Sunday, March 17, 2024

Sophie’s Choice, Cancer Style

  


Back in late December/early January I noticed that I was having trouble getting onto my bike trainer.  It became more and more difficult to swing my left leg over the saddle.

Since I am not the most flexible person, I figured it was general tightness.  So I made sure to focus on my stretching more after my biking and running sessions.  I thought I was gaining flexibility based on my range of motion.  

But getting onto the bike became more difficult.  Then  started having difficulty doing other things.  I get an using my hands to lift my leg into bed or into the car.  Then dressing became more difficult.

Then, on January 12, I fell down almost a full flight of stairs.  I thought it was my fault with my hands being full and thinking I went to grab something.  I wasn't sure, though I remember it was my left leg that went.  The fall was scary.  Time really does slow down.  I waited to hear the sound of my neck breaking.    I got banged up a bit, but no real damage.  X-Rays showed all my hardware was in place in my back and that there were no broken bones.

I fell a couple of more times.  Each time I thought it was my fault.  One time was getting up rapidly to shut off something.  Another a misstep going into the garage to put out recycling. A MRI in early February indicated that I had a few muscles tears and a tendon tear - all relatively minor.  It also indicated that I had a CAM/femur issue which would be causing a nerve impingement.  Finally an answer, though I was still scheduled for an EMG March 8.  

But I felt increasing unsteadiness.  I purchased a hip brace and a knee brace the end of February to keep things aligned.  I though the falling was happening when my legs moved laterally, as compared to forward and back.  I then added a walker by the beginning of March.  If I kept focused on stopping my left leg from moving laterally, I was okay.  I also determined that when taking the stairs that I needed to go up with my right leg leading and go down with my left leg leading.  This was determined by a couple of falls when I did it in reverse.  But at least I figured it out.

March 8 came.  I was told right away that I had Lumbar Plexopathy - basically an injury to the nerves in the lumbar and/or sacral plexus.  Later on that day I received a call where the other shoe dropped.  I had demyelinating neuropathy. In both my left leg and right leg, though the right leg was minor.  It is an autoimmune disease.  From the NIH:

"Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder that involves progressive weakness and reduced senses in the arms and legs. It is caused by damage to the fat-based protective covering on nerves called the myelin sheath. "

Apparently it is a relatively rare condition.  Around 34,000 people in the United States have it. How do I know that?  The answer is simple - as I was writing this a commercial came on that I had not noticed before.  Looked like one of those commercials that the drug companies put out that tease issues before really pitching their drugs. I have seen this happen a few times for various conditions that I did not know were conditions.  This one was for CIDP.  Go figure.

The kicker in all of this?  CIDP is a potential side effect of immunotherapy treatments.  Yup.  The drug trial that looks to be saving my life has started crippling me.

I have started on steroids and it seems the numbness in my left leg is starting to improve. And I think I am getting a bit more movement back.  It can take a few more weeks to see.

The steroids can interfere a bit with my immunotherapy treatment, but it is a balance.  I was only scheduled for two more treatments and the steroids should not adversely affect what progress I have had made to date.  There is also a couple of other options which look to be highly effective. The problem is that it could undermine the immunotherapy I have to date.  Hello cancer.

So as of now I will ride things out with the steroids and see how they work.  I am remaining optimistic, but it is a bit difficult from time-to-time.  But talking about Sophie's Choice.



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