Saturday, October 13, 2012

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.
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. 


  1. My Dearest Dear,

    I have no words---I will just wish you GOOD days with your Kiddle, a lighter heart in your journey, and sweet dreams in comfort.

    You know you're always in my thoughts and prayers,



  2. Thank you, Rachel, knowing you has been a gift.

  3. Today's the day. I most sincerely hope you began things on schedule and it all goes according to plan.

    1. Unfortunate news ahead, the donor was disqualified THURSDAY AFTERNOON while undergoing the last minute preparations at the hospital. I'll post a note here to inform people. We are heartbroken and hadn't thought to as yet.