Sunday, November 12, 2006

'Nuff whining from me for now :)


Just had a few rambling thoughts for today...

In awe of my capacity to gripe, whine and complain to whatever degree in my last post...but I guess we all got to get that out some kind of way-heheh.
Today, I am looking at all the brighter things that have come up in the last couple of weeks.
Found out that I will be able to participate in the M-Vax trial at Jefferson...Turns out that I had enough tumor cells from that last batch of sub-Q's/in-intransits (the big boy and its babies) to make a vaccine from. Now, to me, this is AWESOME, since it will hopefully help wipe out melanoma in the rest of my body, not just my leg as in the ILP. From my understanding, the cells will be irradiated and tagged with DNP (hapten?) so my body will hopefully recognize them as foreign. This will hopefully be a big step toward getting my immune system to recognize any UNmodified melanoma cells that may be lurking anywhere else in my body. I believe at some point there will also be an IV chemo infusion of Cytoxan in between vaccine injections, then sometime later, BCG. In any case, I am PSYCHED, because between the ILP and now this, hopefully we can blast melanoma from every angle and in any place it may be....

Got to thinking today about all the opportunities I had while I was in the hospital to talk about melanoma. Quite a few people asked about it while I was there: a couple of my younger nurses who were floored by my age and the fact that I have already had a few surgeries for it, one middle aged male nurse who had all sorts of questions since he had had a mole that he was sure was melanoma, but it was diagnosed benign, and one ultrasound tech.

The young girl who was the ultrasound tech asked me all sorts of questions about whether or not I baked on the beach and in tanning beds in my teens (yep) and twenties (unfortunately, another yep). She admitted to me that she used them herself in the past, but as she is seeing more and more young people with melanoma, she has been more and more discouraged to keep it up...Hah. Gotta get the word out whenever we can, even if only one person at a time.
Made sure I wore my "Melanoma Sucks" t-shirt while I was in the hospital too; once I got my IVs pulled, out it came and on it went. Got quite a few laughs, the most memorable being from my surgeon. He loved it and asked where I got it so he could get himself one :)

I am also so surprised by how well everything has gone with my recovery and how I have felt better and better each day (knock wood). From everything I had read along with everything I had found on the web, I got the incredibly strong impression that ILP was one mother of a procedure with very bad side effects. Of course, it is....just so surprised and ecstatic that so far, it seems, I am doing much better than I ever anticipated or imagined. The whole thing just got to be overblown in my mind...some giant, hulking, oppressive thing...The complete deeper abdominal node dissection has so far caused me more pain...and that is getting better every day...Now just to hope for all clear lymph nodes!!

Ed and I were even moderately crushed at the thought of not being able to go to his cousin's wedding this November. We were thinking that I would be too weak, sore, swollen, etc. to go to a wedding two weeks post-op. Now we are working things out to get our butts up to Philly to this wedding this coming weekend. Dancing my little (or not so little anymore) ass off like I used to may not be in the cards, but I definitely plan on getting up and dancing with my husband if it is the last thing I do!

In my case so far, all the thoughts and prayers sent up by so many of my dear friends and family must have worked...and for that, I thank you, from the bottom of my heart...All of you will never know how much all of it has meant to me, as there are just no words good enough...

2 comments:

Anonymous said...

Glad I popped in here today. Have been thinking about you and hoping that each day you are doing and feeling so much better and it looks like God is doing His good works in you. why, am I not surprised, well, maybe a little but not too much...I'm always hopeful for my friends and family and you are just that, friend. I can hear the sparkle in your words and you sound so encourgared and I am so happy for you. This vacine from everything I've heard just might be the bearer of awesome news for you as you move forward in your fight against this beast. I love how you nurses and doctor responded to your shirt..it says it all. Take care friend, sue

Carver said...

Hi Shannon,

I hope you have a wonderful time at the wedding. I am so glad your recovery is going better than you thought it might. The vaccine is also such great news. Hoping you'll have a long dance with NED soon as well as your dance with Ed at the wedding. I love the photograph on this entry. Actually I love all your photographs and your children's funny faces on the prior entry made me laugh out loud.

As ever, Carver