LCAM Proclamtions

December 15, 2021: This is at the top of my list of one of the most responsible lung cancer advocacy events I've been a part of. Click the pic for a link to my latest article. 

https://lungcancer.net/living/lcam-proclamations

A Year in Review: Measuring Life in Events Not Dates

I've never been the type of person to remember exact dates of bad or traumatic events.  I know my father passed away in January when I was a child.  But i can't tell you the exact date.  It's the same thing with other family members and friends through the years. Sometimes i can remember what season it was with no memory of a particular month or day.  So, every year when winter rolls around,  i don't focus on the calendar.  January doesn't bring up old memories or sadness.  Sometimes,  i don't think of it at all.

That all changed after Lung Cancer and Moyamoya.  There are some dates I will now never forget and always will remember and celebrate.

 I will never forget the date, August 14, 2015.  I have remembered it and acknowledged this date every year since.

I can't tell you what day of the week it was.  I do know and remember well that it was a work day for Jeremy and me. We were at the tail end of the multitude of tests that i had undergone over the previous weeks.  August 14, 2015 was the results appointment for the final test, a PET Scan.

Up to this point, we only knew about one lung tumor in my upper right lung lobe.  This was the appointment we would find out how active the cancer was.  Being naive and having no first hand experience with cancer, I thought that meant if that tumor was a weak or strong tumor.  That sounds so funny to me now.  It goes to show how much we just didn't know at that point.  We had been focusing on the fact that I was a good candidate for surgery to remove the tumor.  We both thought this was the appointment we would be given a surgery date, recovery time and the info for any follow up chemotherapy or radiation treatments.   Jeremy and I went to work that day.  We broke away for a lunch meeting with my Memorial Hospital oncologist.  We were going to return to work after the appointment.

  This was the appointment we learned I was being diagnosed with STAGE 4  non small cell lung cancer.   My cancer had spread (metastasized) throughout both of my lungs and to my spine.  We heard the words, INOPERABLE, INCURABLE,  and TERMINAL.  We didn't return to work that day.

Why would I want to remember,  acknowledge and celebrate such a day?  I know some people that never talk of their diagnosis.  Some only refer to it as, "The C word".  To me it's almost like a birthday.  I don't remember being born,  but I still celebrate adding another candle to the cake every year.  I hate Lung Cancer and I wish I could forget it.  But you're going to find me every year celebrating my CANCERversary and the fact that I'm still surviving this inoperable, incurable, terminal disease.

Since my last CANCERversary I've had a few notable events take place.  It's been one helluva year!

• Diagnosed with an ultra rare brain disease, Moyamoya
• Brain surgery to treat Moyamoya.
• Survived a hemorrhagic stroke.
• Survived emergency brain surgery after my stroke
• Survived a coma
• Endured eight months of in-patient and out-patient Occupational,  Physical and Speech Therapies and now continue cognitive and executive thinking therapies on my own
• Traveled to Lungevity Hope Summit by myself
• Attended the Lung Cancer Alliance National Advocacy Summit in Washington, D.C. and participated in six meetings on Capitol Hill with Colorado members of congress.
• My Lung Cancer treatment quit working after 33 months
• I had Lung Cancer progression with lymph node activity
• Started my third FDA approved Lung Cancer targeted therapy treatment

They say the truth is stranger than fiction.  I wish I was making this stuff up.  Sometimes I can't believe everything that has happened to me over the last three years.  Then i see this recap of just my last year and realize it's incredible I'm here and able to blog and share my experiences.

Lung Cancer Patent Advocate, Yovana Maria Portillo with Lisa Moran at Capitol Hill

I think it's fair to say the Lung Cancer Alliance National Advocacy Summit made the biggest positive impact this last year.  Lung Cancer advocacy has been important to me since my 2015 diagnosis.  I've known and shared the awareness facts and grim statistics of how Lung Cancer is the number one cancer killer but receives the least amount of government funding.  Lung Cancer Alliance gave me the opportunity to change this, for myself and everyone else diagnosed with Lung Cancer in the United States, which could in turn effect Lung Cancer patients around the world.  Capitol Hill changed me and I changed Capitol Hill.  As a result of my July trip to Washington, D.C., Senator Michael Bennet of Colorado is now a co-sponsor of the Women and Lung Cancer Research and Preventive Services Act of 2018 (H.R.4897 or S.2358).  I keep referring to this as, "My bill".  I mean, in a way it IS my bill.  It effects my future treatments.  It could potentially aid in the discovery of the next EGFR drug to keep me alive.  It could end or lessen the stigma associated with Lung Cancer.  This squeaky wheel will not stop until Senator Gardner and Representative Lamborn are on board too.  Keep checking your inboxes, gentlemen.

This year my CANCERversary party is gong to be my first Shine a Light on Lung Cancer fundraising event.  It will be a combination of an online fundraising campaign and an August 18 party in Colorado Springs. CO, USA.  Donations will benefit the Lung Cancer Alliance. Please join me in this celebration by making a donation, whether in person or online.  No amount is too small.

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.

Facing My Own Mortality

I participate in online lung cancer support groups. It seems like there is a daily post from a caregiver or family member regarding their loved one's lung cancer death. Hearing these stories makes me sad for those families. It also makes me angry. I HATE lung cancer. But after hearing and processing the horrible news of another life lost, my thoughts go elsewhere. I know every lung cancer is different. I think to myself, that's not me, that's not my cancer. I'm so lucky to be as well as I am.

This last week there was a death that hit me hard. It took my thoughts to places they haven't gone. It wasn't a lung cancer death. It was the untimely death of a former co-worker. He was a passenger in a Jeep Cherokee that missed a turn on a mountain road and went down a ravine. Two of the five people in the vehicle died.

It's so unfair. Jacob was a young, smart, healthy, fun loving prankster with his whole life ahead of him. Why is he gone and I'm still here? I have stage iv lung cancer. Shouldn't I, the one with the terminal illness, be gone and Jacob should be here living out his life and carrying out his practical jokes?

I have heard of survivor's guilt. I thought I experienced it. Well, whatever I felt while reading news of a lung cancer death was nothing compared to the feelings that have come up since Jacob's death. I know it sounds strange to experience survivor's guilt in this situation. I wasn't in the accident. He didn't have lung cancer.

I was diagnosed with stage iv lung cancer in August 2015. To tell you the truth, I've thought of my impending death. It's inevitable that one day lung cancer will take my life. I came to terms with that early on. What is difficult to process is the new thoughts of, why am I still here? I have never questioned that. My thoughts, until now, have always been along the lines of, "how lucky am I to be here", not, "why aren't I dead yet?"

I'm a genuinely happy person. My blog is Peace Lungs & HAPPINESS. Can I get back to my happy go lucky self again? I've heard the saying, you can't unsee something. Can I unthink these dark thoughts? Will I always doubt my current existence on this earth? They also say, time heals all wounds. I hope that in time I can get back to appreciating and enjoying every moment of the rest of my life without questioning it.

Good News Spreads Fast

My Lung Cancer Survivors Super Bowl Challenge is going well. At the moment, I'm in the running for the third place prize. I'm approaching the halfway milestone of my $10,000 fundraising goal.

#RallyAroundLisa

I've turned to social media to advertise and promote my fundraiser and spread awareness. One of these methods is Thunderclap. You can help promote  my Lung Cancer Survivors Super Bowl Challenge Fundraiser. By signing up you will help share a scheduled message on Twitter, Facebook and Tumbler.

Click HERE to join my Thunderclap.

What is Thunderclap?

Thunderclap is a tool that lets a message be heard when you and your friends say it together. Think of it as an "online flash mob." Join a Thunderclap, and you and others will share the same message at the same time, spreading an idea through Facebook, Twitter, and Tumblr that cannot be ignored.

I need the support of 100 people before December 26. With Thunderclap, I'm not asking for donations. I just need 100 people to go to my Thunderclap and click "Support". That's it. If I reach 100 clicks to support me, my Super Bowl Challenge will blast out over social media, one time, at the same time. There is potential of sharing my fundraiser with thousands of thousands of people. 

Click HERE to join my Thunderclap.

Thank you for your support.

Giving and Receiving

Giving Tuesday was followed by Overwhelmed Wednesday. I expected a few additional donations to my Lung Cancer Survivors Super Bowl Challenge on Tuesday due to the nature of the day. But I never imagined I would receive nearly $2K in one day. That amount is amazing. I'm so grateful for everyone's generosity.

Giving Tuesday was a great big success. I created a one day Facebook fundraiser that will be matched by the Bill and Melinda Gates Foundation as part of their Giving Tuesday campaign. That means the $742 that was donated will become $1,484!!!! In addition to the donation made directly at my contest site, the Giving Tuesday donations totalled $1984!!!!

I have taken advantage of opportunities presented to me to represent the lung cancer community. One is the chance of going to the Super Bowl, the Pro Bowl or the Taste of NFL as a lung cancer patient advocate while raising awareness of lung cancer and the need for research funds.

At this point 50% of the donations collected will be be donated to the foundation of my choice, the International Association for the Study of Lung Cancer (IASLC). When my donation total reaches $5,000, 80% will be donated to IASLC.

Thank you to everyone that donated and shared my fundraiser links. Because of you I'm currently in the top running for the Lung Cancer Survivors Super Bowl Challenge.

The Facebook fundraiser was a one day event. But the Lung Cancer Survivors Super Bowl Challenge is not over. You can still donate until January 1, 2017.

Click the link on my blog or HERE to donate today.