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!

More Than Salt

                                         
Have you ever wanted to read a positive thought during your day?
Been busy, or just been surfing the internet, and wished that for once you could just go to a site that is dedicated to just sharing positive thoughts in a simple fashion, no hunting for the uplifting, no gobbledygook wrapped in any rhetoric, just a quick thought that gets to the point, states the truth and makes no excuses for it? Do you know what I mean? Just a click and then 
                >BAM-POP~KABLOOEY!<  
you're there, basking in a moment of truthful and positive reality?
Reading words that cut to the center of everything and remind you to be aware?
Well, I think a lot of people feel the same. And so does my daughter. AND, I think that I have the message to share that fits everyone's true need. So, Elissa did a little clicky-clackity on my laptop a few weeks ago and now I'm on Tumblr. Here is the link, for you, with my love. More Than Salt
See you there for positive thoughts from the daybed!

A Kitchen Plan, A Transplant Dance

This is our current kitchen setup. The lower cabinets are unusable and the interiors are damaged beyond repair, they just hold up the sink.
There are a few holes in the flooring, but we don't mind- it is wonderful to have a floor, and we know it!



The refrigerator is funky, the interior of the freezer is odd, but we can not imagine buying a replacement, why spend the money on something unnecessary, yes?
BUT, it is so difficult to use this partial kitchen, I've wearied of it over the past few years.
As well, now that I can no longer use my hands, the cooking and cleaning is left to Elissa- she is ill equipped to handle the limitations of a kitchen with no cabinets and no dishwasher, sweet soul that she is. 
She braves it every day though, my little trouper, and she is becoming quite the accomplished home cook as well!
I bought a dishwasher on Craigslist two years ago, for Elissa's birthday.
A lovely machine, maybe ten years old, in excellent condition, with a steel interior!
I promised her that we would someday have a kitchen and the dishwasher was the first step, it sits under a window, waiting to be installed, lovely old thing.

I am hanging on for a stem cell transplant, August is our target date, and we have a 10/10 match- perfection in transplant speak, very exciting news, I know! 
I've been deteriorating, but now I am steadfast in my desire to BE here for that transplant, and we are doing everything possible to get to the magical moment!
Well, I just don't want to leave Elissa with this mess of a kitchen, just in case. 
I've been hunting for used cabinets everywhere, and I even had Elissa drive us to the local Habitat For Humanity Re-Store about a month ago, to see what they had. 
Believe me, getting me bandaged and out of the house to do that bit of shopping was an ORDEAL, but, it seems that I was meant to be at that charity shop on that day, because the nicest man working there handed me a telephone number as we were leaving AND  I called the number AND spoke with this lovely woman named Debra Behnke AND she worked some magic AND it seems that we will be getting a basic kitchen set up from some kind folks in our small town!

SO- Many folks have been asking how they can help us. 

My loved ones all know that I have trouble accepting help and gifts, but I have recently worked on this flaw in my heart and I am learning to graciously and gratefully accept the helpful kind of affection.

This kitchen is something that I can not do on my own, especially in the condition I am now in, so by helping us get a kitchen, well, it is a mitzvah of great import, in my mind.

You can contact  Debra Behnke, she is lovely and easy to communicate with, and ask how you may assist- by funding the kitchen repairs- or help in putting in things, or you can offer her supplies, you can write to her via post or email, or you can telephone her- whatever form of help you care to give is welcome and appreciated!

Salem County Office of Disability Services
ATTN: Debra Behnke 
Administration Building 
94 Market Street 
Salem, NJ 08079
Telephone: 856-935-7510 x8316 or x8311 or x8598
Email: Debra.Behnke@salemcountynj.gov

Please Help

Please click on the link and HELP.
Not just for me,
but because we can save SO many lives with this registry.
Gift Of Life Friends of Rebecca Salame