Setbacks: Saturday, July 13th update

So I updated my blog on Wednesday, went to a PT appointment at 1:30 p.m. and got immediately summonded to the hosptial to meet with my radiation oncologist and brain surgeon. It seems that my motor skills have not been improving and seem to be worsening as they have been tapering me off my steroid that controls the swelling. I have weakness on my left side (legs, arms and hands) that has no consistency when it hits or how severe it is. Sometimes, I it just a weakness and sometimes a total numbness where I cannot move the extremity.

When I met with the two docotrs 3 p.m., they said they wanted to do a spinal tap on Thursday, July 11th to rule out two things: 1) a post surgical infection in the brain and 2) that the cancer cells started growing again. They really did not believe that No. 2 was an option as they did the MRI on July 1 and the tumor had been completely removed with no microscopic cells showing. They just wanted to rule out these two things before upping my steroid for the swelling.

I will get the results of the spinal tap Monday morning and they have also had me talk to my neurologist as they think this could also be a symptom of the tumor being removed and the weakness episodes being a mild form of a seizure. I had no idea how many varying forms of seizures that exist. Mine is no considered on a grand-mal basis as I never lose consciousness. The neurogologist doubled my anti-seizure medicine last night, so the hope is these new doses of the drugs will fix the problem.

The steriod keeps me up at night (which is typical) so we are toying between Benadryl and a sleeping pill to get me more rest. The goal is to have me on the couch the next two days resting as much as possible and then doctor appointments on Monday and Tuesday.

I've lined up having a lot of people over to check in on my and stay overnight from today through Thursday hoping one week is enought to get a handle on this and get more control over my motor functions.

I know I had this grand plan to get back to work next week remotely, but I have to listen to my body and heal. It will do me no good to push. I am still doing a little work answering a few emails here and there, but I'm still a long way away from trying to put in a full day. My company has been great about letting me transition back in from working from home for awhile until I can get the motor control to start doing the commute again.

I will update when I have more - probably Tuesday after I meet with all three of my doctors again.

Thank you again your care and concern and continued efforts by my close friends and family who are jumping in to help in any way possible. Wish me as much rest this weekend and continued strenght!

xoxo,
Mary