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.
Okay, this post is probably going to have a lot of people looking at me and thinking I have gone stark-raving crazy. But, here goes anyway!
What would life without cancer be like?
I participate in a forum whose participants have all kinds of different cancers. Today, a post was made that asked, “Do you get wrapped up in thinking about what might have been if cancer hadn’t come?” The person who asked the question is livid that she has cancer.
I recently saw a study that found that lung cancer patients who do not have anxiety or depression live longer than those who do.1 I was surprised to find this information because I have always been told that attitude might make your remaining life happier, but it has no impact on how long you live.
When I was diagnosed with lung cancer, I didn’t know anyone else who was still alive and fighting the disease. I started searching around and ultimately landed on a group where I feel totally at home – it is called WhatNext.
I am going to post two links below that will help you know if you think WhatNext will be a good fit for you. I go to a lot of different lung-cancer related forums, but I spend most of my time on WhatNext. It feels like home to me.
On WhatNext, there are caregivers and loved ones, survivors, and people from the medical field for all kinds of cancer from skin cancer to liver, lung, or lymphoma cancers. Take a look at the information below and please join, if it sounds like a place you’d like to be a part of!
“Study nature. Love nature. Stay close to nature. It will never fail you.” –Frank Lloyd Wright
Since I have been surviving cancer, I have really, really enjoyed visiting the gardens at the Dallas Arboretum. Whether I go with friends or by myself, I am filled with gratitude and peace while I am there. I consider my enjoyment of the gardens as one of the blessings of having cancer, because unfortunately, before being diagnosed with cancer, I never took the time to go.
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: