Disappointment

About a month ago I was up in New York City for fall break. Some of my class mates, a professor, and I were all attending the AES (Audio Engineering Society) convention. This event happens every year, and it's a blast! For about 3 1/2 days there are seminars given on all aspects of audio and music, and there's a HUGE exhibit floor with the largest selection of microphones, preamps, recording consoles, and audio gear you could imagine. It's a gear head's dream come true.

ASU Music Industry students and alumni in front of a fountain in Central Park 

While we were in the city, a good friend of mine and I got the chance to go to, hands down, the best show I've ever been to. A week before the trip he had come to me and said there were rumors going around on Twitter that Arcade Fire (posing as The Reflekters) was going to be doing a "surprise" show in Brooklyn. He continued to stalk social media sites, and the morning we left for the City he scored our 2 tickets. A part from having that prized piece of paper, you had to be wearing costume or formal attire in order to get into the show. All of these little nuances  about the show continued to come out, and man were we getting pumped!

There were so many great things about that show. We stood in a 4 block long line for close to an hour and a half with other dressed up and costumed concert goers. There were masked men in formal attire, dinosaurs, and an Andy Warhol, just to name a few. two of my favorite high-lights from the show were a surprise stage and an after show dance party. The venue where the show was held was in East Williamsburg, Brooklyn, a real hipster neighborhood. The funny thing about the venue is that it really wasn't a venue at all; it was a warehouse art space. Imagine a large rectangular room with concrete floors, bare walls, and support beams littered throughout the space. When we entered the building we were coming in from one of the shorter ends of the room, the longer two walls on our left and right. Heavy black curtains covered the longer walls with a bar and a merch table set up along the right wall. The stage was directly in front of you as you walked in, parallel with the entrance. The curious thing was where the front of house was located. It wasn't directly out front of the stage but over off to the right facing the longer left wall. After standing for another hour or so three of the band members walked out on the small stage wearing paper mache heads in their own likeness. They began to play and everything sounded terrible; feedback loops were coming from each musician. Next thing I knew my friend was guiding me over to face the left long sided wall. SWOOSH! The curtain fell and there was a massive stage.

The Reflekters show in East Williamsburg.

After their performance the lead singer announced that there would be no encore. Instead of sharing more live music with us they were going to come out in the crowd and have a dance party. A large portion of the audience was upset and disappointed; they started booing. I would estimate that about 3/4 of the crowd left. We stuck around, despite our inability or interest in dancing, to see what was going to happen. It was trippy,man. A pinata came out of no where! It was in the shape of an iPhone and had a Spotify icon featured on what would be the home screen. The lead singer chose people at random to hit the pinata, but once it was cracked nothing came out. I'm still at a loss as to what sort of social statement this was supposed to be making. We stuck around for about another half hour, after which a drum circle began, and we exited shortly there after.

While we were at the show  I got a text from my mom. I'm sure some of you are wondering how it is that I even use a cell phone. Just to clear things up and take this opportunity to inform, I navigate my computer and cell phone with a screen reader. This technology allows me to interact with these devices via my keyboard and different gestures on a touch screen. The screen reader, basically, narrates, audibly, what is going on on my screen. When I'm some where that it's loud, like say a concert with 1800 people, it becomes a little difficult to hear my phone read something to me. Often I keep earbuds with me in order to maintain my own privacy and be able to actually hear my phone, but I'd come to EAst Williamsburg, Brooklyn, with as little as possible. So, I figured  I'd wait until we were out of the show to read and respond to my mom.

My friend and I stood on the platform waiting for the L train some time around 1 AM. We were still in shock that we had been able to participate in such an incredible show! I unlocked my phone and read the message from my mom. She had finally heard from my oncologist about the pet scan I had had taken 3+ weeks earlier. The results were spectacular, and they had informed my mom that I was cancer free. My good friend and I stood in shock on the platform. He gave me a hug, after which I just continued to stand there staring at my phone in disbelief. The next morning I spoke with my mom and she continued to share with me that I wasn't going to have to go through radiation. There were so many giggles shared between my friends who had come to New york with me and I, those "No, stop it, you're kidding," kind of giggles. We couldn't believe it!

Fast forward a week later. I had gone in for my sixth chemo treatment. A good family friend had offered to go with me to treatment, but she was going to have to drop me off and come back a little later because of a previous engagement. I wasn't bothered or concerned, because the routine would be for me to check in, visit with my oncologist and discuss my now spectacular news, and then head back into the treatment centre. It would be no problem going in alone. Right? Wrong.

What my oncologist had to share with me was contradictory to the news my mom had received. Now is the time when, if we were in a movie, the sad, tender, string music would begin to play, or maybe just no music at all for the rest of the scene. My oncologist shared with me that, even though the results from the scan looked marvelous, the mass where my lymph nodes are was still too large. I would need to finish out chemo and then go through a number of rounds of radiation in order to diminish the size of the mass. It was too soon to say that I was "cancer free," because the scan couldn't accurately show weather or not there were still microscopic cancer cells in my body.

The emotions that I've experienced in the last 4 months have covered a large spectrum. Most of them I can't even express in words. It's very interesting to me how they've shifted. Something will trigger a sense of fear and lack of control, I'll become overwhelmed and disoriented, I'll gain some perspective, take a step back and then start crawling, or even taking baby steps, forward. I've shared with several people how amazed I am at my own self. I never would've expected to be in such good spirits like I am right now. None of this is to say that the hard stuff, the stuff that's caused me to lose it, or shut down, or be angry aren't real, because all of these emotions are real. All of what I'm trying to say, what I hope people can begin to understand, is that my only constant is this belief in the intangible... A reliance on something so very much bigger than my emotions. This constant is the Holy Spirit, and man how my perception of endurance has changed.

This past Tuesday I celebrated the completion of my chemo treatment. It's almost been a week and I'm still reminding myself, "Hey, guess what, you're done with chemo!" I'm still discouraged and confused about how my oncologist and his staff could miscommunicate such important and weighted information. I still don't understand why this disappointment had to be a part of my story. But, I'm not going to mull over the "why?" I might never know the "why?". These unanswered questions are a part of life, and they're certainly a part in building and testing faith. Yeah, I could sulk and remain in a pit of unhappiness and anger, but that won't change my circumstances. I am not in control. My Creator has given me a chance to revel in His abilities, and I'm so ecstatic to be able to brag about Him.

The game plan you ask? 17 days of radiation are the next step. Thankfully, the doctors tell me that radiation has fewer side effects. I'll be completing this portion of treatment back home with some of my family, and this I am also grateful for. All of this is also concluding around the same time as me finishing school. I'm not finished finished because I still have that internship to complete before actually walking across a stage and receiving my diploma, but as it stands right now a internship hasn't been secured. I'm sure I'll be able to share more on that later.

I want to leave you with the two pieces of scripture that have helped hold me together for the last 4 months. I hope that whatever it is that is testing your faith right now that these verses may be of some encouragement to you too. 

So do not throw away this confident trust in the Lord. Remember the great reward it brings you!  Patient endurance is what you need now, so that you will continue to do God's will. Then you will  receive all that He has promised

-Hebrews 10:36-36

So be truly glad. There is wonderful joy ahead, even though you have to endure many trials for a little while. These trials will show that your faith is genuine. It is being tested as fire tests and purifies gold--though your faith is far more precious than mere gold. So when your faith remains strong through many trials, it will bring you much praise and glory and honor on the day Jesus Christ is revealed to the whole world.

-1 Peter 1:6-7

Hernando vs. The D Train

This post is sort of a combination of celebratory circumstances. The first being that I got great news from my oncologist this past Thursday and the second being that I might have scored the greatest internship ever. So the latter might be a some what dramatic statement, but, really, I'm in the running for a great opportunity.

First things first, the #kickit campaign is working! Hernando hasn't been completely eliminated, but we're well on our way to kicking his bloody self out! Okay, poor choice of words there, but you catch the sentiment I'm trying to evoke. My oncologist didn't have details for me on what the PET scan from a week ago was showing, but overall things are looking better. Honestly, I'm just beyond thrilled to be getting sleep and not to be itching any more. It's amazing what a full night's rest will do for your body. only 3 more treatments to go.

With regards to the internship, this semester I'm taking a business writing course. We just finished a unit on cover letters and resumeés. Two weeks ago I showed up to class unprepared. I was supposed to have brought in a job/internship posting that I was, hypothetically, going to be applying for in addition to a rough draft of a cover letter. With 3 minutes before the hour, I scrambled to sort through my web browser's bookmarks folder. I found one that I'd saved over a year ago when I was contemplating interning in New York for the summer of 2012. It was one of those internships you dream about getting but you'd probably never actually apply for it. Minus the cover letter, I had half of what my instructor was looking for, and some how she marked me down for bringing the whole assignment!

Now, i'm not suggesting that anyone should neglect their homework or show up to class unprepared (on a regular basis anyways), but some times these lazy spells actually yield great things. After mulling over the requirements and what the internship application was asking for, I actually did it; I applied for the thing! I should add that on that fateful day I was looking at exactly one week to get my act together and have all materials submitted by October 1st. This might be a good time to thank my mom and a number of other people here at school who helped me out in a jam. Thanks guys! It's going to be at least a month before I hear back from this place I'm applying to in New York, so stay tuned.

Music; It's More Than What's For Dinner

This past Thursday I took a sporadic trip to Asheville. Back in June I had started planning to make this trip, so in some ways it wasn't sporadic at all. The largest determining factor about making the trip was how I was going to get there. As you know, July kinda came barging into my sumer with its unexpected news of Hernando (this is the name I've given my Hodgkins. I like to think of the cancerous cells as an evil Spanish man. I haven't ever met a truly evil Spaniard or even a man named Hernando, but I felt the name fit its purpose.), and hence my plans were halted until further notice. The whole reason for my wanting to go to Asheville this past Thursday was to 1) visit my good friend Betty and 2) see the Scottish rock band Frightened Rabbit. 

Thanks to social networking and a news feed, I was able to find a ride.  A friend of mine had posted that she wanted to go to Asheville to see The National, and "did anyone want to car pool with her?" I saw this at 2:20 something. The show started at 8. It takes just under 2 hours to get to Asheville. We left town at 5:30. If only congress could make decisions in the amount of time that all of this transpired.

If you haven't ever visited Asheville, you're missing out. It's similar to Boone in regards to geography and that it's sort of like a college town. It also has hippies like Boone, but the hippies there are a whole other kind of their own. For example, while trying to find free parking, Amanda and I had pulled into a unidentifiable gravel lot a few blocks from the venue. She stopped a man walking through the lot to ask about whether you had to pay or not to park there. He joked around for a second or two about how you did, and that we could pay him, and then he gave up the whole charade. Our little jokester friend was named Shay (not really sure how he preferred to spell his name), and he didn't do handshakes, "Just good ol' fashioned hugs." After he directed us to free parking around the corner, I asked Amanda as we left, "Was he wearing a purse, or did he have rope thrown over his back, or something?" Amanda said no, and she seemed a little confused why I would've asked that. "It felt like he had dreads, or rope, or maybe just dreads that felt like rope..." Turns out Shay had dreads, not rope. Later a Flintstone like trolly came rolling down Haywood St. and we weren't really sure what that was all about. We became informed much later that it was a "Brews Cruise."

This was my second time seeing Frightened Rabbit. A friend had turned me on to them about 5 or 6 years ago. Their vocalist has a strong Scottish accent and a very honest way of sharing the lyrics. Their guitars are raw electric sounding, and the drummer is phenomenal at blending rhythms signature of Scottish and popular genres. I think i own almost every one of their albums and even a couple of them on vinyl. This summer I listened to their most recent album, "Pedestrian Verse," so many times! I'd set it on my turn-table and listen to tracks over and over. There may or may not have been solo dance parties, and my living room furniture may or may not be scarred for life for having been the only  viewing audience.

There's something about live music that you can't experience any where else. And I don't mean having to wait to use the public restroom or the amount of hearing loss one can acquire from lack of protection. Music, in all forms, has a very spiritual and, obviously, very emotional quality. I realized, while listening and experiencing this live performance of music with hundreds of other people, that so much of my life was directly related to my experiences with music, small and large things. My degree at university is through the Hayes School of Music. My career goals are to work within the music industry. My bank account is often the victim of purchases related to music. The reason I was even friends with Betty was because of our study abroad trip to Ireland where we had studied Irish MUSIC! I've met some of my closest friends through an internship I had at a radio station where we played, you guessed it, music. My passion for running is connected with music, because I only began to run when I was interning with a non-profit music company while in New York. The whole reason Amanda and I had taken our last minute road trip was because we both are crazy about music. After the first meeting I had with my oncologist, the only thing I wanted to do was to go sit in front of a piano and just play... I wanted to play music.

"I went looking for a song for you

Something soft and patient to reflect it's museI took a walk with all my brightest thoughtsBut the weather soon turned and they all ran off..."

1.75 Miles

Last summer I was living up in Borough Park, Brooklyn. The time will come when I share stories about my predominantly Hassidic Jewish  neighborhood and adventures in the Big Apple, but for now, I was an intern at a not for profit organization that supported musicians, songwriters, engineers, anyone working in the music industry that was blind or visually impaired. In addition to the not for profit, I was also interning down the hall at a small  commercial studio with a blind producer. Monday-Thursday I commuted into Manhattan on the unreliable D train.

Being a student at a university in the western mountains of North Carolina, I enjoy hiking, back packing, other outdoor activities, and doing yoga. After I had been in the City for a couple of weeks, my body had started screaming at me craving that active lifestyle it was used to. Of course, hiking and back packing, in the conventional since, aren't very practical in the concrete jungle of New York. i'm sure you could dawn the apparel and appropriate accessories and go meandering through central park, but that really didn't sound appealing.  There are hundreds of yoga studios, but my bank account couldn't really manage the cost of a class. Yes, there are numerous free classes that're offered through out the City; I did practice, sweating profusely and my guide dog Alexa nibbling grass at my side,  with, literally, hundreds of other New Yorkers on the lawn of Bryant Park one Thursday evening. That was memorable...

One Saturday morning I found myself getting up early (before 8 am), eating a light breakfast, and making the treck up to the North East side of Central Park. The ride took a good hour and 20ish minutes. I was headed to meet up with a group I had heard about from a fellow athlete and guide dog user; she had trained for and competed in half marathons and triathlons with this group call Achilles International. They promote and support athletes with various disabilities, and twice a week in Manhattan they have group work outs in the Park. I had heard of other organizations like this one, and I had even participated with similar sounding groups, but I had always been disappointed in the lack of actual physical challenge the work out gave me. But, I was desperate. I should also point out that these work outs were primarily walking and running through the Park, and up until then I had hated running. My level of desperation for movement had become so intense that I was willing to go run, outside, in the middle of July, with strangers.

Right outside of the New York Road Runners Club I found a group of chatty people. They were very welcoming. We all gradually walked a couple of blocks over to the Park and then disbanded, athlete paired with guide(s). Like I mentioned before, there were athletes with a variety of different disabilities, and this really was empowering. For those of us who were blind and visually impaired, we would run/walk with a sited volunteer, one person holding the end of a tether and the other holding the opposite end. The guide would use the tether (e.g. shoe lace, grocery bag, bandana, etc.) to lead the athlete around people, pot holes, and other obstacles. My guides were Caroline and John, and they'd both been running for years. John was originally from New York, and he gave me all kinds of historical and social tid-bits of information about the part of the park we were in as we ran. On that one Saturday morning I ran 2 miles.

Fast forward to the fall semester of last year, and I found a running buddy to help me keep up my new found hobby. Maranda is a faculty member who I've come to know and sincerely love. Fast forward to January of this year, and I decided to sign up for the New York City St. Patrick's Day Half Marathon. John gladly agreed to be my guide, and Maranda was ecstatic about helping me train for my first race ever.

[Crossing the 13.1 mile finish line with guide John]

In the late spring Maranda found out she would have to have leg surgery. We were both saddened and upset that our weekly runs together would be postponed until, what the doctor was saying at that time, October. Unable to find a comparable running buddy, my runs became less frequent during the months of May and June. And July first flipped my world upside-down with news of my having Hodgkins.

During my first appointment with my oncologist I was told that long distance runs were not going to be in my near future. This piece of news was probably one of the hardest things for me to hear that day while my mom and I sat in the cold, obnoxiously bright, florescent lit, exam room. The doctor advised me that, because of the chemo, my body might not even feel up for running. He wanted me to avoid cardio heavy exercise. My mileage allowance was a single mile. Going from 4-5 mile runs once or twice a week to a single mile was devastating! I moped for a while about my doctor's news, but one day about a month ago a good friend really helped me gain a different perspective. There I was sulking about only getting to run a single mile and my friend says, "At least you're doctor is letting you run at all. You can relish that mile for all it's worth."

The first week of classes started in the middle of August, and Maranda had received great news from her doctor. Her legs were healing beautifully, and she was going to be able to run a  lot sooner than anticipated. During the first week of class she ran a mile, and the second week we were scheduling a time to run together.

This past Friday Maranda and I ran a glorious mile and 3 quarters. It was such a freeing time for the both of us, full of so much healing too. Before our start, we had a moment thanking our great Creator for His goodness. He has truly been both of our sources of strength these last 2-3 months in the midst of very uncomfortable and trying times.

Whatever it is that you're passionate about, running or other wise, I pray that you may find renewal through it. I hope that you might rejoice and be thankful for the big and little things.

List #1: Second Treatment

It took 2 hours before my treatment actually got started

(Something about both oncologists were, quite literally, out to lunch.)

I met a newer nurse named Kim.

(Kim claimed to be the "mean nurse" because she'd worked in the ER for the last 16 years.)

My sisters wanted to take photos of EVERYTHING.

(Apparently, my re-tying my shoe as I got out of the car was worthy of documenting.)

We played several rounds of the Famous Person Game before Rebecca gave up and said she was out of 'C' names.

(This is a great game to play in the car or when you're sitting around waiting for something. One person comes up with a famous person, fiction or non, who has a first and last name. The next person follows that up with a first name that starts with the first letter of  the previous person's last name. Example: Bill Cosby is followed up with Charlie Brown.)

Rebecca spotted a pair of cardinals.

(The cancer centre has huge windows over looking a valley, and there are many types of birds that come sit right outside the windows. Oh yeah, and chipmunks.)

Espresso beans are not the perfect cancer centre snack as you might think.

(My best friend Erin and her parents gave me a care package the last time I was home, and one of the items in said package was World Market Espresso beans. Don't eat espresso beans when you're some where that requires many hours of bed sitting.)

My knitting was accused of being something phallic.

(Kim questioned, "What in the world!" was I knitting. It's supposed to be a scarf, and it's not my fault that the ends have a tendency to curl up towards the middle. I never said I was a professional knitter...)

Nurses are under appreciated.

(Having to sit in a bed for more than 5 hours made me think about how precious the men and women who work in the medical profession are, specifically those who're nurses. Kim and Brenda were my nurses, and they, whether they know it or not, really showed me Jesus. There's just really something special about oncology nurses.)

Are there games that you play by yourself or with others when you have to wait around for a long time, like when you're in the doctor's office or on a road trip?

Two Weeks Notice

Here I am, one month, 20 days, and approximately 12 hours since my general physician came into an exam room where I was waiting and shared her assumption of what an x-ray had been showing in my chest. Of course, she wasn't just going off of an x-ray alone; I had had a CT scan a few days prior. regardless, when she walked in and introduced me to Paul, "He works for the oncology department at the hospital," I knew that the results were something that I could've never expected.  Paul was a very sincere man. He gave me his business card, and it read Oncology Nurse Navigator. "What an exciting job title," I thought.

There were so many tests with so many needles! Jump 2 weeks later and I had a biopsy done of the mass that is my lymph nodes in my chest. Jump another week and a half after that and I had a port put in, a bone marrow biopsy, met with a fertility specialist, had a PET scan, an echo cardiogram, and a pulmonary function test. Yes, the latter were all completed within one week! And have I mentioned I really hate needles.

One of my favorite visits  to the hospital--and I only say favorite because there've been many humorous moments at the hospital despite my reason for being there--was when they biopsied the mass. One of my good friends who's  a nurse back in the eastern part of North Carolina came with me. After the operation 3 nurses were adamant about informing myself, the blind patient with the guide dog, and my friend that I was not to drive for the next 12 hours.

 Since all of my tests, being poked with too many needles, and multiple adventures to the hospital, I've since met my oncologist and had my first round of treatment. I can't say that my doctor is the most amicable man around, but he knows his stuff. The game plan, if you will, is to undergo 4 rounds of chemo and then we'll come back to evaluate the situation.


I'm receiving ABVD: Adriamycin, Bleomycin, Vinblastine, and Dacarbazine (Can you say those names 5 times fast?) The chemo treatments will be scheduled every 2 weeks. My mom likes to refer to this as my cokctail. Maybe after all this is said and done I'll create my own alcoholic cocktail. It'll be my triumphant drink of choice, and every time I drink said cocktail I'll savour the flavour of   kicking Hodgkins in the butt!

Tomorrow is round 2 of chemo.