Sunday, August 31, 2014

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

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

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

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

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

The rheumatologist does think that Ken had that droid-sounding disease, RS3PE, but that it was connected to the tumor and he no longer has it.  While his extreme pain remains, there is no more hand swelling.  On the contrary, his hands show a distirbing amount of muscle deterioration.  There is no real explanation forthcoming for the weight loss, continued exhaustion, or any of the other symptoms.  They are recommending he meets with a psychiatrist who specializes in helping people deal with severe, chronic pain.  The hope is to reduce the need for narcotic medications.  If that can happen, his mental function should improve too.

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

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

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

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

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

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

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

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

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

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


Chris said...

Oh Dorcas...I can't tell you how sorry I am to hear this. We will continue to keep you both in prayer. I keep hoping God will show you the big picture rather than the small one we see now. But this I know...He is still good, and He still loves both of you beyond measure. Please keep us updated. We care!

Dorcas (aka SingingOwl) said...

Oh Chris....wish I could meet you in person. <3

Rev SS said...

Ditto what Christ said ... prayers will continue, and really do hope you will keep us updated.

Processing Counselor said...

I'm so sorry to follow Ken's continuing travails. The New York Times Magazine frequently follows a hard-to-diagnose case. I wonder if they would look at Ken's ongoing problems. They pull together a team of doctors, I think.
Look them up online.
Prayers with you.

Rich said...

I wish there was something to say here to offer some comfort. With your writing about the ordeal possibly concluded is this the season for your lament?

Dorcas (aka SingingOwl) said...

Pastor Rich, I was thinking about that.

LoieJ said...

I also thought that surely you'd have something more definite, well, like a year and a half ago. I've had several misdiagnosis or "underdiagnosis", though not about serious stuff, since about 1982, so I understand how things get into the medical records, and even when disproven, they seem to stay stuck in there. It is frustrating to look back at the several doctor visits when a "specialist" hardly asked any questions, but made a proclamation. But in Ken's case, they really did try harder, at least after awhile. And for all you know, what he has is one-of-a-kind, or not yet discovered. I hope you both can find moments of energy and joy amidst the pain and, surely, depression that accompanies chronic illness.

believer333 said...

Dear Dorcas, I am so sorry to know of you and Ken going through so much sadness. Certainly you deserve better. but the world is a messy place to live, ey. My prayers will continue to be go up for you. Someday we will meet in person.

hugs in Christ,

Crimson Rambler said...

dear Dorcas, I too am disappointed for you that there could not be a definite finding, a clear course of action, a confident and positive prognosis.
But I want to say "thank you" to you for making all this misery and dread into something as helpful as possible to other folks, just as you've done in the conclusion of this post...
Prayers continue for you both.

Mary Beth said...

I read this on my phone last night so waited to reply. You are in my heart and my prayers going forward. I hate that they have not come up with a plan to help.

Love you.

Darla said...

There just aren't words to describe the emotions in my heart for you both. I know this looms tall like a giant, a mountain or some insurmountable object. I pray Father will be merciful and reveal Himself Jehovah Rapha (spelling) in Ken's life. We don't always understand what Father is doing but we do know He is good and is working an eternal glory. I know I take great comfort from Hymn's and the one that comes to mind state's "life's trails will seem so small, when we see Christ" Until we are there, life's trials can be overwhelming at times. Much love to you and Ken. I wish there was something very tangible we could do to relieve your (plural) sufferings. HUG

Dorcas (aka SingingOwl) said...

One of my favorite hymns, Darla. Worship choruses just don't work for me these days. What are future generations going to sing when in pain? :D Thanks, and love to you and Bob.

Marilyn said...

Dear Dorcas, I echo exactly what Darla said. I certainly do not understand but through it all the Lord always has His purpose. Our prayers continue for both of you daily so He will strengthen you emotionally to persevere. Keep looking into His beautiful face and hopefully the things of earth will grow a little dimmer. He still may have a miracle in store and then He will be glorified!!

Anonymous said...

I found your blog via your Amazon review for Moonlight Sonata at the Mayo Clinic. I am so sorry to read that your journey has continued. We are on the precipice of a visit to Mayo, and have long ago lost count of the number of specialists I have seen. Your review stuck out to me for the same reason Nora's book did - both a gift to read about the reality of living out a medical mystery in a country with the world's best medical doctors and in a life previously marked by ministry. All while juggling comments from people like some above that are attempting to be helpful, but sting: "He is still good, and He still loves both of you beyond measure." Ouch. My honest human response is What good is Love when it allows such pain for so long? And without measure? How great does love have to be to at least ease a person's pain level? I think that everyone who quotes "God is good" and "He love you" to someone in chronic pain must as a requirement have faced unrelenting pain part of a mysterious diagnosis first. I am sorry that you are both still suffering, and wish you well in the midst of the deep valley you find yourselves.

Dorcas (aka SingingOwl) said...

Anonymous, thanks for stopping and taking the time to comment. I hope your visit to Mayo will be fruitful and there will answers and appropriate treatment.

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