October 2010: The Beginning of the Real Fight

A paraneoplastic neurological syndrome can damage both the peripheral and autonomic nervous systems

A paraneoplastic neurological syndrome can damage both the peripheral and autonomic nervous systems

In my last post, I described how good I felt in July 2010 during a family vacation in Kentucky.

***Little did I know at this point in time that this was likely to be my high water mark – sort of like the Confederacy’s high water mark was during the first two days at Gettysburg.*** 

They thought they were winning but came out the loser after Pickett’s infamous charge.

In August 2010, I was diagnosed with very severe chronic obstructive sleep apnea.  A week later I was in the hospital with pneumonia.  Just precursors for what was yet to come.

As September crept into October 2010, it was getting harder and harder for me to get around.  My left leg was numb and it felt like I was dragging a ball and chain around with me everywhere I went.  In addition, my lower back was hurting and it sent throbbing and shooting pains down both legs.  By October, I absolutely could not stand up straight.  Getting up and walking to the bathroom was a major effort in balancing and in managing severe pain.

But I was still working and working hard.  It was budget time as well as just a busy time for other matters including managing physician practices that I had merged into the hospital over the past year or so.  I was easily working 12 hour days.  Many days more than that.  And I was busy trying to recruit new doctors into the perinatal/obstetrical practice that the hospital owned.  Doing this required a lot of meeting time and a lot of socializing time with the prospective recruits in addition to looking over their practice data and preparing business plans.

***After a very painful weekend, I went to work on Monday, October 17th.  My pain level was a full “10”.  My back hurt.  I was having severe muscle spasms.  Pain was shooting down my legs.  My left side was weak and numb.  And, I was having sever neuropathic pain in my feet.*** 

By lunchtime, I had to call for help.  The CNO took me to the ED in a wheelchair where I was given pain medication and very soon admitted to the hospital.  I would not come home until the week of Thanksgiving – more than 30 days later!

Basically, the initial diagnosis was a recurrence of the transverse myelitis that I had battled the prior year.  And from which I had never fully recovered.  Of course, they were also looking at those herniated discs in my lower back too.

***Eventually, this would become merged into a new disease to me – paraneoplastic neurological syndrome.***

The author of this blog

The author of this blog

Go to my blog post at paraneoplastic syndromes to learn more:

https://mcreyscope.com/2014/02/10/what-is-paraneoplastic-syndrome/

I was in acute care for two weeks.  The pain was intense and the weakness seemed to worsen.

***I began to look forward to doses of morphine to at least put me in a state whereby I could tolerate my surroundings.***

It appeared on one of the CT scans that I had a small nodule in my right lung.  After a PET scan, I was told that they could no longer see a nodule there but that the bones around the second toe on my right foot “lit up” and that I would need to follow up with that after discharge to make sure that it did not represent a new metastasis of my melanoma.  It was a very scary time.

The last three weeks were in rehab.  Here I would learn to get around a little bit with a walker (physical therapy) and to try to do simple activities of daily living with assistance (occupational therapy).  My wife worked with me so that she could help when I got home.

***About a week before discharge, I took a field trip home with my therapists in order to scout out what would need to change at home for me to be successful.***

Before I had gotten sick this latest time, we had planned to spend Christmas in Belfast with my daughter, her husband and my grandson.  In my mind, nothing was going to stop me.

***I started outpatient rehab two days after discharge and my number one goal was to be able to make the trip to Northern Ireland!***

There were a lot of hurdles.  I was doing what I had to do to try to show that I could manage the trip.  It was hard.  I knew that I would have to go in a wheelchair and have assistance all along the way.

***About a week before the trip, I developed severe vertigo and double vision.  I also had to pass a MRI brain scan before my neurologist would sign off on my going.  While I still had some vertigo, the brain scan was clear and after working out a game plan with my physiatrist, my neurologist and my oncologist, I made the trip.***

It was a hard trip but I did make it.  It snowed a lot in Ireland so we ended up snowed in for most of the time.  But it was a big accomplishment for me just to have made the trip.  When I got home, I was exhausted.  And, since high dose steroids had not resulted in any significant improvement, I was to start IVIG treatments immediately.

So, I think I’ll stop here for now.  It’s January 2011.  I am back home.  I have had the first IVIG treatment.  I am still very sick.  I was still facing months of rehab.  And, I really didn’t know where it was all going.

***I still at this point was thinking that my main goal was to return to work and so my rehab plan in sync with my treatment plan was designed for this singular purpose.***

Stay safe!  See you next post!

Also visit my Facebook page at:  www.facebook.com/mcreyscope

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About mcreyscope

Retired / disabled survivor of Stage IV melanoma and paraneoplastic syndrome.
This entry was posted in About Melanoma, Chronic Pain and Chronic Illness, Paraneoplastic Syndrome and tagged , , , , , , , , , , , , , , . Bookmark the permalink.

2 Responses to October 2010: The Beginning of the Real Fight

  1. Pingback: Dealing with a severe pain in the neck | mcreyscope's musings

  2. Pingback: What is paraneoplastic syndrome? | mcreyscope's musings

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