Zellie’s Legacy

It is with great sadness to inform you, that our amazing friend, Zellie Blake, lost her battle with cancer today, September 5, in the early afternoon. An announcement will be made with further information once the arrangements have been sorted out.

She passed away with her boyfriend at her side. Her friends and family were close by. Through everything, she had a sunny attitude. Despite her pain, she kept a smile on her face. As you saw on our previous post,  she held on very tight to make sure her book would be published and shared to the world. Please remember Lightning Spliced. 

Never forget Zellie's voice. Her smile. Her bubbling personality. Her love for Ninja Turtles, writing, voice acting, Nintendo, puppies (especially Blazer!), pillow fights and of course, her friends. Never forget her laugh. While she has passed from this physical life, she will always be in everything around us. 

If you have any questions, please contact me (Madeline) at spiersjph@gmail.com. 

Please please please take a look at our previous post and help us market her book, for this is something she wanted more than anything else.

Pain relief is bizarre

The bears are multiplying!

Alex-the glow in the dark Wish Bear

Chemo-the little white bear that fit in my front hospital gown pocket

The New Zealand Relay for Life Bear and Sweater Bear are unnamed so far as I know………………….=O

Pain relief is bizarre.  With my shoulder site, the painkillers make me feel better but I still have limited range of motion.  Without painkillers, my back feels like I'm hauling the Eiffle Tower–I have trouble getting up, staying up, walking, etc.  The muscles just don't work.  But with painkillers, I can suddenly do anything as if there's nothing actually wrong.  We're getting closer to managing it, taking the oxycotin 3x a day instead of 2 is a HUGE help.  I was worried about finding the balance between pain relief and zombiefication but I was much more of a zombie while in pain than when on painkillers ;p 

Plus it's SO MUCH easier to keep a positive butt-kicking attitude when I feel better (: I went to yoga at Sunshine Mansion and talked to another lady who has had to switch chemo cocktails a few times before finding the one that worked for her so that makes me feel less traumatized by the idea.

My NSFW mantra:

Hilarious beadwork helps ;)  Laughter promotes the creation of cancer-fighting B and T cells….when I opened that package, I definitely had a spike in the little warriors.  Orin made it for me and I can't ever just mention her, I've got to show off her fabulous creations.  All of her art bursts with unbridled passion.

Ohoh and Chrissy sent me this card….

…I've never seen anything like it, turns out the creator also wrote a comic book about her on-going battle with breast cancer.

They say money can't buy happiness but while presents aren't a cure, they really do make me smile from adorable cards to board games ready to provide hours of fun the next time I drag Tina over (:

I know you all would rather see pictures of my new doggie.  Trust me, I would too.  I pine for Blazer!  I can just see him out of the corner of my eye as I go from room to room in the house….  He'll be here Saturdaay, can't wait!!

Two steps forward, one step back onto a nail

'OW' sums up my life right now.  My back has declared war against me.  Not too long ago, we were getting along okay for once.  It's scary how fast my body parts can crash downhill.  Lying down/getting up is excruciating which is really freaking annoying after having my mobility screwed up by my breathing.  It doesn't help that my cough from hell is starting to come back.  In addition to the meaning being terrifying, coughs are like whipping my back with a 2×4.  Plus I've got that arch of pain in my diaphgram that this all started with.  

So, we called up the doctor's office and the nurse practitioner had us come in.  'Well, no wonder you have back pain, the last PET showed there was more cancer there' 'Wait, what??'  Somehow I totally misunderstood my doctor because I thought she said the stuff in my spine and abdomen was gone.  Apparently not, my spine is like my liver–it shrank but there was more of it.  She also said that just because there's new pain doesn't mean it's new cancer, that we need to give the new chemo time to work.  She's delt with this before, I haven't…..but that's a hard concept to wrap my head around.  Why would I feel SO BAD if it wasn't something getting worse?  

She prescribed new pain medicine–long acting oxycotin instead of short-acting oxycodone–why was I taking short-acting stuff at 12 hour intervals?  I don't know :P  I managed yoga with major major accomodations and my massage therapist treated me to a home massage =O  

Unfortunately, a few days have gone by to show me that these pain meds aren't enough or the pain is getting worse.  My pain in the morning was an 8, now it's a 6…..still incredibly uncomfortable.  Daytime pain went from a 6 to a 5 but it goes up to 7 or 8 as I get closer to dose time.

I've been watching through X-files and got to the black cancer and Scully's brain tumor.  btw, when I think of tumors I think of little mushrooms popping up on my organs haha.  Anyway, the show is now not quite the good distraction it was before :P  Plus I really need COMEDY.  I love Scrubs but it's hard to watch for the same reason.  My mom called the doctor's office so hopefully they'll get back to us soon and then we can go see Despicable Me!!

Want to help?

There's a website called Helping Hands which sets up a calendar community so people can volunteer to do things like get groceries, bring kids to activities, etc.  It's an awesome idea but I don't really have any of those responsibilities.  People ask me all the time what they can do to help and I draw a blank so I tried to make up a list.  I'll update it when I think of things and cross stuff off when someone claims it.  I don't really want to make this entire post a sticky but I'll put a link to it at the top of the page so you guys can check back.

A lot of this stuff can be emailed and if not you can get my physical address if you need it:  jenniferlwille-at-yahoo-dot-com

A literary agent - Hey, I can dream, right? ;)

A book light - I wake up at 4am every night, often to scribble notes.   My handwriting is illedgible enough without trying to write in the dark!

A hat rack thingie - I have all these wigs/scarves/etc and no way to store them besides in a big pile ):

Fun night lights - I've got some boring ones in my room and bathroom.  I get nightmares so anything soothing/cheery to wake up to would be nice

TV-watching contraption - I've got a TV.  And a bed.  But no couch or way to make the bed comfy for watchinn the TV T_T

Toys!! - I love toys!  I'm not quite up to nerf right now but desktop toys are great

Lap pad/table for laptop

Physical games/crafts - I get bored staring at screens!  Nothing sharp or too puzzle-oriented for my poor chemo brain to handle

Artwork - Doodle me something, I LOVE to tape cards and art up in the bathroom.

Exercise gift certificates - I need to get 30 min in daily but my staminia has me limited to like, stretch yoga ;p  and I get bored sooo easily.  Need to find a bellydance instructor around here that can give me some major modifications

Yoga matt - a REALLY CUSHY ONE

Recipes - I'm supposed to eat fish at least three times a week.  I HATE FISH.  Helpl D:

Fancy PJs/easy wear - especially if they button/zip.  It can be hard to get into normal clothes but I'm going out on a daily basis for shots so I kinda have to be in public.  Preferably PJs that cover what's left of my boobies decently since I haven't been able to wear bras (first the mediport scars then the shoulder pain)

Photos - of YOU! and especially your pets (:

Food Gift certificates for nice places to eat (Macaroni Grill, Maggiano's, Melting Pot, bellydance places, Sakura, PF Chang's, Mongolian BBQ…etc…etc) - I'm supposed to eat lots of fish/steak/ice cream to bulk up and when my stomach is doing good it's nice to get out and splurge!

Board games - Sometimes my stamina is too low to do much when my friends come to hang out but these are a blast!  

the only games I have are True Science, Star Wars Monopoly (I hate  monopoly!), and a 50 million year old Trivia 

Pursuit box. I now have:  Scrabble, Apples to Apples, Smart Ass, and World of Slaughter.

Travel Pictures/articles - Places you've been, things you want to do…give me ideas to think toward the future! 

Tell me stories - Don't feel bad for telling me you had a bad day, I want to know, I want to be involved

Silly comforts - a heatable aromatherapy pillow, a mini zen garden, a great tea, silly slippers, tasty treats, pretty notebooks

Books - The Hunger Games, Dies the Fire, Stein on Writing, Beautiful Creatures, Street Magic, Storm Front, The Career Novelist, Plot and Structure by James Scott Bell, books on character development, The Girl with the Dragon Tattoo, books on how to write humor, cute animals (especially dogs!), silly bathroom readers, nothing depressing!!!  Err… I know I need to read some Scott Sigler but I think Infection is probably not the best book right now ;p

Survival stories - Only stories with happy continuings, kthx (:

THE Triforce Necklace - http://www.etsy.com/shop/KCandF

Donate - Lots of the research right now is coming from breast cancer money which is GREAT and it does help me some but if you want to go specific, mine is squamous cell carcinoma

Rides - My mom probably gets tired of driving me places, waiting around, driving more places.  I  need to go  somewhere pretty much every day :P

Make me laugh!!!!

PS.  My mom could use a maid, foot massages, and a chef.  My dad would appreciate someone to play xbox with and anything related to Michigan football/basketball, he also likes beer??  He has glasses from Moon River and Dead Guy Ale.

Planning or Pantsing

It's hard to write when I think about a disease so aggressive it springs up in the midst of treatment.  I hate that some of the most shining lights among my friends are going through the same, similar, or worse.  It scares me how fast I went downhill and how fast it could happen again.  I feel like I can't plan ahead.  I always knew I wasn't meant to have kids or a house or whatever else normal people do but I'm still jealous (99% happy for them, of course, but that 1%) that they can plan.  They can get married, have kids, get divorced, get remarried and build a garden.  I knew I wouldn't make a lot of money so I didn't need the house, it didn't matter that I couldn't afford kids.  But I thought my alternative was going to be saving up for hot springs tours of Japan, book tours in Callie's van, and the best dog ever.

I don't really know what direction to go in though.  Pantsing means a day at a time, massages and cookies.  But if I'm going to get published I need to finish some books.  But books involve planning, involve *time* and I don't know how much of that I have.  Aggression doesn't bode well for treatment or for recurrance and I'm only 27, that's like starting the game with 8 points against you.

I need to prioritize.  The dog is most important.  Is that weird?  I didn't think it would be first, I mean I've managed for years without one but if all I have is tomorrow, I want my dog at my side.  I know I should be concerned for my health and infection potential and blah blah blah.  FINE, I'll wear a kevlar bubble if I have to!  My MENTAL health is important too yaknow!

It's midnight.  My chemo today had crack in it!

I don't know what's next.  I guess I do take that a day at a time.  Maybe I'll write tomorrow.  Maybe I won't.  

I've been having trouble the last couple days but I'll get over it.  It's not worth losing a day to being upset about the future and I'm so, so lucky.  I can *walk*….I'm not paralyzed, I'm not in the hospital, I can breathe, I can sing, aside from my shoulder I'm not in pain…..my quality of life is pretty damn good right now.  So right now, I'm happy.  I can't ruin that with worry even if it does mean I give myself short term memory and can't plan anything.

Also, I watched Troop Beverly Hills which is just as hilarious now as it was when I was ten (unlike Grease which I couldn't watch ten minutes of haha)

PS. My white count is low so I have to get HORRIBLE BURNING NEEDLES all week.  But I'm not getting one now.  SO YAY.  

From Luxury to the Future

As crappy as my diagnosis is, I couldn't be in a better position.  I had already given my job notice because I wanted to move back to Fairfax to, ironically, get a better job that would have health insurance :P  Little late for that, eh?  I'm now living with my parents who are well off enough to save me from debt.  My mom was a nurse so not only can she translate doctor babble, but she can fill in the gaps.  Did you know that orange juice helps you process iron better?  She's also a health nut who makes my every meal and snack optimal for what my body currently needs.  My dad handles all the paperwork (and MAN there is a lot of it!) and he's retired so he can drive me anywhere I need to go.  They've got lots of stairs for me to exercise on and a huge backyard to train my puppy-to-be in.  Last but not least, I'm a writer so being confined is more a joy than a problem ;)  I've got everything I need and more.

But eventually I'll get better.  I'll have to find that job.  And the shitty thing about cancer is that it comes back and I won't always be able to retreat to this oasis.  I can't accept any job I find or like now.  I have to be prepared.  I have to somehow find one that will allow me to save and give me insurance.  Somehow find one that won't fire me when I need to take months off for chemo.  Somehow find one in the area because I'm afraid to leave the doctors who know what they're doing.  Somehow find one with no more than an English degree to go on–if I thought going back to school would waste the years I had left before, imagine how pointless it seems now!  Last but not least #2, somehow find a job that I can shift to part-time when I start selling my novels because now it's not safe for me to be a novelist alone.  Unless I become the next Stephanie Meyer but I don't think I'm in any danger of that :P

I guess we all need something to be afraid of.  When I was a kid, I was terrified of cancer and convinced that I had it.  There was a cartoon mole on TV that cautioned kids to do a 'monthly mole check' because new  moles could mean skin cancer.  Kind of a silly thing to aim at kids because as they grow, their bodies develop freckles and yeah, moles…normal moles!   So any time I noticed one I *knew* I had cancer and I would lose sleep and have nightmares but I didn't want to tell anyone because I didn't want to find out that that's what it really was.  Squamous is actually a type of skin cancer :P   Now that I *really* know I have it, I can't be afraid to get diagnosed!  So I worry about the jobs instead ^_~

And because blogs are way better with pictures, here's the dog my mom got me.  She's under the deluded impression that this fulfills my need for a puppy.

His name is Lemon because he smells like lemons.  His belly is a chamois haha  So well trained, he cleans instead of makes messes!

Chemo round 2, out patient this time!

They should have given me benadryl for my mediport surgery.  They said it was umm fenelthamine (I bet I totally made that word up.  I do think it started with 'fen' though) that they used and I was wide awake but man, once the benedryl hits me my muscles go slack and I pass out.  And it HITS.  I was reading a Clicker Training book then BAM, dropping the book, trying to get my mouth to work to ask my mom to lower the chair but I'm not sure that any comprehensible words came out haha.

The chemo is done in a "Chemo Suite" in the hospital and btw, you need a GPS to navigate Inova Fairfax.  None of the elevators connect to the same places so you have to take three different ones in order to get from parking to the 9th floor.  I walked in about 5:45am and felt something familiar.

Oh crap.

Seriously?!

Ladies, you know what I'm talking about.   Yeah.  After skipping 2-3 periods from being sick and having no idea when it would hit, it just figures.

The suite has a bunch of reclining chairs with tables attached and awesome nurses that helped me to the bathroom any time I woke up cause  umm yeah I was way drugged up.  I thought they were going to halve my benadryl dose this time but they didn't.

The chemo took FOR-EV-ER.  Would have been awesome writing time if I wasn't unconscious.  I have an hour of premeds (zofran(?), something like pepto, the benadryl, etc) then I've got four hours of one chemical and three hours of the other.  Umm carboplatin and paclitaxel.   And then prep/cleanup adds up to another hour so I was there from 6am to 1:30pm.  Took some time to have lunch and recover from teh drugz too.

The mediport access was weird.  It was better than a needle in the arm.  Kinda.  Much easier for the nurses than finding a vein…they've got a much bigger target and then they punch it in.  And 'it' looks like a freaking NAIL!  It's HUGE!!!  It hurts but in a different way.

-

So, that was yesterday.  Over the next three days or so I'm supposed to be tired and achey and stuff.  Except that, the last two or three pre-chemo days I felt tired and achey plus I pulled a muscle in both my neck and shoulder and they huuuuuuuuurtttt–the taxel makes my body extra sensitive.  I was a little worried about feeling worse.  But today I feel fine!  Like, cabin fever fine!  I'm not even cramping that bad, just in short minor waves.  I want to take a jog around the neighborhood and hit up the pool at Oak Marr now that my surgery scabs have come off.  But I know as the day wears on I may feel worse so I'm trying to force myself to relax and not overextend.  

But, this is a good sign for me getting a puppy and for enjoying the holiday (:  My nurse told my mom I have a verbal prescription for a puppy and that I better have one by the next time I come in!

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My head scarves order came in!  There was a tie-dye blue one I was really excited about that turned out to be a lot lighter than the picture which doesn't look good on me so that was sad.  I'm much more pleased with my hair fringe :D  It's open on top so it's not too hot or itchy and it's got bands that distribute the weight so it actually feels better after a long day than the scarves–with the tails on those my neck starts aching in some places.

It's the red that I wanted my wig to be but that my mom said it looked fake and outvoted me since she's paying :P  We still haven't compromised on the actual wig yet.  She allowed me to indulge on the fringe though.  I've got some real nice options now and my sexy new glasses came in…I feel like I need to do a photoshoot!

I also got a fabulous package from my friend Alex in New Zealand!  I LOVE the hat and it loves my fringe :D  Look closely….it says Relay for Life!  I always want to participate more in Relay for Life but the whole running….walking thing is a pain.  If I had a dog it wouldn't be so bad (:   I really want to be entertainment for the people working, that's what  we did in high school.  My choir would go out to the track and sing for several hours.  I need to get published already :P  then I could offer the audio version for free/discounted to people participating in the relay and I'd set up a booth where they could load their ipods.

I'm dying to dig into the Skittles he sent–they have blackberry flavor!!  But I'm trying to be gentle to my tummy…it's been doing fine so far but just in case, I've been limiting myself to soup and crackers.

Speaking of Alex, he's a fantastic photographer and just put together a book called Broken Memories: A Memento Mori of Waikumete Cemetery.  He's offering some discounts now in honor of the new release (:

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I'm sooooooooo glad my concentration is getting better!!  Being sick in Savannah SUCKED, the only thing I could do was lay around and watch The Devil Wears Prada or whatever other crap was on TV.  I couldn't even get up and get my brain to choose a DVD, the whole process of putting one in the player was overwhelming.  Treatment is SO AWESOME!!   I can finally catch up on my gaming (:  which of course instead means buy new games hahah.  Hey, it's not my fault… I technically didn't buy it, my dad offered to and I couldn't say no to a free game so now I've got Brutal Legend and I am LOVING it.  I've got it on easy so I'm playing through fast enough that it keeps my dad entertained.  It's got a nice combination of fighting (yes, combos included), driving (sexy hot rod), and strategy (organizing a horde of headbangers).  The only problem is when I fail at map reading and find myself in Lake Hylia when I'm supposed to be at The Killmaster's lair :P

‘Fantastic’ says my doctor

:D  I think that's a pretty good word for an oncologist to use.  I got some double-takes from the other staff too, the nurse was like 'wait, weren't you in a wheelchair last time?!'  My doctor said my lungs sound much better, my bloodwork is better than expected and that I may do even better with chemo this time since I've gotten so much stronger.  My weight went from 111 to 117 in two weeks, thanks Reases ice cream ;)   She said I should go out and celebrate so I'm hoping for delicious hibachi grill in the future!

I'm not bald yet, but my hair's gotten thin enough that I started wearing a scarf.  It's one I'd been wearing around my waist cause the Head Covers order hasn't come in yet.  Actually they called to say one of the products wasn't available in that color anymore so they haven't shipped them out.  It may be a while ;p

I never really thought anything about people wearing head scarves but my mom says when she sees that she thinks, 'Oh, they must be doing chemo.'   So I walk tall with some attitude:  Yeah I've got cancer, yeah I'm bald, that's cause me and my buddy chemo are kicking ass.

My buddy Chemo is pretty cute but watch out for those ninja kicks!

Video blog: Feeling better, whoo!

Every unexplained pain in my body gives me the creepy crawlies but other than that, I wanted to show off (:

Click here for the video because I can't remember how to embed T_T

Back pain, eh?

Sooo the million dollar question is, why have I had back pain while I've been sick?

Because I've been coughing?

Because I can't sleep in positions my back likes?

Because I've got cancer on my spine!

The PET scan showed that my lungs are the primary location (this is good, I don't need any body part to be in worse shape than my lungs) and there's a little bit on my liver, two spots on my spine, and some around my abdomen. So I've got 6 rounds of chemo scheduled with PET scans and blood tests in between. And someone LIED TO ME D: I thought the mediport could be used for everything. No, only if it's "accessed" which they're pretty much only doing for the chemo so I still have to get needles every few weeks ): ): ): ): ):

Dr. Patel didn't talk about stages or predictions but she's very positive and cheerful. She's focused on one step at a time and seeing what progress we make. She said I've done really really well with the chemo so far and that's indicative that I will in the future too. My symptoms have improved (back pain decreased too!), I've had zero nausea and only been a little tired. She said I might get tired longer each time but overall should be doing better. We're both thinking that after round 2 I should be able to get off the oxygen. I'm glad to hear that because I know she was saying between rounds of chemo there's that waiting period where the cells start building up again but so does the cancer so I was worried I'd have to fall back on the oxygen in between.  I'm SOOOO sick of being on the oxygen.  It's weird to sleep with tubes all over and it makes my nose bleed so I'm constantly stuffing vaseline up there.

She said any little decrease in symptoms probably feels drastically better right now even though it's a small increase, just because I've been sick so long but I actually really do feel like I've had a dramatic decrease in symptoms. I mean, my back was CONSTANTLY in pain…all day, all night even with a heating pad and medication. Now I have barely noticeable discomfort.

I've got more appetite now so it's easier to eat, I don't have to force myself so much but I am down to 110 yikes. (113.5 according to my scale at home) I blame the hospital with all their fasting procedures and only giving me three meals a day. It took a week before they called in the dietitian who ordered snacks between meals for me :P So here's hoping that now I'm out I can start gaining. I'm STUFFED with pizza right now.

Oh yeah, I knew that they took my biopsy to a conference. I didn't know it was the national annual oncology conference…….how lucky is that?! It just happened to occur during the time I was in the hospital. Dr. Patel mentioned it because at the conference they discussed the type of cancer I have and how it's becoming more prevalent. It's not genetic although something about my genes may have made me more susceptible to it. They think there's an environmental exposure factor and they're trying to determine what that is. Damn pollution :P

It's still totally bizarre that it would be me…. so terrified of lung cancer that I don't even like being around people who smoke…. I'll breathe through fabric if I'm downwind…. I made a pact with my best friend in elementary school that we would never smoke