Going back to the hospital

I'm on my way back to the hospital to be admitted. My fever is 103 again and my CMV level just came back elevated. I'm not sure if Regions has any internet access, but I wil update when I can.

Home

I just got home from the hospital. I had a fever of 103 yesterday and after spending hours in the ER they decided to admit me. Nothing has shown up on the tests that they have done yet. I am still having fevers, but I they finally decided that keeping me in the hospital was only exposing me to more chances of infection.

Finally home!!

We made it home early this morning. The drive was not too bad. I was at the hospital Tuesday until noon and needed to be back here today for an 11am appointment with my doctor, so we drove straight through. I also had to meet with the home infusion nurse for 3 hours this afternoon! Now I need a nap.

Here is the link for my caringbridge site:

www.caringbridge.org/visit/jilltollefson

My plan is to keep that site going while I am taking time off from work. There are lots of inquiring minds there.

Good news - no brain mets

I had the brain MRI this morning. My cancer has not reached my brain!! This is very good news. I also talked to the study doc for about an hour today. I am even more convinced that this trial looks promising. There could be horrible side effects or complications, but I think it's worth a shot. Sometimes I have to remind myself that I am dying.

I am starting a caringbridge site for family/work friends to follow while I'm out there. I will post a link when it's ready. I'm not sure if I will keep both going while I'm out there.

anticipation

I haven't written in awhile because I have busy trying to finish things up at work and home. I have most of the legal documents done, I just need to finish setting up my trust. The more I learn about this trial, the more I wonder if I will really make it to transplant. I will be going in this week for a brain mri. If I have brain mets then I'm out. I hope that doesn't happen because then I'm back at square 1. I am scheduled for appointments in Maryland from July 10th - 17th. If all of those go well then I can sign on to the trial.

My cover has now been blown at work. Everyone knows that I have cancer. So much for privacy. There is no way to plan for such a long leave without the word getting out. Of course the word does get a little distorted. One woman approached me yesterday and to tell me how sorry she was that my cancer was persisting. Then she said " so it sounds like you are going to take time off to travel before the end" . I hadn't thought of doing that yet.

still trying to plan

I am trying plan for this transplant, but everytime I talk to them the details seem to change. There are so may variables that may alter the dates or length of treatment. It may not be an option to stay at my friends house after the transplant, so I am looking in hotels etc. It's so expensive out there (even with the patient discounts) . It looks like I need to come up with an extra $20,000 to make it through this. I know that when you look at the big picture that isn't a lot of money. I am fortunate that the initial medical costs are covered, but when you are already tapped it's difficult imagine where that money could come from.