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.
Saturday, September 28, 2013
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.
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.
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.
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.
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