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?
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
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!
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:
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.
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!
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.
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!
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