I finally feel like I'm back on the road to recovery, instead of the downward spiral of these past weeks. "Tomorrow is always a better day," I'd say to myself before falling asleep. However, there were several times where this wasn't true. There were days that brought a little less movement / sensation in my legs and a little more pain in my back; there were some dark weeks.
Now, post surgery, I'm pretty good. The crippling lower back pain has subsided and the leg cramping may have gotten a little better (this last sentence I type while glaring at my leg where I can feel a dull throbbing sensation). I'm slowly gaining more and more strength in my legs and decreasing the amount of narcotics to keep me sane. So these are all great things to celebrate; however, ever since the surgery a numbness has slowly creeped up my legs and now I'm basically numb below my waistline, which is a little unsettling.
Even though we relieved the spinal cord compression at T11/T12, there are still lesions all along my lumbar and sacral spine contributing to these leg symptoms. There's really nothing we can surgically do in the lower parts of the spine so what we're hoping is that we can get these tumors under control using more chemo or radiation. We're planning on starting another round of chemotherapy in 2 weeks (3 weeks post-op), cocktail TBD depending on blood chemistries but something new and different which should be exciting.
My biggest complaint now is this numbness that has made walking difficult. Even though I'm getting more strength in my legs, I cannot feel where they are placed or how they are oriented. I've been working with physical therapy and occupational therapy over the past couple days and have made some great strides, teaching my other senses to compensate for my lack of sensation. Everyday gets a little easier but there's a long hill ahead.
I need to go back to the rehab facility for at least week to build up my strength and get closer to my baseline before this most recent debacle (pre-radiation). I need assistance when I use the walker and stairs have barely been touched. For safety reasons, blue cross blue shield permitting, rehab is imperative. If all goes well I'll be transferred to Spaulding tomorrow.
Progress feels good and spirits are high. I thank everyone who has recently reached out and, of course, all the visitors who keep us afloat. The support we've received is really amazing and very much appreciated.