The world keeps turning.

It's been almost a week, but a lot has happened.

I had biopsies done two days ago.  I fretted a lot, and I was really scared, but I made it.  The tough part now is waiting for results.  I just have to be strong, and remember that no matter what the tests say, I will fight... until I can fight no more, or until I win.

By now everyone should know Steve Cannon by name, at least if they've looked at my blog.  Two days ago, the day I had my biopsies done, Steve's uncle was diagnosed with stomach cancer.  It's such a small world, and in some ways, a very cruel one.  I'm sure Steve would appreciate those unfamiliar to check out the log of his journey:  http://www.theruntocurecancer.com

Something else has been slightly grating my nerves the past couple of days.  Lots of Justin Bieber fans have suddenly joined the "cancer" bandwagon because he has been giving attention to a 6 year-old fan who's dying of a rare childhood cancer.  While it's great he's doing this, he's done things like kiss her "on the lips," gave her an engagement ring, and is calling her "Mrs. Bieber."  You know what I'd like to see?  I'd like to see him donate a boatload of money to cancer research himself, rather than focusing on publicity stunts.  I'd also like to see his fans learn something about what is really happening to this little girl, not just making statements like, "she can't die, it would break Justin's heart!"  Is this ALL about Justin?  Really?  I'm glad Justin himself is trying to make this little girl happy, but there is so much more that could be done here...

I guess maybe that was a little bit ranty, and I apologize.  I'm sure I will have more to say soon, but for now, please send positive thoughts, vibes, or prayers to Steve, his uncle, and everyone else you know who's in a fight.

Today's inspiration.

It's been awhile since I posted, almost a week, which is unheard of for me in Blog Land!  I've had a busy week, though, so I have an excuse.  A lot of really cool things have happened, however!

On Thursday night, I bought a mile of Steve Cannon's "Run to Cure Cancer."  I donated my paycheck from band camp to his cause - the LAF/Livestrong.  Steve's friend Brian is recording the journey in the blog, and gave me a shout-out in the post that day.  I am unworthy, but flattered nonetheless.  What a true honor!  (See pic below!)  presence* also got a mention in an earlier post last week for one of my tweets.  (See second pic.)  Again, so very honored to be a part of this!

I survived a week of teaching, and each day was reminded how lucky I am to be able to do what I love.  I didn't have much energy the rest of the day when I was finished, but I had a fun time!  This week my efforts will be put toward endeavors closer to home - my thesis, playing music, and presence*!

Speechless.

Steve added me to his "team" on the sign in his RV. I am so freaking honored I don't even know what to say.

 

Intentions and Heroes.

When I started this blog, I didn't think it would become a place for me to blog about my thyroid experiences, but I'm noticing that it has.  While on one hand I'd like people to know about my struggle (from the standpoint that it might offer them some support), on the other hand I feel like I'm complaining about something so trivial.  I'm so lucky, right?  Look at the loved ones I've lost, and the loved ones of people I care about who have been lost to cancer.  I might not even have it.  Yes, this whole road might be because we need to prevent it, but still!

I guess my intention really is to share with the world stories from the battlefield - those with cancer, those without cancer, and even my own fights.  It isn't about who is suffering more, who is suffering less... the fact is, we're all having to watch our lives change because of this horrible illness, each of us in our own particular way.

But let's move on to the happier topic of heroes...

Steve Cannon is running 40 marathons in 40 days, all the way around Lake Michigan.

Do I really need to say much more than that to prove he's a hero?  Probably not.  But it gets better.

Steve is doing this to raise money for cancer research.  (His website is at http://www.theruntocurecancer.com.)   So if his incredible strength and athletic ability isn't enough to render him a superhero, his devotion to this cause certainly is.

Tonight Steve responded to one of my tweets on Twitter.  I felt like a Justin Bieber fan for the first time in my life - a personal hero acknowledged something I sent!  I didn't send it for a nod, but I sent it because I really, truly believe this man is doing something amazing.  He also followed me, and asked his followers to send me good mojo.  I hadn't meant to be so negative on my personal twitter, but I had a really rough day of it. Honestly, tonight, and Steve's support, changed all that.  I feel like I have this new outlook - one which I had built up on my own, but that was just driven home by this acknowledgement that the fight really is worth it.

I know I won't be in this terrific of shape any time soon, but shooting for that 5K in July isn't such a big deal when I think about running 40 marathons in 40 days.  If I have to do the 1.5-mile walk instead, I will... but July 28, I can be in much better shape by then, right?  Well, I don't know... I can't count my chickens, but I know that I sure as heck will be in the gym tomorrow night, back at it.  Slow and steady...  that's all I can do.  One day, I'll run a 5K every day for a month, or something simple, just to give back.

Until then, presence* is my attempt to give back, and it's going to be a great one - thanks to all of you!  (:

Realizations: I am not this illness.

This is another personal entry, but I think it applies to everyone battling sickness.  This thinking represents a powerful realization in my life, and marks an anniversary for me - the beginning of a new outlook and acceptance of this illness.  Under the ADA, it's a "disability."  I think that many of us have conditions of some sort that are defined that way, but the truth is, "disability" is a misnomer.  Screw that.  I am stronger than any stupid autoimmune illness, or even cancer!

I woke up this morning, and was so dizzy I couldn't get out of bed.  I had a fever, which is normal for me, and I felt really frustrated, and totally unsure of how I would ever be able to keep a positive attitude about this.

Then the thought flash burst in my mind:  You have a chronic illness, an autoimmune illness.  You can let it take over your life and allow it to keep you in this horrible, depressed, lethargic, negative, miserable state, or you can choose to beat it and live a normal life.  Yes, you will have to work a little harder than everyone who doesn't face this problem, you will have to find loving, supportive people who are willing to stand beside you on good days and on bad days, and you will have be miserable in the gym training some days... but you CAN beat it, you have the option, if you choose it.

Sometimes my rational mind makes a lot of sense.  Yes, every day is a battle, but it's not a battle that can't be won.

Awareness.

Official thyroid cancer awareness bracelet.  I’ve had the Livestrong bracelet since my first round with this back in 2005.

For the kids (and myself!). (;

Down below is a picture of a pretty bouquet.  It's called the "Sunny Day Pitcher of Cheer."  10% of the proceeds for every one sold (roughly $6-$8) is donated to Alex's Lemonade Stand.  (Link below.)  I really want one of these, but you can't get them in my zip code.  (Wonder if you can get them in Kent?)

Order (or try to!) here.

Alex's Lemonade Stand is a childhood cancer charity, and one I hope to eventually sponsor an event for.  Please see the website for more information!

Finally, this is an event in Philly that Alex's sponsors as a fundraiser.  My goal is to be healthy in November, and to make it one of the runs I participate in!

The Lemon Run.

A Personal Post from my Thyroid Journey.

It's a chilly, overcast day in Huron County.  I have a hoodie on, and I am still freezing.  Granted I'm always cold because of my thyroid, but today it's unbearable.  I need to go get another hoodie to put on top of this!

Now I have two hoodies on, and a hat... and my hood up.  It's pretty ridiculous the way things have been lately.  It isn't really that cold, but such is life.

I have to say that since I started working on presence*, I have learned so much.  I'm not really so big on pitying myself for stupid little things anymore, now I just am aware of my limitations, and realize that reaching out and talking about my experiences helps. I have to cope, and I've not accepted that before.

Now, to mention some things that I'm dealing with.

I've always had a problem with not eating.  It's been worse in the past month or so.  I have been giving it an honest attempt to watch my caloric intake, especially since the beginning of feeling like this.  The truth is, on days I feel really hungry, I am lucky to net 1100 calories.  Most days I average 700 or 800.  It's better than nothing, but it's a beginning.  It's nice to lose weight, something that's always been a struggle, especially with thyroid problems.

The biggest worry aside from my throat in general has been the way I felt in the past couple of days.  My fever spiked at 102 on Saturday, and finally went down Sunday morning.  I think it broke at some point in the middle of the night.  Today and yesterday, I've had a new experience - I sometimes feel like my legs are just going to give out on me at any given second.  I tried running, just a very short distance, and the weakness in my leg muscles was unbelievable.   I've never had this happen before; I've had plenty of general fatigue and weakness, but this is new.

All I can do at the end of the day, though, is be thankful for how lucky I am to not be sicker.  Sometimes that's tough - I don't like the idea that I shouldn't be allowed to be scared or worried just because I'm not sicker than I am.  I have to let go of that "MUST BE STRONG ALWAYS" mentality.  I've heard some pretty ugly reports from people who had thyroid biopsies about how painful they are, and I've heard from a lot of people who have NEVER had them that they're "not a big deal at all, and don't hurt."  Excuse me, but how do YOU KNOW?!

I guess I vented enough for one day.  Thank you for supporting the endeavors of my organization if you're reading this, and thank you for simultaneously supporting me and my loved ones (even if you didn't know you signed up for that)!  <3  I appreciate you all!

About the Tumblr.

I started a Tumblr for presence*, thinking it would just be another platform to make people aware of my mission.  It has turned out to be very different, actually.

One of the reasons I am leaning on this project so heavily is because I am having biopsies done on my thyroid in 2 days.  I am trying to distract myself from worry, and also to remind myself that no matter what happens, I'm really lucky!

On Tumblr, I've run across a lot of cancer warriors.  This has opened my eyes, and given me an opportunity to share the media of those individuals to even more people who can offer them support.  Also, I've discovered that I can use Tumblr as a venue to share inspirational pictures, ideas, and thoughts. (Almost like Pinterest, but available to anyone, and not quite so burdensome to manage!)

If you have a Tumblr, or just want to check out the site (some of the longer posts are cross-posted here, so no need to double-dip unless you like the inspirational ideas), it's at:

http://RSLpresence.tumblr.com

For Allyson

Today's post of honor goes out to a young lady named Allyson, a 21 year-old college student whose blog I found on Tumblr. She is currently on her fourth round with bone cancer. She started a project called "Reasons to Keep Fighting." I may share some of them here.

I particularly liked this post she made, entitled "Optimism":
"... optimism is better for me, any patient really. You’re not going to get healthy by feeling sorry for yourself. I look to the bright side of things, which I think if you’re in a situation such as this, you sort of need to. To quote Titanic, I’m for making each day count, along with living as if there may not be tomorrow. Sure, you’re sitting there having poison pumped into you but that doesn’t mean you should give up. Cancer shouldn’t define you. It’s a word, not a sentence."

Her blog is at http://cancerisaword.tumblr.com/

Here is her first post.  Please check out her blog if you're a 'tumbler,' and show your support.

Here's to you, Allyson!  Keep fighting!  <3

The time has come.

Today, I'm going to work out my forms, and send them off to the Secretary of State.  It's really happening.

I want to start today with a thankful post: I have found so many times lately I've literally prayed for direction in my life, and I continually have received it.  I've learned a lot.

Much love to all the fighters, survivors, and supporters out there today!  <3

A Tribute to Linda (from the Akron Beacon-Journal)

Linda is the "L" in the presence* user name.  She was the mother of my good friend, Lindsey, who is a member of the Horn Studio at Kent State University.  Linda was a remarkable woman, whom I consider myself blessed to have known.  She passed away Wednesday, at the age of 50, after a decade-long fight with ovarian cancer.  She is a true inspiration to myself, and so many others.  Please remember her family - husband Gary, daughter Lindsey, and son James - in your thoughts or prayers as you see appropriate.  Thank you.  <3

Linda Williams dedicated her life to helping others

By Jewell Cardwell

Published: May 31, 2012 - 11:09 PM

Beacon Journal staff writer
Linda Williams played many wonderful roles in her life, which ended Wednesday following a long and valiant battle with ovarian cancer. She was 50.
The most important were as wife to Gary and mother to James and Lindsey. “So we weren’t surprised that she somehow managed, as she had wanted, to stay alive long enough for school to be over, so James wouldn’t have to deal with any more than he has to,” longtime friend Eileen Freeze said. “She made it.
“When she was diagnosed nine years ago, she threw herself into an all-out attack on the disease. She learned all she could about the disease with enthusiasm and positivity. She mentored others with the disease, sharing information and supplies. She even appeared in a television ad for University Hospital.”
After such a weighty diagnosis, Mrs. Williams could have easily decided to concentrate on her family. She did that, but she still made time for others.
“Her civic service began early,” Freeze said. “While still in high school she began donating blood to the Red Cross regularly. In the early ’90s, she donated blood specifically for a friend’s mother who was losing her battle with, ironically, ovarian cancer.
“Linda fought her disease with strength and grace, never complaining. Unless you knew her well, you would never [have] suspected that she was in this battle. She was cheerful, witty, generous and proud of her family.”
Mrs. Williams was a strong supporter of Springfield Schools, “serving on levy committees, sponsoring fundraisers, belonging to the parent-teachers group, organizing Easter egg hunts, being a room mother, serving in any capacity. She even helped pack up and move teachers who were moving when schools closed and people were relocated.
“Both of her children are Springfield band kids, Lindsey a graduate and James an upcoming freshman. As a band parent, Linda volunteered hours in the weekly bingo fundraisers, often working a three- or four-hour shift while driving home from a chemo treatment in Cleveland. She chaperoned band trips and was a band camp parent chaperone for four years. During football season she could be found manning the band’s concession stand or carrying the cotton candy pole through the stands. The annual Turkey Festival provided additional opportunities to serve and support.”
She worked 32 years at Becker Pumps Corp. in Cuyahoga Falls, where she was the purchasing manager.
Linda Williams also was a collector. Described as an enthusiastic yard sale aficionado and flea marketer, she was forever on the search for Christmas decorations, antique and retro ornaments.
Over the last eight years, Mrs. Williams and her family decorated at least 15 Christmas trees in their home and invited all who would come in to see the “Williams Wonderland.”

Everything happens for a reason.

Some people disavow this strongly, but not I.

I will be sending off the $125 fee to the Ohio Secretary of State to make us official... THIS WEEK.

I thought it might not be until July.

God has taken care of me, again.  (:

What if... ?

I would be lying if I didn’t confess that it frustrates me how few people in the grand scheme of things actually notice cancer.  Maybe it’s because no one in their immediate family suffers from it, or maybe they really just don’t know anyone struggling with it… but when I wake up to a Twitter trend about Justin Bieber’s BROTHER’S birthday, and there hasn’t been a trend about Cancer Survivors Day, it makes me a little sick inside.  What if Justin Bieber had cancer?  I bet all those girls would notice it then.  I would never wish cancer on anyone, but that doesn’t change the fact that it is an ugly, sickening disease that far too many of us have to live with in some form.  So why is it so comparatively insignificant in the world?

I’m not sure if we can ever raise awareness to even a fraction of the level that pop culture figures garner, but maybe someday we can at least educate people as to the risks of this horrid disease.  Better yet, maybe one day we can announce a cure.  I sure hope that would make a bigger Twitter trend than anything about Justin Bieber!  

Note:  No offense is intended to Justin Bieber fans, I’m just using him as the perfect example.  I have nothing against Justin at all.

My Personal Connections to Cancer.

This is not my personal blog, but I would like to share part of my own personal story to give some background as to why this project is really important to me.

I should say this is just one of the myriad reasons presence* is so important.  I myself am probably the least of my concerns.  Being an INFJ, I am a master of empathy, and I've always found my concern for my friends and loved ones to be much higher than my concern for myself.

Until now.  Now the worrying has begun to consume me, and admittedly, it's difficult to turn it off.

Back in April, I saw a new endocrinologist at Cleveland Clinic.  She found several tumors in my thyroid, and scheduled an ultrasound for me.  The ultrasound was essentially so that she could get a better look at what was happening - how big the tumors were, what their boundaries were like, whether they were "hot" or "cold."  After she read the ultrasound, she told me that she didn't like the appearance of several particularly large tumors, or the way the boundaries appeared.  She scheduled a biopsy for me, which will take place this Thursday.  I was not a stranger to ultrasounds, radioactive scans, and other diagnostic tests, but I'd never had a doctor who was this concerned with my situation.  It is an old battle, with new implications.

For the first time, I'm scared.  I have had nodules and tumors in my thyroid before - four times, to be exact.  Although my white blood cell counts were astronomically high, and my red blood cell counts were nearly non-existent, somehow my body killed everything in my thyroid off... including my thyroid itself.  Now, partially because of my doctor's aggressive stance, I'm scared.

The first time I was diagnosed with the tumors, I was in my first year of law school.  It was so difficult, and absolutely everything in my life was adversely affected by how sick I was.  After four medical leaves, and six years, I graduated from law school.  I wasn't sure what I would do with my J.D., because it didn't seem like I would ever be healthy enough to practice law, much less even pass the bar exam.  (I now know through my research that even ADA accommodations are available to people like I am!)  There is a future for me out of this, and I'll figure it out in time... at any rate...

Thyroid cancer is rare, and when it occurs, it is very treatable, in most cases.  I shouldn't be worried.  Fueling the anxiety was my antibody level, which was 557.  (It's supposed to be a negative number, according to the lab report.)  It's another reason I worry.

I think my health situation in general has been the largest contribution to my worries.  I find it difficult to muster the strength to get out of bed in the morning.  Often I am weak and have to take time to gather myself.  There are times I've been so dizzy I have fallen.  There are other times when random muscles just refuse to work.  Lately, I've been struggling to take in 1000 calories a day.  My neck is often swollen, and it is difficult to breathe, especially when my throat is sore.

I was telling a dear friend, whose father is one of the people this project is dedicated to, about the biopsies I'm having.  I confessed to him something I've never told anyone - I had always had the attitude that if cancer is going to take my life, I don't want to know.  If I'm going to die, I don't want to live the rest of my life out suffering.  What God wants from me, I can accept - now, or later.  I told him I'm not scared - what happens, happens.  He questioned how I could be afraid of dying, yet not want to do anything to prevent it.  He told me, "You're scared to fly in an airplane because you're afraid you'll die, but you won't do anything to make sure you don't die of cancer?  That makes no sense."  I haven't really talked about the biopsies with anyone else, not even my parents, until now.  I have never expressed these feelings to anyone else, until now.

So I guess I'm boarding my airplane.

I woke up from a nap this afternoon to an email about a colleague who was diagnosed with cancer this weekend; she was admitted directly to Hospice.  Two days ago, the top news item in my Flashline (school network portal) was that a research librarian at KSU passed away from cancer.  One of my best friends at school lost her mother to ovarian cancer on Tuesday.  On Sunday, I played a mass to remember the mother of my composer friend, John Pasternak, who died of breast cancer last year.  A friend lost an uncle to cancer last night.  Another friend lost her grandmother to cancer this weekend.  Two famous people died of cancer in the past 24 hours.  I could keep going, but I shouldn't have to.

I'm scared, but I'm not afraid to fight this... anymore.  Part of that battle, however, is not just my personal fight, but my contribution to the fight against all cancers everywhere.

Off we go into the wild blue yonder...

June 3, 2012

Today has been fairly productive for presence*!

This morning about 12:30 a.m. I finished our Articles of Incorporation.  This is the first step to being recognized as a non-profit in the State of Ohio.

The next step was to draft our constitution and by-laws, which I finished this morning about 10:30.

From this point I just need to wait until I have the funds to incorporate!  It's a little bit crazy that it costs $125 to start a NON-PROFIT in Ohio.  If I had that money to spare right now, I would toss it out there, but I spent $600 on textbooks for my summer classes, and it's a little bit insane.  I've been laying off the gigging because of my health (thyroid), so I haven't had as much spare money lying around.  (Not gonna lie, it's been nice focusing on my schoolwork for once, as much as I love playing!)

I know things will work themselves out really soon, though.  It's only a matter of time!  The documents are downloaded and ready to go.  We will be official very soon!  :D

Welcome!

Welcome to the blog for presence*, a non-profit organization dedicated to cancer awareness, and making music more accessible to those with loved ones facing cancer.

My name is Lisa, and I am the founder of presence*.  I am a professional musician (horn player!), horn teacher, and doctoral student at Kent State University in higher education administration.  I studied music as an undergraduate and Master's student, and also attended law school, where I first became interested in the legal rights of Americans as set forth in the American Disabilities Act.  Given the number of ways cancer has touched my life, I decided to focus my energies on studying the rights of students who are facing terminal or chronic illness, or who have family members doing so.  I am pursuing this study largely under the umbrella of the rights and accessibility for college students with mental illness concerns.  (Grieving falls under this category.)

presence* is devoted to the loving memory of three individuals who touched my life, each in their own way.  This is where the "RSL" in the username comes from.

If you would like to know more about presence*, or would like to be involved in any way, please feel free to email me.  (There is an email link in the right sidebar.)

Thank you for clicking on my blog, and for your support in the mission to cure cancer!