Acceptance Drives My TM Story Forward
The 1st Week of July, 2016
Results from the spinal fluid testing trickled in slowly, everything turning up negative. On the other hand, my infections seemed under control, and they also took me off steroids.
The most important day this week turned out to be Wednesday, July 6th. I awoke early with the 6:00am Vitals Check then returned to sleep until almost nine. Laying in bed, feeling pretty sorry for myself, and pretty much overwhelmed by all the unknow possibilities ahead, my Higher Power opened my eyes.
It occurred to me that TM was just like alcoholism . . . nothing I asked for, nothing I could control, and something that could kill me. Only a power greater than myself could restore me to sanity. http://www.aa.org/
So, we started together. I’d learned some about Physical Therapy after my hip replacement. The doc said that PT Rehab would be a major part of recovery – if not all of it. OK, I would try and do physical therapy every day.
I also knew two really important things from Dr. Bob O: Acceptance is my true answer, plus Expectations and Serenity are inversely related. Please grant me one wish if you suffer from some shit like TM . . . Find Acceptance and always manage your expectations downward.
You won’t regret it, ever.
The 2nd Week of July, 2016 -
Going to the PT Rehab floor was all the talk, but I wanted nothing to do with it. I had a conference in San Diego at the end of July, and I wasn’t going to miss it. Yep, still stubborn despite the Acceptance. I’d do my own physical therapy..
To help jump start me, it was decided to give me five session of Plasma Exchange. You can read more about that here
https://bit.ly/2Ifdffk That meant putting a big catheter in my neck. It hook to a machine that withdrew all my blood, separated the plasma, cleaned out the antibodies – hopefully the ones that were attacking my spine, then gave me fresh , clean plasma back. We ended up doing this twice. The first time seemed to work but the second not so much
The 3rd Week of July, 2016
While this was underway, a radiologist took a closer look at my older and newer MRIs. He saw some odd challenge to the blood vessels along my spine. This excited everybody . . . fix the flow, fix the problem. Away I went to surgery for the first of my spinal angiograms.
Unfortunately, even after spending an extra hour exploring my spinal and lower vascular system, nothing was discovered. Not a good day was had by any one. The surgeon was so distraught I felt like apologizing to him.
Then at the end of this week, I left for home and a few days of rest before leaving for San Diego . . . what an utterly stupid, stupid stunt.
August 2, 2016
Getting back from the trip, I made an effort to put PT Rehab to the test. However, now the pains started to really factor into my day. We tried non-opiods, but they just didn’t seem to work, so we had to manage me from getting too stupid.
Worse, I was getting weaker. When we first got home I could use a cane around the house and a walker whenever we went out. The cane quickly ended, and when I had my appointment with Dr Li, we talked about a treatment using Retuximab, a cancer drug that had shown some positive results with other autoimmune-related conditions.
After another 10 days of deterioration measured by my own physical therapy, we scheduled IV Outpatient sessions on four successive Fridays into mid-September.
They did not work. In fact, they may have facilitated what was yet to come in December
Getting Home
Now I was at home and started to finally get very serious about Physical Therapy. Kelly Snow, my outpatient therapist, pushed me and bugged me about doing it daily at home. We agreed that my progress was underway but we had many upward then downward then upward periods. With me PT Rehab does not move in a straight upward line,
The S**t Hits The Fan
At Christmas, 2016, the shit hit the fan.
That holiday was certainly the worst we’d experienced. Christmas Eve we went out to dinner with my younger son, Cory, only to have him help get to a cramped restroom barely in time to throw-up.
On the 27th we decided to go up to Milwaukee for a night away. We got a beautiful suite at the downtown Hampton Inn. We took both my walker and my brand new wheel chair. The restroom was large and handy. Unfortunately, the designers used two different tiles between the shower and the commode areas.
First time in, I hit the seam. My walker flipped forward. I fell backwards slightly braking my fall with my left arm. Yeah, I hit hard. Funny thing, though: landing hard on your ass when it’s already mostly numb can fool you. The fall loosened some kidney stones.
Within two days, I developed Sepsis that spread to my blood because a couple of kidney stones decided to clog me up.
Next thing I remember was about two weeks later. I had become delirious. Michael was at the house and just picked up, and drove once again to the ER at Advocate Lutheran General.
About 2:00am that morning they performed emergency surgery, installing a stent to unclog the kidneys then put me in ICU. That’s where I woke up later, with most of the delirium gone.
infection invaded so back to the hospital I travelled.
Right before this occurred, Barbara and I had an appointment with Dr Bovis, my neurosurgeon. Within 60 seconds it was clear that what we expected – some clarity about the whole episode – was not what he thought to tell me - no spinal surgery was advised, but . . . he basically ordered me back to the hospital with the statement, “We have so many people now involved with your case that we've got to gather and decide next steps."
Missing the Winter of 2016/17
As a result, I pretty much missed the whole winter of 2016/2017. The big scare – sepsis spreading into my spine. Daily IV antibiotics; daily blood tests; daily inspections by disease docs, neurologists, hematologists, primary doc, and all kinds of resident interns and students from the college. More MRIs off course.
By late in the month I got cleared to go to 6 West for Rehab. The situation started looking up, but not enough to go home. Instead, I was sent to a separate Nursing Home/Rehab Center where they could keep an eye on me.
Within all of one week, another infection invaded me so back to the hospital I travelled. Right before this occurred, Barbara and I had an appointment with Dr. Bovis, my neurosurgeon. Within 60 seconds it was clear that what we expected – some clarity about the whole episode – was not what he thought – just to tell me that no spinal surgery was advised, but . . . he basically ordered me back to the hospital with the statement, “We have some people now involved with your case that we must gather and decide next steps
Glenview Terrace to the Rescue
We didn’t even go back to the PT Rehab facility – just straight to ER.
The docs got the infection under control pretty quickl so time came to go back to an outside Rehab. We chose a different place that really worked out well, after a rough start. I went to Glenview Terrace. After only 1½ days I had to go back to for a couple more hospital days but got back to Glenview eventually, on April 19th 2017.
Glenview Terrace physical therapy folks got me on the right path. We worked together for about 2 ½ hours each day. By the 2nd of May I was able to go home . . . .a place I had not seen in about four months.
At first it was pretty hard being back home. Worse, I now had to face semi-retirement. To this point, I’d been trying to hold onto my Vistage Group 363 and the income it provided along with my Vistage Best Practice Chair positions in both Chicago and Cincinnati. Group 363, one I had run for nearly 16 years, needed a strong leader to come back. So with my knowledge, they interviewed and chose a new Chairman. I hated it – not them – but acceptance was the absolute right action to take. While that left me with the two Best Practice Groups, it also gave me the time to focus on my health.
Then, in mid-May, another very strange thing occurred.
A Cancer Surprise on Top of it All
Good friends of ours were having a wedding. It was an Indian wedding. I wanted to go - I'd never experienced a wedding in their culture. While I was there, I started to get kind s loopy – a sign that a new infection was underway.
By Sunday I was gone and Barbara took me right back to the hospital.
During that next week, they got my newest infection under control. They also discovered that I was about 1 ½ years late for a colonoscopy. Because Dr. Galves, my Hematologist, was concerned about some internal bleeding, they scheduled me for both the colonoscopy plus an endoscopy (checking down my esophagus).
The result – my colon was just fine but I had what appeared to be the beginnings of esophageal cancer in my throat. https://ctcaho.pe/2x1wR12
What a panic. Within two weeks, I now had an oncologist – Dr Ekland – plus a second Endoscopy to biopsy the bad patch in my throat.
On June 30, 2017, two amazingly blessed events occurred. My son Zak started texting me all day that my new grandson, Knolls was about to be born, and Dr. Ekland phoned me to confirm the cancer diagnosis. We decided to keep the cancer quiet.
My cancer scare was pretty much just that – a scare. Within a week, I had another C-Scan and my first Pet scan along with blood testing. All the signs looked like we’d caught the disease early enough to get rid of it without traditional throat surgery.
This is where Dr. Lahke came into the plan. We scheduled another Endoscopy during which he could use a special tool to remove the DIA level cancer. I’ve now been rechecked twice and remain clear, so the next check won’t be for another year.
By this time it was early September 2017. I was back at home and ready to pick up with Physical Therapy. Slowly, I moved forward. In fact, by the beginning of December I was able to get up on a walker at Outpatient PT Rehab sessions and walk 35 steps, sit for a minute, then do it again.
The Healthnetwork Foundation & Johns Hopkins TM Clinic
At the beginning of December the Healthnetwork Foundation (
https://bit.ly/2kh55o3 ) helped me with my opportunity to visit the Johns Hopkins Hospital’s Transverse Myelitis Clinic for a second opinion. Since Dr. Rubenstein, my primary Neurologist, agreed with the idea, away I flew to Baltimore.
There, I met with Dr. Dan Becker, a renowned expert in the transverse myelitis field. He thought that most of my symptoms pointed to a vascular cause, so we scheduled a spinal angiogram in January. Now, I had one of these in Chicago, but there appeared to be signs of a fistula along my spine from an Oct 2015 MRI.
The surgery day came but was unsuccessful in locating any obstructions. It was decided to do a second one with me completely sedated so that I could not move and mess with the camera resolution. This took place on January 23, 2018. Again, no discoveries, except . . .
By the 29th of January, I couldn't mover either of my legs. I don’t believe that the angiograms caused this situation. I think an infection started in my bladder again, but, whatever the cause, I was back to “ground zero” again, and back I went to Advocate Lutheran General.
Turns out I did have an infection which took a week to deal with successfully. Also during this time we decided to try another round of Plasma Exchange to jump-start me into PT Rehab on 6 West. Since I had never followed up Plasma Exchange with Inpatient Rehab, I was all for the idea . . .
And that’s pretty much what I’m working with now.