As most of you know I was gearing up for the NYC trial at Columbia with Doctor O'conner. After a few last minute thoughts, and conversations. I've decided to back out of this trial and go with my gut, and begin the initial screening process for the LBH589 trial here, in Boston.
So Plan A = LBH589.
So many people have offered me their homes, and meals for the next week in NY. That I did not want to appear rude, by ignoring your invitations. And although, I don't have too much information, as of yet. I know that the start date for my first cycle will be October 6th.
The pathologies have been sent back to Dana Farber, the screening tests are taking place this week. You'll laugh at this... Thursday they're doing ALL of my tests. BMB, blood work, EKG, RVG, separate PET/CT scans. Oh the days of being in the hospital from 9-5, you have to love them. But, at least the tests will be done. We'll have all of my results ready by Friday.
The trial has to start on a Monday and due to high volume level for clinical trials, DF says the earliest they can start me is the 6th; however, if someone were to cancel an appointment, or back out, I could start September 29th. But, if we start on the 6th - hey - that's okay with me. One more week of freedom :)
I hope everyone will be able to support my choices thus far, but in the end, I know it really is my final decision, and how I truly feel about each trial. Just know, there were a lot of different factors that gave me this change of heart, which I will share with you all a little later...
Just wanted to send out the word -- so for now,
goodbye Columbia... hello Dana Farber.
* for the worriers in my life:
In the end, the time difference will only be ten days later of when I begin the drugs. In the grand scheme of things, and that is of Hodgkin's, this time difference will not make a difference in the efficacy of the drug or on my disease.
Trust me, this was a good decision.
Sending Love,
B
18 comments:
Oh Bekah, you are so strong. Good for you for doing what you feel is best for YOU.
I truly hate this disease and I hate that you have to deal with it again. I've been reading your blog for some time, but wanted to let you know that you're an inspiration not only to those of us that have had the hodge, but also to others that can't even imagine what it is like.
You are in my thoughts :)
Love Ally
I do, truly, trust you, Bekah - you know yourself so well - you have made the right decision for YOU.........love Vx
Bekah,
There are no wrong decisions, so do what you think is the right thing for you and never look back (as usual)! Next week when the book of life is open, you'll be on my list (the good one)...
Good luck with the trial (and the pre-testing)!
B
While I would have loved to see you in NYC, I'm glad that you made the right decision and feel comfortable with it. Good luck with your marathon testing day! I perfer those, actually, so at least it's all over with.
Mary
You are always such an inspiration. Glad you were able to choose what is right for you. Hopefully "testing" day will go by as quick as possible.
:) Petrina [Justinsgirl]
Bekah - you said a week or so ago that you had to go with your "gut"...your change in decision about the trials must feel really right to you...so go with it and don't look back on what ifs. Always wishing the best for you. (HUGS)
Susan
ditto
love ya sis
j
Piercy says "A strong woman is strong in words, in action, in connection, in feeling"
I add "A strong woman knows deep inside what is best for her"
Val
Bekah,
We trust your choice. It sounds like you thought it through and made a very informed decision.
Sending you our love,
Marsha and Bob
gHi Bekah
Good Luck honey....always go with "your gut". You are making the right decision and I will keep you in my prayers. You are one bright light in this world....keep shining!
Your Friend
Karen (Long Island, NY)
Bekah -
You are right to go with your gut!
I'm thinking of you EVERYDAY!
Thank you for being such an inspiration!
Love Stacy xoxo
Hi Bekah - checking in to see if you started the next treatment on Sept 29th if someone cx...or will it be Oct 6th for sure? Either time...your army of supporters is going through it with you. ((HUGS))
Susan
how you doin girlie....
we are thinking of you
j
Stopping by, Bekah. Thinking of you. :)
Bekah
Thinking of you and hoping you are staying strong. Good thoughts and prayers coming your way.
Love
Karen (long island friend)
Just checkin' in to let you know we're thinking of you.
K
I heard virtual hugs are good for vanquishing crappy chemo side-effects.........so here goes........H - U - G.........did you get it??
Thinking of you, B........Vx
Hi B, Hope you're feeling better now. Please update and let us know how you are. Hang in there. You have a big cheering squad out here. Love, Alison
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