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A Message of Gratitude to the Online Science Fiction Community

(Reposting this old update now in my new blog – originally released to the world on February 2010)

thank you everyone!

This is an open “thank you” letter to all members of the online SF fandom community. Please pass this grateful note on to anyone else in the SF world who would be interested in reading this story. It’s time for you to be proud – even if you were not intially involved – for you are a part of a community who changed the life of one very scared Stage 4 breast cancer patient. You are the people who made Christmas of 2009 an unexpectedly bright time in a very dark chapter of her life. This is my story. I am Elana, creator of the B5 Jumpgate <*> Pins. Here’s how it all happened.

MY CANCER HISTORY

I was originally diagnosed with stage 1 breast cancer in June of ’07. I had my surgery in Portland, Oregon just before I moved to Southern Nevada in September ’07 for a new life and chemotherapy. (Check out the sticker I put on the surgery site to surprise the surgeons: Elana’s tumor humor). ;)

By August of 2008, I thought my cancer had gone. The scans seemed clean. So I decided to debut a whole new life as a computer-fixing geek. They say “fake it until you make it.” As long as we are talking about the things I love (and not the things which honestly panic me) I can act like I’m some kind of REALLY out there, take-charge, confident person – or something like that.

So in the next few months, I proceeded to make a big, giant splash about showing the world that I was this totally-confident, inspiring female technogeek ready to take on the world, seeking a new job and screw the recession. Little did I know how completely wrong I was.

Turns out that some bad cells had lurked and survived. In early spring of 2009, a CAT scan revealed that the cancer had not only returned to the breast, but spread to the liver as well. It had become Stage 4 cancer. (There is no Stage 5.) This was also “triple negative,” a kind of tumor which is very difficult to treat. There is a kind of 1 to 100 growth-factor scale that oncologists use to measure how aggressive a tumor is. A less-threatening tumor is one that has a growth/aggressiveness factor of maybe below 10 or 20. Mine is in the 70 range. Pretty scary stuff.

So much for my trying to be some kind of confident geek goddess. :-/

The chemotherapy I got this time around was pretty scary stuff too. Bone pain meant that I found it difficult to walk. Fatigue took away my ability to be mobile for more than perhaps 4 hours a day.

FEAR AT HOME
On top of this, the financial strain meant that I could not afford a good place to live. A few months before the diagnosis, I ended up renting a cheap room in a house owned by a landlord who was on the verge of a gambling addiction. There was also a housemate who was an alcoholic and a repeat felon who screamed violent threats when drunk. I had to call the cops on him. The cops said I was right to call but they could not do anything more unless he physically harmed me. I had no money or energy left to move anywhere else, so I stayed scared and locked inside my room most of the time.

By November, the landlord told me I needed to be out before New Years because he wanted my room back. I had no money to move, no spare rent for a deposit and a phone that was about to get shut off due to non-payment. Other overdue expenses I won’t get into at this point loomed, causing no end to the fear that I was experiencing. Stress does NOT help heal a cancer patient. If I could not quickly find a new place to live which I could afford, there could be no chemotherapy treatment and no place for me to recover.

SOME POSSIBLE HOPE
There was one possible ace in the hole, however. A decade and a half ago, I became involved with Straczynski’s B5 efforts. I became the volunteer online liason between composer Christopher Franke and the B5 fans on Usenet. (Christopher later thanked me by including my name in some of the CD soundtrack liner notes.) That’s how I joined the B5 community in the first place.

The first year the show began, B5 fans were clamoring for something, anything they could buy that was related to the show.

The B5 fans – in the meanwhile – had adopted the <*> symbol for themselves as a sort of “secret handshake” online to identify themselves to each other. I realized that since this symbol was created by fans of the show, I could be legally free to create something special that did not violate any kind of official copyright. I had access to some rather sophisticated metalworking equipment at that time. Thus the Jumpgate Pins were born. (With the help of Troy Rutter, I was to later learn that certain VIP legal eagles behind the show were willing to be kind to my efforts.) J. Michael Straczynski himself approved the first Pin and said “Go with Kosh.”

The Pins sold pretty well for about a year. Then sales dropped off as merchandise companies discovered the B5 cash-cow and came out with the usual t-shirts, action figures, etc. I let my Jumpgate Pin website slide into semi-oblivion and just kind of let it go. However there were still were quite a few Pins left.

Fast forward back to December of 2009. There I was, about to be evicted, scared, needing to find a new place to live while still in chemotherapy. I could not use my geek skills to be a computer troubleshooter worker because one of the effects of chemo is “chemo brain” – which is subtle damage to the neurons which screw up one’s higher-level concentration.

I looked at the box of Pins that had moved with me to Nevada. I wondered: is there any chance that I could still sell any of these? Should I even try?

“Go with Kosh” I remembered.

So I decided to go on faith.

With the practical help of a kind friend, the most relevant parts of this www.jumpgatepins.com website were rebuilt. Now I had to find a way to at least sell a few of these Pins. If I could get at least a few sales, maybe I could get enough funds to cover moving costs and pay the phone bill. Maybe I could do Ebay as part of the deal, I realized. I consider Ebay as a necessary evil… if I HAVE to sell on Ebay, I will, but I really prefer not to if at all possible.

Despite not knowing how I was going to pay for it, I started a search for a new place to live. I found something affordable in a better neighborhood that seemed positive. Then I hoped for the best; hoped for something that would help me get there.

A HOLIDAY MIRACLE…
Linda B., a good friend of the online SF fandom community, decided to send an alert about my situation to a few of her best online contacts. On December 16, she sent out a call for help on my behalf, letting folks know that the Pins were available and that purchasing one would help change the life of a Stage 4 breast cancer patient for the better.

Overnight, her alert went viral. It spread through emails, through blogs, through Facebook, via LiveJournal and on through many members of the SF fandom community. When I woke up on the 17th, I was astonished to see a mini-flood of orders for my Pins! With my very limited amount of energy per day, it took a whole week to ship all the Pins that were ordered. The last one went out the day before Christmas Eve. Fortunately, all you classy people out there who had ordered Pins understood and did not complain at all about the inevitable “late for Christmas” factor. (Thank you all for that.)

…BECAUSE OF YOU. :)

I am grateful to all of you who were part of the effort in passing on the news when it was needed. To those who are reading this news for the first time, be proud that you are part of a fantastic online community who changed the life of a stage 4 breast cancer patient for the better.

I am now living in a rented room in a beautiful house. I have discovered that all of my new housemates are incredibly compassionate people who are gentle and want to help me recover from cancer. Better yet, my new landlady is a medical professional who can understand my situation. I do not have to be afraid in my own home anymore. I get to live within close view of a beautiful desert mountain that looks amazing during a Nevada sunset.

At my most recent oncology visit on January 19, I learned that the chemotherapy had been effective in starting to shrink the tumor. Before you guys came through for me I was afraid that I would have to delay my chemotherapy for an indefinite time because I did not have the funds to move to a safe place for a good recovery. Because of the SF online community came through during a very difficult time, My oncologist is reducing the amount of medicine she is giving me in chemotherapy because I am starting to do so well. I think the reduction of stress with the new place and the compassionate new housemates has a lot to do with that. :)

So onwards and upwards. By passing on the word about the Pins and my cancer situation, the online SF fandom community created the bridge for me to have a new chance at health and recovery. I am deeply grateful.

Now that the worst is over, I still have a recovery road ahead of me, so a little more help could make quite a difference in building my own new life. Maybe I could have my old dream of being a computer geek back again.

(Update from august 2010 – turns out the chemo fatigue keeps me from doing any geek work… see my Fatigue, Chemo and Determination” blog post.)

THANK YOU, SF FANDOM!
Thank you again for both the moral support and the Pin sales. I think the SF community can be proud of it’s caring for one of their own in need. Please forward this note to anyone you know who might find it inspiring. :-)

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