Incurable?! Terminal?! Whaaaatt?? But you look so.. good…

Well I’ve been delaying writing this post, as my news is not great. Not horrible, but not good. Myeloma is still winning as my M-Protein/M-Spike is up again and so is my IgA, etc. (Stats later)

 I hate you Myeloma, 
but this depiction strikes me as rather cute

And dang it! My immune system (White Blood Count and ANC, etc) is down again. Scary low. My oncologist spoke of Neupogen shots if my Whites/ANC continue to plummet, and especially if we advance to 15mg Revlimid.

How do all my myeloma cancer pals travel as they do and make contact with the public like they do? Some have said there’s not a minute to waste, so they go wherever they want, and deal with the consequences afterwards. I read blogs about myeloma people’s travels and just cringe at where they go (nationally and internationally) and then read they are later hospitalized for flu, pneumonia, viruses, etc. I am happy to report that my isolationist, bubblized lifestyle is working… and (knock on wood), I haven’t been really sick-sick (virus or bacterial type) for a while! I’m also happy to report that I haven’t seen the inside of a hospital since my Auto-SCT process! So I must be doing something right :)  I know I am missing out, and limiting my already limited life as a result of not traveling, but then again… I just don’t have the energy or stamina to do the things I would most want to do…

One day… I will do this again!
True enough, I hardly go anywhere… I don’t shake hands at all. I don’t hug much. Actually, I don’t make much physical contact with anyone really (unless I spray them down with bleach and alcohol first! j/k!). I socialize at a distance (on the few days I leave the house) and give only “air hugs”. I still actually make it into my office several days a week. Everyone generally, is really respectful of my situation… except for those that don’t understand my cancer type (it’s invisible to the outsider). Those that are just meeting me for the first time think I’m kidding, laugh and make a joke or two, and still try to shake hands or hug me. And then there are those that think I am just being crazy OCD clean.

Case in point the last few months. I’ve had a variety of weddings to attend, family gatherings, non-profit events, a VW car show, special social events at my college, etc. When the topic comes up, which invariably it ALWAYS does as I do NOT shake hands, hug, kiss, get close, etc, people laugh and say, “oh Julie, don’t be so “frikn” paranoid”. You look so good! How can you have cancer? Your energy level is so amazing. You do so many things. Just look at your hair. You look so good” blah blah blah!!! Well thank you for your sweet compliments everyone … but I really am a sickie.  I just dust off my cowgirl boots, pump myself up mentally, smile a lot AND PLAN ALL MY SOCIAL EVENTS AROUND POWERFUL STEROIDS CALLED DEXAMETHASONE!!! And I DON’T EAT before I go anywhere… just in case…

Hello people! If only you saw me when I get up… without a make-up, with un-glued, un-fluffed hair, with dark circles under my eyes (lol just ask Jim). And just imagine if you really knew all the time I spend in the BATHROOM! Not to mention all my daily symptoms and medication side-effects. Then you would understand I really do have cancer. Perhaps “invisible to you, but all too “visible” to me. And by the way, I am not exaggerating: Myeloma really is incurable, and our clocks really are ticking rather fast, and the word “terminal” is relevant. I say these words over and over and over to make sure I am fully in touch with my situation, impressing the point to myself that I must “get my show on the road”… now!!! Did you know… I have already out-lived my statistics…

Been there, done that, a very long time ago… want to do this again!

So in light of all of this… (and I said to myself I wasn’t going to be so wordy on my posts anymore, as I don’t know who’s reading, who cares, or if I am too boring, too deep, too blunt, too repetitive, too philosophical, not interesting to read anymore, or just too dang wordy)… I was just going to post some beautiful pictures (to me, that is) that represent (some, not all) places, ideas, dreams, goals I would like to see, do, accomplish before I die. There, I said it! Before I die! Tick, tick, tick, tick tock!!!

I’ve always dreamed of having pasture land!
Can you just imagine riding/driving down this road
Snow, sun, pasture, horses, fresh air… limitless views
And I always wanted a Red Barn!
Cute, small, in/out access and I just love white fencing like this

I don’t know when, how or where, but I just want to swim in beautiful, crystal clear waters!
For those of you that swim in pools or oceans, travel to local or exotic beaches and take for granted doing so… I can’t recall the last time I dove into a pool, or fully immersed myself in the ocean.

This pic reminds me of when I was stung by a “Man o War” on a Maui beach! 
Very-pre-myeloma days. Maybe that “caused” Myeloma?!
Maybe one day I will post a pic of me in one of those chairs…

Happy Trails everyone! Hello November!

I lost an incredibly beautiful, vibrant, myeloma-sister a week ago. We were diagnosed just days apart and had very similar myeloma treatments. My head is stunned, my heart broken for her and her family, and I am just so devastated to hear of her loss and myeloma’s affect on her…
I will link her blog here when her family let’s me know it’s ok, after they post her final blog entry…
I have lost more than 6 myeloma peers since my Dec 30, 2009 diagnosis. We were all diagnosed around the same time, and have had most of the same treatments… 

And finally, my recent Stats:

IgA = 1200 (officially 3x the high end of normal) 70-400 scale

M-Protein, M-Spike = .94 (NO cancer = 0 zero)

ANC = 1.2 scary!  (1.8 to 7.7 scale) Cooties stay away!!!

WBC = 2.6  scary low immune system (4 – 11 scale)- Hazmat suit time!

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can!