Monday, May 06, 2013

Ken's Ordeal Part 5: Waiting

If you wan to start at the beginning, click the link labelled "Ken's Ordeal" at the bottom of this post or in the sidebar, and scroll down.

There were many good, and likely life-saving results of the discovery and removal of the pheo and one of Ken's adrenal glands.  His blood sugars have stabilized.  His blood pressure is on the low side.  His heart tests are all normal.  There are no more "episodes."  The surgeon was pleased with Ken's "numbers" when he saw him.  He had no explanation for the pain, continued weakness, and so on.  He said, "I don't think it was due to the pheo.  You not only had fleas, you had fleas and ticks.  They just happened to show up at the same time.  I hope someone can discover what else is wrong." 

So the attempts to find a diagnosis continued. Some things that have happened are just too personal or painful to share on the Internet.  The last three months have become blurry in my mind.  There have been so many doctors appointments and so many tests that it is all starting to run together.  Some of the things I recall:

The visit to the original orthopedic surgeon, the one who had suggested the "back cement back in early January.  He said, "I'm so sorry, Ken, but in order for it to do any good, that surgery would have had to be done a month ago, and of course, we couldn't do it until the tumor came out.  It is too late now."  He did not recommend a fusion.  He is a remarkable doctor, and has been the most involved and aggressive (in a good way) of all the doctors Ken has seen.  He ran multiple tests looking for anything that seemed remotely possible as a cause for all the pain and hand swelling.  Nothing showed up.  Later bone scans showed osteopenia.  Ken has gone from 6:4" tall to 6'1". 

The visit to the endocrinologist.  She has been one of Ken's doctors for a long time and was the person who finally connected the dots and ran the test that confirmed that the accidentally-discovered adrenal tumor was indeed a pheochromocytoma.   But during a post-op visit, she was unconcerned about Ken's continued weakness and general feeling of illness.  She encouraged him to exercise more.  She did not have any ideas about what might be causing the continued severe pain.  Eventually, some other symptoms occurred which caused Ken to insist that she check his testosterone level.  It was "alarmingly low" she said.  Two weeks later she ran more test to see if the source of the problem was his testes or his pituitary gland.   She ran a scan to check for a pituitary tumor.  None was found.  She started Ken on a testosterone Rx, and told him he would feel better in about a month or two.  He's waiting.  It has been about two weeks so far.

The visit to the Emergency Room during Spring Break. This happened after a weekend of severe hand, shoulder and back pain. Ken said his pain was an 8 or 9. (He has never had pain at a 10 level, because he reserves that for "screaming in pain.") After watching him in agony for two days, we went to the hospital. We were hoping he could be admitted for some pain management. He did not get admitted.  He did get an intravenous line of Delaudid (thought to be about 6 times stronger than morphine.)  That reduced his pain to a tolerable level, but the drug had worn off before we got back home.  Thankfully, in another day or so he had returned to his "new normal."  That is a pain level of about 4 or 5, after using Oxycontin and a Fentynal patch. 
The visit to the rheumatologist in Marshfield.  The famous Mayo Clinic in MN is not covered by our insurance, but the Marshfield Clinic is.  It is large and has a good reputation for diagnosing mysterious ailments.  We drove several hours and met with a doctor who came into the room and announced, after a few questions and a few simple maneuvers with Ken's hands, "I know what you have.  You have diabetic cheiroarthropathy.  It is causing the limited motion and contractures in your hands.  There is nothing that can help with this. You also have carpal tunnel syndrome."  He gave us a pamphlet to read, and we left, feeling hopeless and defeated.  Only later, reading the pamphlet, did we learn that cheiroarthropathy does not cause pain.  Nor swelling.  Several weeks later he had tests for the carpal tunnel diagnosis.  They were, Ken said, "Terrible."  And showed nothing.

Our chiropractor does help with the back pain, but the relief is slight and temporary. 

A visit to a respected acupuncturist caused even more pain in Ken's hands, arms and back.  He could feel "every needle" and reported that two weeks later he could still tell exactly where they had been inserted.  They made the pain worse, not better.

Of course, we found another rheumatologist, who agreed that the diagnosis could not be polymyalgia rheumatica nor a result of the drug Simvistatin (both suggested by the rheumatologist at St. Lukes).  He ran more tests, which were inconclusive. He is assuming, for lack of something more concrete, that Ken has rheumatoid arthritis. He started him on an Rx for that, but says it could be a month to six weeks or more before any results are seen. It has been about three weeks. No improvement so far.  And he is leaving the clinic soon.

Visits to physical and occupational therapists have been painful and only slightly helpful.  The next visit is with a pain specialist. 

Ken has not been at work since before Christmas.  He is on disability insurance for the moment and we are trying to decide what to do.  We still think it is too coincidental that the pain symptoms and hand swelling occurred in the same week as the extreme adrenaline episodes. Doctors all say the symptoms are not related to the pheo.  We have joked, "Maybe there were fleas and tics and spiders too."  

And somehow they all showed up in the same week back in December.  It doesn't seem possible, does it?   

We are glad the "episodes" are history and that an accidentally high level of blood thinner led to a check for kidney stones--and showed a tumor.  We are grateful that the surgery went well and that those symptoms are all gone.  We are glad that Ken's drug list is a fraction of what it used to be.

But it was difficult to expect a return to life and function and be met with no answers to the debilitating pain.  I wish I had a happy ending. I wanted to wait to write anything until we had at least some positive news about the mysterious hand swelling and the pain in hands and shoulders. 

Some days are better. Some days are terrible. Today Ken could not lift his arms.  He is very depressed.  We are praying for answers.  We are waiting. 

Sunday, May 05, 2013

Ken's Ordeal Part 4: "Out, out, Damned Pheo!"

If you wan tto start from the beginning, just click on the "Ken's Ordeal" link at the bottom of this page or in the sidebar and scroll down.

Difficult days passed while we waited for the day the surgery could finally take place.  The constant grey skies that were a hallmark of this past winter matched our spirits.  Ken was miserable.  His hands remained swollen and painful, and his shoulder and back pain was incapacitating.  Over the previous six months, Ken had lost over 60 pounds. His clothes hung on his much-thinner frame.  His complexion continued to have a grayish tinge. 

Things we take for granted as part of life, were difficult or impossible--things like eating with a fork, going for even a short walk, making love, rising from a chair, pulling up a blanket, driving a vehicle, shampooing hair...and the list goes on. 

The famous Shakespeare quote, "Out, out damned spot."(spoken by Lady Macbeth as she goes a bit mad and tries to wash the blood of murdered Duncan from her hands) was in my mind often, except I was thinking of the pheochromocytoma and how this unseen, undiagnosed tumor had been lurking in my husband's body for years, wreaking havoc. The urologist who would later perform the delicate surgery, a skilled surgeon with a down-to-earth bedside manner, said to Ken, "These pheos are just little balls of hate." He told us he was going to assemble a hand-picked team so he wasn't sure when surgery day would be. 

Narcotics that blunted the worst of the pain, the beta blockers, and the other life-saving medications that were stopping Ken's body from recognizing adrenaline, also made him light headed, weak, and sleepy.  We rose early so I could help Ken get ready for the day and then I headed off for work. 

It wasn't a time to stay home, however much I might have sometimes wanted to.  In December, I had left my previous employment and, along with a business partner had planned a new business which we would call Insurance Solutions. What a relief, looking back on it all, that I did not know what was coming for Ken on the difficult day in early December that I left my office in a financial services firm for the last time. Having something else to think about with all the myriad of issues that go along with a new business venture helped the time pass.

Additionally, there was the fledgling ministry at The OASIS at St. Nazianz to think about--a good thing--but something that deserved more attention. Ken was discouraged that he was unable to be of help.  It was good that Ken's disabled brother, Kevin, lives here because he helped with things like making lunch for the two of them and, in an odd role reversal, kept an eye on his brother.

Many people told us they were keeping Ken in their prayers and thoughts.  Ken said that knowing this helped him get through that long month. 

Surgery day, February 9th, finally arrived.  We drove to Milwaukee's St. Lukes Hospital in a mix of rain, sleet and snow.  Ken was nauseated and feeling really ill on the drive down.  The morning passed with the usual hospital protocols.  The anestheseologist told us that the fact Ken was feeling so dizzy and sick likely meant that it was time for the powerful medications he had been taking for over a month to end.  The timing for the surgery was just right, it seemed. 

Our pastor came and prayed with Ken before they took him to the operating room and we sat in the cafeteria and talked as we shared lunch. After he headed home, I sat in the waiting room and tried not to think too much about what might be happening in the operating room.  I had been told that the surgery could take 4 or 5 hours.  I felt mostly positive about the procedure, even though we had been warned that it was a dangerous thing to remove a pheochromocytoma.  I took a walk to the hospital chapel to pray, but I had already prayed so much that there were just no more words to say. For a while, I sat in the silence of the chapel and simply told God that I knew who was holding Ken.  I knew others were praying, and I pictured some of their faces, taking comfort in the thought that I was not really alone, however lonely I might feel. 

I returned to the surgery waiting room and read a magazine.  I played cards with a group of women, and we shared some relatively intimate details of life, as strangers sometimes do in such situations.  I liked the card game.  It was a simple one, and I decided I would teach it to Ken sometime.  I must have been a little distracted though.  I have no idea how the game was played. 

The surgeon came to the waiting room sooner than I expected.  Looking pleased, and making no effort to hide his relief, he said, "None of the things we anticipated happening did.  It went surprisingly well.  I'm glad you didn't have the surgery a month ago.  Even though it was hard to wait, I think it was the right thing."

Later, I went to the recovery room to check on Ken.  He was not awake, even though he had been there for a rather long time.  The friendly nurse who was monitoring him said with a smile, "With those rosy cheeks, your husband looks like a sleeping Santa Claus."  I looked at Ken.  She was right.  He did have pink cheeks.  I almost laughed out loud as I said, "He does have rosy cheeks, doesn't he?  He has been grey for so long I forgot what his face should look like."

I was so relieved to see that healthy color that I almost didn't notice much else.  I pulled up a chair to the bedside, and I reached out to stroke Ken's hand.  But something was strange.  I looked at the nurse. 

"Have his hands been like this since he came in?"

"Yes.  I noticed his hands.  I have never seen anything quite like it.  Probably it is just one of the effects of what he has been through."

Ken's hands had been badly swollen for six weeks, but now they were so engorged with fluid that they looked like they might burst.  His knuckles were invisible in a round mound of puffy skin. There were no wrinkles on his fingers or wrists. His hands looked like a baseball catcher's mitt.  I was shocked. 

After a while, I left a still-groggy Ken.  The pheo, the nasty little tumor that was"a ball of hate," was out, so the worst was over.  Surely now, I thought to myself, things will go back to normal.  Once he recovers from the surgery, he'll be like his old self, only better.    But that was not to be.