Category Archives: blessed

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.

Attitudes and a Crazy Bus Ride!

 

Last weekend, I attended LUNGevity’s National HOPE Summit that is held every year in Washington, DC. If you have lung cancer, consider attending a HOPE Summit. You will leave so uplifted and so hopeful! There is much happening in the lung cancer research field right now. These are exciting times!
But, the purpose of this post is actually to tell a story about a mishap that could have caused tempers to flair but instead found everyone laughing and having a great time.
LUNGevity treats its participants like royalty. On Saturday night, we took buses to the Old Angler’s Inn. A number of us loaded up onto Bus #5 (the last bus). I noticed right away that our bus driver had Google map directions that he was trying to read as he was driving. I didn’t say anything to anyone else about it until we had been on the road for quite some time and the driver started to make a turn, stopped pretty much in the middle of the intersection for a long while, and then continued forward back onto the freeway. DC traffic is pretty wild … his driving was making it worse!! Anyway, I mentioned to the person I was sitting with that the driver was clueless as to where we were going.
It wasn’t long before that fact filtered through the bus and soon we had several backseat drivers telling the actual driver where to turn next. By now, we had been on the road well over an hour to take a trip that was supposed to have been less than 30 minutes away.
About the time we had gotten the driver back on track (we were going to have to retrace most of the route we had already taken in order to get to the restaurant), all sorts of warning signals started ringing on the bus. We weren’t ever sure if we were nearly out of gas or just what the problem was, but the bus was in distress! The bus driver kept saying he was given “bad bus.” (He didn’t speak a lot of English)
We got him to pull of into a scenic area … for a moment . .. but then he pulled right back out into the DC traffic … bus dinging away with the warning bells … and bus without a lot of compression. We had a number of drivers going around us giving us the one-finger salute…
Finally, the driver was convinced to pull off into a lovely park area while we waited for the bus company to send help! Some of us bailed off of the bus so he would, hopefully, not decide to reenter the traffic!!!!

 

 

 

It was getting late. Most of us had not eaten for hours!! The groups that rode buses 1-4 had eaten and were now just waiting on us and wondering where in the world we were!
Everyone on that bus was either a caregiver or a lung cancer survivor. You did not hear complaining. What you heard was a ton of laughter and multiple jokes. We have learned that little incidents like that make life interesting. There was no reason to get angry or uptight. I suspect if all of us had been on a bus together BEFORE we were acquainted with living with cancer, the attitudes would have been far, far worse. Trivial little things like that are indeed trivial to us now.
It ain’t a picnic to have cancer, but you know, it sure does something to improve attitudes and outlooks on life. Or it has for those of us who attended that Summit.
For a hilarious account of this experience, go read what Dann Wonser had to say about it:

 

Two-Year Anniversary

Two years ago, accompanied by my mom and my husband, I arrived at Texas Oncology at Presbyterian Hospital  (currently of ebola fame) to begin chemo treatments. I wore my agility shirt that said, “It’s about the journey. ” I had no idea what to expect, but one thing I did know was that I was beginning the journey of and for my life.

I will be honest. I didn’t expect to live a year, much less two years from the start of chemo. I watched my dad die in 6 months after being diagnosed with lung cancer. Stats said I wasn’t likely to live. I planned to face the end of my life with laughter, humor, dignity … but I fully expected to lose the battle within a year of diagnosis.

Instead, Praise God!, today, two years after my first chemo treatment, my Sheltie Barney and I were at agility lessons, preparing to compete at the December  Run as One trial in Terrell on December 13-14. Could life be any better?

Today is World Cancer Day

Did you see the Super Bowl Commercial that Chevrolet ran? They will donate $1 to the American Cancer Society for every person who goes purple on Facebook or Twitter today. Do it, please!!! It will only take a moment of your time and your dollar combined with those of thousands of others can really make a difference. http://www.chevrolet.com/purple-roads-world-cancer-day.html

The Chevy commercial really touched me. This woman is facing a cancer diagnosis … and her husband is sharing in the pain. There are lots of diagnoses that would be heartbreaking to receive. The one I identify with is cancer. I think I will never forget the moment I learned I had lung cancer.

I was fairly certain by that point that I had cancer, though no one but me had ever uttered such a word in connection with the tests I was having. I was so hopeful that it would be nearly any kind of cancer but lung cancer. My dad died of lung cancer only six months of being diagnosed, despite a valiant effort to fight it. The stats for surviving lung cancer are just not good.

Of course, anyone who knows me or who follows this blog knows I didn’t get my wish granted. I not only had lung cancer, I had Stage IV lung cancer that was inoperable. Radiation also wasn’t an option. Chemotherapy was the only hope I was given. And the doctor wasn’t all that confident it would prolong my life appreciably.

How do you describe the emotions you go through when you learn that your life may be nearly over? Just when life was kind of coming together. I was so involved. I had so many more friends and activities to pursue than I had for most of my adult life. I was having fun … no … F-U-N!!! Literally, the time of my life!

Cancer wasn’t in the plans. At all. I had quit smoking five or six years previously. I was physically active. I ate decent. Cancer was for someone else, not me.

Things move quickly after you’re diagnosed with cancer. You face it bravely, but you’re still scared. And once you get that diagnosis, the fact that you have cancer sort of defines who you are from then on. Or, that’s the case with me. It never leaves the forefront of my mind that I have cancer. I don’t mean to say that it especially limits what I do because I try hard to make sure that isn’t the case, but I still never really forget that I am in the fight of my life against a mighty foe. And I never forget that God is Good and He is Powerful. And by His grace, I’m still here and I still feel good and I am still able to do a whole lot of what I was able to do prior to that terrible day that I learned I had lung cancer.

When I watch the commercial, I imagine that the woman has learned recently that she has cancer. Maybe they are on their way to her first treatment or to tell her parents or kids that she’s received a deadly diagnosis. So many difficult moments accompany the news that you have become a cancer statistic. You have to figure out the new road you’re going to walk whether you want to or not … and you wonder just exactly what it is going to entail. Talk about fear of the unknown!!

Is it going to hurt? Will I be deathly ill for my remaining days on this earth? What’s going to happen to my family, to my dogs? Will my friends disappear? Will people be too uncomfortable to be around me? Will I be too uncomfortable to be around them? Will I lose my hair? Will I become a skeleton? What’s it going to be like to face a deadly opponent? What does chemo feel like?

Here are some answers to those questions:

  1. Lung cancer doesn’t hurt. That’s a problem with it. You have no clue you have it until it is so far gone that your chances of survival are greatly diminished.
  2. Some of your friends do fall by the wayside, but others are right there for you every step of the way. You mourn the ones you “lost” and celebrate the ones who are strong enough and care enough to stick around.
  3. I was lucky! My hair got thinner, but I didn’t lose it. I purchased a wig and hats and all of the rest but by God’s grace, I didn’t have to use them. I’m really happy I didn’t lose my hair – that would have been difficult. But it surely wouldn’t have been the end of the world. I see some women who wear their bald heads with such pride … my heart just swells with love when I see it.
  4. I surely didn’t become a skeleton. It never has seemed fair that I can go through chemo treatment after chemo treatment and still be bigger than ever before. But, I’d rather be a little chubby than way too thin. I don’t look sick and I don’t feel sick.
  5. Chemo doesn’t hurt or burn or anything. It is boring … the first treatments I got took 3-4 hours to administer. The ones I get now drip for an hour. Ho-hum. The after-effects can be awful though. I can’t describe the fatigue or the nausea that accompanied my first chemo treatments. I think you have to experience them to understand them. I’ve tried to face this battle with good humor, but I have to say that I was starting to get quite depressed when I was on the first two courses of treatment. You would have chemo, be sick-sick-sick, and finally start to feel better just about the same time as it was time to go again for another treatment.

Every single day when I wake up, I praise God that I’m still here! I still feel good. I can still enjoy the activities I did before I was diagnosed with cancer.

Below is a video that was shot yesterday of my Sheltie, Barney, and I trying our luck at a NADAC Chances run. We did not earn a qualifying score (LOL, to say the least!!!), but we WERE successful! We were outside together with friends and we had a ton of fun. A far cry from the video above where the woman is looking out the window with so many fears and so much sadness.

 

I am fully aware that any day my cancer may take off and kill me quickly. I think that knowledge makes me enjoy each and every day far more than I would if my body hadn’t been invaded by “evil cells.” I try hard not to sweat the small stuff … or even the big stuff.
On the other hand, I tend NOT to make plans for too far into the future. There’s a Gaither concert over the Memorial Day weekend that I would love to attend in Tennessee but I have been hesitant to get tickets … it is a lot of money to spend if it turns out I am no longer able to make a trip like that.
Here’s the thing, though. Tomorrow is not promised to any of us. Car wrecks, heart attacks, the flu … none of us know what tomorrow holds for us. A cancer diagnosis might make that fact a little more real, but ALL of us should live life as if tomorrow may not come. Be happy. Be strong. Live!

2014 – Here We Come – Ready or Not!!!

Wow! 2014!! Where have the years gone? They speed by quicker and quicker! It is already the middle of January and it seems like it was only yesterday that we celebrated Christmas!

Retired!

The biggest news for 2014 (so far) is that, as of 1/1/2014, I am retired!!! I never, ever thought I would see the day! I mentioned in an earlier post that there were some advantages to having stage IV lung cancer. I know most of you think I’m crazy (maybe so!!!), but if I didn’t have cancer, I would still be working. For quite a few more years… Instead, I am getting to enjoy me time now while I can still enjoy it. The downside is that we have to go to treatments every two weeks, but the upside is that the treatment is working so I can enjoy being retired! 🙂

I am not sure that it has really sunk in that I don’t have to go to work on this coming Monday. Vacation isn’t going to end in another week! What a liberating feeling. Especially after being pretty miserable for the last few years at my job.

My challenge is going to be keeping myself from getting completely lazy. There have been a few days when I woke up and decided to just go back to sleep since I didn’t have anything I really wanted to do. Don’t get me wrong. There is PLENTY to do around here!! Plenty! It’s a matter of “wanna” … and I haven’t had the wanna to get into my closet or the study and tackle the mess that each place holds. Maybe next week.

Before I retired, I envisioned myself spending lots of hours playing with my dogs – mostly hiking and having a great time enjoying the outdoors. Maybe it will still happen. It just so happens that last week was mostly really cold and sort of dreary … my mood reflected the weather, for sure.

I thought I would be out and about with my camera – taking pictures of flowers, birds, insects, squirrels … whatever I could find basically. Again, I hope it was the weather that stymied those plans.

I haven’t had the luxury of not working since I was about 20 years old. Lots of my life was spent working full time, much of the time working full-time as an employee and running my own business. For several years, I added full-time student to the mix … those were interesting times!!! Thinking back on them STILL makes me tired 🙂 Always, there was wife and mom in the equation … and I always tried to be supermom and superwife … Yeah, like I said, looking back on those days makes me tired! And grateful they are in the past!

I guess it will take a little while to decide how to approach retirement. The idea of not having to do anything (except go to chemo every 2 weeks) is almost overwhelming. But, in a mostly good way!

RV

Robert and I have talked seriously about buying an RV and traveling around our great country. Since I’ve always had to work, we haven’t done much traveling. I know a lot of people work and still manage to travel, but I always found that trips were tiring and I chose to use my vacation time to rest and recuperate. So, now that work is no longer an issue, we have really considered purchasing a home on wheels and beginning to explore the United States. Robert wants to be in Arizona when the professional baseball teams are in spring training. And, we (mostly me) have thought it might be fun to travel all around to different agility trials.

Well, we went to a big RV show in Fort Worth this week. I had looked forward to that show for months. I left so confused. I thought I wanted an RV that you drive – so the dogs would have more room as we traveled from place to place. Plus, I thought it would be easier to drive a vehicle that is all one piece!

We looked at so many recreational vehicles it would make your head spin (and your legs feel like they were about to drop off). And, I was left wondering if maybe a fifth wheel RV wouldn’t be the better choice. Huh? Where did that come from?! I hadn’t entertained that thought AT ALL until walking around the show.

Then there is that part of me that wonders if we want an RV at all. They are expensive in every way: to purchase, to drive, to park, and to store. Some of the RV parks that I looked at cost more per night to use than a La Quinta or similar hotel. Maybe we should just buy a nice SUV and drive that across the country and stay at hotels and cabins, etc. along the way. It would be far more economical.

Or shoot. Maybe we should just purchase a lakehouse and forget about traveling. A home on the lake with property where the dogs can run and play sounds pretty relaxing. I’ve gone this long without really seeing America. Is it really all that important that I start now?

So, there you have it! Conundrum!

But, as I sit and reflect on all of the questions and decisions that await us, I am amazed again that I am here and that these questions and decisions are even there to be made! I say it pretty often and it is because I truly believe it – I am so, so, so very lucky. And blessed. A lot of lung cancer patients WISH they could be more concerned with these kinds of questions and a whole lot less concerned with how the chemo makes them feel and what can be done to stop their tumors from spreading and slowly taking over their bodies and killing them.

I remain fully aware that the day may come when the drug I am on quits working. And my tumors will no longer remain dormant. At any time, the cancer may decide it has sat for long enough without movement and spread through my body in weeks or months. Life is not certain. But, the truth is, life is not certain for any of us. Not at all. And each of us should probably strive to keep that thought in the forefront of our minds. It might help us quit sweating the small stuff.

Months Later…

Surprises

If you had told me in October 2012 that I would still be here and feeling pretty darn good in August 2013, I would have thought you were very optimistic. Facts back up my pessimism. Less than 50% of all Stage 4 lung cancer patients live for one year after diagnosis. I realize I haven’t actually made it a year yet … I have to make it to the end of October for that … but God willing, that is going to happen.

Entertaining myself during Chemo

This picture was taken at UT Southwestern where I was receiving a test drug as part of the research study I am in. It marks the last time I will have an infusion through a vein in my arm (or hand, as the case may be). Tomorrow, I go in for a port. No food or water after midnight. Arrive at St Paul Hospital by 7. St. Paul is an hour away! We’ll be getting up and getting with it early!!

As you can tell by the picture, I don’t look particularly sick except for the tubes coming out of my arm. It is because I am NOT very sick. My blood tests continue to be nearly perfect. My organs are holding up beautifully. I haven’t lost weight (not necessarily a good thing in my mind but most people find that a positive). Despite receiving chemo for six treatments of a 3-chemical cocktail and six more of one chemical, I didn’t lose my hair. It did get really ugly though so I had just had it all cut off not too long before the picture above was taken.

What’s It Been Like?

Once you receive a cancer diagnosis, I don’t think it can ever be forgotten or even pushed very far back from the forefront of thoughts. The fact that I have stage 4 lung cancer – the deadliest of all cancers – with only 15% of all those diagnosed, including those diagnosed at an early stage – living for five years – controls nearly everything I do. For instance, vegetables are not my favorite dish but I try hard to eat dark green vegetables every chance I get (realizing, of course, that we eat out most every meal). When we eat at a buffet, I will frequently choose to eat fish. I drink vegetable and/or tomato juice by the gallons. I try to stay away from carbonated drinks and, despite craving on occasion a mixed drink, I have refrained from imbibing. All in the interest of a healthier lifestyle.

Likewise, you will find me walking my dogs every morning. They are such a blessing. If I didn’t have them, I know I would not make myself get up and out. Not only do we walk, we also go to agility practice most Saturday mornings – even now in the hot August Texas summer heat. Last week, between the two dogs, I ran 6 or 8 complete courses. I have to sit down between runs and catch my breath, but I can still run! Thank you, Jesus!!! I am blessed.

For the first few months, I refused to buy anything for myself. I didn’t want to spend any money on someone who was short for this earth. I finally broke down and purchased several pairs of slacks and lots of little summer tops (admittedly, the tops have all come from Walmart or Sam’s, but still!). I’ve signed up for magazines that have subscriptions that run for a year. I’ve signed up for dog trials and photography classes.

On the other hand, I have thoroughly enjoyed listening for hours to the Gaither Vocal Band. Some of their videos make you happy; make you want to clap and sing along with them. I looked into going to a concert of theirs. There is a 3-day event in Tennessee over Memorial Day 2014 that sounds like a ton of fun. Tickets would amount to several hundred dollars. I have chosen not to invest despite the fact that really good seats are still available.

I’d really love to have a new car, too. But, I don’t want to purchase something long term that Robert might be stuck paying for without me here to help.

So, short term, there are not huge changes in my life. I can’t go to as many agility practices or trials because of stamina, desire not to spend excessive amounts of money, and a growing lack of interest. But, I have developed new interests that take a little less stamina (maybe), such as photography. Why can’t I ever find a cheap hobby??!!

I have more to say, but it is getting late and I have to get moving early in the morning. I’ll try to revisit here a whole lot sooner than I have been so far!