During radiation, John surpassed all expectations.   By the time he completed radiation on April 6, he was using the walker comfortably and beginning to be comfortable with just a cane. Last week he started to have back pain and could not get comfortable.  On April 12, he had a spine x-ray which showed no tumors or cysts.  They treated the back pain with heat, ice and Advil and it seemed to help. The past few weeks John's motor skills have regressed.  He is back in a wheelchair and is once again dependent.   Some of that could be attributed to after effects of radiation.  He also has some severe headaches, so they did an MRI on Saturday. The news was not what we wanted.  The disease is very aggressive and there are nodules throughout his brain and spine.  There are no surgical options. Monday after meeting with his oncologist, John was admitted to Hopkins. He is expected to be sent home tomorrow afternoon. This time in the hospital was for a "tune up" to help manage his pain. Prognosis is poor. We met with hospice today. John will be coming home tomorrow for hospice care at my mom and Sandy's. John has fought valiantly since the first tumor in 2008. He is still our hero.

Ringing the bell

Today will be the last radiation treatment I have forth time being. There is tradition at Hopkins of ringing a bell after your last treatment. Pretty excited. I will have about a month long break before I start the next stage of my treatment. It will include chemo. But today is about celebrating getting through stage one. One step at at a time

Coming to the end

I have just 8 treatments left. I'm not sure what will follow. But I'm trying to make as much progress as I can before I start the next stage. I am hoping to be walking without any assistive device in about 3 weeks. Progress is coming quickly now. So exciting to be making big steps now. Next Friday is my last day of radiation.

What am I doing

Tomorrow will mark the halfway point in my radiation treatments which is something to celebrate but on the other hand it is no where near the end of my fight. It occurred to me today that even if radiation does everything they hope it can it won't be enough to save my life. The best result radiation will bring is to prevent the tumor cells from growing back in the area that was just vacated. It is frustratiing to think how much discomfort I'm going through for what seems like a stalling tactic. But I have said numerous times throughout this that I'm not a doctor and so I shouldn't jump to conclusions. Just wanted to let everyone know that while I may not make it through all this it won't be for lack of effort on my part. But everyone needs to realize that I can do everything right and probably still won't win this fight.
At some point I am going to have to stop treatment and focus in getting to live my life. I'm not there yet. But this radiation process has me thinking about when that time will come.

I'm at home for about a week now. haven't been sleeping all that well still. Leg is in spasm pretty frequently. Plus I started radiation one of the side affects is that the brain swells and unfortunately Your skull does not expand therefore i get massive headaches. I am pretty tired all day. Because I do PT in the morning And radiation in the afternoon. I'm up for visitors but am just text before you come. I am at my aunts house in chartwell.

Escape

I am getting out today. Not headed back to my parents. There's construction going on there. Going to my aunts house in Severna Park. Visitors are welcome. Just call or text beforehand. Hoping to get some sleep. i havent had a solid nights sleep. In like 2 weeks. Looking forward to a regular bed. And beIng able youse the bathroom with out an escort.

Visitors

I am up for visitors. But I need to limit it. At the same time I'm not going to be very entertaining. In fact, I'm likely to fall asleep while you're here. Please call or text before coming I have full3 hours of therapy a day. My schedule tomorrow is 9 am10 am 2 pm &230 pm. I need thec down time in between sessions to rest. So eveningsvare the bestbtimes to visit again text me before coming. I don't know where to tell anyone to park I am in the John Burton pavilion terrace rehab unit room 39