Saturday, June 13, 2015

So Much More Than Surviving

Amazingly enough, Relay was already two weeks ago, but what an incredible weekend it was!!

After warily watching the forecast for the weekend oscillate between torrential downpours and sun the week before, Relay morning arrived bright and sunny and stayed that way until everything was packed up to go home the following afternoon.

Our baked goods were delicious.  Our raffles were a success.  Our campsite was crowded with family and friends.  Our hearts (and stomachs) were full.

I am beyond thrilled to tell you that our team raised over $10,000 this year!!  This is more than we raised in the last two years combined ... by a lot.  Achieving that level of fundraising success had never even crossed my mind.  I am just blown away and so thankful for all of your generosity and support.

I think that this year's Relay will always be very special to me.  It was our first year at a new Relay and I have absolutely fallen in love with the community there, but it was more than just that.  Not only did this Relay provide an uplifting break in the middle of my treatment just when I needed it most, but I also had the honor of giving the speech at the Survivor Ceremony.

Although I wrote my speech ahead of time, I did not read it word for word.  So what I shared was close to this:



There are two things that I want you to take away from listening to me this evening:
1.  If you think something is wrong with your body, go to the doctor, because early detection saves lives - quite possibly mine.
2.  Whether you've raised $5,000 or $5, the fact that you are standing here right now makes a difference.

My cancer story began in August of 2012 when I found a lump on my neck.  The first thing I did was Google it.  After being sufficiently freaked out by what I read, the second thing I did was call my doctor.  A couple hours later, I was in his office.

The next few weeks were full of stress, uncertainty, and medical tests.  I had blood work done, an ultrasound, and a biopsy.  Unfortunately, although they could tell me that there was definitely a nodule on my thyroid, they couldn't tell if it was cancerous or not.  I had to have surgery so that they could remove half of my thyroid to find out for sure.

In October of 2012, at the age of 26, I was diagnosed with papillary thyroid cancer.  What followed was a second surgery to remove the rest of my thyroid, a radiation treatment, and an emergency room visit due to the side effects.  It took over a year to get my medication levels right.

The emotional side took even longer to sort out.  I didn't know what to do with this new label of "survivor".  Yes, I knew that I had had cancer and I was still alive, so technically I was a cancer survivor.  But my experience wasn't anything like the picture that comes to mind when you think of a cancer survivor.  I hadn't gone through chemo, I hadn't lost my hair, and I didn't feel very brave, so I didn't feel comfortable calling myself a survivor.  Part of the problem was that it sounded like it was past tense, finished.  But it is never over.  How could I say something so final when I carry this with me for the rest of my life?  The touch of thyroid cancer is never farther away than the medication that I have to take every morning so that my body, now missing a critical organ, will not shut down.  A single label is too small, too finite to truly convey all of this.

Even though I wasn't sure how to feel, I knew that I needed to *do* something.  So I decided to get involved with Relay.  Over the next couple years, I learned about all of the wonderful programs that Relay and the American Cancer Society support.  I met some of the most wonderful, caring people and have formed lasting friendships.  And I learned that survivors come in all shapes and sizes.  I began to understand that survivor means something different to each person, and that it was okay if my definition was a little different too.  I began to be at peace with my whole experience.

Now, I am enough of a realist to know that having already had cancer once at so young an age, it was likely that I would have to face it again at some point in my life.  So there were times, while volunteering with Relay, that I found myself thinking "I wish I had known all of this before.  But at least now, I know where to find these services if I ever need them again some day!"

The thing is - some day was never supposed to come so soon.

At the end of February, just a few months ago, I went to my doctor's office.  I'd had a lingering cold that felt like it was moving into my chest, so I went to get it checked out.  It was a complete shock when an x-ray revealed a mass in my chest.  After more weeks of stress, uncertainty, and medical tests, at the end of March, I was diagnosed with non-Hodgkin lymphoma.

I have now had two cancer diagnoses in just over as many years.

So let me come back to the two points I told you at the beginning.

Point #1:  if you think that something is wrong, go to the doctor.  In both cases, my tumors were very large - about the size of a golf ball for my thyroid and a baseball with my lymphoma.  But in both cases, the cancer had not spread.  In both cases, I was fortunate enough to have been diagnosed early - and the earlier your diagnosis, the better your prognosis.  I could have very easily ignored the lump on my neck that was "probably nothing".  I could have very easily said "Oh, this cold will pass on its own".  My story might have turned out very differently if I hadn't been so proactive about my health.

Point #2:  Regardless of how much money you have raised, what you do here matters.  Each of you has your own reason for being here and for fighting back against cancer.  And I am sure that most of you have a pretty good idea of what that money goes to:  the Road to Recovery program that provides rides to treatment for cancer patients; the Hope Lodge that provides lodging for people who have to travel out of town for treatment; and the Look Good, Feel Better program, that helps women deal with the appearance-related side effects of cancer treatment.  Every amount raised, no matter how small, helps support these programs and more.

But what do these programs really mean to someone with cancer?  Well, a few weeks ago, I was able to attend a Look Good, Feel Better workshop.  I was excited to go, because some days, it is hard to feel good about yourself when the person looking back at you in the mirror doesn't look like you.  And that is the whole idea behind this program - when you look good, you feel better.  So I got a bag full of great makeup and beauty products to use, and I got tips on how to deal with all of the changes that come with chemotherapy:  hair loss, skin changes, weight loss or gain ... or both.  They taught me how to draw my eyebrows back on so I will be prepared if they fall out later.  I am very grateful for this experience, and because of money raised at events like ours, I was able to attend this workshop for free.

But what we do here is not just about the money.  Yes, the funds we raise are critically important to ensure that the programs I just mentioned can continue.  But the simple act of so many people joining together for the same cause is important on its own.  The hope and encouragement that you all provide is immeasurable.  This community has picked me up and supported me in so many ways - in ways that money cannot.  I have been looking forward to this weekend since my treatment began.  This - right here, right now - matters.

My feelings about being a survivor have changed and evolved, and to be honest with you, I'm still not completely sure how I feel about the term.  But I do know one thing:  I don't believe that you can be a survivor on your own.  So thank you all for helping me be one.





I am grateful for the opportunity to share my story - not just at Relay, but through this blog as well.  It  has helped me process and find meaning in my experiences.  It has helped me find my voice and discover a love of writing.  And it has allowed me to grow in ways I never would have guessed.

Something incredible happened the first time I saw the picture above, something I wouldn't have thought possible.


I loved it.


Instead of seeing flaws, instead of finding faults, all I saw was strength.  After everything that I've been through, I am still standing tall.  In that moment, I was incredibly proud of myself.

And that sounds like being a survivor to me.

Saturday, June 6, 2015

Four Down

In a surprising twist, chemo was a go this week with good news on all fronts.

Remember my poor, tired liver?  Well, normal ALT levels are below 56.  Going into the 2nd cycle, mine was ~100.  Going into the 3rd cycle, it was ~220.  Going into the 4th cycle, it was ... 80?!  Way to buck the trend, liver!  So almost back to normal levels - this is excellent, but go figure.

My PET scan also looked good - with only a small section of activity showing, my tumor is mostly gone.  We will recheck with another PET scan after the 6th treatment.

I was also not nearly as exhausted this week as I was last time.  Don't get me wrong - I'm still doing plenty of napping!  But as opposed to last cycle where I was pretty much laid up for 4 days straight, I've actually been able to get up and interact with the world for short periods of time before having to rest again.

That being said, I think it is time for a nap.

Two to go.