A Week in My Life

A Little History

Since I began the clinical trial for Opdivo back in July 2013, my life was returned to me. While I was on chemo, there were quite a few days when I wondered if the fight against lung cancer was really worth it.

Chemo made me so violently ill that I can remember being curled up on the bed with my Sheltie Barney wondering how in the world I could endure an existence that put me in such misery, time after time. I began to think that if this is what life is going to be like, let me off of this train sooner rather than later.

With chemo, I would feel good for a day or so after treatment (thank you, steroids!), but then the nausea and vomiting and fatigue would set in. For two or three days, I could get out of bed or off of the couch only to go throw up. I couldn't eat or drink. It took every ounce of willpower and strength to walk 10 feet into the kitchen.

I couldn't live. I could only exist ... and it wasn't a pleasant existence.

Fortunately, those horrid days lasted for less than a week. By the second week after a chemo infusion, I was feeling much better. I could eat and drink again. I could make myself live a somewhat normal life. By week three, just in time to go back for another infusion and begin the process all over again, I felt pretty good.

For the first infusions, I was able to keep my spirits high. I could look at the bright side and focus on what I could do, rather than on what I couldn't. But, the longer the process went on, the harder it was becoming not to get depressed during that third week. I was knowingly getting ready to submit again to a treatment that was going to totally knock the wind out of my sails. Is that insanity, I wondered? Everyone knows Stage IV lung cancer patients don't live long, I thought, so why was I making myself so miserable for at least a third of the time I had left on this earth?

Chemo treatments went on for about six or seven months. Finally, my doctor said we would take a break from treatments. He hoped the tumors would remain stable, but they didn't. The minute we stopped treatments, they started growing. All of the headway we had made with the chemo was lost.

That's when my doctor asked me if I wanted to begin a new regimen of chemo or start a clinical trial. The chemo was expected to be less effective while making me sicker. Ugh. No thanks. Clinical trial, here I come!

I didn't expect the clinical trial to do anything for me. I expected to be a test subject so that decisions could be made for future cancer fighters.

I could not have been more wrong! From the moment I started the trial, I started feeling better. And my tumors were stopped in their tracks. And, now, 2-1/2 years later, my tumors are still stable and I still feel great!

So, I thought some of those reading this blog might get a little bit of hope from reading about my week last week. I think you will agree that it does not sound like a week in the life of a typical stage IV lung cancer survivor. The good and surprising news is that many other Stage IV lung cancer thrivers DO have similar weeks! Guys, there is HOPE ... and lots of it!!

Fun, Fun, and more Fun!

It has taken me awhile to get this blog written. The reason? I've been too busy to sit down and write it! Don't you think that's a good thing?

The week I sat down to write about started with a Run As One agility trial. In order to have a trial, the barn has to be readied. Linda Lelak and I both start trial weekend on Friday afternoons, helping with set-up. It requires the lugging of equipment from place to place. By the time these pictures were taken, we were nearly finished emptying the stall where everything was stored and carrying it out to the barn.

Since the dogs came to the trial on separate days, we took the opportunity for a photo shoot on Friday after we got things set up!

Saturday and Sunday - 4 days compressed into 2

Cotton got to play on Saturday; Barney on Sunday. They both had a lot of fun! Barney finally earned his last Open Touch N Go title, so he'll start in Elite at the next trial. We've been chasing that title for about two years so I was really excited when we had a clean run!

Here is Barney's Touch N Go run. He had a good day. He was oh-so-slightly too slow (he missed making time by less than half a second) in Tunnelers to earn a qualifying score, but he qualified in Touch N Go and in his Regular run.

Cotton wasn't quite as successful! She DID succeed in having a great time, though. And, in all honesty, that's what it is all about. Just to be fair, here's one of her runs. You can see that she runs very happy!

But, this is not so much about agility as it is a chronicle of my week. So, let's move on.

Saturday, November 14th, was a busy date. As I mentioned, I ran Cotton in agility during the day. For the evening, there were three possibilities for activities.

First, American Cancer Society wanted me to speak at a semi-formal fundraising event they were hosting. I frantically looked for a way to get a cocktail outfit without spending a lot of money. I run dogs in barns; I rarely attend events where fancy clothes are necessary. My friends really came through with offers for help. It was heartwarming.

About the time I figured out what I was going to wear, I got an email saying that the event had to be canceled due to lack of ticket sales. I was sad on the one hand ... and breathed a sigh of relief on the other. I hated that the event was so poorly supported that it had to be canceled.

I had barely relaxed from having that event canceled when I got a note from my doctor's office wanting to know if I could attend a Dallas Stars hockey game on Saturday night. I was excited to get the offer to participate with Chris Draft's Team Draft Foundation, mainly because a good friend and fellow lung cancer survivor was going to be there.

Now, there is another outfit dilemma. I have no Stars jersey to wear. And, once again, I don't want to spend $50 to $100 (or more) getting one!

Just about the time we decided we would just bite the bullet and get something, I got yet another email saying the event was canceled for Saturday night and would be rescheduled. Ahhh, Saturday night is going to be a night of relaxation after all.

Oh wait! Here comes an invitation to a good agility friend's birthday party - chips and salsa and nachos ... This event did not get canceled! It was a lot of fun to see everyone. I am the only one of that particular crowd who runs NADAC agility. The others run in AKC and/or USDAA, two venues I eschewed after my cancer diagnosis, so it is like a reunion when we get together for a meal.

I came home from the party and did a quick load of laundry (quick = about 2 hours) and crashed so that I could get up before daylight on Sunday.

While I ran four runs on Saturday with Cotton, I only ran three with Barney on Sunday. I knew that I had another obligation to meet on Sunday night and I was afraid there wasn't time for more runs.

On Sunday night, I had to be in Dallas by 5 PM for a Free to Breathe meeting. This is a foundation that was started by Dr. Joan Schiller, currently the head of oncology at UTSW, and a lung cancer expert. Like LUNGevity, they host a 5K walk to raise money for research.

They also do other events. I had previously worked at one of their tables at a Dallas Stars game doing lung cancer awareness. I've tried to determine the major differences between LUNGevity and Free to Breathe. From my own perspective, they both do great work raising funds for research. LUNGevity is also focused very much on lung cancer survivors. They are all about offering HOPE to those of us fighting the disease. They do a wonderful job of it.

Sherry and I have HOPE ... and lots of it!

Free to Breathe, I have decided, has a primary focus, besides raising funds for research, of increasing awareness about lung cancer. You will find them at health fairs and other events.

I'm happy to be involved with both organizations because I believe offering survivors and thrivers (a term I learned from Free to Breathe and that I absolutely love) hope and information is incredibly important. Lots of us are living still. Our prognosis is not as dark as it was. This is vitally important information for people with lung cancer. Don't give up. Never give up.

But, I believe it is equally as important to get the word out to the masses that lung cancer attacks more people than any other cancer besides breast. It kills more than breast, prostate, and colon cancers combined. There are two reasons why I believe lung cancer is so deadly:
1. people believe it is a smokers' only disease, which couldn't be further from the truth and 2. it is usually without symptoms until it has advanced to stage 3 or 4.

I had a lot of fun meeting everyone at the Free to Breathe event. I hope I will have a lot of opportunities to work with them ... as well as with LUNGevity.

Monday

I kept thinking that cramming four days into two over the weekend would not be a problem because I would just rest while I was at chemo. Chemo day (a misnomer, really, because I don't get chemo, I get immunotherapy ... but both require an infusion and it is just easier to call it chemo day!) is usually a long day. It begins with a blood draw. Then, I wait an hour or so while the blood is read. Then, I have a visit with my favorite oncologist in the world. He orders the immunotherapy. It takes an hour or so for the pharmacy to get the life-saving concoction put together. Then, the infusion begins. The drip only takes an hour. Still, even if everything is running like clockwork, which it doesn't always, I am there for a minimum of 3.5 hours. Usually, it is more like four or five hours.

I love most everyone at UTSW so the time goes pretty fast. Nevertheless, it is a long day. I do not usually rest. Monday was no exception!

Tuesday

I actually had nothing to do on Tuesday. I usually have agility practice, but instead, we had rain. As much as I love my agility lessons, I was happy to have a day off. I did very little besides rest.

Wednesday

On Wednesday, I met a couple of friends for a movie and a late lunch. I never went to the movies until I met Anna. Now, I go at least once a month and often two or three times a month! It is a nice way to lose yourself in a world that doesn't usually include cancer.

Thursday

Thursday was an exciting day! I say frequently that having cancer has opened many doors for me that would have never opened otherwise. I can't exactly be happy that I have cancer, but I can tell you that I am enjoying my life. A lot.

So, Thursday is usually an agility training day so it is always a day I enjoy. But, this Thursday, was something different. Robert and I went back to UTSW, this time to do an interview with WFAA, Channel 8 news.

It just so happened that the interview took place on the day of the Great American Smokeout. So, instead of being on the news once, I should end up being featured twice.

http://www.wfaa.com/story/news/health/2015/11/20/great-american-smokeout-help-smokers-quit/76130726/

Advertising UTSW's new initiative

Waiting on the reporter to arrive

Dr Gerber explaining what my CT scans mean

It is with mixed emotions that I was part of the feature above. I surely want people to know that they can and should quit smoking. But, I don't want anyone to get the mistaken idea that only smokers get lung cancer. Because nothing is further from the truth and way too many people die because they think they are immune.

It only takes lungs to get lung cancer. That's it.

We are anticipating that another segment will be aired on November 30, during the 4 PM news. I guess I will probably not see it live as I will be having chemo again. It would be highly unusual for me to make it home by 4, especially on a Monday after a long Thanksgiving holiday. Thank goodness for DVRs!

I had so much fun doing the interview. I love my doctor. I love the nurses and aides. It was especially fun that some of them got to be on TV, too! Sonia, the health reporter, was so nice. I felt like we were old friends! And, finally, I had an interview where my mouth didn't get dry and I didn't experience a moment of nervousness. Yes!!!!

RW and Kim had come in from New Mexico on Wednesday. They came over to watch the news story with us. Mom came too. Afterwards, Mom took us out to the Goldmine for dinner. It was a really fun day.

Friday

On Friday, Linda and I had agility class. We always have so much fun. Both Barney and Louie did an excellent job getting great distance and following our directions. I love to trial, but I love class even more.

After class, RW and Kim came over to help me clean house a bit before we went after Jimmy and Jonah. The kids are spending a little over a week with their dad ... and were they excited!!!

Grandma ... not the camera AGAIN!!

It is always great fun to have the kids, but it does turn our quiet existence a bit topsy-turvy! The boys have a lot of energy!! And, especially when they first arrive, a lot to say!

Saturday

On Saturday, we had a great time. Linda, Mom, and I were signed up to work a Lung Cancer Awareness table for Free to Breathe at a Stars ice skating rink in Plano. Genentech was sponsoring a Free Skate for kids and adults as part of the awareness event. So, we all loaded up and headed to the Dr. Pepper StarCenter in Plano.

Neither the kids nor the dad had ever been ice-skating before. They did really well. By the end of the Free Skate, Jonah was skating on his own. Jimmy took off on his own from the start.

We all had a wonderful time. At the Awareness table, we got lots of interest and gave away many blue (LUNGevity) and white (Free to Breathe) bracelets. A few people took more information.

Sunday

On Sunday, I totally forgot that I am no longer young and did something I haven't done in years. I got up at 1:30 AM to get ready to go to a dog agility trial in Oklahoma with Ed and Linda and five dogs (three border collies, a Sheltie, and a Pom/Eskie). I picked Linda up at 2:15 and we headed to Ed's. Because there wasn't much traffic, we arrived in record time! The house was dark and quiet!

Linda and I, like teenagers, were outside with the dogs, trying to be quiet, but also having fun. She shined the flashlight into the porta-potty so I could see and then we used the flashlight to take the dogs through weave poles. This, my friends, is what they call "agility addicts."

We were on the road to Norman, OK by 3:30. We laughed and talked, talked and laughed ... and had a great time! This trial was done "beta" style, which means you run the same course twice. While we had a great time, Barney and I didn't manage to have a qualifying score. I had a few chemo brain moments (I get to blame things on chemo brain ... it could also have been called "senior moment") during our runs that cost us. Barney, on the other hand, had some pretty runs!

This run was Regular 1. Barney had a beautiful run. If only his Mom hadn't forgotten a jump, it would have been one of the nicest runs we've had. Where was my head??? On the second time through the exact same course, I managed to include the jump, but Barney thought I really wanted him to do the dogwalk instead of the tunnel at the discrimination. We argued about it for a bit...

What a fun, fun day. We arrived back to Ed's by 5 or so.

Sum it Up

So ... while this week may have been a bit more active and filled with more unusual activities than normal, I managed to do it all. And, keep in mind, chemo (immunotherapy) was part of the week. Had I still been getting chemotherapy, most of the activities described here would have had to be put on hold. But, with immunotherapy, and the way I personally react to it, I had a very, very full week.

Here's what I want to leave you with. Getting a stage IV lung cancer diagnosis can be devastating. But, it isn't the end of the world. There is HOPE. There is more and more hope every single day as researchers find more and better ways to treat our cancer.

Don't give up. Never give up.

My Story

I am often asked for my story. I thought I might write it out and post it here. It will be easier to find and then copy and paste elsewhere when needed.

Finding the Cancer

When my Stage IV lung cancer was discovered in October 2012, I was, as far as I knew, as healthy as I have ever been in my life. I was playing agility with my two dogs three or four nights a week and every weekend. For those who do not know, agility takes a lot of stamina and energy! (https://www.youtube.com/watch?v=OCFrUCu6F_g)

I went to the doctor because I kept gaining weight. No matter what I did, I couldn't lose it. Since I had always been tall and thin, the extra weight was disturbing me. I self-diagnosed thyroid issues.

I am not a doctor goer. When I went to the doctor on that fateful October day, it was the first time I had been in 10 or more years. I chose the doctor based on her name  - I knew someone else who had the same name - and the fact that she took my insurance. This was the luckiest choice I could have ever made.

The doctor felt a very, very small knot on my collarbone. She sent me for a CT scan. That day.

She called in a few days to tell me that my thyroid was fine, but I had some strange cell activity in my lungs. I needed a PET scan, she said.

I had never heard of a PET scan. When we got off of the phone, I immediately began to research. And, what I found was scary. PET scans are used to determine malignant activity. Cancer????? Me????? But, I was as healthy as I had ever been.

Sure enough, I was diagnosed with cancer. Specifically, I was told I had Stage IV adenocarcinoma of the lungs that was both inoperable and could not be radiated. Chemotherapy was my only option.

I had watched my father die of lung cancer back when I was in my early 20s. His cancer was also discovered by accident, during a routine physical required by his place of employment. Six months later, at barely 49, my dad died. He went through hell during those six months after diagnosis, suffering through chemo and radiation. I had always said chemotherapy was something I would never, ever do.

Until it was my only choice.

Starting Treatments

I began chemo - a cocktail of Avastin, Alimta, and carboplatin - in early December 2012. I was one of those people who had a difficult time. No matter what nausea medicine we tried, I was incredibly sick the first week after an infusion. Fortunately, my health improved by leaps and bounds during weeks two and three. I was feeling pretty good when it was time for yet another infusion.

1st day of chemo ... let's get this show on the road!

I underwent four infusions of the three drugs. My tumors responded. They didn't go away, but they shrank. After four treatments, my oncologist decided to change the treatment. For four more treatments, every three weeks, I received Avastin. I am one of the unusual ones. Avastin made me as sick as the three-chemo infusions had.

However, my tumors had responded. They shrank. They didn't spread. My oncologist was happy. He decided to give my body a break and stop all treatments for awhile. He expected my tumors to remain stable. But, a CT scan revealed that it wasn't to be. The tumors had grown back to nearly the size they had been prior to beginning treatments.

The oncologist told me that I basically had two choices. I could begin another line of chemo, with a drug that wasn't as effective and that had worse side effects than those I had already had. Or, I could participate in a clinical trial. It was not a difficult decision for me at all. I chose to go into a clinical trial.

Clinical Trial

I really didn't have great expectations for extending my own life, but I wanted to help others coming up behind me. So, I went to the UT Southwestern Medical Center, one of 69 NCI-designated cancer centers, in July 2013.

Nearly immediately, I was fortunate enough to get into a Phase III clinical trial. In this Phase, the drug or treatment is given to many people to confirm its effectiveness, monitor side effects, compare it to other treatments, and collect information that will allow the drug or treatment to be used safely. In my trial, the efficacy of the experimental treatment, immunotherapy, was compared to a known and common chemotherapy, Docetaxel. I was happy that I drew the straw that allowed me to receive the experimental drug.

Entering the clinical trial was the best thing that could have ever happened.  I now have been in the trial for over two years. I responded to it immediately. Since I began the trial, my tumors have been completely stable. I have very, very few side effects. The worst happened early on - my thyroid quit working properly, so I now take a little pill once a day.

I go every two weeks for blood tests, doctor visit, and treatment. The treatment itself takes an hour to drip. Until recently, I was required to have CT scans every 6 weeks. However, the drug company amended the trial plan and I now have scans every 12 weeks.

Sharon, my Nurse Practitioner

Grace, the nurse who usually accesses my port

How much more is there?

The Present

The clinical trial and the immunotherapy gave my life back to me. I am able to live fully and completely - at a time when no one expected me to still be alive, much less living well!

October 2015 with Barney

Feeling Blessed ... Again ... and Always

Fair Day!

There are actually very few days that I wake up and do not feel blessed. And, for that, I am very thankful. My nature is to look on the bright side of life, which makes me a much happier person than I could be!

But, today's entry has to do with just how fortunate I really am to still be here among the living.

We know the stats ... only 17% of the 221,000 people diagnosed with lung cancer in 2015 will still be here on earth in 5 years. Get a stage IV diagnosis and that percentage drops into the single digits. Scary stuff, lung cancer.

Consider me lucky because I happen to know several people who are 5+ year survivors. I hope to know more and more as those I know pass that milestone. I have 2 more years before I celebrate 5 years. Every day that passes, I get closer!!

I entered this immunotherapy trial I am in back in July 2013. It was, essentially, a last ditch effort to stay alive. Last week, I sat for my 55th or 56th infusion. 26 months.

My doctor and my immunotherapy clinical trial have been in the news this week. My doctor is a co-author on a major international study ... which just happens to be covering the trial I am in.

This article, http://www.dddmag.com/news/2015/09/bmss-nivolumab-opdivo-extends-survival-rate-lung-kidney-cancer, has a paragraph in it that really brings home how special it is that I remain among the living.

At one year after treatment, 51 percent of the 292 patients treated with nivolumab, a PD-1 immune checkpoint inhibitor, survived, compared with 39 percent of the 290 patients treated with docetaxel. At 18 months, survival was 39 percent among those treated with nivolumab and 23 percent among patients treated with docetaxel, the study found.

Wow. Only about 119 of the nearly 300 who started this study were still alive after 18 months. I wonder how many remained after 24 months? I know that I am the only person in the Dallas area that remains in my trial. That's been true for at least the last 12 months. I never really considered the fact that the others may have died. I just thought they got out of the trial. I hope that's all that happened.

The press release featuring my doctor (with a little quote from me!) can be found at http://www.newswise.com/articles/immunotherapy-superior-to-chemotherapy-for-lung-cancer-in-international-trial-involving-ut-southwestern-cancer-researchers.

I don't know why God has chosen to leave me here on this earth. I am glad He has. I am not really ready to die. I am having a great time here. But, heck, the alternative is surely not something to dread when you believe like I do. Streets of gold and living in the presence of Jesus ... not a bad gig at all 😃😃!

Still, every day I am made more and more aware of just how fortunate I am to still be alive. And, I resolve to be even more diligent in bringing to the attention of everyone I know, whether they want to hear it or not, the fact that lung cancer happens - to anyone with lungs - and it is deadly. We need more research funding. Lots and lots more research funding. For me ... and for everyone who comes behind me.

Wow!! Washington, DC ... Here I Come!

Lately, my life has taken some strange twists and turns. And, in the process, I have gained memories that will last a lifetime.

I am certain I should not say that I am happy I have Stage IV lung cancer. And, the reality is, that I would give up all of the experiences I am about to tell you about NOT to have lung cancer. But, as long as I do ... what a ride it has been!!!!

The Beginning

About a year ago, I decided to participate in the Breathe Deep DFW 2014 walk in Arlington, TX. It was an event sponsored by LUNGevity ... I had never heard of LUNGevity and I had never before participated in an event similar to this one. But, I made myself go, despite the fact that I didn't know a soul who was going to be there and had no one to go with me.

I got there early. I walked around and took some pictures ... and generally felt a little ill at ease. I am not a person that goes to events like this all by myself. Why I did on this November morning, I will never know. God was directing me. That's the only possible explanation.

While I was at the event, I met some awesome people. One was Katie Brown, who was responsible for the entire event. She is also a VP with LUNGevity. It was through Katie that I learned about a Regional HOPE Summit that would soon be held in Irving and a National HOPE Summit that would be held in Washington, DC.

The summits bring together lung cancer survivors. They have food, speakers, food, and fun. As the names state - the summits are all about HOPE. Because, as deadly as lung cancer is, there are quite a few survivors out there. Some of us are making it! HOPE!!!

The Irving summit was free. Once again, I stepped outside of my comfort zone and attended. Robert went with me ... at least for a little while. I had an enjoyable time, meeting other lung cancer survivors, hearing what the guest speakers had to say, eating some good food...!

I learned more about the National Summit that is held every year in Washington, DC. The Foundation pays for first time attendees to go - airfare and hotel room!! Last year, there was a small $50 fee to attend. I wanted to go!!!

I had so much fun at the National Summit. I met so many other survivors there. Some had been recently diagnosed; some have been surviving for many years. Some were young, some older. Some smokers, some not. A diverse group of people brought together by disease. So, we shared one thing in common - the burning desire to fight - and to fight HARD - to beat this formidable foe.

There was a lot of laughter and plenty of good times at both Summits. There were super people everywhere. And great food. And informative speakers. Very informative speakers. We have lung cancer, but we also have lots of reasons to have hope. That's the message ... and that's the truth.

So. The journey begins! A walk in Arlington, TX. A HOPE Summit in Irving, Texas. An annual HOPE Summit in Washington, DC ... a connection to LUNGevity.

Immunotherapy

As anyone who reads my blog knows, I have been getting immunotherapy for over two years. I asked the nurse yesterday how many treatments I have received. Yesterday was number 56. Which might actually only be number 55 in reality. I had to miss one treatment because I broke my arm and had to have surgery just weeks after beginning the clinical trial. Either way - a lot! I am nearly certain I am the only person in the trial in the Dallas area and that that has been the case for at least a year. Maybe longer.

You will never meet a bigger proponent for immunotherapy or clinical trials. I have gained my life back because I took that step and joined a clinical trial. I am so lucky because for some reason, I am that person that the immunotherapy really, REALLY works well for.

Well, the fact that I am in a clinical trial and doing well on immunotherapy has opened some big doors for me. BIG doors! Some of them, scary doors!

Katie Brown ... of LUNGevity fame ... asked on our LUNGevity Facebook group several months ago if anyone was receiving immunotherapy. I quickly raised my hand - again, I love immunotherapy!!

American Association for Cancer Research

The next thing I know, I got an email from the American Association for Cancer Research (AACR). They wanted my story. I said, "sure." I thought they wanted me to sit down and write a blurb about my experiences with immunotherapy. I expected to spend a half day or so writing and perfecting. I thought I would send it away and that would be that.

Except, I was thinking wrong.

The AACR didn't want me to write my story. They wanted me to TELL my story. To a video camera and still camera. To people. Uh. No. I don't DO public speaking. I just don't.

I grew far less interested. I am camera-shy and I do not ... do not ... do public speaking. Even when that public speaking is in my living room to only a few people.

So, I started just not answering emails from AACR. Because camera crews (still and video) were not my cup of tea. And not at my house ... I HATE to clean house...

Well, responses to emails or not, the AACR was moving forward with plans to come to my house to video me telling my story. I got an email on a Monday that the film crew would arrive at my house the following Wednesday at 10 AM.

There really was no backing down at this point.

I should say that the AACR is an AWESOME organization. It has been around since 1907. It is the oldest foundation in American dedicated to cancer research. Some of the best minds in the US are involved with it. This is no rinky-dink organization I am dealing with!

Film Crew Arrives

So, on that Wednesday, I got up early to do a little cleaning. I finished early, so I fixed Robert and me some breakfast. I was washing dishes when the phone rang and I was informed the film crew was there. Over an hour before I expected them. I hadn't even had my shower yet!

Thank goodness I am not a worrier! Much of a worrier, anyway. I just told them I would be out as soon as possible - I had to get a shower!

It was a ton of fun to do the photo shoot and video. I have never ... and will probably never again ... had such an experience.  I had a blast.

The interview, photos, and filming took about 5 hours. The editors managed to get a single page story and a 4:27 minute video! Amazing work because they managed to capture me well, especially in the video.

Here are the results:

http://cancerprogressreport.org/2015/Pages/fernandez.aspx?Page=0 (written story)

My story joins the stories of 49 other cancer survivors. Every year, for the past five years, the AACR has featured 10 survivors in their annual Cancer Progress Reports. I am featured in the 2015 report. It is an awesome report. If you are interested in facts about cancer, you'll be interested in seeing the entire report: http://www.cancerprogressreport-digital.org/cancerprogressreport/2015?pg=1#pg1

Washington, DC - Capitol Hill

I was told I would get a subscription to a magazine produced by AACR for participating in the video project. So, imagine my surprise when I got an email inviting me to attend the release of the report on Capitol Hill as a guest of the AACR.

I quickly responded that I would love to come to DC to attend the release! 

In a day or two, I got another email. I was asked if I would make myself available to the press ... and ... would I be interested in being a presenter during the release of the report on Capitol Hill?

Hello???? Remember??? This is Donna. She is NOT a public speaker. Not even close. And you want her to speak for FIVE MINUTES to top government officials on CAPITOL HILL??? 

Speak in WASHINGTON, DC??? ME??????????????

Well, I said I would be happy to make myself available to the press, but I was the wrong person to do the speech. I cannot emphasize enough - I am NOT a public speaker. If I was, I would have a lot more money than I do right now because I was given many opportunities to give workshops about grant writing. Because of my extreme fear of public speaking, those workshops didn't go well ... and I quit even trying. And now, you're asking me to speak on CAPITOL HILL????

I was encouraged again to speak. I can't understand why. And, I really can't believe I agreed to do so. But I did. And, I was really glad that I did.

I was only given five minutes to speak. That sounded like a LOT of time when I was first told I had that long. But, trust me, getting a speech down to just five minutes is a challenge! Especially for someone as verbose as I am! But, I did it ... at least within a few seconds. 

Donna's Capitol Hill Speech

I prayed. Lots of people prayed. I practiced. Thank God for good friends who were willing to help me - read the speech, comment on it, listen to it ... When I went to Capitol Hill, I was prepared. And God did the rest - He kept me calm and allowed me to speak with little fear.

See the dog? That's Tank. He belongs to my awesome agility instructor, Ed Scharringhausen. Despite being very busy getting ready for an inaugural agility trial on Luke's Field, Ed took the time to help me edit my speech ... and to listen to me read it. When I was reading it to Ed, my friend Linda, and their dogs, Tank sensed my fear. He doesn't really know me, but he knew I was really nervous. So, he got up and came across the room to sit right in front of me. He sat tall and straight for the entire speech. I petted him and relaxed some. 

I mentioned that I wished he could go with me to Washington. Well, he obviously couldn't go, so I took the next best thing. His picture. And he sat right there on the table beside my speech the entire time.

Looking out into the room on Capitol Hill before my speech

The speech went so much better than I could have ever, ever anticipated. All of the prayers worked! I had many people seek me out later. They told me that my speech made them cry, that they connected with me, that they didn't know WHY I said I wasn't a public speaker (if they only knew...)...

The fact is, my speech made me cry too. I just barely was able to tell the audience about Kiersten Dickson, my young friend who died at only 20 from lung cancer. It is a good thing I saved her story for the end. I hope at least one heart was touched enough by what I had to say to fight for more funding for medical research, especially for research benefiting those of us with lung cancer.

Washington, DC - The White House!!!

It seemed like every time I opened my email, I was surprised by something else exciting! I just grinned from ear to ear when I opened the email that said the AACR and the survivors attending the release of the 2015 Cancer Progress Report were invited to a meeting at the White House!! You have just got to be kidding me!

We rushed ... and I do mean rushed ... from Capitol Hill to the White House. It isn't good to be late to a meeting at the White House. But we were.

There were long lines waiting to get through security to get into the building. The building that wasn't white, I might add. I was very confused.

I thought maybe we had to pass through this building to get into the White House?? I kept saying, "But this building is not White!!" Well ... our meeting with Obama's Domestic Policy staff was technically NOT in the White House, I was disappointed to learn. We actually met in this gorgeous building - the Executive Offices, which are right next door to, but are not, the White House!

As I said, the lines were long. Full of people - important and self-important. They were not all that happy when our group was whisked in front of them! At least one of those standing in the heat waiting his turn to go through security was a governor of some state. I forget which one. I am sure he couldn't understand why we got preferential treatment. I'm not quite sure why either, but we did!

Once we were through the three levels of security, we were finally on our way to our meeting.

The ceiling in the vestibule. All different. All gorgeous!

Long, shiny hallways. Notice the gold handrails on the stairs.  The young lady was one of those we met on the President's Domestic Policy Staff.

The building was very quiet. Very uninhabited. I wasn't sure how many pictures I could get by with taking so I didn't take a lot. I didn't want my camera confiscated! (As it turns out, I think it would have been fine to take as many as I wished. But, to say I was a little intimidated is an understatement!)

Our meeting was a good one. It was relatively small. AACR staff, Obama's staffers, and cancer survivors - all beneficiaries of the latest and greatest cancer research.

Green "Appointment" tags for US citizens; pink for non-citizens. If your tag wasn't green, you had to be escorted everywhere. Even with our green tags, we were escorted everywhere! I wore a pretty blue jacket, but it was warm in the Executive Offices! Conserving energy, I suppose.

The four women in the middle of the picture are members of Obama's Domestic Policy Staff. They are young ... smart and powerful. And as nice as could be. 

AACR leaders.

Our meeting probably lasted 45 minutes or an hour. I honestly failed to look at my watch so couldn't say for sure. I felt like the young women were willing to take as much time as needed for the meeting to be a success. I didn't ask anyone from the AACR staff, but my guess is that they did feel it was a very successful meeting. Had I been one of them, I would have been very pleased. Obama's staff was very interested in working with groups like the AACR to get medical research moving. That is good news for everyone, I think.

When we left, we were taken out a side door so that we could stand next to the White House. We were mostly all very excited by that!

The hallways go on and on ... and they are beautiful. This is a very old building, but it is maintained perfectly.

The Presidential flag! Maybe I should have tried to peek into the office beside it!!

Here we are! Right beside the White House! (This picture was taken as we stepped out of the Executive Offices building)

Standing in the parking lot, we saw people coming and going to meetings at the actual White House! We had to keep moving out of the way because the visitors were dropped off at the canopied door.

I never saw soooooo many black Surburbans!! They were everywhere!!! Some other makes and models were represented, too, but they were all black!

Do you see it? The Presidential Seal? This is as close as I got to actually stepping into the White House!

The armored car.

I just cannot tell you how special this day was!! I would have never, ever, in my wildest dreams expected to speak on Capitol Hill, especially given my extreme fear of public speaking, or to go to the Executive Offices of the President.

Reception

There was still a reception and an awesome dinner. Both were just unbelievable. The reception was held in the Kennedy Caucus Room in one of the Senate buildings. The Senate buildings are much more beautiful than those for the House. There is lots of marble, gorgeous ceilings, the feeling of power. In the House buildings, I just felt like I was in old, but fairly well-maintained buildings. They were nothing special.

Many organizations took place in the Rally for Medical Research. Did it make a difference? I can only say, "I hope so."

The AACR president, Dr. Marge Foti.

Many famous events took place in the Kennedy Caucus Room (before it was so-named!)

Let me tell you - the hors d'oeuvres served at this reception were delicious!!! I was speaking at lunchtime so failed to get any lunch. I was starving when we arrived at the reception. I was full when we left!! Coconut chicken, some kind of fresh salmon wrap, cheeses, chips and crackers, I can't remember what all. There were a variety of wines and beers - all domestic, I heard - available as well as sparkling water and some soft drinks, I think.

I was getting tired at this point and didn't get a bunch of pictures. Wish I had taken some of the food! So I could eat my heart out now! I wondered how people that attend many of these functions stay slim.

Dinner

We came back to the hotel at about 7:45 PM. I was dragging. We were given the opportunity to change clothes (and shoes ... ahhhhhh! My feet were so happy to change into tennis shoes!!!) and rest just a moment before returning to dinner at 8:15.

I planned to stay at dinner no longer than absolutely necessary. But, that was before I ended up at the first table - the one with the heads of cancer clinics all over the US. I can't remember all of their names and, unfortunately, never caught the last name of one who was so kind to me. Her name was Karen. She heads a cancer clinic in Philadelphia. Her specialty is prostrate cancer. And, she is one of the kindest souls I have ever met. She made sure that I felt like a part of the group the entire dinner. When there was an "inside joke," she made sure I understood it. She always explained who was talking and what their specialty was. I wish I knew her full name. I would love to send her a thank you card. For her compassion. For her humanity.

It was so very interesting sitting at that table and listening to top doctors discuss cancer and research. I was suddenly not tired at all. I didn't get back to the room until after 11 PM.

The food was absolutely divine. The company and conversation even better. I was so on top of the world after this day that I couldn't begin to fall asleep.

Which is probably a good thing, because I had to pack everything up so I could turn back the room the next morning!