcome. It is not, however, likely that the Veteran's Administration will agree.  He did tell Ken that he would "say whatever I need to to try to convice them of the complexity of this." 

Ken is calling the VA today to see if we can get an orthopedic surgeon there, or someone in VA administration, to talk with the doctors at Mayo.  Either way, knee sugery must be done right away.  In Ken's case, this may involve (even with all horror scenarios aside), weeks of recuperating and bed rest.  But the decision is made.  No knee surgery, no RA meds.  So...

And as I'm trying not to think of the doctors who told Ken that this "isn't rheumatalogical," I'm also trying not to think of how we said, months ago, "This has to be something systemic.  It sure seems like rheumatoid arthritis."

We must focus on the next step--somehow negotiating the VA system to get a doctor who can speak to a doctor at Mayo.  And if the VA insists that the surgery be done in Milwaukee, getting a plan in place.  If only every doctor we see didn't put in the notes, "....very complex case..."

But we have a possible diagnosis.  For that, I am thankful.  And I am thankful for those who are still thinking of us, praying for us, and reading these posts after all these months.  (Not nearly as many, of course.)  Thinking of all of you, some of whom have never met us in person, is overwhelming.   

Saturday, September 14, 2013

Ken's Ordeal Part 9: An Answer--But Wait

Last time I wrote about the visit to orthopedics to have Ken's knee checked out.  Immediate surgery was recommended.  We have since confirmed that the surgery will need to be done at the Veteran's Administration Hospital in Milwaukee.  But doctors are disagreeing on that surgery.  I'm not talking about that in this post.  Maybe I'll write about that sometime in the future.  One thing at a time, I guess.

Our September trip to May approached.  This time, cost notwithstanding, we decided to find a motel with a pool.  Days at Mayo can be quite wearying and a sauna, hot tub, and pool sounded like a good end to a day at the clinics. We opted for the venerable Kahler Hotel.  The Kahler is a bit faded and worn, but still retains evidence of its former glory, and it includes several restaurants and a Starbucks.  It also has a tunnel (don't think dark and moist--think lined with pricey shops) that leads to the Mayo complex. 

Our room is on the 8th floor.  I'm sitting in it now, typing this blog post at a small desk.  The window is open and a cool breeze blows the curtains.  An exausted Ken is snoring softly a few feet away.  The room is tiny.  It might be the smallest room I've ever paid money to stay in, but the furniture is lovely and the small chest of drawers has a marble top.  The armchair touches the desk chair.  There is no room for it to be placed further away.   

When we first opened the door yesterday, we were quite surprised.  Well, we reasoned, we won't be spending time in here.  We'll be over at Mayo.  And unlike our previous trips, all appointments were on one day.  This visit to Mayo was mostly centered on the nerve compression and possible surgery to correct it that I mentioned two posts ago in Part 7.

The long drive from the east side of Wisconsin had been a rather quet trip.  There just isn't much to say at this point.  We were hopeful and a little awed the first trip here.  This was our fifth trip, and that expectation has worn off.

Ken was scheduled for an early-morning blood draw today, so he was gone from our room well before seven.  As usual when we come to Rochester, I had slept fitfully.  I tried to stay asleep after he left, but I was drawn out of bed by a golden halo of light that shone around the heavy drapes and directly into my eyes.  Pulling back the curtain I was greeted by blazing sunlight in a bright blue sky.  My spirits rose a bit.  "Gonna be a bright, bright sunshiney day..." -- I heard the song in my head.  May it be so, Lord, I said.  That is about as much prayer as I can manage these days.

The orthopedic surgeons are housed on the 15th floor of the Gonda Building.  The Mayo Building is at one end of a long, windowed hallway, always full of light, and the Gonda Building is on the other end of the hallway. "The Mayo Clinic" consists of both buildings, plus more.  The Mayo Building clinics are somewhat varied in appearance, but the large Gonda Building clinics all look the same.  Each one has striking artwork.  Each clinic area is lined with beautiful wood.  Each clinic is filled with dozens of comfortable chairs.  Each has a long reception desk with two or three people present to check folks in.  Sometimes it is disorienting.  Are we on the 5th floor, the 8th floor, the 15th floor?  

We are eventually called to Door A and we move down a gleaming hallway, past exam room doors that each have a bank of at least ten colored lights.  Some doors have nearly all ten lights lit, others one or two.   Blue, yellow, red....we don't know what the rainbow array signifies, but it is part of every Mayo Clinic exam room. We've started to joke about it.

Soon we meet the chief resident on the floor.  He, like all Mayo doctors, wears a suit and tie.  No knit golf-types shirts here, and no lab coats.  It strikes me that we have yet to meet any female doctors at Mayo.   

The pleasant and efficient resident looks about 19, but I know he must just look young for his age.  He tells me he is in the last year of his five-year residency.  He asks lots of questions, reviews Ken's MRIs, puts him through a series of painful tests.  Then he exits to find "the boss," an orthopedic surgeon specializing in hand issues. 

The boss turns out to be Indian or Pakistani, a small, dark man with an astonishing amout of hair product in his rather long curls.  His suit looks expensive and is beautifully tailored.  His shoes were amazing.  I look at them and then at Ken who mouthes, "See his shoes?" when the doctor is looking away from us.  The shoes are narrow and pointed, a highly-polished tan and cream set of wing tips.  They are gorgeous.  Ken later commented, "That pair of shoes must have cost more than all the shoes in our closet--yours and mine together." 

He repeats everything the resident just did, and he carefully examines Ken's hands.  He notes the deep divits (the resident called it interossei wasting) and the weakness, etc.  Both doctors agree.  This hand problem, and likely much of the hand pain, is due to compression of the ulnar nerve.  (That nerve we call the "funny bone" that hurts a lot when you happen to whack it just right.)  As we expected, he wants to surgically release the nerve. 

He also talks about shoulder surgery.  His description is complicated.  We are not sure exactly what is involved, but he says he will fix the shoulder and the elbow during the same outpatient surgical visit.  Each will be minimally invasive.  The pain should be reduced by at least 30% to as much as 90%.  He will start with the left shoulder and elbow and after those heal he will schedule the same surgeries on the right shoulder and elbow.  After much conversation, surgery is scheduled for September 26th.

We should be feeling better, because at least there is a plan and a partial diagnosis.  We aren't.  I am afraid to be relieved, and Ken is thinking about how the doctor told him that the surgery will only stop the deterioration from growing worse.  It will not restore hand function nor hand strength.  The nerves are dead and the muscles are atrophied.

Later he visited another section of the orthopedic clinic where he was given an ultra-sound-guided injection into his bicep.  This was the fourth time his shoulder or arm has been injected with cortisone.  It never helps, and he wanted to refuse the injection but the doctor explained that it was in a different place than before and if it helped, or even if it did not, it could help with a diagnosis.  The numbing agent never seems to work either, and the shots are always painful.  This one, Ken later said, was much worse than any of the others.  When he approached me, back out in the clinic lobby, his eyes were bleak and I could tell he was fighting tears. 

In a choked and muffled voice he said, "The only thing I was looking forward to this time was a sauna, sitting in the hot tub with you, and then a swim in the pool.  I can' t do any of that because of the injection.  Too much danger of infection."  He was frustrated and angry and I knew the tears were not about the pool.

We returned to the hotel for a quick nap, and we both went back to Mayo feeling somewhat better.  The next clinic was on the Mayo Building side, in rheumatology.  The rheumatologist has seen Ken before, and he ordered MRIs some time back.  There had been no follow up visit scheduled, a mistake on someone's part.  A different doctor had noticed and had insisted Ken have a follow up with the rheumatologist, even though no one really thought that there was much evidence of rheumatic disease. 

The rheumatologist has an interesting Australian accent.  He also wore the Mayo uniform of a white shirt, suit and tie, but he couldn't have looked more different that the surgeon we'd met earlier.  His shoes were scuffed, and his worn tweed suit coat gapped when he sat down.  He had a rather abrupt manner, but he asked Ken detailed questions (many more than on the first visit two months ago).  He looked at the lab results, reviewed cortisone injection results, pondered the list of prescriptions Ken has tried.  The MRIs he had ordered were of poor quality because Ken was in too much pain to lie still, but some things were visible. 

Gazing at the MRIs, he looked perplexed.  He made a phone call to someone who he said was "a whiz at deciphering these things" and he told the woman at the other end of the phone that he wanted her advice on a "very complex case."  After several minutes of conversation that was a foreign language to us, he thanked her, hung up, and turned to Ken.

"I'd cancel the surgery you have scheduled for the 26th."


"I agree, your symptoms indicate compression of the ulnar nerve.  But even though your lab tests show no inflammation, and even though all the different steroids you have been given, both shots and pills, have done nothing, I think the nerve compression is caused by widespread joint inflammation.  My colleague over at the MRI lab agrees. She says there is 'inflammation everywhere.'  I suspect a raging case of rheumatoid arthritis or something similar."

In about two seconds my mind travelled back to the three rheumatologist Ken has seen in three different clinics before ending up at Mayo.  This one is the fourth, and this is our second visit with him.

"How can that be...?"

"In very rare cases, we see this.  Steroids don't help.  Labs show nothing, but inflammation is there.  We must do some more tests.  No sense having surgery if the nerve compression is due to inflammation and some sort of hidden rheumatic disease process."

Ken and I nodded wordlessly.  Of course. 

He want on, "The symptoms fit, even though the tests do not.  Nerve deterioration accounts for the muscle wasting and weakness, but not the swelling you have.  I'm scheduling some very specific tests to check for different types of inflammation.  I'll talk to the ortho docs.  We will do these tests first.  If they do surgery, and the real cause is inflammation, they will only make things worse."

As I pushed Ken's Mayo wheelchair across the atrium to return to the Kahler Hotel, it was once again filled with the sound of piano music.  Evening shadows were long, and the beautiful space was mostly empty.  There was a smattering of applause, and somehow it sounded as though it came from a great distance, as the musician finished his song.  I felt invisible, alienated, small.

It seems so strange that nothing in these long months has been straightforward. We've lost track of how many doctors Ken has seen now and how many possible causes for various problems have been suggested.

We talked about how we almost didn't have the follow up visit at the rheumatology clinic.  We were grateful someone eventually noticed that omission.  Other than that, we don't know what to think. We are pretty numb.

We leave for home in the morning, and we return to Mayo for the tests on Thursday.

Monday, September 02, 2013

Ken's Ordeal: Part 8 -- Changes, and an Offficially Abnormal Test

To start from the beginning, just click on the label "Ken's Ordeal" at the bottom of the post and scroll down.

Last December we knew Ken was dangerously ill.  I have previously written about the strange mix of symptoms he called "episodes."  They had been occurring for years, baffling doctors, but were reaching a point where they were incapacitating.  In January, after a frightening visit in the Emergency Room and a subsequent hospital admission, someone finally realized that he had an extremely rare adrenal tumor called a pheochromocytoma or "pheo" for short.

We were told that it that it had been the source of his increasingly ill health.  We heard that it was often fatal and only discovered at autopsy.  We were dismayed to understand how damaging it had likely been over the years, but we told each other that when the dangerous and delicate surgery to remove it was done and his recovery period was over, we would have a "KEN IS ALIVE AND WELL" barbecue party in our large backyard.  Even though he was quite ill, we were pretty sure he would be feeling well by summer, since the "pheo" was coming out in February.  All would be fine in time for a warm-weather party!  Things could go back to normal.

Fall is nearing, and all is not fine.  Ken recently said to me, half in jest and half in sorrow, "Well, maybe we will just have a KEN IS ALIVE party." 

If you have read my little "Ken" series (sadly, much longer than I thought it would be) you know that some of his symptoms have disappeared or stabilized, but many problems have remained or even worsened, the worst of which is excruciating pain in his back, shoulders, arms and hands. Methadone supplemented with Oxycontin just take the edge off the worst of the pain, the severity of which has made it impossible to do much of anything.  Some days he can hardly talk.

Many things have changed as long months have passed with no diagnosis for Ken.  He has not been able to go to work at his job as a prison chaplain for nearly ten months.  A few weeks ago he went to the prison to get some things out of his office and to talk with someone in the HR department.  Since I'm the driver these days, I went as well.  It was strange. So familiar and yet so different. 

We tried to be at the chapel during a time when inmates would not be there, but that didn't work out.  Many inmates were happy to see him.  Others told us they had been praying.  One looked at me with tears in his eyes, simply saying, "We miss him."  I overheard one say to another, "Oh, is that the 'old chaplain'?  The one that's been gone?" How strange to realize that he had heard of Ken but never seen him. 

The Department of Corrections will finally be hiring a temporary replacement.  When Ken is actually retired (right now he is on disability leave) that person will likely become permanent.  When we went to the administration building we were greeted by social workers, security guards, and others, many of whom have sent cards and notes.  Some have known Ken for years, and it was difficult to see their not-so-hidden surprise at how much thinner he is.

Some people think that no longer being employed in the negative environment of a prison would be a relief.  They are partly right.  Prison can be a toxic place for staff and inmates alike.  The last few years have been especially challenging as changes have come that made the ministry Ken tried to do increasingly frustrating.  He said to me that the inmates themselves were the least of his struggles there.  Ken cared deeply about "the guys" and he felt called to do what he did.  He is good at being a chaplain.  It wasn't easy, but he tried hard to make the chapel a place of grace, of healing, of respect and acceptance, of peace and light in a dark place.  Not being there will be a relief in some ways, but it also means the end of not only Ken's employment but his ministry focus and a large part of his identify.    

Last week Ken's disability insurance company directed him to apply for Social Security Disability immediately.  Otherwise they will stop all payments.  We figured we'd do this soon, but soon has become now.  So I went online and started the process.

Ken's health insurance stopped on August 31st.  Mine too.  I found a high-deductible plan and Ken will use the Veteran's Administration (VA) for his medical coverage.  While many of the doctors and other employees are excellent and very concerned about veterans, others are not.  The worst thing about the VA, however, is the red tape, the seemingly endless forms, referrals, waiting, and so on. Navigating the overloaded bureaucratic system is often a daunting task.  Ken is already rated 100% disabled by the VA, so even though he had not used his medical benefits, he is eligible for them on a "fee based" status.  This meant that he could continue using his non VA doctors and the VA would pay.  We didn't need them to, so we didn't ask.  Ken had good health insurance from the Dept. of Corrections.

When the famous Mayo Clinic gave Ken the go ahead to become a patient, we knew that to try to get his state insurance to pay would involve a battle.  Therefore, we decided to utilize his VA benefits for the first time.  He made seven phone calls to the VA, trying to get verification that his Mayo visit would be covered. He left seven voice mails. Weeks later, with not one call having been returned, he finally connected with a person on the other end of the phone call. She was very helpful.  I'll call her Val for VA Lady.  She assured him that the VA would pay for clinic visits at Mayo.  That was in May, just before our first trip to Rochester, Minnesota.
On Tuesday, the day we were leaving for his third stint at Mayo, Ken came into the bedroom just as I was finishing loading my half of the suitcase.  He had a blank look on his face, and he said, in an oddly flat tone, "I just got a disturbing call from the VA person."  The details were complicated, but the upshot was that Ken was to immediately stop going to his current providers.  He was to appear at an appointment scheduled in Milwaukee (about 70 miles away from us) with a physician who would become his primary care doctor.  He would have to be assigned the various specialists he might need and appointments would eventually be set up.

To say I was stunned is not adequate.  I can't describe my despair.  I felt like a wall caved in on us.  I was deeply afraid, and I was furious.

I lost it. 

Losing it is not something I typically do.  But I immediately called Val and told her I was extremely angry and upset.  I told her just what I thought.  I told her I could not drive Ken to Milwaukee for his numerous appointments.  I told her I had a job.  I told her Ken was too sick to wait months for the VA to get him scheduled with all the people he would need to see.  I told her some other things...and then she interrupted me. 

She said sternly that she did "not appreciate being yelled at after trying my best." She informed me she had been working hard to get Ken what she thought he had asked for. 

Turned out that for whatever reason, Ken and Val had a huge failure to communicate a while back. Neither of them realized that something was set in motion that Ken did not want.  I don't think I was yelling, but I can understand why it sounded that way to Val.  I know how it feels to be chastised unfairly.  I also know how it feels to be part of, or dealing with, a bureaucracy and to be trying, in the middle of red tape, to do a good job for people.  I was embarrassed and ashamed. 

So then I lost it in a different way.  I tried to swallow the huge lump in my throat, tried to hold back my tears, tried to stuff my sobs back inside.  I failed.  I couldn't speak for crying.  Val, on the other end of the phone, asked, "What do you need me to do?"  I couldn't respond.  I was afraid she'd hang up on me, but she must have realized that I was sobbing, even though the phone was away from my face. Eventually I managed to pull it together enough to speak.  Thankfully, Val listened.  She said she would undo what she could of the process she had begun.  She would cancel the appointment in Milwaukee.  We could continue to visit Ken's docs here, for now.  The day will come when that is not allowed.  We don't know when that day will arrive, but she told us to expect a phone call soon from the local VA clinic. For now, outpatient procedures at Mayo would be allowed, but any surgery would have to be approved and would likely have to be done at the VA hospital.

Numbly, we loaded the car with our suitcase, our satchel of medical paperwork and a small ice chest. Once more, we headed west for Rochester. After a frustrating day with many delays we arrived and found our motel.  We were mostly silent as we ate a late dinner, unloaded our stuff and went to bed.  Neither of us slept well.  When I did sleep, I had bad dreams.

Next morning we walked the short distance to the clinic  It all had an eerie sense of deja vu as we made our way down a wide passageway lined with drawings of the Mayo brothers, into the beautiful marble-floored Gonda building and under the Chihuly glasswork. This time Ken could not walk far so I pushed him in a Mayo wheelchair. The flowers were more lush than last time, but otherwise all was the same--beautiful buildings, helpful volunteers, interesting artwork, music in the sun-drenched atrium and the exhausting routine of being a "Mayo checker" which means sitting in a clinic hoping they will fit you in so you can get more accomplished in less time.  Almost everyone at Mayo is from somewhere else. 

Ken had a gastric scope, some more lab tests, and a strange test to check function of the autonomic nervous system.  We have appointments in September with rheumatology and the hand clinic to talk with the surgeon who expectes to operate on his elbows.  "Checking" at those clinics was not successful.  We hope we don't hear from the VA prior to mid September when we are scheduled for the actual appointment. 

He visited an orthopedist who examined his grossly swollen left knee and told him it would need immediate replacing.  The knee replacement he had about ten years ago was a dismal failure, but no one has wanted to do surgery again on that knee--too many possible complication due to Ken's many leg infections and blood clots.  Well, now he is losing bone and the pain is intense and it "must be done, and soon."  It was refreshing to be told something specific and to be given, however unpleasant, blunt directions.  The kind-faced older doctor was telling us how he would confer with a "surgical colleague to get this scheduled quickly" when we interrupted with a short version of the VA story.  "Ah," he said.  "Well, they have resources in Milwaukee.  They will not let you come here.  I'll send my recommendations to your home address.  You can contact the VA with my consult notes."

Our last visit was with Dr. Daniels, the internist who has coordinated Ken's many tests and consultations with specialists at Mayo.  We both like him very much.  He told us that the autonomic nerve test was "abnormal."  The autonomic nervous system controls all those things we don't think about; heartbeat, breathing, sweating, digestion and so much more. 

It is strange how it can be a relief to hear bad news.  Bad news is better than a continual morass of pain and illness with no diagnosis. 

Peripheral neuropathy is common in diabetic patients.  It causes pain and loss of sensation, usually in the feet and sometimes hands and legs.  Apparently, Ken has neuropathy of the nervous system on a much deeper level.  This is probably due to the undiagnosed effects of the pehochromocytoma, the nasty and rare little adrenal tumor.  Since the surgery to remove it in February, his blood sugar levels have been largely stabilized.  But the damage is done. 

Dr. Daniels forthrightly admitted that he does not know what that means, exactly.  Could it be the cause of weight loss?  Low blood pressure?  Fatigue and general illness?  Extreme pain?  Low hormone levels?  He did not know.  He also did not know what measures could be taken to deal with neuropathy of the autonomic nervous system.

He will confer with a neurologist this week.  He will also try to expidite surgery on at least one elbow on an outpatient basis, before things stop and all depends on Uncle Sam and the Veterans' Administration.

Speaking of veterans, the day we left for Mayo we received a notice from the Department of the Navy about the water toxicity at Camp Lejeune.  They are trying to find all the vets who were stationed there so that they notify people about the possible health effects.

We are longing for normal, but we both know life will not return to how it was.  We are not, and will not be, the same.  Change comes, and things never go back to how they were.  There is only forward.

So we, once more, wait.  This time we have a diagnosis.  We hope for a plan to cope with the nerve damage.  We hope to not hear from the VA until we have done all we can at Mayo.

Friday, July 26, 2013

Ken's Ordeal Part 7: A Mayo Deja Vu

To start from the beginning, just click on the label "Ken's Ordeal" at the bottom of the post and scroll down.

One of the Mayo entrances.
There is little to say in this installment.  Our second trip to Mayo Clinic was mostly for follow-up visits.   

The neurologist had ordered a test Ken had already had done in Sheboygan.  It is a nerve function test, very unpleasant and quite painful.  Ken was not anxious to repeat it, of course.  It was a good thing he had it done again, however, because this time some damage was revealed.  Perhaps the difference in the two tests is because Mayo's is more sophisticated, or perhaps the damage has grown worse and so showed up.  Anyway, he may have a compressed ulnar nerve in both elbows.  This is the result of thickened ligaments/tendons--a consequence of uncontrolled diabetes. Remember the "damned pheo" and how it caused wild swings in blood sugar?  This compressed nerve could be the cause of some of the deterioration, pain, and swelling in his hands and may require surgery.

The front entrance.
He spent time with two orthopedists who examined his shoulders and reviewed the shoulder MRI results.  There is some neuropathy (diabetes again) but nothing that would account for the limit in range of motion and the extreme pain.

As for his general illness, weakness, low hormone levels, low blood pressure, continued weight loss, etc. there were still no answers.

We met again with Dr. Daniels, the internist who started the process at Mayo.  He was dismayed about the Camp Lejeune situation.  He told me he had read the entire article and had then done some follow-up research.  Unfortunately, there are no tests that would, at this late point in time, confirm that the toxins in Lejeune's water had caused any of Ken's problems.  "That doesn't mean they didn't" Dr. Daniels said with a shake of his head, "just that we won't be able to confirm it."

He wants Ken to come back for another round of lab tests that will look for toxins, heavy metal poisoning and other issues and also wants him to visit the Gastroenterology Clinic.  There are other diseases that can cause neuropathy besides diabetes, and some of them arise in the digestive system.

He is concerned that Ken may have neuropathy that effects not only peripheral nerves but also the autonomic nervous system--the delicate workings that we don't think about.  Breathing, heart beat, weight gain or loss, blood pressure, perspiration and so on.  We are trying not to think of the possible consequences of damage to the autonomic nervous system.

We go back in late August, the earliest appointments we could get.

Outside a large street sale was going on with many booths containing jewelry, beautiful artwork, food, and so on.  You can see Ken on the bottom right, waiting for me on a bench.  It was a steaming hot day but the booths were busy.


I took this photo from the 13th floor inside the Gonda Building.  On the left is the ultra-modern Siebkens Building, and on the right is the beautifully historic Plummer Building, both part of the Mayo complex.  Inside the Plummer Building is a little museum with the original Mayo brothers' offices and other clinic memorabilia.  The inside of this building is gorgeous but cameras are not allowed. 

Sunday, July 07, 2013

P.S. to the Last Post of Ken's Ordeal: "Camp Lejeune's Toxic Legacy"

I forgot to mention something in the last installment (# 6) that might be significant to someone. 

The day before we left for Minnesota, I was sitting in the waiting room at my doctor's office and picked up an American Legion magazine.

The cover pictured a little girl who looked strikingly like our daughter, Kristina, at the same age. Opening the cover, I felt a little jolt of surprise.  The title article was the same as this post, "Camp Lejeune's Toxic Legacy." Ken was stationed at the Marine Corp's Camp Lejeune, near Jacksonville, North Carolina, for three years in the mid-seventies.  Our family, at that time consisting of Ken, me, and our baby daughter, lived at Tarawa Terrace, an enlisted housing neighborhood in Jacksonville, about three miles from the base.

I was appalled by what I read, and I grew increasingly angry.  From the mid '50s till the mid '80s,  Marines and their families were unknowingly subjected to alarming levels of toxins, reportedly the highest known levels ever found in the entire nation.

Click Camp Lejeune's Toxic Legacy to see the article for yourself.

Other links of interest are The Few, The Proud, the Forgotten and Camp Lejeune's Marines Put in Cancer's Harmful Way

An internet search will lead to several disturbing accounts of the water contamination, the slow response of Lejeune's leadership, the lackluster warnings, and the continued efforts to establish links to many mysterious diseases.  The little girl pictured in American Legion Magazine died of leukemia.  Cancer is the most obvious of the diseases that have been suffered by Marines, former Marines, and their family members in alarming numbers.  However, there are many more.  To say I am disgusted does not even begin to describe my emotions upon reading this article and doing some subsequent research.

Will we find some definitive link between Ken's pheochromocytoma, or the other issues he is now struggling with?  Likely not.  But perhaps this information can be of use, or can help answer someone's long-held questions.

We will always wonder. 

Saturday, July 06, 2013

Ken's Ordeal Part 6: The Mayo Clinic

To start at the beginning, click on the link at the bottom of this post, "Ken's Ordeal."

Among other doctors, we visited an allergy specialist, wondering if perhaps Ken's continued illness could be due to some sort of food or other intolerance.  This doctor didn't have any real answers, but he did suggest Ken try out a gluten-free diet.  We have both been gluten free for well over a month.  No change.

He also said, "You really need to get to Mayo."  But he gave us a "doctor to doctor" phone number and specific instructions of how to proceed.  We followed his advice, got a referral from Ken's new primary-care physician, and got an appointment for June 27th. 

We already are incurring some significant medical bills.  Our insurance does not extend out of state; Mayo Clinic is in Rochester, MN.  We made inquiries to our insurance company with no success--and then it dawned on us both that Ken is rated 100% disabled by the Veterans Administration and so has the VA "gold card."  We don't usually access the VA system, since Ken has insurance through the Dept. of Corrections, but after numerous phone calls to the VA, we finally were given the go-ahead for Mayo.  The Veterans Administration would pay the bill. 

Then Ken developed cellulitis in his leg.  That is a story in itself, and I won't take time to share it.  However, this is a severe infection that has twice landed him in the hospital; the last time was for over a month.  We were told he would require at least a month of antibiotics and would not be able to travel.  However, things cleared up much more quickly than expected, and the infection specialist told us the trip would be all right. 

We awaited the journey, feeling hopeful but also afraid to be too excited.  We had been happy to get the referral to the Marshfield Clinic and that visit had been a deeply depressing disaster.  The Mayo Clinic, however, is generally acknowledged to be one of the best in the world.  Their history is fascinating, their research is wide-ranging and impressive, and their staff is numerous. Since people come from all over, the doctors there have a wider range of experience than elsewhere.  Mayo Clinic, Saint Mary's Hospital and Rochester Methodist Hospital form the largest integrated medical center in the world, providing comprehensive diagnosis and treatment for about 350,000 patients each year.

Noah and Lawnmower 
We drove to Minneapolis and spent some time with our son, Joshua, and his family.  It was fun to see our little grandson, Noah, and to catch up with Josh and Stephanie and to spend some time with Keith, Ken's brother.  Ken had purchased a bubble-blowing lawnmower toy for Noah, and it was a big hit.  We tried not to think about the trip to Mayo.

But the day arrived, for the two-hour trip to Rochester.  The weather was beautiful with temps in the mid-seventies.  The countryside was beautiful too, with rolling, lush green landscapes.   

We were grateful not to have to spend money on a motel.  It is expensive to stay in Rochester (a beautiful little city) despite "Mayo Clinic rates."  Ken has a friend who lives in Rochester and he and his wife were away for the week and graciously allowed us the use of their home.

We were a bit overwhelmed with the enormity of the Mayo Campus.  When we passed the Welcome to Mayo sign, I got teary-eyed.  I don't know if it was relief, hope, fear or all three. 

Flowers are everywhere.  So is artwork.  There is sometimes music. The entire campus is beautiful and there is an atmosphere that is full of hope.  It is different than any other medical facility I have entered--almost a sense of being somewhere sacred.  Nearly everyone we encountered, from doctors to technicians to nurses to janitors and volunteers, were smiling and helpful.  I expect their training in personal relations must be pretty extensive, since people come from around the nation and the world--and often are very ill or very mystified about what is wrong with them.  All of the doctors took their time and listened carefully.

Ken by the welcome sign. 
There were about a dozen building in all.  Some are for education, research, and more.  There is a building for primary care physicians who serve the Rochester community.  The Gonda Building and the Mayo Clinic Building are connected and are where most out-of-town patients are seen.  The Mayo Clinic is really many individual "clinics" (at least one or more for each of the various specialties).  This tiny picture of the connected two buildings that I found on their website gives you an idea.  Each building is larger than most hospitals.   The two hospitals, both large as well, are not in the picture.  This is just the clinics.


Artwork from the great glass-blower genius, Dale Chihuly, lines the ceiling of the main entry to the Gonda Building.  I couldn't help looking at it every single time we passed beneath it. The atrium, part of the connecting hallways between the Gonda and Mayo building,  is full of music each day at lunch time.  The sculpture on the wall is called "Man and Freedom" but it made me think of prayer. 
One day, waiting for Ken to finish up some lab tests, I sat in the atrium for nearly two hours.  There is a beautiful grand piano there.  A middle-aged Asian man sat down at the piano, smiled, and began to play what seemed like a soundtrack of my life.  He played hymns and a few contemporary worship songs, theme music from Disney classics, Broadway tunes, and some classic rock arranged for piano, just for good measure.  An elderly lady seated in an chair near me hummed along, and soon I was humming along too.  We chatted, and I learned she was from Indiana, and she had been at Mayo for three days.  When Ken returned, I thanked the piano player and he nodded and smiled and kept playing.  His musicianship was extraordinary, and here he was spending time playing at Mayo.  I wondered about what he did for a living.  I hope he gets paid, somewhere, for making such beautiful music.

Another day when we passed through from the Gonda to the Mayo building, someone dressed in surgical scrubs was playing, "There's Just Something About That Name."  I hadn't heard that worship chorus it in years, and the beautiful melody washed over me like a sweet breath of Heaven.
The days were long.  After our initial meeting with a an internist, Ken had consult appointments scheduled for mid July.  Of course, we (along with most others) came a long way and didn't want to go home and come back later.  Getting into each of the clinics for a consultation can be a bit like waiting for a "stand-by" seat on a plane.   Doctor visits are longer than the industry standard.  They take their time and they are wonderful about answering questions.  Since all the individual clinics are in one location, you can often access several specialists in a matter of days instead of weeks or months.  The schedulers do their best, but they can't always get patients into each clinic.  So Mayo uses a system called "Checkers."  Checkers are people who sit in a clinic and wait, hoping that if someone doesn't show up for a scheduled appointment, they will be given that appointment time.  Every day, each clinic has many such checkers.  We were among them, and we expected answers.
Some, like a woman from South America, were angry at the wait.  Her daughter approached the counter in the neurology clinic and loudly demanded that her mother be seen immediately, asking, "Do you know how much it cost her to get here?"  I felt bad for the South American lady, and bad for the staff at the counter, who each day are confronted with a room full of people waiting for appointments and often an equal number of people hoping someone doesn't show up.  Most of the checkers seemed tired but philosophic about it.  Everyone is glad to be a patient at this amazing place.   Puzzles sit on tables.  Sometimes we would see someone curled up in a chair, sound asleep.
The week was boring, fascinating, interesting, hopeful and depressing by turns.  It was an emotional and physical roller coaster.  For Ken it was often extremely painful.  Ken was seen by an internist, two neurologists, a rheumatologist, and an endocrinologist.  He had many lab tests and several MRIs.  We don't have all the results yet, but those we do have are normal.   The rheumatologist disagreed with the one we'd seen in WI who was guessing Ken has Rheumatoid Arthritis.  Lab results indicate no inflammation, and steroids had no effect.
And no, we do not have a diagnosis.  What is causing his pain, weakness, weight loss, muscle atrophy, hormone depletion and more? All five doctors who saw Ken know he is very ill, and each one is mystified as to what can be wrong.  We are returning mid July for a visit to the orthopedic department, the one requested consult that didn't take place.
We are trying not to think beyond that. 

Monday, June 17, 2013

Do We Need a "Spiritual Covering?"

I am sorry to have been distracted from many things that deeply matter to me--so much so that writing here has slowed to a crawl.  I hope to be back soon.  Ken is going to Mayo at the end of the month, and we continue to seek answers. 

Meanwhile, I know of a ordained women who had expressed interest in being the senior pastor of a church not far from here.  She is qualified and gifted.  Apparently the search committee felt so as well, but expressed sadness that since her husband was not a minister he could not be her covering and thus the senior pastor position was closed to her. 

And just last week I read an article about Rev. Jack Hayford, someone I admire. He is a church leader whom many in the Pentecostal/Charimatic part of the Church could emulate.  It was a great article, except for when the author (who should know better) referred to the man being honored as "our spiritual covering."  He was speaking of how Hayford had long been a trusted mentor and advisor for him and his wife.  That is a good thing.  Thinking we need a "spiritual covering" is not. 

May I recommend this article by Gay Anderson?  It is from "God's Word to Women" and was written 13 years ago.  I would have thought it was no longer an issue.  Apparently it still is for many people.

It all began in the Garden of Eden. As we look upon the two fallen ones, gripped by the guilt of sin, and faced with a broken relationship with the Creator God, we declare: How great was the fall of man! The consequences of disobedience are in full view, for we see Adam and Eve attempting to hide and to cover themselves with fig leaves. They had lost their covering! Created in His image after His likeness, spirit people covered in his glory, filled with His power, shining in the likeness of His person--holy, but now, they stand in a covering produced by their own hands. The candle of man, his spirit, has been snuffed out. The likeness in which they were created is tarnished, no longer holy--Ichabod! The glory of the Lord is departed! What deception to ever imagine they could provide a sufficient covering for their sin!

We see the heart of a loving God reaching down, coming to make provision for the highest of His creation. The Adamic Covenant is the covenant God made with Adam and Eve after the entrance of sin. Here they lost their relationship with God, corrupted their character, lost the dominion they had been given, and caused their children to come under the dominion of sin and death. (I Cor.15:45-49 and Romans 5:12). Their merciful Creator came to reveal His provision and to restore that which was lost. Often called the "book of beginnings," Genesis is the beginning of the covenants of a redeeming God.

What a forgiving God, coming to provide the way back to Himself! He slays the animal and makes coats of skin to cover Adam and Eve's nakedness. No man-made covering could meet the demands of a holy God. Man could never provide an acceptable covering for his sin. The blood of an innocent animal was slain, which introduces a substitutionary death to cover man's sinfulness. This covenant sacrifice was the first of all blood sacrifices for fallen man and pointed to the New Covenant sacrifice at Calvary-- the body and blood of the Lord Jesus Christ.

Within the Body of Christ today a doctrine has crept in, teaching that we all need a "covering" in order to minister in our gifts and callings. The question is continually set before us," Who is your covering, and under whose authority are you?" Again, "To whom are you accountable?" Indeed, we all must be accountable, but that is specifically and initially to the Lord Jesus Christ, who causes us to walk in the light as He is in the light. Shouldn't our response be that the blood of the Lamb covers us? Men without a covering are labeled rebels having "Ahab" spirits. Likewise, women are instantly placed in the "Jezebel Camp" with all the unsubmissive, controlling, manipulative and usurping ones possessed by a Jezebel spirit. What a sad estate.

In Exodus 26:15, 29 and Exodus 36:20, 34, Moses is told to overlay (cover) (1) the boards of shittim wood in the tabernacle with pure gold. Is that not what Jesus did for us when He grafted us into Him and we became living stones in the temple of the living God? Wood is a type of humanity. The gold suggests that God covers (clothes) us with His own nature. Surely we are made partakers of His divine nature and are clothed, covered in His righteousness. When a principle is established in Scripture, why must we succumb to a doctrine of man, which Jesus hated? (Revelation 2:6,15)

When Aaron and his sons were called by God to the Levitical priesthood, they were commanded to wear white linen trunks to cover their nakedness. (Exodus 28). Now, we see the final and last priesthood, which is the Church of Jesus Christ! In Revelation 19:8, His bride is clothed and covered in fine (radiant) linen--dazzling and white, for the fine linen is. . .the righteous deeds of the saints. Ephesians 2:10 tells us these deeds (works) were prepared for us (by God Himself) to walk in before the foundation of the world was laid. Tell me, where did the idea ever come from that we need any covering other than the Lord Jesus Christ Who called, covered, confirmed, ordained, sanctified and commissioned every believer to be His representative king and priest on this earth?

One isolated passage in I Corinthians 11:5-6, which was and is based on Jewish law,

5. But every woman who has her head uncovered while praying or prophesying disgraces her head; for she is one and the same with her whose head is shaved. 6. For id a woman does not cover her head, let her also have her hair cut off; but if it is disgraceful for a woman to have her hair cut off or her head shaved, let her cover her head. 1 Cor. 11:5-6 NAS

will not suffice for those who have become sons and daughters of the free woman.(2) In Galatians 4: 21, Paul asks: "Tell me, you who are bent on being under the Law, will you listen to what the Law (really) says?" Read on and savor what Calvary purchased for every blood-bought child of God! The Apostle Paul wrote the church in Corinth that he did not come to take dominion over anyone's faith (II Corinthians 1:24). Many saints have been hindered by false teachings on covering and have not been permitted to go forth into the work of the ministry. God forgive and set us on a new path of liberty in His Spirit.

God's word to Moses in Exodus 33:22 reads: "And while My glory passes by I will put you in a cleft of the rock, and will cover you with My hand until I have passed by." The word cover here signifies: to cover over, to protect, defend, hedge in. God covered the tent or tabernacle (Ex. 40:34) with a cloud, which was His very Presence. In Psalm 91:4, the Lord's care, protection and love flows out as He promises to cover His people with His feathers. Psalm 105:39 tells us He spread a cloud (His presence) for a covering.

Tracing and highlighting the words cover, covered, covereth, covering in the scripture, God, the Almighty, reveals Himself as The One Who covers. Our Lord Jesus Christ is our covering, and His presence in, upon and over all believers is sufficient in every respect. The blood covering provided for every believer, whether Jew, Greek, slave, free, male or female, far surpasses the blood of bulls and goats, which only covered sin in the Old Testament. But now, the blood of Jesus does more than cover. It completely washes all our sin away.

Beloved of the Lord, male or female, we must return to Biblical foundations.

Jesus said, "And when one is fully taught, he will be like his teacher." Who do we want to be like? Do we wish to be like a person or institution that takes the place of Jesus, or to become like Christ through the power of the Holy Spirit resident within us?

Some years ago, I chose to receive the Lord Jesus Christ as my complete COVERING. May I share with you how the Lord brought me under His covering? For many years I taught Bible studies in my home and in the church. I'm sorry to say that I taught a mixture of God's Word and the doctrine of men. A deep desire to please my husband and those who were supposedly my covering brought me to the realization I was walking in a futile attempt to serve two masters.

Once I was invited to teach in a church. When I approached the pastor, who was our covering in a home Bible Study group, he saw no problem in my going provided my husband went along to be my covering. My husband said he felt no responsibility for that church and declined to go. Therefore, I told the church I could not come. Needless to say, the Spirit of God within me was deeply grieved, and I began to seek the Lord for His wisdom and light. This hunger to know truth began to expose the error and bondage in which I walked. How lovingly and gently He showed me Covenant love and that He alone is my covering.

I heard my Lord, my covering, ask clearly and distinctly, "Who called you to teach?" My response was, "Lord, You did." He replied, "Then go teach." That is exactly what I've done ever since in total liberty and joy! My soul escaped out of the snare of the fowler. I had to follow up with those to whom I had taught error through the years and ask their forgiveness. I removed a number of books and articles from my home and never embraced or taught from them again.

Knowing that He has called and overshadowed us with His mighty love, that He alone is our covering, and that He has set us under His holy name to give account to Him, let us walk in the liberty of the wonderful COVERING of His presence devoid of all flesh.

1. In Hebrew, more than one word is used for "cover." The word used here is defined in Strong's Exhaustive Concordance as: fill up hollows, to cover (for clothing or secrecy), clad self, close, clothe, conceal, cover self, flee to hide, overwhelm.

2. See Galatians 4:21-31.