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Recovery Blog

Pain, Pain, Go Away! (Month +8)

Today is my eighth month anniversary of getting my stem cells back. Boy, as slow as things seem to move, time also flies.

I've been doing photography for the Arlington Theatre during 2017 Santa Barbara International Film Festival, and on Wednesday, I saw the opening night film, “Charged." This was quite the human-triumph-over-adversity documentary film and a kick in the pants for me to get over dwelling on my own problems. This is the story of Edwardo Garcia, who got shocked nearly to death with 2400 volts, who spent months in an ICU, only to discover he also had testicular cancer. Through extreme surgeries, chemotherapy and years of physical therapy, he managed to pull through, albeit now with a prosthetic arm. 

Standing right in front of me on the red carpet, I saw this handsome, young man smiling from ear-to-ear. He was fit, happy and forward-looking. How did Garcia do it? The man is an inspiration. The bottom line: never give up!

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Doctor: MS in Remission! (Month +6.75)

I just noticed that on my most recent physical therapy script from my pain neurologist, there's a note to my trainer: "MS in remission!" Yes, he used an exclamation point. It's been 10 months since my last MRIs and 10 months since my last dose of any MS meds. The MRI report came back, "no change."

Yippee.

I further challenged these new results; I went into a hot jacuzzi for 45 minutes, something I wouldn't dare try while in my previous throws of MS symptom hell. There was no effect other than the nice relaxation you'd expect from a comforting soak. This is double proof that my MS is gone!

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Neuroplasticity (Month +6.1)

Finally, I was able to stop taking bactrim and acyclovir. Today was my first day without these antiseptic medications since my transplant over six months ago. Technically, now I'm also able to go swimming, but it's raining. I don't want to catch a cold, so I'll wait for a sunny day.

Recently, I twice read Explain Pain (Butler & Moseley), and I've since finished The Brain's Way of Healing (Doidge). The main premise of the first book is that pain is a sensation which is created in the brain when it interprets neurological signals as being the result of impending danger. Acute pain is a beneficial, logical response, but chronic pain is technically unnecessary because there is no longer danger present. In fact, since "neurons that fire together, wire together," chronic pain is actually learned pain as a result of experiencing it. As the body regularly experiences any sensation, it develops neurons, pathways and synapses to become more efficient at interpreting that experience. While this idea usually works in our favor, (for example, a guitar player gets better at controlling fingers in his left hand) it can also work to reinforce a vicious cycle.

 

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Hopefully, My Last MRIs, Forever (Month +6)

Two days ago marked my 6-month immune system birthday! Wow, hard to believe I've made it this far. In another week, I'll be able to swim again :).

Yesterday, I did what I hope will be my last MRIs. I did brain and C-spine (neck) MRIs, back-to-back on a GE Magnetic Resonance Imaging (1.5 Tesla strength) machine. MRIs are particularly tough for me, not only because I am a bit claustrophobic. Each one takes about 20-30 minutes, during which you must lay flat on your back, totally motionless. They put a hard shield over your face, which locks your head into position (for upper body scans), then the table slides you head-first into the tube. Most people don't have a problem with this.

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Chemobrain (Month +5.2)

One morning I was perusing the Post HSCT support group on Facebook, and I noticed that someone had posted this article: Mental Rehab May Reduce 'Chemobrain'. I had never heard of chemobrain, and after reading the article, it suddenly hit me that this was what I had been recently experiencing. I seem to have gotten worse at finding the right words sometimes when I talk, and I didn't know what to attribute this to. Although there is all kinds of documented information about chemobrain,  many physicians don't give too much weight to the idea that brain "fog" or memory problems (the list actually goes on-and-on) are the result of chemothearapy, itself. You can read the Mayo Clinic's description here.

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