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.

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."

"What?"

"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.