Monthly Archives: November 2015

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.

 

 

Lung Cancer Awareness Month

It’s November. Nearly. It will be in just a few hours. So, finally, Pinktober ends. And Lung Cancer Awareness month begins. I’m afraid we won’t see a flood of white ribbons everywhere. For the most part, people just don’t really care about lung cancer. Which seems pretty weird to me since so many people will someday get that diagnosis themselves (or watch a loved one go through it).

Sooooooo, this is a month when I will once again flood my Facebook account with information about lung cancer. The general public may be ill-informed, but I can assure you, my friends should be well aware that the only thing it takes to get lung cancer is lungs.

It seems that every year I find ways to get a little more involved in awareness and advocacy. And, I’m really enjoying the role. I’m finding myself seeking out more and more ways to get the word out, besides what I do on Facebook. I think what I do on Facebook is not all that effective. Most people, I think, just scroll past my posts that have to do with cancer.

Breathe Deep DFW 2015

The month and Lung Cancer Awareness begins with a walk at River Legacy Park in Arlington, TX, on November 1. It was a cool and cloudy day. There wasn’t as large a crowd as I would have liked to see, but the ones who were there had a great time, I think.

Of course, the event was organized to raise money for lung cancer research. The goal for the event was only $45,000. But, we didn’t meet that. Not even close. We were able to raise a mere $23,712.95. Who gave 95 cents???

I don’t know how hard everyone else tried to get their friends and colleagues to donate. I worked hard for the $1,420 I finally managed to raise. I even enlisted the help of Cotton and Barney, thinking maybe they could reach my dog friends when I couldn’t. Didn’t work. No one even bothered to watch their video.

I got my feelings hurt when people didn’t respond to my pleas. I took it very personally. On the other hand, I was beyond touched by donations I got. They were mostly given by people I really didn’t expect to contribute. Just as NOT getting donations from people I thought would support me broke my heart, the contributions I got put a big smile on my face and song in my heart. Truly.

I can honestly say, I’m glad the fundraising is over with for awhile! I am obviously not very good at it and it puts me on too many ups and downs.

So, with that said, the event was a lot of fun. There were bounce houses, a DJ, lots of picture taking, and some dancing! Oh yeah! And a 1.2 mile walk or 5K run.

 

 

Lung cancer survivors, supporters and caregivers KNOW how to have some fun!!!

It is hard to believe that I only met the ladies in the picture below at last year’s event:

How I love them. Sherry (in the middle) is young and was athletic. Not a smoker. She’s missing part of a lung. The two of us started the team for this year. We named it Hope & Giggles because we have a ton of hope and we love, love, love to laugh and giggle! Her mom, Susan, in the blue shirt, is one of the best supporters ever.

Gail is a 27-year survivor of cancer. She’s had breast, thyroid and lung cancer during those years. You’ll never met a person with more heart or joy for life.

It was wonderful to see them at the event again this year.  If you look closely, you’ll see Katie Brown photobombing Susan, Sherry, and Gail! Katie is responsible for the fact that there is a walk. She began them after her dad passed away from lung cancer. We lung cancer survivors are especially lucky to have her in our corner. She is a tireless worker and advocate.

My friends, Cathy and Courtney Kuebler, joined us on the walk. It meant the world to me that they were willing to give up their Sunday to come to Arlington (not a short trip for either) and spend it on the walk with me. They are beautiful inside and out and I am so proud to call them friends.

 

My mom decided that she wanted to support me with her presence. She asked me if I thought she could make the walk. Well, I honestly didn’t know for sure, but figured we could give it a try. If she found she couldn’t make it, we’d figure out how to get her back to the car.

Mom hates this picture. She thinks it makes her look likes she’s 105. I don’t think so. I think she looks beautiful and younger than her 85 years.

She enjoyed coming and meeting all of my friends. And yes, she made that 1.2 mile walk with no problems at all!

Smiles. Smiles Everywhere.

You know, when I was first diagnosed with lung cancer, I didn’t think I wanted to be around others with cancer. I’ve never been particularly depressed or sad or down-trodden by my diagnosis, but I assumed I was an exception. I’ve found out that I was wrong. Way wrong.

 

Sherry and I pretended we had run the course and won!! (We HAD finished the 1.2 mile walk, but we pretended we had done more!) Notice the smiles. They’re not fake or contrived. These are two lung cancer survivors living and loving life.

 

Gail (27 years), Donna (3 years), Tom(11 years), Sherry (1 year), and Susan … 4 survivors and an awesome mom. Plenty of smiles!

 

This picture was taken by Katie or Hunter Brown of some of the cancer survivors who came to the walk. We are loving life and one another.

 

As The Month Progresses

I will be trying to find ways to get the word out that lung cancer hits people with lungs, not just smokers.

On November 7, there is a workshop/conference for lung cancer survivors that some of my friends and I will be attending. It is a great time to get together and possibly we’ll find new ways to get involved while we’re there.

On November 21, I’ll be at the Dr Pepper Starcenter in Plano at a Free Skate. I really don’t know much about the whole thing just yet, but I’ll be handing out literature and talking to others about lung cancer.

If I can get myself in gear, I’ll try to write some letters to the editor or articles for online publications or something. I have a blog to write this week for another group. It is to deal with advocating for yourself. Maybe it will get my creative juices flowing!!! 🙂

So … here we go … I hope I don’t lose any friends over my advocacy this month. I guess if anyone unfriends me, they weren’t friends to start with.

In case you don’t know yet:

All it takes to get lung cancer is lungs.
Nothing more. Nothing less.
 
 
Lung cancer doesn’t just happen to smokers.
 
Lung cancer happens to people who have lungs.