Thursday, April 24, 2014

It's a good day to have a good day!

So little to do, so much time!  So far I have cleaned out my drawers and some of Jon's.  I applied my "if I haven't worn it in 6 months, it's gone." ...Sorry Jon that rule worked on your behalf as well.  I don't know what I plan to do next.  It's hard wanting to do things and being from the waist down.  Jon's starting to learn to leave things lower in the fridge for me...except for the Easter candy. 

We got a new deck built this week.  Our old deck was not very handicapped friendly and the steps did not support me getting in and out of the house.  With your thoughtful donations we were able to make this happen.  Our next project are new sidewalks so my walker and wheel chair can fit.  Right now I am half in the grass, half on the sidewalk.  It will be nice to sit out on the back deck and enjoy the sunshine soon.

I'd like to give a huge thank you to everyone involved with the pancake breakfast.  Seeing all the volunteers working is amazing.  Thank you for giving up your time and energy to help bring a smile to my face.  Growing up I couldn't wait to get out of this town and move on from it and 27 years later I am here, surrounded by people who are so caring.  I'm glad to be from a small town that shows the amount of support and love we all share.  Not only towards myself, but towards others in need.  I hope you all know how much that means to my family and I.  Thank you J.J.'s & Courtyard for making this benefit possible.  Thank you to all the volunteers that helped to sell tickets & baskets.  And thank you to everyone who didn't eat all the cookies so they could come home with me =) .

Physical Therapy has been going okay.  I currently am  having right leg, hip & back pain.  We are working hard to try to get these worked out.  It's had to believe how 1 week of being sick has set me back.  I wouldn't say we are back at the beginning but it's frustrating for me because I was getting farther than I have been then its back to being barely able to walk with my walker.  I keep telling myself "One day at a time!"

Thank you for being so patient as I update this blog.  I feel like my life is rather boring right now...I do the same thing everyday.  I may use this time and learn how to aunt has been on me for months now.  She can get my first bad batch!

Thank you for the continued prayers, love and support!

Saturday, April 12, 2014

Keeping calm and fighting on!

This past Sunday and Monday I was waking up extremely nauseated. I knew I had to get rid of it since I was flying up to NY on Tuesday. Well Tuesday morning rolls around and I begin vomiting. I made it to the airport and up the stairs of the plane. And to no relief the plane ride was a bumpy one. Once we got off the flight we went to the hotel and I started to throw up again. My poor brother in law had to deal with all of this and take care of me. I was really hoping to feel better Wednesday so we could site see a little but I started vomiting again. I had to pull it together for the apt at 130.

At the apt the Dr was extremely nice and personable . We discussed the scans and he said that my brain ventricles are in a sense shrinking and if I have headaches it is a worry because there could be a build up of pressure. He said he has seen about 5 cases of this in children. He also agreed that this is very very rare in adults and he was going to send my files to John Hopkins. He will keep in contact with my team of drs here at UPMC.

So we are going to get on the airplane and my legs have become so weak that the pilots and my brother in law had to carry me and basically drag me to my seat. Getting off the plane was a site to see. I had 2 people carrying my legs down the steps and my b-i-l carrying my upper body. But we made it!

Thursday I was still very sick and barely got out of bed. I had a headache but was able to keep toast down. That was all I had eaten since Monday night.

Friday I attempted to shower and made it there with my walker. When I went to get out I couldn't move. I left my phone in the bed. I literally crawled from the shower to bed and called Jon. He got me into bed and I started to dry heave and got another headache.  At this point we called my neurosurgeons nurse and left multiple messages and emailed the neurosurgeon himself. Of course no answer. We decided to come to the er and I received a ct scan, of my brain to make sure the ventricles were not getting clogged and they weren't!

So today I woke up with a horrid migraine. Jon was rubbing my shoulders trying to rub out my muscles. The drs had fluids through my iv and pumping me with different pills. I felt that was making my stomach feel worse. I kept napping it off and around 1230 I started to feel better and better. I'm ready to come home now!

They sent out a test for the flu, they said it should be back tomorrow and then told me I have a viral infection. Everyone has to wear masks around me.

We moved my first treatment until Monday. They said they want me to be as healthy as possible before I start this. We will see about that. Maybe that's why they keeping me here to keep fluids in me.

Hope everyone is enjoying the beautiful weather! Thank you for the love & support!

Monday, April 7, 2014

Just wanted to give an update on what is happening...

Tomorrow I will be flying to meet with a Dr from NYU.  He specializes in brain and spinal cord tumors.  I am hoping he will be able to provide a little more insight to the type of tumor I have and if he has any different thoughts than UPMC.  My appointment isn't until Wednesday.  I fly home Wednesday evening.

Thursday I am to start a new treatment called Avastin.  The UPMC drs believe that my tumors are inflamed by the radiation and because of this they are not able to tell if the radiation worked.  The Avastin is every 21 days for 14-16 weeks and its job is to take away the inflammation from the tumors.  If this works, the tumors should shrink.  I have another rescan date set for May 20.

As far as PT, everything is progressing very well.  I am walking with a cane with some assistance.  Today we walked about 800 feet!  I also have been working on steps, I can go up and down with little to no assistance.  My feet are slowly seeing some progress.  We have been working on pulling my feet up with the stimulation machine.  I get filled with hope that I will conquer the drop goal is by the end of the year..even if it is just on my right side!

Thank you for the love, support & prayers.  We greatly appreciate everything everyone has been doing for us.

"Sometimes all you can do is not think, not wonder, not imagine, not obsess.  Just breathe and have faith because miracles do happen."