Monday, March 16, 2009

Avastin done!

Finally the next round of Avastin is done - only 1 month behind schedule thanks to insurance. Michele got to cart me up to Baltimore at the crack of dawn to get my open gym time on the FES bike (the bike that zaps my legs and turns the pedals for me) done then we had to kill some time before the Avastin drip. We got back to Silver Spring around 4 PM and I was exhausted.

I begin therapy again this Wednesday and plan to switch up to a Wednesday/Friday schedule. I have also gotten off my duff and scheduled my next PET scan for April. I am WAY behind, it was supposed to be taken care of back in October. I am feeling pretty positive that I am still dancing with NED (no evidence of disease) but I have to actually get the deed done even though I completely dread waiting on the test results. Between the MRI test results and PET test results I might consider using the Valium they prescribed me to lower my anxiety.

Still no temporary housing and only 13 days left in our house. You can imagine Dave and I are stressed out. I cannot even begin to go into the entire saga of what this rental house search has become. Let's just say finding a home for a family of 5, with a mom in a wheelchair, a dog that is 80 lbs (okay I am being kind to Maple), and a short term lease is a challenge. Everyone send your prayers, good vibes, and positive thoughts that something will turn up soon.

Wednesday, March 11, 2009

Bloodwork done....

I got my bloodwork done today for the next Avastin drip on Friday. It will be another long day at the Hopkins Cancer Center Friday but I am so used to hanging out in Baltimore waiting on doctors, nurses, name isn't any funny anymore. Just apart of life.

I received my own stander/glider today at the house. This will allow me to stand for an hour a day which my therapist recommends while working out my arms by making the machine glide my legs. The kids automatically wanted to jump in and play on it. I threatened immediate removal of all video games if any of them touched it. This sucker is expensive even with insurance kicking in 80%!

We are out of this house in about 2 weeks. Still no temporary housing lined up while we wait on the new house to be built.....that is a whole post in itself that I don't have the energy to go in to.

It will all work out somehow.

Saturday, March 7, 2009


That was expected - my new insurance denied my avastin treatment. We are going to use Dave's company to override them and get it done since I am way behind. I know we have this option I am just annoyed that the new insurance sucks so much. They recently sent a denial of my wheelchair expenses and are requesting more documentation to justify the need. HELLO I cannot walk - isn't that good enough?

I managed to track my new neurologist down and got my latest MRI results. The inflammation is still going down which is great news. Compared to my latest MRI there wasn't a huge difference but compared to the ones in August (when all this started) there is a drastic change. My neurologist only wants to do 4 more treatments. After that we can revisit but she said the harmful effects of this drug just become a reality if you take it too long. Enough said....I do not want a brain hemorrhage thank you.

I asked if hopefully this was the end of the deterioration phase for me and she said we cannot tell since we stopped it short and didn't let it run its natural course. Also she said 4 years post radiation I could also have more issues.

So a mixed bag news. All of this on top of the whole moving thing, Dave's travel and you can pretty much say I am stressed out.

Things will settle down I just need to have faith and keep moving forward.