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!

THE TRANSPLANT IS OFF 

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.

 PLEASE SHARE THIS LINK, PLEASE ASK EVERYONE YOU KNOW TO REGISTER AS A POTENTIAL DONOR, LET'S SAVE A LOT OF LIVES!, MAYBE MINE! 

I need a donor and so do many other folks.

Rebecca Salame's Gift Of Life Stem Cell Donor Drive 

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

It's OFFICIAL(finally, whew!). 

I go into the hospital December 7th and receive the transplanted stem cells on December 13th. We have decided that I am going to undergo a "mini" or nonmyeloablative transplant. This kind of transplant involves less invasive and less system suppressing treatment in preparation for the actual procedure, so I will, hopefully, have an easier time AFTERWARDS. I am receiving very careful and caring treatment, at every hospital and clinic and office. I am grateful, and I know that I am very blessed. B"H.

Enjoy these lovely flowers with me! My friend Kristee sent them to me ages ago, and Elissa snapped photos so that I could remember them and get enjoyment from them always. I haven't been sharing because things are not fun, and I prefer to remain upbeat with everyone. 

However, I DO realize that not sharing my burden is actually not friendly, and that sharing makes us closer, and I DO want that, so I am making the attempt again. I wrote an update to one of our "CTCL" groups this week, in place of an update here I'm going to share that email with all of you. As you will see(those of you who know what is going on here daily at the Coop!), I don't share EVERYTHING. I'm honest but I don't think that it does any good to tell everyone exactly how bad things are. Unless a member of the group contacts me personally I like to keep to the basics and generalities. I will do my best to write again, soon. Here's the message I shared:

Hi, Folks.

Just an update on my journey in case anyone is keeping track for their own future prospects.

The transplant has been set back a few times for various reasons, just now the chemotherapy has stopped working and the Cooper team is trying to get a handle on some protocol that will get me to more of a remission.

GOOD NEWS: the donor and I are the best of all possible matches- even down to blood typing. 

I really couldn't have a better chance donor-wise than I do have. 

I am hoping that the schedule issues are just temporary, although I am stoic about it, 

if it isn't meant to be, then, perhaps, something else will come up for me to attempt.

I'm currently walking, driving, using my hands, wearing clothes- it has been a gift to have so much remission activity. 

I believe that if nothing comes of this effort for a transplant I can still survive for multiple months longer if I am careful with infections and illness.

I've had shingles in my right eye again and hence have seen a new eye doctor. 

I HAVE developed cataracts in my eyes, from past radiation we assume, but they are very minor and the doctor seems to feel that I could wait years to have surgery.

I have some scarring from tumor activity on my right eye- it is my troubled eye, indeed, poor little orb!

The scarring keeps my lower lid a tiny bit droopy and a skin graft isn't a good idea in my case, so I need to be diligent about using eye drops for extra lubrication- every 90 minutes when I  am awake is the guideline I've been given. 

My eye is sore much of the time so I am trying to be diligent about the drops.

I'm feeling really good and then awful in the physical sense- it's so unpredictable but I am so much better than I have been for years and in fact, the past few years seem like an impossible dream when I am typing and walking and even folding clothes and writing.

Today my daughter and I sketched together and the other day we played cards and I truly forgot that I hadn't been able to do these things just a few short months ago!

I have skin on almost my entire body and it is not great skin but for me it is perfection.

I'm really feeling good and can not fathom not feeling this normal again, but I suppose that is what is ahead, regardless of transplant or anything else, stage 4B is stage 4B and it is not going to disappear.

No remission activity has been lasting, the weeks I am not on chemotherapy the tumors rear right back up, aggressively.

Anyway, I want you all to know that it is not normal to get to this stage at my age, if you are diligent once you are diagnosed at early stage the odds are that you will NEVER progress this far, and I want you all to be so, diligent, and take care of your bodies.

If you are diagnosed before stage 4, then you are truly ahead of the game and the odds are with you.

Please, also, know that I was diagnosed at 2B vs 4 in June 2006(I was left at this "staging" and that has enabled me to have many experimental treatments),

 and it is 2012 now and I am STILL HERE.

Six plus years at stage 4 is possible!

We only have this one chance with these bodies, and life is such a gift, please, my fellow CTCL folks, listen to the following advice that I am spewing at you from this place:

Eat with care, you are truly WHAT you put into your body, and exercise if you are able, sleep well and long daily, follow treatment regimens, keep your skin clean and moisturized- and, finally, if you have stress- find ways to manage it. 

I truly believe that my happiness at being alive has helped me to remain here as long as I have with such a challenging case! 

In short, LIVE as well as you can.

FINALLY,

I've had many treatments and if anyone ever needs some quiet advice or anecdotal sharing of my experience, feel comfortable in contacting me via this email or my telephone.

PS: Neulasta pain SUCKS but it is totally worth it, my white blood counts bounce back after each week of chemotherapy!

Rebecca

age 49, stage 4B, diagnosed June 2006, had symptoms  since 1989, diagnosed at stage 2B vs 4, have undergone most treatments, including TSEB, multiple chemotherapies and biologics, lots of spot radiation, undergoing a chemotherapy mix of vincristine, etoposide, cytoxan and prednisone with neulasta right now in preparation for a stem cell transplant with a 10/10 donor(perfect match!) at UPenn. 

The Stray Tomato

                                    It's wonderful, and immense!
                   Luscious pearls of golden sun have come to us all summer- such a gift!