please bear with me, my thoughts are jumbled

my intentions are to keep this blog updated daily but I see that's going to be a bit of a challenge. It seems like nothing is happening and everything is happening all at once. We are still waiting for the doctor in Boston to get back in touch with us but for now my neurologist has decided to move my CT scan of my chest up to next week. It would have been this week but due to issues with having someone drive me and a babysitter next week works better. we need to find out if the nodules in my lungs are growing, and if so how much they have grown since my last scan in January.

I was talking with Alex last night and it feels like everything is hitting me all at once. I usually try not to think about what's going on with me and go with the "I'll deal with it tomorrow" mentality, but I am running out of days to do that.

Some things that leave me conflicted is, I have told my mom and Alex that if the cancer has spread I will not have surgery. We do not know what these nodules in my lungs are right now but if they are getting bigger there's a good chance it's Chordoma. If that turns out to be the case, what do I do? Do I go through with what I said? What about my kids? Is it fair to them to have a mother who is there for them emotionally but not there physically? This disease has already changed me so much in just 3 short years, I would hate to see what it can do in the next 10. Is it really fair for them to grow up having to take care of me? For me to be a burden on them?

Or these nodules could be nothing, and I could be doing all this worrying for nothing as far as should I do the surgery "IF" the cancer has spread of not? Then comes the question, how much will surgery help me? If it takes me out of life with my kids for 6 months recovering only to give me 2 extra years is it really worth it? Can the doctors guarantee me no more pain, or at least 80% less pain? I don't know that I can go through with more surgery if they can't tell me that they won't be decreasing my pain because continuing to live like this is just cruel.

I was also registered at the hospital in Boston last week and was sent a hospital card in the mail. I will need this to make any appointment inside the hospital. Maybe not a big step to some but this is just another nerve wracking thing to me. An actual piece of evidence that this is really happening, and soon. Just looking at it makes me want to burst into tears. I just don't know how I am supposed to fly across the country and put my trust into doctors I have never physically met and hope they can take my pain and cancer away. What if they make it all worse? What if I don't come home?

I have been riding my (recumbent) bike the last few days trying to clear my head. But I have just felt so wiped out. I get like that every few weeks. I feel just tired and weak and the need to just stay in bed takes over. I am trying to push through it since I need to lose a few more pounds before I can officially have surgery. But it's hard to get out of bed when every single thing in your body hurts, the only thing that gets me up is my family. I am so lucky to have them.

until next time
xoxo

p.s here's a pic of my bike-