Saturday, December 30, 2017

A Place with no Space or Time

This will be as condensed as possible fipossible for my first  entry post stroke and I'm attempting to do this on my phone.
I optedfor the moyamoya bypass surgery to prevent probable stroke. The surgery was asuccessful in returning blood flow to my brain. But unfortunately, I did suffer a stroke just days after the surgery. What followed was emergency brain surgery to repair the bleed, two hospital stays, two infections, a coma, and ultimately, partial loss of the use of the left side of my body. I'mappy to report report that after a  21 day stay and acute physical, occupational and speech therapy, at Santa Clara Valley Medical Center in San Jose, CA, I'm able to walk, talk, make phone calls, and feed myself.

It's been incredible to have this happen and lose track of time and dates. We didn't even realize it was Christmas when it came and went. The original plan was bypass surgery on 12/9 with a 2-3 day hospital stay. I was going to fly home on 12/13.
Another way I lost track of time is the stroke took my ability to read a clock correctly. My brain is only processing the right side of the clock. It's a strange and confusing feeling to look at a clock and not know the time. This Is something you've done as a child. After ,40 some years, you look and you don't have to think. You just know the time. I've been working on retraining my brain to look at the clock
differently. It's getting easier. But it's actually a process to just look up at the clock and ,"know" what it says.

Thursday, November 23, 2017

Thanks and Giving

I have so much to be thankful for.
I can't possibly start to list them all. I'm scared I would forget someone. The obvious ones:
  • I'm thankful for the power of prayer and positive thinking.
  • I'm thankful for modern medicine.
    • Lung cancer treatments have kept me alive with a quality of life that is allowing me to be brave enough and my body strong enough to tackle this new brain disease battle.
  • I'm thankful for my continued life.
    • I was diagnosed with stage iv lung cancer in August 2015. I was recently diagnosed with an ultra rare progressive brain disease.  But we know from researching my cancer brain scans, I've been living with this for over 2 years.  It's even possible I was born with this disease.  We may never know the cause or the time it developed.
  • I'm thankful for the love and support from my family and friends, near and far.
    • I'm also thankful for the friends that are more like family to me.
    • I only know some of these people from being online.  I know I must have met a few of these distant relatives when I was a child and when I was younger. I'm thankful we found each other and are able to stay in touch thanks to Facebook.
  • I'm thankful for the kindness of strangers.
    • This comes from many places.  It overwhelms me at times to think about the individuals, foundations and organizations that come together to support me, my fundraising, my wellness and my quality of life.
It's the giving season.
Please consider making a donation this Giving Tuesday.
I can't thank the people that have already donated to help me get through my trip to California and recovery from my upcoming brain surgery.  All our savings has been spent on my lung cancer battle.  There is no savings and very limited paid time off work to get us through the next 10-12 weeks.

A Go Fund Me account has been set up to help collect needed funds to get me through this difficult time.  To make a donation to my Go Fun Me account, click the DONATE button.
Lisa Moran Battles Brain Disease
If you prefer to make a Tax Deductible donation this Giving Tuesday, please consider donating to these charities that are near and dear to me.
This organization has provided me with free reiki and healing touch sessions that's relieved me from physical pain and stress.
Now, on to my Thanksgiving Traditions.
As I'm posting this blog entry, I'm watching the Macy's Thanksgiving Day Parade. To attend in person is a bucket list item of mine.  I have the mac n cheese in the crockpot. Some of you know my "secret ingredient".  Since moving to Colorado, Thanksgiving weekend 1999, it seems more traditional to have Thanksgiving dinner with friends than family.  Jeremy and I will be joining friends for dinner today. For those of you that have opened your homes and set a place at your thanksgiving table for me,

Wednesday, November 15, 2017

Brain Disease and Being My Own Advocate

When I was diagnosed with the ultra rare brain disease, Moyamoya, I thought that it was a good thing to treat with baby aspirin.  But after thinking about that for a day, it actually meant, take baby aspirin and wait until I have a stroke before treating with surgery.  The more I thought about it the worse that idea sounded.  Wait until I have a potentially deadly neurological event?  Hell no!

My research for options lead me to the Stanford Moyamoya Center in California.  Dr. Gary Steinberg is an expert in his field and has performed over 1400 Moyamoya surgeries.  I sent my scans to Stanford for a second opinion.  It's a wonderful service.  The Stanford Moyamoya Center and Dr. Steinberg reviews scans and gives second opinions at no charge to the patient.  No insurance, no out of pocket.

This second opinion just confirmed my doubts I had with the Denver neurologist.  He just didn't have experience with and knowledge of Moyamoya.  My right interior carotid artery is 100% blocked.  I'm at a high risk of stroke, aneurysm, TIAs and/or seizures. Although, taking baby aspirin and waiting for any one or more of those things to happen is an option.  Surgery that can potentially keep me from ever having a traumatic neurological event is also an option.  Dr. Steinberg's approach to my case is, let's take care of the problem before there is a problem.  I'm so lucky to have this diagnosed before any serious problems.

Maybe it hasn't sunk in.  Maybe having 2 years of lung cancer under my belt has prepared me for another incurable disease.  It's just another bump in the road of life.
Clipart, not Lisa's actual brain
I started a Go Fund Me Campaign to help with all the added expenses that will go with brain surgery and recovery.  You can read more about my brain disease battle and donate by clicking  HERE.

Wednesday, September 27, 2017

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.

Saturday, August 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.

Tuesday, June 13, 2017

If No One Fights Alone, Why Do I Feel So Lonely?

I've wanted to make this blog entry for some time. It's been a working title for weeks. I've been searching for the correct wording and message to convey my feelings without making it sound like a pity party or a guilt trip.

Then this week someone did it for me. I read Linnea Olson's latest blog and it said just about everything I've wanted to say and more.

It’s a jungle out here

Pretend for a moment that one hundred people are standing in front of you. The only thing you know about them is that they all have lung cancer. One at a time, each person approaches you and then shares some intimate detail about their lives. Sometimes you sense that you have much in common with the speaker, sometimes little. In each case you get an overwhelming sense of their humanity.
You are thinking about how you would like to get to know some of them better when I drop a bombshell: only eighteen of these people will be alive in five years.
It shocks you but I assure you I have not told you this merely for dramatic effect; statistically speaking, this is an actual scenario. The five year overall survival statistics for all stages of lung cancer cancer are only 18%. At stage IV, that number drops to 2%, or just two individuals out of one hundred.
Statistics only tell part of the story because numbers are not nearly as compelling as living, breathing human beings.
Now imagine what it’s like to be one of those hundred; that you too have been diagnosed with lung cancer; that you too will fall somewhere along this statistical curve.
It is a terrifying feeling, and isolating as well–as many of us feel that friends and family can’t really comprehend the sometimes debilitating anxiety that is part and parcel of our diagnosis.
We often combat that feeling of isolation by connecting with others people living with lung cancer–through support groups, social media, summits, or advocacy work. However, this network can become a double edged sword, as we are now invested in each other’s outcomes. When one of us passes away, a collective shiver runs through the entire community. We grieve, we rage, but we also rightly wonder if we might be next.
Over time, it becomes a trauma–this mix of fear and sadness. And for those whose cancer is considered incurable–and in the case of lung cancer, that would be most of us–there is no post to our traumatic stress. It is ongoing, or OTSD.
We focus on staying alive even as we worry–constantly–about dying. And, because we often don’t look as if we are ill, it is very, very difficult for those around us to fathom what it’s like to live on borrowed time.
Can you plan a vacation six months from now? Is it worth spending the money to get your dental work done? Will you be there when your kids graduate from high school?
As a society there is a great deal of emphasis on planning for the future. When you are living with cancer, it often feels as if the future has nothing to do with you.
I’ve now been living with the idea of dying for over twelve years–more than 20% of my time on earth. How do I do it? One day, one moment, one person at a time.
xo dedicated to all we’ve loved and lost–far too young, far too many
It's not easy living in the 2%. But I'm still living. It's tough being so far away from most of my friends and family. I recently participated in a lung cancer walk. I was a speaker and shared my story at the event. If my mom and sister wouldn't have come from out of state, it would have been me and Jeremy, team of two.

At times it feels like it's just me and Jeremy against the world, against lung cancer and against the clock. More often than not, lately, it's me against him and him against me. We butt heads over the tiniest of things.  In the past we've recognized this behavior and realized it wasn't us. It's the stresses of lung cancer on our relationship. So for those periods of time, it's just me against everything I have and everything I don't have control over.

The next time you see me begging for your support for an upcoming event and we live in the same town, it's not all about the money and donations. It's about needing time together and your presence in my life, how ever long that may be.

Friday, May 12, 2017

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.

Thursday, May 4, 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.
Having Optimistic Perspectives Everyday.

Friday, April 21, 2017

You Take the Good with the Better Than Bad

I had a pet scan and an appointment with my oncologist this week. The pet scan showed what appears to be more evidence of progression at my primary lung tumor spot in my upper right lobe. We've been monitoring this since October 2016.
Lisa Moran, April 19, 2017
The next steps will be two biopsies. Blood work has already been sent to Guardant for a liquid biopsy. Hopefully, something will show up on this test. It's my second Guardant biopsy. The first didn't show anything, not even my EGFR gene mutation. I will also do a needle tissue biopsy.

With the biopsies, we are looking for any newly acquired lung cancer mutations and we need to confirm it is lung cancer progression instead of delayed radiation scarring. If it's cancer, I will be adding radiation to my treatment plan.

The scarring is a possibility. But my blood work numbers have continued to increase, a sign of progression. Plus, my radiation oncologist office called to schedule my radiation consultation. If you ask me, that's kind of putting the cart before the horse to schedule a treatment consult before my biopsy.

My oncologist said this is a good report. My targeted therapy, chemo pill, is still working throughout my body. There are no new nodules or tumors. There is only this one location of possible progression. Radiation treatments should take care of it.

Several people have referred to this as a bump in the road. It feels more like a detour. Either way, I'll be able to get back on track.

What can make a setback appointment a little more acceptable? A visit to an art exhibit to see paintings and drawings from Monet, Renoir, Picasso, Degas, Matisse and others. Masterworks is currently on display, for free, on campus at my cancer center. I'm thankful for the opportunity to see these works of art in person.

One other good thing happened at my appointment. I was presented an opportunity to participate in a clinical research trial. I submitted blood samples to help research and improve the future of liquid biopsies. Hopefully, one day, because of my participation in this trial, invasive, surgical biopsies could be a thing of the past.

Thursday, March 23, 2017

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.

Sunday, February 26, 2017

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.

Thursday, February 9, 2017

Party With a Purpose

Eighteen years ago, in 1999, I wanted to start my own business. I dreamed of being a party/event planner. But I also wanted to work in the non profit sector. I came up with an idea of planning parties for fundraising events. An example would be a birthday party. It's your birthday. Instead of having a party and receiving gifts, you ask your guests to make a donation to the charity of your choice. I even named my business, Party With a Purpose. But I had just moved to a new state. I was not familiar with the town and vendors that I would need to collaborate with to plan successful events. Party With a Purpose never came to life.

Fast forward to 2017. I won a trip to the Taste of the NFL in Houston, TX. The Taste of the NFL rallies the country's top chefs and the NFL's greatest players to raise money in support of food banks throughout the United States.  They raise funds online, Taste of the NFL events hosted by individual NFL teams and the Super Bowl Taste of the NFL -The Party With a Purpose®.

Yes, Party With a Purpose!!!!! Something that I dreamed of so long ago is real. And I got to be a part of it. I want to thank Team Draft and the Lung Cancer Survivors Super Bowl Challenge for the opportunity to be a part of this year's Party With a Purpose.
I got choked up in my video because of the special meaning behind Party With a Purpose.

Saturday, January 21, 2017

Balancing Act

People that don't know me can't look at me and know I have stage iv lung cancer. On the outside I look perfectly healthy. There are mornings that I look at myself in the mirror and can't believe I have stage iv lung cancer. There are moments where I feel perfectly healthy.

Next week is my quarterly scan, blood work and follow up with my oncologist. This week is my quarterly freak out with scanxiety. This is the week I fight with my brain and body to think positive and feel good.

Like clockwork, just in time for my scan, I have issues that could be cancer related or it could just be nothing. It could be cancer progression or it could just be cancer treatment side effects. Or it could just be NOTHING.

In the past I've taken pride in myself for being forever optimistic. It's something that just comes natural. I don't have to force myself to think positive. It just happens. As an adult, anxiety and over-thinking hasn't been too much of an issue. That's until I was diagnosed with lung cancer. Now, at times, I find myself not sleeping enough. In those hours I should be sound asleep, I'm wondering and worrying about lung cancer and things that I have no control over.

At least I recognize there is a problem. So in the normal people, daytime hours, I keep myself busy. This is one of the reasons I'm so very thankful I'm able to work. While I'm at work and out delivering mail, I don't think about lung cancer or upcoming oncology appointments. I put on my uniform and I'm in what I call, "mailman mode". It also wasn't hard to keep my mind occupied when I entered the Team Draft Lung Cancer Survivors Super Bowl Challenge. Fundraising, posting updates and planning has kept my mind occupied since my last scan at the end of October.

Last year I followed the contest online. I cheered on my fellow Colorado lung cancer survivors while it gave me hope for my future and for the possibility of entering the contest myself one day. This year I entered and I won! I was the third highest fundraiser. I'm going to go to Houston the week of Super Bowl to attend the Taste of the NFL.
Taste of the NFL, February 4, 2017,
Houston, TX
I take the good with the bad. It's a balancing act. This week the bad is simply manifested thoughts and cancer anxieties. The good is the anticipation of three wonderful, action packed, days in Houston with fun, food and the overall NFL experience. Who knows what next week will bring. Hopefully, a sigh of relief followed by three wonderful days in Houston.