Monday, July 15, 2013

Busy Living

My friend said I should throw this up here.

"Get busy living, or get busy dying." -Shawshank Redemption

Thursday, June 27, 2013

Celebrate Good Times, Come On!

Last Saturday I ran my first 5k at Color Me Rad. Well to be specific, I ran about half and walked the rest, but still.

Then on Wednesday, Prop 8 and DOMA were ruled unconstitutional by the United States Supreme Court.

And I'm still reeling from my recent news about my Aspergillosis.

And I worked the red carpet at The Daytime Emmys again this year.

I also wrapped on a movie on Friday and started a new one on Sunday.

Life is pretty great right now.

Wednesday, June 12, 2013

Is this real life?

On Monday, I had a colonoscopy, some more scans, another blood panel, and a bone marrow aspiration. I'd never had a BMA before and was pleasantly surprised that it was less of an ordeal than most people make it out to be and I conclude that I'd rather have one of those than a teeth cleaning.

They said I'd maybe hear back that afternoon or the next day, and I didn't. Then they called me at 7 am  this morning (seriously?) to tell me the results. My Mama texted me the day of the tests to wish  me 5 am. Remind me to put my phone on silent tomorrow, will ya?

Anyway, turns out, there is no Aspergillus in my blood. Let me repeat that. There is NO Aspergillus IN MY BLOOD. One more time for effect: THERE IS NO ASPERGILLUS IN MY BLOOD!

There is also not any Aspergillus in my GI tract or my lungs, which I kind of suspected, since I hardly ever throw up or poo for hours anymore and I've been exercising without coughing up an octopus. And my white blood count is normal, which doesn't explain why I got the flu, but you can't win them all. And my intestinal flora is replenished, which again goes back to no rapid exits from either end.

There is still Aspergillus in my marrow, but it didn't actively show up anywhere else. We weren't really sure it would happen so soon, but the plan for the past two years has been to make my Aspergillosis go dormant. It looks like it is actually happening and I'll be able to continue my treatment as it is right now.

My life is INSANELY busy this week, so I don't have proper time to write about how I feel about this, or really even think about how I feel about this, so I'll have to revisit it soon, however, I will end with this: HOLY FUCKING SHIT!

"We are here to laugh at the odds and live our lives so well that Death will tremble to take us." -Charles Bukowski

Thursday, June 6, 2013

Not this again!

So I FINALLY just heard back about the results from my health tests last month and all they said was that they want to run more. Fantastic!

Here we go, again...

Thursday, May 30, 2013

3 Years

On Memorial Day in 2010, I was sitting on a couch at a barbecue, telling my friends about this crazy illness I'd just been diagnosed with and how I was meeting with a nutritionist the following week, who had told me not to eat any carbs, dairy, meat, or sugar until I saw her. As someone who lived on pie and BBQ, I found this cruel and unusable punishment for someone who was shitting blood and bleeding from their eyeballs. Hadn't I been through enough? That day, I ate a burger and some chocolate cream pie and that night I vomited until the sun came up. That was the last time I ate red meat or the real version of my favorite food.

I wish I could say that giving up pie was the hardest part of this journey, but in fact, it was one of the easiest. I have spent days wishing I would die because I was in so much physical pain that my eyelashes hurt, and nights scared to fall asleep because I wasn't sure that I would wake up in the morning. I've been poked, and stitched, and beaten to a pulp by doctors, hematologists, and physical torturists. I've had fluid in my lungs, and failing kidneys, and a foot that just wouldn't work. I had swelling in my brain, an infection in my jaw, and lesions that just wouldn't heal. I've had more procedures and surgeries than I can count. All of this was awful, and terrifying, and lonely.

Pie was the least of my problems, and yet it, and other food, was what I focused on, in the beginning. In the early days of this blog, I talked more about what I was eating, or not eating, or wished I was eating, than I did about about my illness. I focused on my diet because it was something related to my illness, but outside of myself. It was something I could control (to an extent). I could choose whether I ate broccoli or green beans, I could pick between almond milk (I don't like it) or rice milk, I decided how I was going to cook my eggs. I've never been very good at giving up control or doing what I was ordered to do, but after my diagnosis, I was left with very little choice; do what we tell you to do, or you will die. So I did, well mostly, and I didn't.

I never understood when people said that the terrible things that happened to them turned out to be the best, until it happened to me. I'm not even allowed to drink Kool-Aid, but if I could, I'd be chugging it. Everything I've been through for the past three years has made me a better person. Being on the other side of it, looking back, I see all that I have learned and overcome, and I am thankful. They say "you have to go there to come back." Well I've been there, I've set up camp there, I saw things there that changed me, and you bet your ass that I'm back.

I'm living a life I'm proud of, a life I never expected, a life that was created out of tough breaks, taking chances, happy accidents, hard work, and blessings.

I've said it before, and I'll say it again, I don't think all things happen for a reason, but I think reason can come from every happening. I think it's up to us to find the lesson in every struggle. I truly believe that pain is necessary for growth, and sometimes we focus so much on the pain, that we miss the lesson.

The biggest things I have learned from my journey with Aspergillosis are:

Find the humor in EVERYTHING.

A large part of the last three years has sucked, especially the first two years, and I learned pretty quickly that moping about it not only didn't change it, but actually made it worse, and made people not want to be around me. I had a choice to laugh or cry, so I laughed my ass off and encouraged others to do the same. I just threw up all over my car? That's hilarious! I just face planted for the 5th time today? That deserves a belly laugh! Lo and behold, the laughing made it bearable.

"If you’re going to be able to look back on something and laugh about it, you might as well laugh about it now." – Marie Osmond

Have faith that things will work out, but don't sit around waiting for them to.

This anecdote will explain what I'm getting at. I choose to trust that whatever lies around the bend is what will be and what should be, but I don't wait around for it to come to me; I continue on my journey and meet it face to face. If along the way, another path presents itself, that I feel is a better option, or someone comes running around the bend telling me to run, or I stumble on something useful, I take those as signs, and accept whatever knowledge they offer. So far, I've made it around every curve.

"Keep on going and the chances are you will stumble on something, perhaps when you are least expecting it. I have never heard of anyone stumbling on something sitting down." -Charles F. Kettering

Surround yourself with good people.

I've had the luxury, these past few years, of seeing peoples' true colors. If you want to see what people are made of, tell them you have a horrific disease, and then wait to see who sticks around. The results are often surprising. There are people I was close to before who I haven't spoken to in years and there were people I hardly knew who came out of the woodwork.

These days, I only keep ties to people who add to my life and I let go of the ones who suck me dry. As I've figured out, life is so damn short, but can feel like ages if you're surrounded by the wrong people. We have a choice about who we allow in our lives and these days I keep company with incredible, inspiring, loving people.

Question everything, and if your heart doesn't agree with it, don't do it.

Early on, my doctors wanted to admit me to the hospital for treatment, and I refused. I didn't tell a lot of people about that, until much later, because I knew what their opinions would be, however I was resolved in mine.

Having worked in a hospital, I've seen patients stuck in drab rooms for months or years, and watched many of them die, and I knew that it was just not an option for me. I still firmly believe that if I had checked myself into the hospital, that I would have never left. I absolutely was not willing to give up my life. If I was going to lose it, it would have to be taken from my cold, dead hand.

Now, there were days that I was at the hospital from six in the morning until ten at night, but I am proud to say, that I never, not once, slept there.

There is a little voice inside you. Maybe it's your soul, maybe it's your Higher Power, maybe it's your conscience, I can't be sure, but it whispers to you. Sometimes you don't like what it has to say, but if you listen, it will sing to you and then you'll know just what you should do.

“Re-examine all you have been told...
Dismiss what insults your Soul.” - Walt Whitman

Let go.

This can apply to all of the above, in some way. Let go and laugh. Let go and let God (or the Universe, or whatever you believe in). Let go of toxic people and situations. Let go of what you know isn't right for you.

It's also good to let go of trying to control everything because you can't. And it's great to let go of your ego, which I had to have smacked out of me- if I'd let go sooner, it would have been less painful.

Let go of the pain, regret, and the past. They are behind you, and if you keep reaching back and flinging them in front of yourself, you're just going to keep tripping on them. I was shocked to discover that once I let go of all the garbage that the space it left was filled with more light and love and life than I knew existed. Trust me when I say that if you let it go, you will be filled with more things of substance than what you gave up.

When all else fails, sing Showtunes!

By the end of my iv and blood treatments, my healthcare team knew to have a device ready for me with some sort of musical queued. Sometimes that meant Disney movies, sometimes it was Broadway shows, sometimes it was box office hits- we watched them all. Most of the time we sang along, and sometimes we just listened, but they always made the time go by more easily. Music makes everything better and even in the worst of times, there is always a song that describes how your're feeling, or that can cheer you up- if you let it. My go-to is Michael Jackson's Will You Be There (from Free Willy)!

"Life is a shipwreck, but we must not forget to sing in the lifeboats." -Voltaire

It's been an incredible journey these last three years. If I could live through 2011 and 2012, I think I can do anything. So far, 2013 has been really good to me, proving that if you just hold on, things really do get better. During the worst of it, in the blackest, darkest moments, I kept my sights on the light at the end of the tunnel, and now I'm standing in the sun and things are going well. So whatever you're going through, and we're all dealing with something, know that you are strong enough to survive it and it won't always be like this. On that same breath, the good things won't always "be like this," either, so cherish them, tuck them in the corner of your mind so you can revisit them when things are tough. Make a mental playlist of what makes your heart sing and replay it when your heart is heavy.

That brings us to today, and an update. I had some blood work and scans done on Friday, to see where my health is since leaving The Bay back in November. The main thing they are looking for is how things are going with maintaining my current health, since I haven't been undergoing any aggressive treatment or blood filtering, just taking oral anti-fungals and monitoring my diet.  If my levels have stayed the same, it is possible that I can go on, as I have been the last six months, for an extended period of time. What will be, will be, and no matter what the outcome, I'll keep singing.

As always, thanks for coming along on this journey. What I said after the first year still very much applies. I can't wait to see what's waiting around the bend.

I made it through this entire post and was about to publish it when I realize that I could throw in a Pocahontas reference!

"To laugh often and love much… to appreciate beauty, to find the best in others, to give one’s self… this is to have succeeded." -Ralph Waldo Emerson

Thursday, May 23, 2013


Last month, my friend and I signed up for a color run, to take place next month, called Color Me Rad. The rad people at the run saw my post about it and sent me some free swag, telling me they were inspired by my story.

How rad is that?! Check it out! Thanks, Color Me Rad!

I've been trying to prepare for the run, seeing that the only physical activity I did for the last few years was Physical Torture (Therapy) and that ended over 6 months ago. I recently went hiking with some friends and landed in the hospital. Shocking, right? One day I'll learn... Probably not, but I'll keep saying it, anyway.

A friend of mine has been telling me about this great climbing spot and I've been dying to go, so we did. Only he didn't tell me what getting there entailed, and I didn't think to ask.

Idealistic, right?
I mean, look at this place; it's amazing! And it'd been a while since I hung out around a hospital, anyway- I was due for a visit.

To give you an idea of what I got myself into...

Steep hills
*Blogger is being difficult and keeps re-sizing the section below. 

In my defense, aside from the fact that I still continue to think that I am capable of doing the same degree of things I did before I got sick, our other friend was also unprepared for our trek. So there!

The hilly hike wasn't so bad. Neither was hopping across a stream on slippery, wobbly, rocks. Our climbing was moderate and I paced myself. The real clincher, and really, to be honest, my favorite thing about this spot, was that you have to climb along a rock wall, around a body of water, and make it across a six foot gap, to get to the climbing area. At the end of the day, when we were ready to head back out, and it came time to make it back across the gap, I was pumped (that's climber speak for exhausted and weak). I realized when I was half-way across, that I'd forgotten to stretch. Rookie mistake. By that point, I just powered through it. The hike back up the hill to our cars felt like Everest.

I stretched when I got home, but it's apparent now that I waited much too long. Oh, and that I overdid it. Hindsight is 20/20!

The next day my ankle was swollen and my thigh was tight, so I iced/heated it all day. The second day after, I couldn't bend my knee, so I stayed in bed with it elevated. The 3rd day after, my toes looked like sausages and my thigh was rock hard. That's when I decided to ask my Mama what she thought.

Cue the blood-clot scare. If I had a dollar for every time it's looked like I had a blood-clot, I'd totally have two dollars! Remember this?

Don't worry, it wasn't a blood clot, it was just my leg being pissed at me. They released my muscles, gave me some meds, and sent me home.

Long story short, I'm going to be smarter this time and work up to the Color Run. My rad swag will be great motivation to do so and I can't wait to show off my tee and bottle around the neighborhood.

And of course, I'll be sure to stretch.

*I literally changed it a dozen times, in various ways, and it won't stop doing it. I'm going to stop trying now, or I really will give myself a blood-clot.

Tuesday, May 14, 2013

McKinze's Crusade

This is McKinze. She is a little girl with Leukemia, which led to pneumonia, which led to Aspergillosis and she is fighting for her life.

Healthy McKinze before
McKinze's Aspergillus infection

Her family is searching for an oncologist familiar with Aspergillosis to treat her and I really hope they find one in time.

Here are links to McKinze's sites:
Twitter: McKinzesCrusade

I can't fathom her having to go through what I went through with Aspergillosis, AND she also has pneumonia and Leukemia. This terrible, aggressive disease needs more awareness so we can prevent kids like McKinze getting, and possibly dying from it.

Tuesday, April 16, 2013

Run For Your Life

I never thought I'd say this, but I'm running a 5K. Mostly, just because I can. And what better one to do than THIS?

I've been wanting to do a fun run for a while now. I've mentioned it to a few people, but have never acted on it. I'm working on running and am getting much better at it. Lately I've been looking up runs and came across Color Me Rad last week. Then today a friend randomly mentioned that we should do it and I said "Okay, let's do it!" So we are.

And no, I don't think it's insensitive after what happened in Boston yesterday. In fact, I think it's the perfect timing. I will be running for every single person who was affected by that tragedy. I will run it for eight-year-old Martin Richard of Dorchester. I will run it for the children of Sandy Hook. I will run it for every person whose life has been prematurely snuffed out. We owe it to them to live our lives fully and to not cower in fear- you can't let the darkness win.

Just like I still went to see Batman in the theater after Aurora, like I had planned (you can read my thoughts from then here- they still apply). And just like I still took kids out in public after Newton. And how we still went to school after Columbine, and to church after Wedgwood. Life doesn't stand still when bad things happen. Should we remember? Of course. Should we try to make sure things like that don't happen again? Absolutely. Should we live in fear, or react in anger? Hell no.

A terrible tragedy happened yesterday in Boston. I feel that I've been saying that a lot lately... "A terrible tragedy happened in (blank)." We have been reminded so often lately how fragile life is and how with one breath, it can change forever. Things like this shake us to the core. They make us question humanity. They bring up hard issues.

Don't worry, I'm not going to get political right now. I don't think it's the time to do so, regardless of how I feel on many issues. I'm not going to focus on what is wrong, or bad, or ugly about this situation or the world we live in. This isn't the time to blame the economy, or education, or gun control, religion, or lack thereof. In this moment, that won't do a damn thing. Instead, I am going to take a page out of Mister Rogers' book.

Fred Rogers, of 'Mister Rogers' Neighborhood' fame once said, "When I was a boy and I would see scary things in the news, my mother would say to me, 'Look for the helpers. You will always find people who are helping.'" - Fred Rogers

Rather than send hatred to those to who harm, I'm going to be a helper. When Carlos Arredondo lost his son to war, he started attending races to hand out American flags. Rather than become bitter from his experience, he used it to offer encouragement to others. Carlos was in Boston on Monday. He saved Jeff Bauman's life, when Jeff lost his legs in the blast and was bleeding out. When tragedy strikes, look for the helpers. When all hope is lost, look for the good. And if you can't find any, create it.

My Mama always tells me "leave a place better than you found it." None of us know when we're going to leave this place, so why waste a second of our time here spreading one iota of bad energy? I'm choosing to cling to the good. I'm not going to be angry, or lose hope, or stop trusting other people. I'm not going to hide away in fear of what bad may fell me. I'm going to spread joy, and laughter, and love, and light, every chance I can. I'm not going to run from life, I'm going to run for it.

"Darkness cannot drive out darkness; only light can do that. Hate cannot drive out hate; only love can do that." -Martin Luther King, Jr.

Thursday, March 28, 2013

Flashback: Dear 'Roids

I found an old draft from when I was on steroids that never got posted, so here's a Throwback Thursday.

Dear Medrol-

I want to thank you for making my hair darker, thicker and fuller. And not just on my head, either. My once blonde arm hair is now brown. My leg hair is black and wirey and don't get me started on my armpits. I also now have a happy trail, chest hair, beard, and a unibrow. I'm thinking of moving to France.

I've lost a lot of the muscle mass in my legs and arms, but my lungs are stronger than they've been in quite some time. Who needs physical strength when you can breathe without feeling like you're sucking through a straw and your lungs are comprised of taffy?

With you I could run and jump. You caused me to leap for joy.Well, you made me feel like I could. Now that you're gone, I don't see much value in jumping, because the landing is always devastating. You made me crazy!

I hated you at first and then I grew to appreciate you. Now you're gone and I'm left here to clean up the mess you left. It's like we're in the middle of a messy divorce, and you got the cars, house, boat, and money, while I'm left with the trailer that always smells of fish guts and the truck that can't go faster than 55 without shaking violently and smoking.

Well I have news for you, I can breathe easy now. I don't lose sleep over you anymore. I'm healing.

And I also met a really great waxer.

I won't come crawling back,

Smooth In San Francisco

Tuesday, March 5, 2013

Happy Birthday Addy G!

To my niece, Addy G! 

A year ago you rocked by world. No literally, the morning you were born, an earthquake originated under my neighborhood to announce your arrival. Not everyone can claim they arrived with a Birthquake, but you have that distinct honor. And you have lived up to that honor, our "Little Bull (In The China Shop)," as your Mommy likes to call you, or "Scrumple," as Geepaw calls you (because you leave a debris field in your wake). You are a force to be reckoned with.

You may have gotten your rhythm from your Daddy's side, but you got your coordination from your Mommy's. I'm eager to see how that paradox plays out for you. I see Break Dancing in your future- as in, I see you dancing and breaking things. Or limbs. Probably both.

You are ridiculous, and always on the go, and hilarious (I don't know where you got that...). You are stubborn, and opinionated, and too smart for your own good (I don't know where you got that, either). You hate going to sleep because you think you are going to miss something ( I may know a thing or two about that...), but, rest up while you can, little one, for many adventures await you!

You and I are going to cause a lot of trouble together, and butt heads, and see whose eyebrow can raise the highest. I'm going to teach you things, and spoil you, and put you in your place. 

I have many wishes for you, far too many to name, but here are a few.

I wish you enough frustration that you learn patience, but not so much of it that you give up.

I wish you enough disappointment that you learn learn hard work, but not so much that it breaks your spirit.

I wish you enough stumbles that you learn how to pick yourself up, but not so many that you crumple.

I wish you such joy that your heart is full, but no so much that you are unappreciative.

I wish you ample opportunities to achieve your dreams, but not so many that you become complacent.

I wish you laughter to balance out your tears, and faith to battle your fears, and peaches for every pit.

I wish you roses to stop and smell, and mountains to climb, and barriers to break through.

I wish you friends who you can count on, and partners you can trust, and faith in something bigger than yourself.

I wish you strength for the journey, comfort when your path diverts from course, and peace with wherever the road may lead.

I wish you compassion, love, and empathy, both for others and for yourself.

I wish you resourcefulness, street savvy, and book smarts- with them you can accomplish anything.

I wish you silver linings, and second chances, and gratitude- they will bring you hope and happiness.

I wish many things for you, Addy G, but most of all, I wish you as much glee and love as you bring to me.

Happy Birthday, Adelynn Grace. May you embrace life with the same eager hunger that you showed your first cake.

Today is your day. 
You're off to Great Places! 
You're off and away!” 
- Dr. Seuss, Oh, the Places You'll Go!

Monday, March 4, 2013

What a wild ride

My gosh, so much has happened this year! It's a good thing I'm able to power walk (and working on running) so that I can keep up with myself! My Mama says that if it weren't for my Facebook check-ins she would never know where I am. Half the time I don't even know!

On Wednesday  she gets to come along with me on my latest adventure. Back in November, my Dad and I drove from California to Texas so I could take a breather for a few months. Now, I'm refreshed and recharged and ready to roll, so I'm headed back to California. After living in San Francisco for five years, this time I'm setting my sights on Los Angeles.

I never in a million years thought I would live in LA, but "never say never!"

I want to say a huge thank you to everyone who has helped me the last six months to get my health and finances in check. Through donations I was able to pay off my medical bills that were keeping me from leaving San Francisco. With the help of parents and friends, I was able to lay low for a few months and get some much needed rest. Then some opportunities came up, many from left field, and I am ready to get back in the game!

I am healthier and happier than I have been in a very long time. The past three years have been a challenge and a blessing. I can't say enough how much it means to me that I have been surrounded by an amazing support system and I know that I could not have done it without the amazing people who bless me with their presence in my life.

Now that I'm back on my feet I only hope that I can repay each of you for what you have given me. If any of you need anything, please ask and I will do everything I can to show you the kindness you have shown me. And I have a stack of postcards to send Y'all, just as soon as I slow down enough to write on them!

Los Angeles, get ready!

“Welcome, O life! I go to encounter for the millionth time the reality of experience and to forge in the smithy of my soul the uncreated conscience of my race.” - James Joyce, A Portrait of the Artist as a Young Man

Tuesday, February 5, 2013

And I would walk 500 miles

...and I would walk 500 more.

Today I walked over six miles through the streets of Los Angeles. A year ago I couldn't even take six STEPS and now look at me go!

I am so happy with how far I've come, and excited to see what else I can do.

Monday, January 7, 2013

I won the lottery!

*HUGE news in this blog!*

I started my New Year off right. Sipping apple juice in my pj's in front of a fire and watching a Portlandia marathon with my parents. We think we fancy, huh?

Ma wanted to make me "champagne" but what we thought was sparkling water turned out to be just spring water, so I enjoyed my watered down apple juice and reminisced over Baptist Sunday School snacks from childhood...

I was fighting a winter cold (which felt like swallowing golf balls), but actually, it was one of the best starts to a new year I've ever had. I was cozy and relaxed while surrounded by laughter and love. Then there's the added bonus of no crowds, or parking, or freezing weather, or traffic, or doing my hair. Winning.

Cutting to the chase, I mentioned in my last two blogs that I had really great news to share. So here we go...

My Candida is normal, my intestinal flora is rebuilding, and most importantly, my Aspergillus is dying or dead, with no new growth for the past six months. This is HUGE news. I'm getting better! My health is the best it's been over the course of this entire journey that started back in February 2010.

I knew this news back in October/November, but I didn't say anything to anyone. It just seemed to be way too good to be true and I didn't want to jinx it until I was sure that it would stick. There have been so many false starts and setbacks in my recovery that I couldn't bear to get my hopes up just to endure another letdown.

I was also very run down and exhausted during that time and I had just lost the two people who would have been my very first calls with the good news. I escaped from reality, sowed some wild oats for a few weeks, then hibernated for a few more. In hindsight, I think I was in shock.

I fought so hard for this, for three long years, and there were times I never thought this day would come. When it finally did come, I didn't know what to do with it, so I did nothing.

Then I used it as the best Christmas surprise EVER. Forget wedding proposals and pregnancy announcements, people do those all the time. Amateurs. I have them all beat! I kept this news from my family for two months and then sprang it on them Christmas afternoon (because we took FOR.EVER. to get to my sis's house to open presents). And they all cried. I win!

All joking aside, I did win. I hit the jackpot. The paperwork in my chart now reads "Our findings indicate that the condition of Aspergillosis is responding well to current treatments and does not currently pose a life-threatening risk to this patient." And that is worth all the money in the world.

I think 2013 is going to be my best year, yet! Cheers to whatever it has in store for me!

"Above all, do not lose your desire to walk. Every day I walk myself into a state of well-being and walk away from every illness. I have walked into my best thoughts." -Soren Kierkgaard

*Disclaimer* This does NOT mean that I am healed. It does NOT mean that I can eat whatever I want.  It DOES mean that I am not actively dying. Please field your responses and questions according to this, it will save us both some grief. Thank you!

Friday, January 4, 2013

Lucky 13

I just noticed that this blog has been read 13,013 times. Thirteen is my lucky number, but more than that I am lucky, honored, and thankful that people have allowed me to share my life and my experience with them that many times. Thank you for coming along on this journey with me! I think 2013 is going to be incredible.

Earlier in the week, I promised that I would share some really great news in 2013, and being a fan of Soap Operas and "Cliffhanger Fridays," I'm going to tease and say that the news made my immediate family ugly cry. Tune in Monday to find out why!