Showing posts with label LUNGevity. Show all posts
Showing posts with label LUNGevity. Show all posts

8/12/2017

What's in a Date?

August is a very momentous time for me. August 11, 2015 was the date I found out I have adenocarcinoma, non small cell lung cancer. Then I found out it was inoperable and incurable on August 14, 2015. This is the date I use as my Cancerversary date. Cancerversary~ the anniversary date of my lung cancer diagnosis.

Monday is my 2 Year Cancerversary. I really never thought I would still be alive today. The odds are against me, but I'm beating those odds every day, every hour.

I don't have too many not so amazing things to share over the last year. But the one thing is a fairly major concern. I was NED ( no evidence of disease) for approximayely 6 months. In October 2016 we started monitoring tumor growth activity in my upper right lung lobe. I had two blood biopsies to see if my cancer had developed a new mutation that is resistant to my current treatment. No information came back from the blood biopsies. I had a needle biopsy in May 2017. The biopsy was unable to collect a good sample and my lung clasped. A clasped lung equals my first overnight hospital stay.

I had radiation to this new tumor and I'm continuing with my current chemo pill/targeted therapy. Now we'll monitor this activity and see if the radiation did it's job.

One thing I must mention. We have lost many prominent people and advocates in the lung cancer online/social media community over the last year. These are people, putting themselves out there to educate, support and change the face of lung cancer. Every new death is a hard blow. They are missed terribly. I will continue advocating in their memory for much needed research to manage and end this terrible disease.

So many amazing things have happened to me since August 2016. These are just some highlights.
  • I have my own beer! I was able to attend the keg tapping party in Dayton, OH for Lisa's Luck Amber Ale.
  • I worked with the American Lung Association and participated in an award winning video to educate and spread  information about the importance of tumor testing.
  • I shared my story at the Denver Lung Force Walk.
  • I checked an item off my bucket list. I sewed my own dress and entered myself in a pinup contest. I was the first runner up and won prizes.
  • I ran the Run the Rocks 5k and turned 46 in the same week.
  • I participated in a Lilly Pharmaceutical advisory board and got to meet my lung cancer bff.
  • I entered the Team Draft Lung Cancer Survivors Super Bowl Challenge...and I won a trip to Houston the week of Super Bowl and attended the Taste of the NFL.
  • Thanks to Do It For The Love, I attended a Social Distortion concert in Denver, was given the VIP treatment and got to meet the band.
  • Because I was a first time attendee, I was granted a full travel scholarship to Washington, D.C. to attend the Lungevity Hope Summit.

I can't wait to see what comes to me between now and August 2018. With your help I may be able to add Lungevity Hope Summit 2018 to next year's list. Please help me celebrate surviving another year with stage iv lung cancer and make a donation. If I reach my fundraising goal, I can qualify for a full travel scholarship, attend the summit and spend time with my long distance lung cancer friends.

5/04/2017

What is HOPE?

I was diagnosed with stage iv lung cancer in August 2015. I didn't register for the 2016 LUNGevity Hope Summit. At the time, I was just getting used to life with lung cancer. I followed the social media posts and photos. It looked like a good time was had by all. It gave me hope and inspiration. I got to attend and be in the photos this year.
Hope Summit features inspirational speakers, medical expert forums, lung cancer survivor-specific sessions, and opportunities for lung cancer survivors to connect with other survivors and share their stories. Their stories of hope. Hope Summit is appropriately named because that's what this last weekend delivered. I'm at a new step in my treatment plan. You would think being immersed in three full days of lung cancer talk would be depressing and make me worry about these next steps. It was just the opposite.

As a first time attendee, I applied for and was granted airfare and hotel stay to attend this year's Lungevity Hope Summit in Washington DC . Lungevity provides this so all lung cancer patients have an opportunity to participate in this event.

I also attended an advocate day, which was on the eve of the Hope Summit kick off. I was interested in finding out information on advocacy and how to be more involved, if possible.

On Thursday evening I went out to dinner with a fairly large group of lung cancer patients and survivors. This was one of my favorite moments of my trip. I find it interesting that 17 people, with 17 different backgrounds, 17 different lung cancer stories and probably 17 different combined lung cancer treatments and/or drugs and we instantly bond with one another. Some have had it rough and some have been to hell and back. Some have been dealing with this for months and others for 12+ years. But having lung cancer is our common ground. I heard a good comparison once. Someone was taking about skiing. He said the downhill skier going 70+mph has the same adrenaline rush as the beginning skier, even when they aren't going the same speeds. I'm guessing the 17 of us have the same hatred for lung cancer.

Having time with other lung cancer patients and survivors was my best part of going to Hope Summit. It gave me the opportunity to thank two of them, in particular, in person.

I was at the top of my physical fitness game when I was diagnosed. One of my first fears was the possibility of never running again or working out like I used to. But I watched videos of Juanita power lifting and doing what she loved and what she did before lung cancer. That gave me hope.

The other was Patty. I would see her online, participating in events with Team Draft. Her smile and attitude would shine in the photos and videos.
I knew I wanted to be a part of that. It gave me hope that one day I would. And I did! Down to the wire, Patty was my biggest competition during the Team Draft Lung Cancer Survivors Super Bowl Challenge. If anyone was going to raise more funds than me and knock me out of the running, I wanted it to be Patty.
Several weeks ago this question came up. What is hope? Without thinking too hard about it, this acronym came to mind.
Hope
is
Having Optimistic Perspectives Everyday.