Two's Company. Three's a Crowd.

Just when my lung cancer and I were getting along and learning to coexist in the same body, there's something new in the mix.

I've been laying low and quiet lately because I was waiting on the confirmation of a possible new medical condition.

Last month I requested an early brain MRI, before my routine, annual, MRI date of October. I had some vision changes and other symptoms that sounded like possible lung cancer metastasis to the brain. I got the all clear. No cancer in my brain.

But what I did get was the news that they thought I could have a rare brain blood vessel disease called Moyamoya (moy-uh-moy-uh). In addition to the brain MRI, I needed an additional brain scan called an angiogram ct scan.

I got the results today. It's confirmed. I have Moyamoya.

Moyamoya disease is a rare, progressive cerebrovascular disorder caused by blocked arteries at the base of the brain in an area called the basal ganglia. The name “moyamoya” means “puff of smoke” in Japanese and describes the look of the tangle of tiny vessels formed to compensate for the blockage.

I am asymptomatic. I have no symptoms or signs of stroke or mini strokes. So, surgery is not my line of treatment at the moment. I will probably have to take a baby aspirin once a day because I am at risk of stroke.

My case will be presented at an upcoming neurovascular conference. It sounds like the neurology version of the lung cancer tumor board.

Not only am I a mutant because of my gene mutation driven lung cancer, I'm truly one in a million. Moyamoya is that rare. I will be doing some research regarding gene mutations and Moyamoya. If there a connection between my lung cancer and Moyamoya, I'll find it.

We don't know how long I've been living with this. It's even possible I was born with this disease. It hasn't caused any issues in the past. I'm hoping it doesn't cause any issues in the future.

A Clinical Study and a Collapsed Lung

Twenty-one days ago I participated in a clinical study. At one point I thought a clinical study and/or trial meant you are a guinea pig and even though you were seriously or terminally ill you got the placebo (sugar pill) or the trial drug that may or may not work. That's not the case. There are many different types and stages of clinical trials.

To learn more about clinical studies, CLICK HERE.

The study I took part in was to improve blood biopsies. There was no medication to take or multiple trips to the doctor to be examined or monitored. I simply had to agree to submit some vials of blood.

Twenty-one days ago I remembered what it was like to have to go through a surgical biopsy. For me, that was traumatic (my first surgery) and painful with a three week recovery. I submitted a few vials of blood to improve a non-invasive procedure to diagnose lung cancer. I was all for that.

If you thought I was on board twenty-one days ago, I am now the head engineer on that train that can't go fast enough. This week I was scheduled for an outpatient lung biopsy procedure. In and out, they send the tissue to pathology for diagnosis and we know what we are dealing with. It's a common procedure, but there are certain risks that are discussed before you start. One of those risks, ever so slight, is a collapsed lung. For the biopsy procedure they are putting a needle into your lung to capture tissue. In a sense, they are puncturing your lung. In most cases, after the procedure, the lung closes on its own and heals up at the puncture site. Not in my case. My lung collapsed.

Lisa at University of Colorado Hospital with DC, her #hopebot

I was admitted into the hospital and had to have a chest tube put in place to help "re-inflate" my lung. Although, not as traumatic as my first surgery, it was my first overnight hospital stay, EVER! 

I can't wait for the day when a lung cancer biopsy will be a simple office visit and a blood draw only.

Please note: these are descriptions of my medical experiences, how I understand them, in my laymen's terms. The procedures mentioned and defined may not be 100% medically accurate/correct or my doctors words. Thank you.

How Not To Let Lung Cancer Win

I completed my Livestrong at the Y program. I tried not to miss any Livestrong days at the gym during the program. There was one particular day that I was feeling very down and tired. I just didn't have it in me that day. But my boyfriend gave me a pep talk. If you would put his pep talks in a book, the title would be, "How Not To Let Lung Cancer Win". Think in this instance he used my, no missed opportunities, motto to remind me that I should not stay at home on the couch that evening.

I went to class. It was yoga that day. Even when I was feeling some pain and I was run down from the day, I was there. I was able to fully participate. The instructor said some words that made quite an impression that day and impacted me for the rest of my life. We were holding a pose and she said something along the lines of, "this is how you are today. Recognize it. But it doesn't mean that's how you will be tomorrow."

In my day planner, in July 2016, there is one day marked with several stars. That was one of the very few days I had no pain, no fatigue, and I almost made it through the whole day without thinking or talking about my lung cancer. Those days are very rare. It's only happened a couple times since starting my treatment in September 2015.

I don't post too much about the bad days. My symptoms and side effects are intermittent. If I do complain, in the next few days things are different. My approach is the "life must go on" method. Almost like, putting the negatives in words will give them strength.

I had goals set for this fall that I've had to change or postpone to next year. Remember how excited I was about running again? I was only able to run a couple of times. At the same time as I started running again my side effects started kicking in. I was getting tired more easily. Stomach and digestive issues that I've been lucky enough to mostly avoid were happening often. I was experiencing new types of pain.  I was training to run the Run the Rocks 5k in October. If mental preparedness was all it took, I would have climbed the incline already. But the downside of feeling so well and living a half way normal life is feeling not so well at the same time.

The body and the mind are strange. Does the comfort of friends and family or the excitement of an opportunity/event overpower the negative effects and feelings caused by my lung cancer and treatment? The answer must be, yes.

Surrounded by my dearest friends and with the support of my family, I was able to complete and even run a good portion of the Run the Rocks 5k last month.

This is what Stage iv lung cancer looks like on a good day....and sometimes on a bad day too.

One Year Ago Today...August 21, 2015

One Year ago today I had my first surgical procedure. My PET scan showed multiple, multiple, tiny, star like nodules throughout both of my lungs. This was discussed at my cancer center's tumor board. A tumor board is a panel of oncologists, thoracic surgeons, radiology oncologists and others involved in diagnosing and treating cancer. My tumor board could not come to an agreement about my scan. It was inconclusive. The star like nodules could either be an infection, I had already tested negative for tuberculosis, or it could be cancer that had spread from the main lung tumor in my upper right lobe.

Until this point, the my biggest medical procedure was my bronchoscopy. I was scared. I've never been under anesthesia before. It was very early in the morning. My boyfriend, Jeremy, my mother and I were driving to the hospital. I had my usual satellite radio station playing, 50's on 5. We're pulling into the hospital. I'm thinking all the scary, anxious, thoughts any normal person that has never had surgery would have. And this song comes on while we are parking the car.

The first thing that comes to my mind is, of all the fabulous fifties songs, THIS will be my last song I ever hear if I don't make it out of surgery!!!???!!!!

Don't worry. I pulled through. 

Just as before, the staff were more than considerate when I voiced my fears of medical procedures while they were wheeling me into the surgery room. One man told me not to worry and to think of it as a day at the spa. I must have been the first to reply with, "I didn't pick out my nail polish color yet." I made myself laugh. He was not amused. 

My next memory is waking up in the recovery room. Of course, my first surgery experience wouldn't be typical. I got used to that recovery room. I was there the entire day. I was supposed to be moved to a hospital room. But there were no rooms at the inn that day.

It felt like it was almost immediately after coming out of the anesthesia that I was told that the stars were cancer. I remember speaking with my mom and Jeremy over the phone because I was still in a recovery area they were not allowed in.  They moved me off to a corner and as out of the way as possible. But at least at that point Jeremy and my mom were able to come back to see me.

After several, long, hours and being moved one more time, I was released to go home to my three week recovery period.

Just My Luck

Since my lung cancer diagnosis there has never been, why me? When talking about my lung cancer, the words, luck and lucky have come up over and over.

• How lucky am I to have a genetic mutation?
• How lucky am I to live in Colorado, so close to University of Colorado Cancer Center and possibly the best lung cancer doctors in the world?
• What luck to be diagnosed just weeks before the World Conference on Lung Cancer in Denver and I was able to register and attend a session.
• How lucky am I to have a beer dedicated to me and brewed in my honor?

That's right! My own beer! My friend, Todd Greiner, is behind this. He made a home brew. I taste tested it in April 2016 during a visit to Ohio. That is when the beer was, I don't know how to say it, 'gifted' to me. He said he wanted me to name it. He would brew the beer in my honor and portions of the proceeds would go to lung cancer awareness and research fundraising. After some brainstorming, we had a name. Lisa's Luck Amber Ale was created.

Todd entered Lisa's Luck in a brewing contest. He won! Fifth Street Brewpub in Dayton, OH is brewing 14 kegs of Lisa's Luck Amber Ale. It will be available on tap mid September.

Todd brewing the first batch of Lisa's Luck Amber Ale

at Fifth Street Brewpub on August 18, 2016

The beer will make it's debut at the Lisa's Luck Tapping Party and fundraising event on September 17, 2016.

Click HERE for details and to RSVP.

Stage IV Lung Cancer/One Year Ago Today...August 14, 2015

One year ago today Jeremy and I went to the appointment to get the results from my pet scan. We scheduled it for lunch time. We had plans to break off of work, go to the appointment, get the info and plan of action and return to work.

With the ct scan only, we knew there was a large tumor in my upper right lobe and I was a good candidate for surgery. We thought we were going to find out when my surgery would be scheduled and what the recovery time would be. We got some very different and shocking information...

INOPERABLE, INCURABLE,

STAGE IV LUNG CANCER WITH METASTASIS TO THE SPINE

We did not return to work. That wasn't what we had prepared ourselves for.

Lisa's 8/14/2015 Facebook post, hours after diagnosis

Not many stage iv lung cancer survivors get to celebrate a one year CANCERversary.

I got to have one hell of a celebration last night.

F*ck lung cancer with LessThan Zero
at the 1 Year CANCERversary Party

Lisa doesn't play bass, but looked the part
while sharing her lung cancer story.

Lisa and Jeremy

I'm sure that out of the ones that get to celebrate the one year mark, not many are NED, like me.

I did not beat lung cancer. I am not cured. I don't get to celebrate winning. I celebrate surviving. My fight is ongoing and has no end.

I would love to say I'm no different than I was a year ago. But so many things have changed.
I've lost:

• Energy
• Half of my hair
• My complexion
• Friendships
• A year of exercise and running
• Fears
• Life as I knew it

But I've Gained:

• A new appreciation of life that I think I could I have only achieved by facing the possibly of death head on
• Friendships
• Fears
• New traditions
• New motto: No missed opportunities...When you have a 4 hour layover in Utah. Don't sit in the airport. Jump in an Uber and track down the best burger in Salt Lake City.

One Year Ago Today...August 4, 2015

One year ago today I had the biggest medical procedure I had ever had, up to that point. August 4, 2015 was my bronchoscopy. This is a scope biopsy to get tissue from my largest lung tumor for testing.

I remember some things about that day. To say I was scared is an understatement. I had avoided all things medical my whole life. I do remember the nurse who was in charge of getting me prepped for the procedure. She made things a little easier after I told her why I was so scared.

It's funny how the mind works. Of all the things I should remember from that day, I remember the shoes I had on. They were my new Keds. I bought them that summer and only really worn them with my retro outfit I sewed for the Brian Setzer concert several weeks before. I called them my "cute shoes".

Brian Setzer concert, Hudson Gardens Event Center, June 14, 2015

While I was laying in the bed, scared, I would look down at my shoes and remember how much fun Jeremy and I had at the concert. And I thought about how I felt that day in my retro dress with my cute shoes.

I remember being in the biopsy room. The Drs. and I looked at my CT scan together. We discussed why I was having the procedure. I was given a sedative and someone either said I would smell or I would taste something bad. The next thing I know, I was back in the first room with the nurse and my mom.

I know someone from pathology looked at the biopsy that day, immediately after the procedure. Someone told my mom that it looked like cancer. They would send it off for testing and it would be several days before we would receive a confirmation.

I know my mom told me this news at some point that day. I don't know if it was the sedatives and my selective memory. I can't remember that exact conversation or the location of the conversation. Was I still in recovery? Were we in the car on the way home? Or was I at home?

I do know that I stayed off the Google searches. I didn't want to waste time searching for ailments and diseases I may or may not have. I waited to Google until the biopsy results came back and were official.

One Year Ago Today...July 9, 2015

This is the first in a series of, "One Year Ago Today" posts.

One year ago today, on July 9, 2015, I met the man that ultimately saved my life.  One year ago today was my first appointment with my (then first and new) primary care physician, Dr. C. David Bird.

I explained to him I was having some shortness of breath and a persistent cough. I told him of my intermittent breathing problems and my brief, two appointment, history of going to two different urgent care type facilities and being told told, both times, (Dec 2014, June 2015) that my lungs sounded clear, when obviously to me they didn't feel clear.

At my Dr. Bird appointment I had an xray. That xray showed something in my upper lobe of my right lung. Dr. Bird said, although it may be the cause of my breathing problems, an xray wasn't enough to go on. He ordered a follow up CT Scan. The rest is history.

Why is it important to have a primary care physician? For me more frequent check ups, with one doctor, may have meant an earlier detection, possibly before a stage iv, inoperable, lung cancer diagnosis.

December 2014, I went to an urgent care type facility with what I thought was bronchitis. I was told my lungs sounded clear and my cough was from post nasal drip. Now, at the time I did have a terrible head cold. But at the appointment I made it a point to tell them that I coughed constantly, even without the head cold. I remember saying, "Jeremy says I cough all the time." No xray, no additional questions about my cough, no follow up suggested. I was given sinus meds to clear my head and sent on my way, like every other person with a head cold and post nasal drip that winter.

Fast forward to June 2015. Again, I thought I had bronchitis. I went to a different urgent care type facility. I told this Dr. that I felt like I had bronchitis and I coughed blood one time. I was told my lungs sounded clear and I had the tail end of a virus that was going around. No xray, no additional questions about my coughing blood, no follow up suggested. It really was one time, one cough, but I COUGHED BLOOD! I was given cough medicine and sent on my way, like every other person with that virus last summer.

It's so frustrating to think about stage iv lung cancer having the same symptoms of other, easy to fix, ailments.  It's also frustrating to think about the in and out exam offices and the lack of attention to individual patients. Or is it the lack of lung cancer education in the medical community altogether?

I owe my life to Dr. Bird.  Dr. Bird, a physician that listened to me and followed through until we knew exactly what we were dealing with.

One year ago today my life changed completely. It was just a few weeks later I would find out exactly how much it was going to change.

Seeing Red on Mother's Day

Today we celebrate and high five all our moms.  But please remember this when you see the all the pink ribbon pics and pink baseball jerseys...
Every five minutes, a woman in the U.S. is told she has lung cancer, making lung cancer the most common form of cancer in women and the lung cancer death rate in women has more than doubled over the past 35 years.