Monday, December 31, 2012


  Let's do a kindness, please share my links and help me to save some lives, maybe mine? Help me to save some lives- links here!
All I'm asking is for a cheek swab , just to see- are you someone's match?

Wednesday, December 19, 2012

Let's Change The World

I am doing my best to think of something to do that will be helpful for others who need a transplant donor, to lessen my sorrow and disappointment- something that will have a lasting impact. 
I have some ideas, after all, what good is my life's journey's pain if I can't use it to somehow inspire others to do something wonderful? I AM, though, I AM sad and disappointed, and frightened. 
So, I'm only out and about when I can maintain some cheer for folks and always I'm thinking thinking thinking of a plan.
I want to change the way people think of donation in general, stem cell, bone marrow, blood, organ donation.
I want to make it a cultural rite of passage to adulthood, akin to a first legal drink, a driver's license, registering to vote.
For people to celebrate it, understand it and look forward to being old enough to do it, not for it to be a mysterious and oft misunderstood action.
If registering for these things was more common, more peoples' lives would be saved without so much drama, stress, expense, difficulty and rarity.
Without so much heartache.

I love you, thank you all for your gifts to us of comfort and affection, the telephone calls, texts, emails and gifts have been such a surprise. I am so touched. I treasure you all so much, I can not express it enough. I hold your affection towards me and the emotional support I receive steady in my heart. What a comfort to know that we have been here together, that there are folks like you wonderful souls, in this world. I am still surprised this minute at the affection I'm receiving, just when I am truly in need of it. thank you all for knowing this, and for coming forward. You are helping me get through this horror so much, my sadness would be much stronger if I didn't have your presence in my life. Thank you.

Now, let's all pull together and save some lives, help me to leave a legacy of light!

Here are some links to start with, links in the main about me, but know, please, that my goal is not to find a donor for myself.  More wordiness from me after the links:

My transplant doctor, Dr. Sunita Nasta, in case you want to contact the team for anything

An article from Philadelphia Jewish Voice about my search, with links to Be The Match

The Gift Of Life page that my cousin Rebecca made for me, what a wonderful gift!

A link to Be The Match, a registry in the US

A video about my search

And this,
A list of registries all over the world

I want to get 10,000 people to register to become donors before I am gone, that is a small enough number and quite doable if we all pull together! 
My genetics are very rare, and finding another match for me will be difficult, but imagine, finding matches for others- so they do not suffer this way- what a gift we can give.
 I do not want just certain people to register, I want you to ask and cajole EVERY PERSON whom you are in contact with to register, and if they can not register, ask and cajole them to get someone to else to. 
If you have a job, if you go to a church or synagogue, temple or mosque, if you are in a knitting group, chorus or other social activity,if you are in school, if you are a member of a museum, if you shop at a store or a farmers' market, if you do ANYTHING that involves others, ANYTHING AT ALL,  PLEASE consider making a drive in that place, PLEASE. I will help you to figure out how to go about it, just ask me, I will learn and then help you to learn.

I  am not giving up on my journey, I am full of hope for many tomorrows, this is just the next step for me in my love of helping others, I see this need and the answer came to me and now I am doing this, and I am asking YOU to help me. 
I have no money to achieve this, but I do have a heart that cares and a mind that is quick, and a story that just may open the heart of others to do something that they might not otherwise feel comfortable doing, well, let's do this, let's SAVE SOME LIVES!
PS: Didn't I look good yesterday? Just back from chemotherapy, too!

Saturday, December 8, 2012

Late this afternoon, while we were packing for the hospital(I was 
scheduled to go Friday morning for the transplant), the team called and 
notified us that the transplant has been canceled because the donor has a permanent medical  issue that had not been disclosed. 
The transplant team discovered it today during the final preparations. 
The donor just really wanted to be a donor, and meant well. 

My transplant doctor is flying to Atlanta tomorrow morning for a conference where my chemotherapy oncologist already is- 
they have ordered some more of the chemotherapies I was on until last week, for the weekend, and they are going to give me as much chemotherapy as they can, for as long as they can. 
We are going to get some radiation for my fingers on my right  hand, and we will just hope for the condition of my face and arm to not deteriorate too rapidly. 
We are also going to try to get me into a study for a new experimental drug.

Please do not be sad or angry or frustrated, 
I have had some extra "good" time, and we all must be grateful for that. 
Who knows, another donor might show up before it is too late. 
If you haven't gotten tested to be a stem cell/bone marrow donor, now is a good time! 
Imagine how you felt hearing that I lost my donor, imagine how my daughter and I feel, tell your loved ones, your acquaintances, how important it is for people to register.
I almost got a chance at more time, imagine if everyone was a donor, I would have multiple donors waiting and this would just be a momentary glitch.

I need a donor and so do many other folks.

I probably have at least 3-6 months of decent time, let's be happy.