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.
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????
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.
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.
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| 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.
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 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.
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!
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.
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.
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.
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!
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.
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| The ceiling in the vestibule. All different. All gorgeous! |
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| 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. |
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| 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. |
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| 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!
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| The hallways go on and on ... and they are beautiful. This is a very old building, but it is maintained perfectly. |
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| The Presidential flag! Maybe I should have tried to peek into the office beside it!! |
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| 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!
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| Do you see it? The Presidential Seal? This is as close as I got to actually stepping into the White House! |
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| 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.
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| Many organizations took place in the Rally for Medical Research. Did it make a difference? I can only say, "I hope so." |
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| The AACR president, Dr. Marge Foti. |
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| 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!
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