The Long Road

After the spinal fusion surgery, I spent weeks in rehab.  At first my shoulders were in terrible pain, so that after pushing myself to complete my daily exercises I would often be in tears.  Oxycodone was required to make it through my therapy sessions.  Progress was slow at first, hampered by setbacks like pulmonary embolisms and days when my legs regressed in weakness.  But eventually we started to see a steady upswing, and I began to be able to walk further and further with my walker, and even to practice small stairs, and we began to plan for me to go home, with a few important adaptations like converting the front doorsteps into a system of ramps so I could use the wheelchair, and eventually my walker, to get into the house instead of attempting the dangerous and physically almost impossible stairs.  I busted my tail off in therapy, and finally got a release date right before Christmas.  After missing Thanksgiving and my son's 8th birthday, we were overjoyed that I'd be home for this important family holiday.  My mom was even coming back to town to help me transition home, so Christmas was going to be extra special this year.

After we got home, physical and occupational therapists began visiting on schedule. We got presents wrapped for Christmas and planned our holiday dinner.  I was thrilled to be able to help prepare the meal (sitting down, of course).  Christmas day came and the meal, partly made by us and partly by the wonderful members of hubby's family who shared it with us, was a fantastic feast, and we all had a great time.  After Christmas, though, I began to notice increasing weakness in my legs again.

I kept trying to tell myself it was just another normal fluctuation, the kind of occasional regression we had seen before and that in a couple of days I would wake up feeling stronger and able to do all my recovered activities again.  But it kept getting worse instead of better, and as we entered the New Year's holiday weekend, things were starting to get pretty difficult.  I went from being able to walk about 10 feet on Friday (pathetic compared to the 55ft I had managed only a week before) to not being able to even stand up, much less walk, by Sunday afternoon.  We had to bring my bathtub transfer bench downstairs and use it as a bridge I could slide along to get from the couch to the commode and back again, as standing and walking became completely impossible.  When my therapists returned after the holiday on Tuesday, they were shocked at how far I had regressed, and immediately recommended that I return to the hospital to consult with my surgeon, and that going in through the ER was the best course of action.  Since we had no way of getting me to the car, or into it if we could get me there, we went ahead and called for an ambulance, and came back to the hospital to find out why I had so quickly lost all that I'd worked so many weeks to achieve.  I was in tears, frustrated beyond measure that I had given up all those weeks with my family to get better and then lost it all again in a matter of days.  

Since we came to the ER in the morning, I didn't have any pain medications that day.  After enduring hours of pain and discomfort in the ER I was finally given morphine, and CT scans were done.  MRI was wanted too, but the table was malfunctioning, so I had to wait until almost five in the morning to be taken down to that hellish ordeal.  You see, over the past year I had become quite claustrophobic without realizing it, and each time I had an MRI - which involves squeezing my over-sized body into a tiny tube that reminds me of being inside a coffin - my anxiety and fears became increasingly worse.  It's probably a swelling problem again, I thought.  Here we go with another cycle of Decadron probably, and maybe I'll need some more therapy to get stronger again, perhaps.  That's the worst that could happen, surely.  

After the MRI, my surgeon came to see me.  There was a soft tissue mass compressing my spinal cord, he said, and he needed to operate immediately to decompress the cord by removing the mass and find out what it was.  Sounded kinda scary, but I was still thinking things like scar tissue, fluid pockets from the healing of the previous surgeries, swelling, nothing all that alarming.  I was not prepared to wake up from surgery and be told that he found tumors, that he wasn't able to completely remove them, and that we would need to wait for pathology results to find out if they were malignant or not.  And I wasn't prepared to wake up from surgery and feel absolutely no improvement in my legs, I could still scarcely move them at all, and began to fear how much, if any, of their control I would eventually get back.