And so it continues...

I left for Toronto with my mom last Saturday night and dad met us there Monday night.  We all stayed at my uncles.  My appointment was Tuesday morning at 11.  We got there plenty early and I went to check in and the woman told me I was scheduled for December 3rd.  I said there's no way.  I got the call on the Friday afternoon at 5 pm before remembrance day long weekend saying one of the three doctors I was to see was only in on Wednesdays so I could pick the 12th (no time to schedule things) or the 23rd.   I decided on the 23rd and was told I could pick either 9, 10, or 11 am.  I picked 11 am to allow us lots of time to get there on the subway. I called back to confirm my appointment was with all three doctors at that time and told that it was.  I spoke to two different ladies and the one that called me said she was just filling in... maybe that's where the mix up took place...who knows.

My oncologist in Fredericton told me my documents and images would be fed ex'd to Toronto.  The doctors were great and they got me in although I ended up meeting with a different surgeon that originally scheduled and never saw the radiation oncologist.  Also, my documents made it to TO but the CD with all of my images didn't... We called my oncologist in Fredericton and her assistant confirmed she mailed everything together herself... she had also left me a VM telling me when she had done so.  So, apparently whoever received the document removed the files but never checked or saw the CD.  

The medical oncologist and surgeons I met with could only go by the written reports.  They needed the images to see.  What we decided tho was that I would go back to Fredericton ASAP and continue another 6 months of the chemo I had just finished (6 rounds).  The oncologist in Toronto wanted me to have an MRI done (I had a CT 2 weeks after I completed chemo), but she didn't want me to wait in Toronto for that.  I am only a week off my chemo schedule from before (every 3 weeks).  Later that afternoon I had a call from Fredericton's oncology with my appointments for Monday to continue chemo.  I will start with the oral chemo/2 IV mixture first.  

The oncologist in Toronto decided to continue my chemo as I handle it so well and I had a "somewhat response".  The goal is to shrink the cancer as much as possible and then I will go on "maintenance chemo" where I take a small dose of oral chemo at home every day and go in once a week for IV chemo. 

We were anxious to see what they had to say about clinical trials and I can start one but that is more of a last step kind of deal.  They want to exhaust all of the chemo options first.  I will be monitored closely and if at any time the cancer progresses I can start a clinical trial.  There are 2 drugs in the same clinical trial so if one doesn't work I can try another. 

I asked how long someone can stay on the maintenance chemo and the oncologist said she has had someone on it for as long as 18 months.  With this chemo, and the possibility of a clinical trial I will see more than the +/- 12 months originally given to me in June. 

I hate that I have to do more chemo and am debating on getting a port again as I'd like to be able to go to the gym and swim.  So, we will see how it goes.  I'd like it scheduled between my chemos so it has time to heal.  I had a bad experience with nurses accessing my port 3 days after I had it put in 2 years ago...

The surgeon in Toronto said surgery is not an option as I would have little quality of life.  The oncologist told me to do whatever it is that I wanted- which is hard as I can't travel far with my chemo schedule.  She also confirmed that there is no known cure to Ewing's but what we are trying to do is keep the disease dormant for as long as possible.  

I am glad that the doctors have not given up on me as I have not given up on myself, nor will I ever.  I continue to try alternatives and am open to pretty much anything.  I cannot juice or take my plankton and mushroom supplements 2 days before, during, or 2 days after chemo.  Otherwise, those are my priorities when I can.