A Lung Cancer Diagnosis

November 2018: I have posted about my different diagnoses throughout this blog. It's been a while since I've posted about being diagnosed with lung cancer.

It all started three years ago in August 2015.  I was in the first years of a serious relationship with my boyfriend, Jeremy.  We were passed that milestone moment when you realize your significant other is your forever person.  We were planning our future together and talking about getting married.

It was also the beginning of my career as a letter carrier.  By choice, I was on walking routes. I was walking approximately 35-40 miles a week.  I would walk anywhere from 6 to 12+ miles a day. Carrying mail was more than a job. It was my career and my passion.

I would run at least one 5k (3.1 miles) a week after work with my runner's club.  I was enjoying running for the first time in my life. There were times I'd run two or three 5k's in a week.  Running wasn't just the annual 5k for charity any more.

As active and healthy as I was, I had a persistent cough and some random breathing issues.  There were a few times between late 2014 and July 2015 that I felt a heaviness in my chest, something similar to bronchitis. Each time there seemed to be an acceptable explanation (post nasal drip, virus) to justify the breathing problems.   It didn't seem too serious at the time.

When breathing issues interfered with exercising and running, I decided to get things checked out. I went to  a doctor for my breathing problems.  I had a chest x-ray. The result...a mass in my right lung.  Further testing revealed a devastating diagnosis.

We heard the words, “inoperable”, “incurable”, “terminal”.  What seemed to be minor turned out to be inoperable, incurable, stage iv lung cancer.  It was late stage, stage 4, non small cell lung cancer. At the time of diagnosis, lung cancer had already spread throughout both lungs and to my spine.  

I asked:

• How long to I have to live?
• How did I get lung cancer?
• What do I do now?

Statistics said I had a 3 to 5% chance of living one year.  Lung cancer in young healthy adults, especially women, was on the rise.  My lung cancer is caused by the EGFR gene mutation. It’s not genetic or something I inherited from my parents. It’s genomic, something in my DNA has changed and mutated.

The mutation meant I would have targeted therapy treatment instead of iv chemo.

Days before we heard, “incurable” and “terminal”.  Now we heard something promising. I had a chance at living a normal life.  It’s almost like, “normal life” echoed as it came out of my nurse navigator’s mouth.

Over the years my treatments have been targeted therapies and radiation treatments to my lung and spine.  I take a chemo pill once a day that targets the mutation that is driving my cancer.

I was able to stay at work and continued living my active otherwise healthy life. Things were as normal as they could be with quarterly PET scans thrown in to monitor disease progression. Or in my case, we watched tumors and nodules shrink and disappear. the targeted therapy did it's job. I was No Evidence of Disease within 8 months.

Our moment of relief lasted 6 months. Then the nodules and tumors returned in my lungs. We monitored that growth for 10 months. In the mean time I had a bronchoscopy biopsy to test for a new mutation. I switched targeted therapies because I tested positive for the t790m mutation.

Life is back to normal, for now. Well, as normal as it can be with quarterly scans and blood labs thrown in to monitor for disease progression.

x

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.

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.

We are gathered here today to get through this thing called life...

Yesterday was a bittersweet day. Lung cancer has a lot of ups and downs.

Elizabeth Dessureault lost her life to lung cancer yesterday.

Elizabeth Dessureault, wife, mother, lung cancer advocate and fighter

She was so young and vibrant. It's just not fair. She was very positive through all her ups and downs. She raised lung cancer awareness and spirits with her attitude and just breathe bracelets.

I have a From Lizzie's Lungs bracelet. It was a gift from another lung cancer survivor, Nicole Russell. Nicole's 1 year cancerversary was yesterday. A cancerversary is the one year anniversary of one's lung cancer diagnosis. She is beating the odds, changing the face of lung cancer and surviving stage iv lung cancer for over one year. Congratulations Nicole. I love you and want to thank you for your friendship and support on this roller coaster called lung cancer.

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.