That roller coaster thing....again?
a simpler timer
Just when I thought things were starting to look up. The roof collapses on my head.
My days have been rather amazing this last little while. Packed with family bbq’s, fishing, sight seeing in NYC, first class flight, 2 massages in two days, working my ass off on the soccer field, friend Bdays, Even shot my best round of golf at a very fancy private golf club and the USA even won the gold cup. Everything was lining up arlo. The first time really since May 2012.
Until yesterday I thought I had a plan I could count on. Treatment looked promising, Obe was a match to be my bone marrow donor, had a perfect queens apartment in the works, a classic cross country trip with a great friend lined out, was set to go to a renaissance faire with my cousin Marc.
I received a phone call from Dr. G in New york.
“The trial has been cancel.”
“We had our second person reach toxic levels. “
“This means the study has been canceled and now we need to find a new treatment plan for you.”
I was in shock. Really for the first time I think I have been this confused and lost since I received the phone call that told me I had cancer. (Incidentally that was almost 3 years ago to the week.) I am starting to think July has it out for me.
I did not know what to do. I have not had treatment for 2 Months now! And starting over could mean another month if not more before I get treatment. The longer we wait just cannot be good for my overall success…
I called my mom right away. I did not know what to do. I was/ am really lost.
She jumped right on it and has dealt with basically everything since. She has a good grip on what the different studies are and how they might work. She has help ground me and allows me to bounce ideas of her and working together is good for both of us.
All day yesterday was a blur of changing plans.
• You might still be able to do a clinical trial in NYC.
• You have to fly to NYC to sign consent form for this other study right away.
• Get on a plane tomorrow
• Oh I guess you can sign them and send them to us. (this happen after my mom went all mommy on them)
• Hold on a trial we tried to get in at the beginning of July had opened up in SLC
• Insurance company will not cover “experimental” drugs. Call Patient financial services ASAP.
• Find tax forms from 2012 and 2011 and tons of financial records to send to MSK.
• Up and down up and down.
• And my brand new car is giving me some error signals. And the service center is full for a week.
o This is a whole another area I could go off on! The Ford dealership not making my life easier. I called on Monday to have them look at my brand new car which is now giving me some kind of error message and says get serviced now. They said the earliest they could see me was Monday the following week. Which was to late but I made the appointment and went on a waiting list. Or so they said. When I called today they had no record for me. Now the earliest they can check the car is Aug 15!
So where does that leave me…
It is still a very fluid situation. By the time this gets to your inbox my plans might have already changed.
• Cross country trip is off…for now. Maybe…
• I am going to sign up for both the SLC and the NYC trials.
• I am hoping to meet with the slc doctors tomorrow. Once I have talked to them I will know a lot more about my “future”
• Really is the best I know.
So there it is. What ever that is.
I will throw in a little feelings because I am pretty….messed up right now.
I am really upset about missing out on the road trip. I was putting this together as a kind of bucket list. I was looking at it like a last hurrah before buckling down and being sick for a year plus. I had planned to visit my 90 year old grandma in Oklahoma, maybe a trip to Buffalo River National Park in Arkansas, Maker mark Distiller, Mammoth Caves, biggest ball of stamps you know road trip things.
I guess I should be excited that I might be closer to home. It is also goo that I was not one of those in the study that had toxic levels. I just cant let go of the fun the road trip would have been.
I also was really looking forward to living in NYC. Kind of in that same way I loved the basement of Dasch and Megs’. It was cool experience, something I never would have done otherwise. It was so freeing and a great (probably not the right term there) way to experience something different with little worries. I feel NYC would be the same. I always kind of wanted to live near my cousins and family. I have only spent long weekends and such with them since I was little. But it was always a blast.
So I am sad about those things.
I am happy to perhaps be in SLC. Though I kind of feel like I have been there done that. But it will be easier to pack for that. And I was stressing a little on what to pack for 6 months in NYC.
But hell this all could change again soon.
As I write this I am getting updates from my mom about the SLC setup. Sounds like the Huntsman Cancer Center is not a tight ship. Yesterday we overnighted my records to the address they gave us. They arrived at 8am. We called them at 10 and the nurse could not find the records. Turns out they got lost in the mail room. (why the hell did they tell us to overnight it and why did they not look for them in the mail room if they knew we sent them!) Then this nurse was supposed to print them and give them to Dr. Halwani who is running the program. When we did not hear back she called the nurse but now she is not answering my mom. So my mom called Dr. Halwani office. They had not heard of me and have not seen my records! They called back and said they will call me this evening to setup an appointment for tomorrow…hopefully. Do they realize I am in Moab?
So now I am leaning to NYC again. But I don’t want to make a decision on paperwork incompetence or rather unfriendly staff at the Huntsman. Or on the fact that I kind of want to be out in NYC. I want to make it on what is going to be the best for my health.
Ok that is all for now. If I do not send this soon, it might be out of date. Which is will be anyway.
I will try and do a little update tomorrow to let you know what is up.
Thank you for all the thoughts and prayers. And I apologize for not getting back to all of you. And I am mostly send to voicemail a lot of your calls. I am just so overwhelmed.