Saturday, July 4, 2009

Moving on to Dr. O'Connor

I havent updated in a while, since I thought this was sort of my dealings with transplant. But, unfortunantly, we learned my cancer had come back with avengence, in my spleen, liver, and several lymphnodes. I was told to go home and "get my affairs in order" Since that isnt an option, we went in search of the top doc in the country, if not the world on lymphoma, Dr. Owen O'Connor in NYC. Since my cancer has become resistant to chemo and my remissions are becoming shorter and shorter, its time to think outside the box. Besides cancer, Im otherwise healthy, so Im not going to go home and die.. sorry.. not my style. So I have began a drug trial using the drugs Vorinistat, which is approved by the FDA for Peripheral T cell lymphoma, and high dose Vitamin B12. Ive been on it for about a week and havent really had any side effects. Anyways, Skylar keeps me going, and I plan to dance at her wedding. Sorry for the lack of updates, Ive just been really pissed off my transplant didnt work.

5 comments:

Heather said...

love you kara!!! you are always in my thoughts and prayers. and so happy you've moved on to dr. o'connor. as for the crappy cancer and the insensitivity you faced...i am pissed right along side you!

Mike Y said...

Kara, I am pissed off for you too. Just so happened to check yesterday to see if you had commented recently, and saw the news. Glad to hear you are thinking "fight". Best possible wishes that you will kick this thing right square in the @#$s.

Melissa said...

Kara,
I am so incredibley sorry to hear this! I hate this! I am at a loss for words really.....but I am so proud of you for your determination and you will be heavily on my mind and in my prayers. Please keep us posted as much as you can. I am absolutely devastated to hear this news and I am so sorry that you have to go thru this.
Love,
Melissa Headrick

WannaSmile said...

You don't really know me, but I've been following your story now for almost a year. I just want to tell you "you go girl!". I like your attitude! You are going to get through this and it sounds like you have a wonderful team of people on your side.

My mother just went through a stem cell transplant (last March) for Mantle Cell Lymphoma (non-hodgkins). I was glued to your blog when you were going through your transplant so that I could get an idea of what she was in for. Thank you for your honesty and your courage.

Wishing you all the best, and keeping you in my prayers...

Christina

Pirgnori said...

Hi, Kara: We don't know each other but we do share one important and incredible thing: Dr. O'Connor. I was diagnosed with MCL in 2006, and he's kept me alive and active. I'm now on an off-label drug Revlimid, a derivative of the infamous thalidomid.

Dr. O is not only a genius when it come to treating lymphoma; he's a fantastic human being, exactly what we want when we deal with a killer disease like MCL.

I'm not a great believer in a super power, but I do believe, with no hesitation, that we have the best doctor to care for the hand we've been dealt.

I wish you continued success.