Category Archives: stage IV

Blessings

You have to look for your blessings where you can … and I know you guys will think I am weird, but this lung cancer made it possible for me to retire. I can’t even tell you how wonderful it is not to have to go to work any longer. I have had to work one or two jobs since I turned 20. I am loving every second of not having to do that any longer!

Another HUGE blessing is that the treatment I am on (clinical trial for immunotherapy drug) is wonderful. Here I am … Stage IV non-small-cell lung cancer patient … nearly 1-1/2 years after diagnosis … still doing fantastic!!! The tumors are still there, but they are just sitting in the same spot as they were when we discovered them. They haven’t grown or multiplied or spread. Hallelujah and Praise God!

The immunotherapy is the best thing since sliced bread. It doesn’t make you sick or tired and before I started getting it I was sick and tired of being sick and tired!! The hardest part of getting it is spending a long half day at the hospital getting an infusion every two weeks. Lucky me and lucky cancer patients everywhere … the company is or will soon be seeking FDA approval. From what I know, none of the patients who are participating at the clinic where I go has had terribly adverse side effects and I think everyone is doing quite well in the fight against their cancer.

I am so glad that I found UT Southwestern. Some people told me that they felt like it was a huge and cold institution that didn’t care about patients except as numbers in science experiments. Well, that’s far from true. The girls behind the desk know you, the aides who take you from place to place know you, the nurses, physician’s assistants, researchers, and doctors all know you as a person. I always feel like I am seeing friends when I go. Which is a good thing since treatments occur every two weeks.

My life is so full. Every single day is packed with things that I love to do. In the past, my days were full, but they were full of work-type activities. I worked at my 8-5 job and then I came home and took care of SchoolGrants, the business that God blessed me with since 1999. I let it go a couple of years ago and that was quite a liberating feeling! It still is. It was my passion for a long, long time but I burned myself completely out.

Once you receive a cancer diagnosis, I don’t think the fact that you have cancer (or had cancer if you are fortunate enough to beat it) ever leaves your mind. I never go through a day that I do not remember quite well that I have cancer. It impacts my thought processes. On the other hand, some days I can’t believe the diagnosis is correct. How can I be so sick when I’m so healthy??!!!

Which brings to mind more praises! Week after week, month after month, my blood tests come back perfect. We do thorough blood analyses before every single treatment and every time, my tests are perfect. My doctor is amazed. He said that less than 1% of cancer patients are as fortunate. It isn’t just my blood tests that come back perfect, so do my blood pressure, oxygen, and temperature readings! How can I not call myself lucky? LUCKY!! or, more appropriately, BLESSED. Totally.

Here’s another way I am blessed. Insurance. Oh my gosh. Fighting cancer is expensive. Ridiculously so. What do people who don’t have insurance do? I really don’t know. I’m glad I don’t have to find out.

I have been on some cancer sites lately that are sort of like support groups or something. I have never felt the need for a support group but I like to go to these online groups and offer support to those just learning they have cancer. I want them to know that a horrible diagnosis that scares the living daylights out of you may truly not be the end of the world at all.

Those people who get the diagnosis and decide right away that they’ll just go with palliative care distress me. No one thought I had a lot of time left but I was determined to make the best of what time I did have. My life has slowly evolved to something that it wasn’t when I was diagnosed. For instance, I do not participate in all of the same events, like agility training and competing, that I was consumed with prior to learning I was battling lung cancer. But my life is full. Every single minute of it! I am as happy as can be. Each day ends with me thinking that I needed more hours to get everything done that I wanted to get done that day. Amazing.

Those who just give up are missing out on so much. None of us have tomorrow promised to us, so we should all appreciate each and every hour that we are given. I just wish that those who choose not to fight their cancer would reconsider. At least I wish they would try to get into a test study so that the doctors can research the effects of more treatments. It might or might not help them but it surely might help someone else down the road. I’ve never been a hand-wringer. I don’t guess I understand  those who are.

Well, I planned to post a lot of pictures here and discuss some of my recent activities, but I’m really beat. Today was treatment day and it was a long day. I’ll come back before too long and post some lovely pictures I’ve had the opportunity to capture over the last few weeks and months.

Until then, take care and thank God for another day!

I’ll leave you with two of my most favorite blessings:

My lovely Cotton. She’s doing some birdwatching here. I’ll be posting pictures from our bird watching in the near future.

Barney. My heart and soul. 

Happy Birthday, Barney Boy!

Four years ago today, my little Sheltie made his way into this world. A little less than seven weeks later, he came home to live with Robert, Cotton, and me. He is my heart and soul!

 

 

Cotton was a big white fluffy puppy – just gorgeous. Don’t shoot me, but I personally don’t think Sheltie pups are some of the cutest around. They are a breed, in my own opinion, that are much more gorgeous after they become adults. All pups are cute, but Barney and other Shelties are not beautiful as puppies. In my opinion!

My mother came over shortly after I got Barney. By that time, his little looks had grown on me and I was thinking he was cuter than I did initially. His sweet, silly personality made you love and adore him and see a different puppy.

Mom, on the other hand, rounded the corner and saw him for the first time. She immediately declared that he was the ugliest little puppy she believed she’d ever seen. Poor little Barney! She was expecting a big fluffy ball of fur like Cotton, an American Eskimo Dog, was.

I saw a picture of Barney from his puppy days on Facebook this morning. I hope I can find it to post here because the poor boy was really gangly! The angle of the camera doesn’t help! Little Man looks like he’s all head and only a little bitty body! I just want to grab that little puppy up and give him a big hug now!!! A lot of my friends have new pups this year. Seeing them hasn’t really made me want a puppy all that badly. Seeing pictures of my own Barney Boy from a few years back, though, is really giving me puppy fever!!! And lots of big, big smiles!

Barney has been through so much with me. I had only had him for three weeks when we learned that our three grandkids, aged 10 months, 3 years, and 8 years at that time, were coming to live with us. CPS had removed them from their home and, at least at first, it seemed Robert and I were going to become parents again until the kids were full grown. I only had one child when I was young … getting three all of a sudden and under such circumstances was traumatic, to say the least. Poor little Barney didn’t get nearly as much attention as he would have under different conditions.

Well, that’s not entirely true. He got attention from the kids and from me … but it was different attention than I envisioned when I got him. The good news is that he loves kids, especially the three grandsons, unequivocally. I’m sure that growing up with the kids influenced that love greatly.

 

 

 

 

 

 

 

 

But we missed some early training opportunities that I see my friends offer to their young pups. I’m not sure it really stunted him much though. He’s well-behaved and a fine little agility dog.

The kids lived with us for 5-1/2 months before the judge allowed them to go back home. So much of my time and effort was focused on taking care of them that I feel like I missed Barney’s puppyhood. I barely remember it. Those months are a daze in so many ways!

As soon as the kids got to go back home, Barney and I threw ourselves into training. Little Man was fabulous. If you asked it of him, he gave it. He still does. What a dog!

We started training every chance we got. We went out to the DAWG (Dallas Agility Working Group) field twice a week and one time a week, Barney was in pre-agility and then beginner agility classes. We both love agility and spending the time together. Cotton was along for the DAWG training. She loves agility, too. Sometimes. When it suits her!

As soon as he turned 18 months, Barney started competing in several different agility venues: USDAA, ASCA, and NADAC. We were gone nearly every weekend and, no matter the venue, the little guy turned in a stunning performance. He qualified in nearly every run he ran. We had so much fun. So.Much.Fun! We added AKC to our list of venues because there were a few weekends when we couldn’t compete in our favored venues. Addicted to agility! That was me, for sure. And Barney loved every minute of it, too!

 

 

 

Then, in October 2012, the bottom fell out of my world. Forget the fact that I was competing in agility every weekend and going to class, by then, four times a week. Forget that I was happier and in better shape than I can remember being (other than being slightly overweight from having quit smoking and going through menopause without the benefits of hormone treatments). Cancer didn’t care.

Barney, Cotton and I continued to go to class and trials while I underwent all sorts of tests and we waited to hear the final diagnosis. We even continued to go to class and trials after the word came that I had Stage IV lung cancer. But, once I started chemo, all bets were off.

I didn’t have the stamina to go to class at night after working all day even when I wasn’t sick, deathly sick, from the chemo treatments. If I wasn’t nauseous, I was still so exhausted that asking my legs to carry me very short distances (like from the 15 feet or so from the couch to the refrigerator) was an accomplishment. As badly as I wanted to keep playing, it was physically and mentally impossible.

Well, nearly. Ed Scharringhausen holds Run As One NADAC agility trials in this area once a month except during the hottest months of the summer. He and his other half, Cathy, are as supportive of me and the challenges I face with this disease as any two people I know have been. Despite not going to class, Barney and I have managed to go, at least for a few hours, to quite a few Run as One trials since I was diagnosed with cancer. And little Barney just keeps on keeping on! We’ve reached a point on one of the events, Chances, where the dog has to work a great distance from you, that we are not going to qualify without more training. Otherwise, though, Barney is at least as likely to earn a qualifying score as not. He gives his all each and every time we step to the line.

But, Barney is more, so much more, than just my little agility teammate. I’ve posted this picture a time or two before, but in my mind’s eye, it is how I see my little boy much of the time. I was so sick after one of my first chemo treatments. My boy was right there with me … he has never before or since been so willing to stay with me (on me) for so long as he was during the time that I was the absolute sickest … such a comforter!!!

I dearly love my Cotton Girl. One of these days, I’ll give her a post! To go on and on about Barney doesn’t diminish how much I adore Cotton, but she’s a totally different dog than Barney. Barney is my caregiver and my little shadow. My sensitive, loving little man. I am, every single solitary day, so very grateful that Mr. Barney was brought into this world on February 7, 2010 and that he came home with me a few weeks later!

Happy birthday, Little Man!!! I hope we get to share many, many, MANY more together!!!!

 

 

 

 

 

 

 

 

 

 

 

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!