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’ve been rocking along lately as happy as a lark. I have so many good things in my life right now that yesterday I came up with a whole list of what having lung cancer has meant to me: new friends, new adventures, retirement and the time to enjoy life, the opportunities to serve on meaningful advisory boards and to, hopefully, make a difference for cancer patients one day.
The good and bad days
I celebrate living, every single day. I get up and face days so full that I can’t possibly fit everything in. And, nearly every day, I happily think, “life is good.”
It was just about a year ago when I got news that turned my world upside down…again. I had been in a clinical trial for right at four years. During that time, I had gotten countless CT scans and nearly 100 infusions of the immunotherapy drug, Opdivo.
Preparing for Infusion #100
Ninety-eight infusions of Opdivo, to be exact. I knew about immunotherapy and how it works before almost anyone. I remember going to the ER one day in 2014 with an unexplained fever and warning them that I was on immunotherapy. The nurses, techs, and doctors looked at me like I had three heads. They had absolutely no idea how to pronounce it or what it was. Until then, I don’t guess I really realized just how new this treatment really was.
When you can’t control what’s happening, challenge yourself to control the way you respond to what’s happening. That’s where your power is.
Have you seen this meme floating around on social media? It really spoke to me.
It reminded me of my friend Jane. I first met Jane about a year ago when she sent me a long email after reading a blog I had written. Jane has a couple of kids, a loving husband, and a thriving business. And cancer. Her cancer, unfortunately, overshadows everything that is good in her life.
Have you heard of the American Association for Cancer Research (AACR)? Every September, they present a Cancer Progress Report to Congress. I just spent some time on their Web site, listening to some of the 2018 survivors’ stories. This year, The Honorable Mark DeSaulnier, D-California was among those featured.
Taxpayer dollars funding research
Maybe it is because of my background in accounting, but I was struck by the way Representative DeSaulnier spoke about the “return on investment” that Americans get when taxpayer dollars are spent on National Institutes of Health (NIH) programs.
We are entering the time of year that joins families far and wide together. We celebrate Thanksgiving and then come Hanukah and Christmas celebrations. It is a blessed and sacred time for many of us.
Remembering my son this season
It is also a time of reflection and sorrow, especially if you, like me, have an empty chair at the table this season. The holidays take on a whole different dimension when we’re celebrating all that is good in the world when it doesn’t necessarily feel like anything is.
When you are first diagnosed with lung cancer, everything seems to move at breakneck speed on one hand and on the other hand, time flows like molasses. You rush from one test to the next. My primary care doctor (PCP) felt a suspicious knot on my collarbone and astutely sent me for a CT scan that very day. The CT scan showed suspicious activity in my lungs so my PCP ordered a PET scan. The PET scan couldn’t happen until insurance approved its cost. Time slowed while we waited for that approval.
Well … here it is again … November 30. It is Cotton’s birthday – she’s 10 today … it was my uncle’s birthday – I’m not sure how old he would be now, in his 90s somewhere – and it is the last day of lung cancer awareness month.
I wasn’t as active this month as I am sometimes with getting posts made to Facebook; life intervenes sometimes. I always hope to bring awareness to anyone who will listen – anyone with lungs is susceptible to lung cancer, it is the most deadly cancer by far, it is the most underfunded cancer by far (if you take into consideration how many tens of thousands it kills each year). Something needs to be done.
Loss of another Good One
Yesterday, one of the biggest advocates out there passed away from lung cancer. Matt Ellefson has been a tireless and fearless leader for nine years. He will be greatly missed, but his legacy will continue through the nonprofit he formed, SURVIVEIT. I rest easy that he is in the arms of Jesus. He was a dedicated and devoted Christian.
There’s been a discussion on lungcancer.net about whether the sudden death of a child (albeit a 43-year-old “child”) or a lung cancer diagnosis is worse. I believe losing a child suddenly is worse, but some don’t. Some feel that their diagnosis is absolutely the worst thing that has ever or will ever happen to them.
Not me. Even if my son hadn’t just died, I would not say that lung cancer is the worst thing that ever happened to me. I honestly don’t know what I would say was the worst thing … I am a glass-half-full kind of person and I dwell on the positives of every experience, including a lung cancer diagnosis and including the death of my only child.
Too Many Die
Anyway … this post is about Lung Cancer Awareness Month coming to an end. I always hate to see it go. I like seeing everyone’s posts. Some choose to highlight people who have had lung cancer – either who have passed away from it – 433 a day do, you know – or those of us who are fortunate and still alive, fighting every day … or a few lucky ones who are enjoying remission.
Others post facts. That’s usually what I do. I try to make people aware of the gross underfunding the disease gets. And the fact that anyone, smoker or nonsmoker, can get lung cancer. Young women seem to be the most commonly diagnosed these days. That’s not scientific, just an observation. I guess I could look up stats for it, but they’d be old anyway.
Breast Cancer vs Lung Cancer
Breast cancer attacks more women than lung cancer, but most people recover from breast cancer. It isn’t an easy road to recovery, by any means, but there is light at the end of that long tunnel.
Lung cancer kills WAY more women than breast cancer does. Usually within the first year after diagnosis. No matter how often or how loudly we try to shout this information, it apparently falls on deaf ears.
What’s the Answer?
I just don’t know what the answer is. We try going to Congress and mostly we just leave frustrated. We try telling doctors, friends, family and coworkers … well, our friends, family and maybe our coworkers – people close to us – get the picture, understand on some level. But doctors are still grossly misinformed and therein lies much of our problem.
Too many doctors think smoking causes lung cancer. Everyone knows smokers deserve anything they get. So, there is no need to fund research for the world’s most deadly cancer. It is simply taking out those who deserve it anyway. Wow.
Smoking is a nasty habit, but there are other nasty habits. No one is so maligned by theirs. Maybe it is because cigarettes stink so much. They offend those of us who don’t smoke. So, is the attitude that if someone has the audacity to offend me with their smoke then they deserve to die a somewhat horrific death?
Someone on WhatNext lost her mom. She was having a hard time dealing with her death at the same time as beginning treatments for breast cancer. I wrote some suggestions, based on how I have dealt, so far, with the loss of my son.
I hope some of these suggestions will be helpful to you as you deal with your own grief. I realize that everyone deals in their own ways. If none of these work for you, it’s okay. You’ll make your own way.
It’s About Faith
1. I have a VERY strong faith as did he. I know that he is at complete peace, in the arms of Jesus right now. I know that I will see him again when God decides to take me Home.
2. I know that God does not make mistakes. I might not understand His Plan, but I know His Plan is perfect. That is enough for me. (Who knows what horrible things my son may have been spared by dropping dead as he did? I know for sure that he didn’t suffer. He didn’t have to go through battling cancer. He didn’t have to face losing his dad or me.)
Remembering the Good Times
3. I remember the good times we had together. I smiled all the way through going through 1000s of pictures. It was so fun to see him as a child, teen, and adult, having a great time, acting silly, hugging his wife and/or children…
4. I write. I wake up in the mornings and just write what is on my heart at that moment. I write for my own gratification. It isn’t always for publication. However, I also write sometimes for others to read, publishing blog posts, either on my own site or on LungCancer.net.
5. I am a glass-half-full person. My mind is trained to look for the positives in life. Even as we were driving to the hospital, not sure if our son was going to be alive or dead, I told my husband, “There are two good things if he has passed away: (1) he is at perfect peace now and (2) his ex-wife can no longer use him as her whipping boy. I took comfort in those positives then. I still do.
You Gotta Keep Living
6. I have stayed very busy. I felt like my mind was in chaos and so was my house because I had let it go a lot since I started lung cancer treatments. I can’t do a lot about my chaotic mind, but I can clean. Even my cabinets are more orderly now than they have been in many years. (I have plenty more cleaning to do … so I will be kept occupied for a long time.)
7. I don’t think my son would want or expect me to quit living because he died. I imagine he would be encouraging me to continue living, continue fighting. During the first few frantic days after he died, I thought, “I’m quitting treatments. My reason for living is gone. There’s no need to keep fighting. I’m sick of going through treatments anyway after six straight years of it.” But, when the time came for my next appointment, I was there, getting my treatment.
No Matter What … It Can Always Be Worse
8. Someone else always, always, always has it worse or what you’re going through could always be worse. Knowing that somehow makes me feel better about my own circumstances. My son could have lived, but have been in a vegetative state due to lack of oxygen, he could have been diagnosed with some awful disease like ALS, he could have not met his wife and had 4 very, very happy years prior to dying, something could have happened to one of his children …
Well … these are a few of the ways that I have maintained a semblance of sanity. They are listed only as they came to my mind, not in any particular order of importance.
For 43 years, my son was pretty much my whole life. It is strange to realize that since he was our only child, and the only grandchild for my mom … we have no legacy left. That feels really weird … and changes my perspective completely on accumulating things… Things I always assumed would pass on to my son … can’t be given to him after all. (We do not see his children – the ex-wife made sure of that).
Needless to say, his death has turned our worlds upside down. We’re left with so many changes necessitated by his leaving us. But, life goes on for those of us still here on earth. We can wallow in our sorrow or we can honor his life by continuing to live our own. I choose the latter.
You must think I have lost my mind when I write that there are worse things than cancer. Most of us really haven’t thought so since we or our loved one received that awful diagnosis. And, maybe you’ll argue that I’m wrong, that there really aren’t worse things than cancer. Maybe it is just a matter of perspective.
Where I’m coming from
On November 2, 2018, I received a call that no parent wants to get. My daughter-in-law was calling to tell me that she was following an ambulance to the nearest hospital. My son had suddenly and unexpectedly quit breathing. No warning. Just, one minute he was fine and communicating and the next minute he was on the ground, lifeless.
Boy! I don’t know how you feel about it, but for me, 2018 has sped by like a bullet. I cannot believe that we are about to begin the holiday season. In some ways, I love this time of year.
What I love about this time of year…
I like the weather better, for sure. I live in Texas where it is hot a good portion of the year. I look forward to cooler temperatures and always dream of a “white Christmas,” though the likelihood of having one is quite slim.