2015

Some numbers...

30: That's how old I'm turning this year.
4.5: That's how many years since my diagnosis.
21,000: That's how many times this blog has been read (if you include the hits to the original page)
Zero: That's how many times I visited the hospital last year.
Zero: That's how much Aspergillosis is in my blood, marrow, or spinal fluid.
A trillion: That's what I'm one in.
Twenty Fifteen: Never thought I'd see it.

Never imagined I'd be rounding the corner on Thirty. Never, in a million years. And here I am. Against all odds.

And I'm healthy. Last year I had a few colds, stomach bugs, headaches, and ear infections, but nothing to write home about. I don't think I've been that healthy since I was probably 15.

And I'm happy. In the last year, I've been emotionally, mentally, spiritually more happy than I've ever been. And I'm doing things that make me happy and trying to surround myself with people that make me happy. And trying really hard to be a source of happiness for others.

And I'm healing. I can jump and jog and breathe. I don't physically hurt as much, anymore. And I'm letting go of anything that tied me down, whether it's people, or situations, or the past.

I'm free. For the first time ever, I'm actually free.

2015, I've got your number. It's going to be a great year!

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

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.

Wheel in, Walk Out. So long, 2012!

 *this is like one of those "look back at the year" montages, click the links for glimpses back at posts from this year.

This was an eventful year and I definitely got my money's worth out of it. After 2011, I didn't think it was possible to cram so much living into another year, but then I went and proved myself wrong.

I started this year in a wheelchair, and I wheeled and crutched and caned my way through, one step and one day at a time. There were road blocks along the way, but there were also some bridges and some really great scenery. I am thankful that I am walking out of 2012 better off than when I wheeled into it.

There were triumphs, whether they were small ones like being able to wear two shoes, or huge ones like learning to ride a bike or finally being able to walk unassisted after two long years of pain and tears and hard work. There were frustrations like filling prescriptions and there was anger, like when I found out a clinical trial damaged my kidneys. There were loved ones who died or walked out of my life and there were new babies and new endings. With every goodbye came a new hello, and I grew and learned from each one.

There was a whole lot of cooking, some of it good, some of it bad, and some of it that I can't eat. There were changes and silver linings, there was hope. There were milestones and adventures, infections and accomplishments, there were life lessons.

Some days I soared and others I needed to bust a bunch of eggs on a pier in the middle of the night. I raised money to benefit lung cancer research by learning yoga and I asked for help when I needed it. There was joy and sorrow and laughter and tears. There was life and love and loss joined with renewal,  risks, and gains.

Through it all, I was surrounded by people who cheered me on, picked me up, and lent me their light when mine went dim. I have been blessed in my life, but never as much as I have been by the people in it. If you are reading this, I am thankful for you. My loved ones are my greatest gift.

These are my highlights from the year. (click to enlarge)

2012, you were difficult and wonderful and enlightening and exhausting. Do me a favor, will ya? Tell 2013 to be gentle, please.

"Be always at war with your vices, at peace with your neighbors, and let each new year find you a better man." - Benjamin Franklin

Oh and also, I have some really great news, but I'm not going to share it until next year...

What A Difference A Year Makes

A year ago, I was on bedrest, fighting a raging infection in my jaw. A month ago, I was at The Daytime Emmys, talking to Susan Lucci.

A year ago, my foot was a crumpled, useless mess. Today I walked barefoot, without assistance, across a room.

A year ago, I was having tubes stuck down my throat, and up my ass, and in my veins. Today, I can go up to a month without having anything stuck inside my body.

A year ago, I was having my jaw sawed apart, and my mouth rearranged and put back together. Today, I can chew on both sides of my mouth.

A year ago, getting to eat butter was the "best" thing I had going for me. Today, I can eat so many more things!

A year ago, I couldn't go longer than a week without throwing up. Today (I'm probably jinxing myself), I haven't vomed in over a month. *Knock on wood*

A year ago, I was struggling to decide my next course of treatment. Today, well... okay, not everything has changed, but you can't win them all!

Wow, what a difference a year makes. I think it's important for me to look back, to compare what life is like now to what life was like then. I still have a ways to go, but I sure have come a long way.

Dear 2011

*Click the links throughout for relevant past posts*

Dear 2011,

Wow, you're gone. You're really, actually gone. And I'm still here! Phew.

2011, we had quite the battle of wills, this year, you and I. There were knock out, throw down brawls, when I wasn't sure who was going to come out on top. You kicked me in the teeth, literally! And when that wasn't enough, you went for the money shot: a scissor kick to the kidneys. But, that's okay, because bed rest led me to a discovery that helped me through the pain.

After two surgeries, more money than I care to name, a total of more than 5 months time spent in bed, I'm still here, kicking it. Yes, my foot actually works now, so I can literally kick, now.

There was also the robbery, which took with it all the video footage from my childhood and all my pictures from the last 5 years, in addition to the novel I was writing and numerous other works. But, it also brought a new camera, which led to my pictures being published in a magazine. That was an unexpected diamond in the rough.

While I was down, you showed me who my real friends were and brought me new ones. You showed me who I couldn't count on, and more importantly, who I could. You forced me to ask for help and accept it. You made me grow.

You took several beloved people from us, most much too soon. Because of these losses, I allowed myself to grieve in a healthy way, for probably the first time in my life. I wish I hadn't had to do it as many times as you made me, 2011, but I now know how to live through it. My health, and seeing others slip away has made me appreciate and celebrate life, and also to accept and forgive death.

There was the period of steroid-induced-Hulk behavior, where I hated you and then praised you, followed subsequently, by the steroid-withdraw-thirteen-year-old-heartbroken-girl emotional period when I felt let down by you. Both difficult, very different, but equally eye-opening and enlightening experiences, that I started off resenting you for, and now thank you for.

You saw me through moments of feeling sorry for myself and moments of gratitude, only laughing at me minimally for both.

You brought me an abundance of salads and vegetables, and trying duck and buffalo for the first time. You forced me to step out of my comfort zone and try new foods and recipes, many of which, to my surprise, I actually don't hate.

You allowed me trips to Washington DC, where I couldn't eat anything; to Virginia, where my friend showed me a new recipe; to Vegas, where I ate a lot of almonds; to Chicago, where I didn't eat pizza; to NYC, where I also didn't eat pizza; to Philly, where I was robbed of cheese steaks; to LA, where I ate like a king; and to Texas, where I currently am, and about which I will be reporting on soon.

Despite your attempts to thwart me with cancelled flights and hotels, delays, frozen bank accounts, and broken down or wrecked cars, I enjoyed myself. You truly kept me on my toes and challenged my ingenuity more than any other year has, but I can now say I'm continentally street savvy.

You even allowed me to spend an enormous amount of time, every couple of months, with my family. That was a huge blessing to me, so thank you for that gift.

You slipped in Artichoke Fest and Pride to make up for missing The Texas and California State Fairs (they were too much to bear attempting, anyway) and didn't throw too much salt in the wound.

You gave me cause to open up and share my secrets and answer questions, opening up dialogues that wouldn't have otherwise happened.

Even though you forced me to undergo tests, and more tests, and even more tests, and handed me big decisions to make, you gave me hope via new research and promising results. This led to a new treatment option being started, which (*knock on wood*) seems to be working.

You made sure my days were full of foot braces, crutches, canes, scooters, and wheelchairs, too. I guess you thought that could stop me, or at best, slow me down. You thought wrong. You can have your wrench back, now, because as many times as you throw it at me, it won't kink my plans. In fact, I'm doing better than they thought I would, and I don't intend to stop.

2011, I'm thankful for the hardships you've put in my path, dropped on my head, and snuck in my pockets, because they have made me stronger, smarter and softer. I am thankful for the blessings you've laid at my feet, placed in my lap, and whispered in my ear, because they have made me thankful, hopeful, and more giving.

Thank you for being both a challenge and miracle. Thank you for showing me the silver lining in every storm cloud. Thank you for driving home for me that I must always count my blessings and not my burdens.

Oh, and one last thing, tell 2012 I've got my game face on and I'm out for blood.

Lovingly,
Bren


This year, I resolve to:
- Continue living like I'm dying
- Be better about updating about my health (I sure hear about it, when I don't!)
- Post more recipes. For serious. (I know I said so last year and only did a handful)