Cancer is nothing when you have hope!! This site is all about living … and living well … with late-stage cancer. I hope you will journey along with me through the ups and downs of living with lung cancer.
I am sitting here staring at a blank sheet of paper, wondering what I have to say to you that will be worth your time reading it. I am no scientist. With the advent of chemo brain, I don’t even really enjoy reading and researching like I once did. So I have no great wisdom to impart.
What I do have to pass along is hope. Such a little word but one that has the ability to change your life. Hope crowds out anxiety and pushes away fear. It fills you with peace and can motivate you. ….More
I was just looking at my Facebook memories. I love those! I find myself posting things I want to remember to Facebook now so that they will show up in my memories in the future. Am I the only person who does that? More…
A few years ago, I wrote a number of blog posts for Patient Power. I am going to provide links to them on my blog. Happiness is My Normal was originally posted 4/28/2016
You guys!!! This girl just passed her FIVE YEAR cancerversary!!!
When I was diagnosed back in 2012, my first oncologist thought I might live four months. And, yet I recently celebrated FIVE years of life after diagnosis!!!
Donna, December 20, 2017
The year 2017 was an eventful one for me. After four years of immunotherapy treatments with every CT scan showing tumor stability, a tumor in my supraclavicle lymph node (on my neck, near my collarbone) outsmarted the drug and began to grow.
I had to quit my clinical trial after treatment #98. I was so looking forward to getting my centennial treatment. I wonder how many people in the world have received 100 infusions of nivolumab (aka, Opdivo)? I wanted to be among the first.
There were decisions to be made after we got that fateful CT scan back. Initially, I was going to just move into another clinical trial. But, by the time I completed all of the requirements (ie., a biopsy to see how much PDL-1 was present), someone else got the spot I was hoping to fill.
My oncologist suggested that I go on chemotherapy for a time while we waited on something better to come along. I had done chemotherapy. I wasn’t anxious to do it again. To say the least.
I pondered on the idea for several days. I cried … and I rarely cry. I started getting depressed … and I am rarely depressed. I thought, I prayed, I researched other options, including potential clinical trials available in Dallas or Houston or anywhere within driving range.
And, one day I decided radiation might be a viable option. The tumors in my lungs were still stable. Only the one tumor in my neck was growing. It seemed to me that it would be an easy thing to radiate that bugger. (I wasn’t a candidate for radiation when I was first diagnosed because of the location of my tumors in my lungs.)
I spoke to my nurse practitioner about the idea. She said if I really thought that was the route I wanted to go, she would make a referral to a radiation oncologist.
My radiation mask and a wonderful
cross my cousin sent me.
My husband and I had an immediate connection with the radiation oncologist. We liked him a lot. And, we completely trusted that he would get the job done on that errant tumor, that I had nicknamed Wayward Tumor.
I had fifteen treatments. I will be blogging about those treatments if I will ever sit down and finish them. The treatments were easy enough. I was a little surprised by the severe fatigue that came around after the treatments were complete. It has taken several months to begin to regain my energy and even so, I tire and stay tired very easily.
Nevertheless, when I had my first CT scans since the discovery of the growing tumor, we got great news! Not only was the tumor in the supraclavicle lymph node gone … yes, for the first time in five years, that baby was no more!!!! … the one tumor in my lungs that the radiologist doesn’t call a scar shrank by half. That tumor had been completely stable for over 4 years, not shrinking or growing, just being.
I have been okay with those results … I’ve often said I was completely willing to carry the tumors around with me as I live my life as long as they just sit there nicely and don’t interfere. So, I wasn’t prepared to hear that it had shrunk significantly. Wow!!! You gotta love a CT scan like that one!!!
We didn’t do anything special to celebrate my five-year cancerversary. In a lot of ways, it was just another day. But, in my mind, crossing that magical line in the sand – it seems many stats are done for one year and five-year survival rates – was special. Very special.
I am well aware that people can and do get to fight the beast again after crossing the five-year mark. The fact is, I am still in active treatment. I have been in active treatment for the entire five years that I have known I had lung cancer. But, it is still celebration-worthy to cross a milestone that has been looming in front of me all of this time.
Next milestone in sight? 10 years, of course!!!!
Lung cancer is a bitch, y’all. It just is. But, it isn’t stronger than we are. If we keep a smile on our face, a song in our heart, and let hope consume us … we beat it. Every moment we do not dwell on cancer, we beat it. I am resolved to be happy and content every day that is before me. In that way, no matter what happens, I have beaten the beast.
It just occurred to me that this is something most people don’t understand – what it is like to have cancer. Thankfully, that’s the case. Although with stats showing that one in two men and one in three women will be diagnosed with some kind of cancer, I guess way too many of us DO know what it is to be diagnosed with cancer.
There are all kinds of cancer and all degrees of severity. For instance, my stage IV isn’t the same as my friend whose stage IV lung cancer means that the cancer is in her liver, brain, and kidney.
We don’t all react to having cancer the same way either. Some of us put on our boxing gloves and face our enemy. Some try to befriend their cancer … I don’t know, that’s not one I can wrap my head around! Others hear the dreaded words and just kind of give up.
I am emotional this weekend because a list friend who has lung cancer is “rehoming” her 7-year-old daughter today. She already found a new home for her 6-year-old dog. Once her daughter is in her new home, my friend will begin to float from home to home, just waiting to die. If that doesn’t break your heart, nothing will. Can you even begin to imagine the anguish??? I can’t.
At the same time, i find myself frustrated with my friend. She had only one chemo treatment. It made her very sick. So, her oncologist told her there was nothing he could do for her. He told her to go home, get her affairs in order. And, that’s what she did.
This lady has a 7 year old … and a beloved dog. Would you just quit if your oncologist told you there was nothing else that could be done … after only trying one thing? Not me! I would have been on the computer, on the phone, in my PCP’s office … finding the next plan of action.
That’s essentially what I did back in July 2013 when I was told there just weren’t many options left. At least my oncologist gave me two options : a dreaded chemo or go into a trial. He didn’t say to go home and die. But if he had, it would have just made me fight harder. Maybe my competitive nature is a good thing!!! There is not a snowball’s chance that I would just give up.
Give up and not fight? Never!!!
When the place he recommended I go for a clinical trial wasn’t responsive, I went to my PCP and asked for a referral elsewhere. There’s no time to waste. That’s something you learn when you have cancer. Time is of the essence. And, when one door closes, go knock on another or another or another. Don’t give up. This is literally the fight of and for your life.
So, What’s it Like?
So, what’s it like, having cancer? You learn what you’re made of. You learn that you have strength you had no idea existed. Or I did. In my wildest dreams, I didn’t really expect to be so content, so joyful, or to feel so blessed while battling cancer.
That’s God. That’s my very deep and abiding faith. I am confident that He knows what He is doing. What my role is, in my opinion, is to live each day remaining as fully and completely as possible. I want people to see Him living in and through me as I go through this trial. I hope they do. Because without Him, this journey would be absolutely devastating.
There are lots of heartaches associated with having cancer. They go beyond the obvious ones that go along with the actual physical fight. Your strength and mental capacities diminish. It is very frustrating to know you can’t physically do what you did before or to know you should know the word you want to use, but can’t find it anywhere in your mind. It makes you creative! I often have to figure out a way to say what I wanted to get across with other words besides the one that would work best.
It is rarely discussed, except among others with cancer, but one of the harder trials those of us facing cancer battle is the disappearance of friends and loved ones. It is hard to watch life go on without you. It is especially hard when it seems you are totally forgotten most of the time. It is hard to realize that people you thought would be there for you aren’t. Having cancer is definitely an eye-opener when it comes to learning who your real and true friends are and who your good acquaintances are. It’s a painful lesson. For me, it has been the toughest part of this battle.
On the other hand, it makes those who have made it a point to stay in my life so much more special. I know that there are three or four people besides my family who would drop everything, change their own plans, drive miles if necessary, to come to my aid, if it were ever necessary.
I count myself one lucky lady knowing I have these people in my life. Many people I am in contact with feel that they lost all of their friends when diagnosed with cancer. Just when you need them the most. It feels like people think cancer is contagious. The thought appears to be, “If you ignore the person with cancer maybe you won’t get it.”
What to Say?
Of course, it could be that people just don’t know what to say. I surely do understand that. I have found that lots of people with cancer are super sensitive. They get irritated if you tell them they look good. But, don’t tell them they look bad, either!! Some people don’t want to be encouraged (“you will beat this, you are strong…”) and others don’t want to be discouraged (“my dad died of the kind of cancer you have”). Some people don’t want to hear that they are in a fight. The list just goes on and on. I have cancer and it seems like I am often stepping on someone’s toes by saying something they consider offensive. For instance, I like to say that life itself is terminal. Oh my goodness!!! Some people are really offended by that!
No wonder the general public shies away!! I don’t usually know what to say either!! I read today where someone gets upset when the nurse at her doctor’s office asks how she’s doing. Sheesh?!!! Is there anything innocuous enough that someone won’t be offended?
So, we cancer people complain among ourselves about being ostracized or forgotten, but it seems like our over-sensitivity could be partly to blame. As for me personally, there is little that you could say that would offend me. I am an open book … and I realize that it’s very difficult to know what to say.
I have taken the stance that I am going to live my life for as long as I have life. My first oncologist was taken aback when he asked if I had any questions after being told I had stage IV lung cancer. My one and only question, “Yes! Can I continue playing agility?”
Some people decide to put themselves into a cocoon when they hear they have cancer. A germ might find them. Me, I want to live my life.
There have been times when I had to be driven to class or a trial because my strength and stamina were so low. But, I was determined to go and give it my all (which wasn’t necessarily much). For me, it’s a matter of not letting cancer take my life before it takes my last breath. Wouldn’t that be letting it win before its time? Yes, I think so!!!
Here’s the truth. When I am playing agility, watching a movie, eating with friends, living, I frequently forget that I am different, that I have a very deadly cancer. I am just out having fun with my dogs and/or friends. Cancer, for me, is not my focus. It is a part of me, but it is not me. I like to say (and I believe), “I have cancer, it doesn’t have me.”
But then there are the times when you are alone in your thoughts, when you do remember that you have cancer. It can be scary. When you think that maybe today is the day your treatment quits working and there’s nothing else to try. When your favorite oncologist has the tough challenge of telling you that there’s just nothing more to try. I can imagine how heartbreaking that will be for him.
I don’t go there often. It is depressing. .. what will become of my family, my two dogs when I am no longer here? I can only pray they will be okay.
I am not worried for myself. I take my last breath here and I end up in Jesus’s arms. But, what is the time between hearing there’s no more hope and drawing that last breath going to be like?
And, when you have a late stage cancer with a lousy prognosis making long-term plans becomes more difficult. I look to the future, but when it comes to planning something some months or a year away, I won’t make any cash deposits. Which, since I am outliving expectations, means I don’t get to do some things I would enjoy and would have felt fine to do. Guess I should be a bigger risk taker!!
I would love to get a new puppy to start training and loving. My two are aging. Cotton will be 7 next month and Barney will turn 6 in February. Unbelievable!! If I didn’t have cancer, I probably would have a puppy. But, at least at this point, I can’t in all good conscious take on a pup. It is highly unlikely that I will outlive the two I have now, much less a new baby. So, having cancer means making choices you don’t want to make. At all.
When you have cancer, every ache and pain makes you wonder if the cancer has begun spreading. I had a headache the other day. Awful, sharp pains shooting through my head. I rarely have headaches. Oh no! Has my cancer spread to my head? That’s a common place for lung cancer to spread. (It’s also treatable when and if it does.) (Apparently, I just had a simple headache. A Tylenol sent it away and it hasn’t returned.)
I have a new cough. Yikes! Have the tumors started growing again? An elbow pain … did the cancer spread to my bones?
I am not a hypochondriac nor a real worrier, but every little ache and pain brings a momentary fear to mind … did the tumors decide to spread or grow? Fortunately for me, my personality is such that though the thoughts come to mind, they are fleeting.
What’s it like, having cancer?
In many ways, I feel just the same as I always have. Sometimes, I will be in the midst of living and the thought comes rushing in, “wow! Look at you … you are doing [this or that] … with lung cancer!” It rushes back out as fast as it blew in. Thank goodness.
And, this will make some people think I am crazy, which I readily admit that I am, but I feel blessed and grateful. My life has gone places it would have never gone were it not for cancer. Certainly, I would have never spoken on Capitol Hill or gone to a meeting at the White House.
And, wow! I have met so many awesome people that I would have never met if I did not have cancer. My life is much richer for having met these people.
I have had the opportunity to learn that I have a handful of true friends. How lucky I am to know that. I have learned, too, what it really means to be a good friend. I hope my friends know that I am there for them, no matter what, the same as I believe they are for me.
It can be scary, but it can be liberating. A lot of little fears I may have had before have disappeared. I was always pretty vocal, but cancer made me more so.
And, cancer has made me happy. When I wake up every morning, I put my feet on the floor, get up, and begin a day full of joy. Cancer makes you appreciate the sunrise and sunset, the birds and flowers, the music of nature, the pure joy of another day.
Sure, there are the fears that are inevitable from time to time. Thankfully, they are short-lived. Who wants to waste time worrying, which changes absolutely nothing, when we can be living?
Cancer robbed us of my income, so financially, being sick has been an adjustment. We have to pick and choose quite a bit more than we did before, but the extra time I have available to enjoy life is worth the financial sacrifice. At least, it is most of the time.
I started this blog in hopes of telling my story for others who get this diagnosis. I think from the beginning, even when I thought my time was going to be far more limited than it has been, I wanted to offer hope. Cancer doesn’t have to be the end of the road. Or, at least, we can strive to keep on living until we can no longer go on. There’s still life ahead!
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.
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.
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.
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 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?
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:
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.
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.
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.
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.
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!
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!
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!
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.
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.
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!