It’s a real question to consider – when IS the cure worse than the illness? Medically or scientifically, it is all about the net result. If the net result from the treatment is worse than the illness (or potentially so), then the cure is worse than the illness. But how do you measure things like quality of life or the long term (years into the future) effects of treatment when you’re just trying to breathe or when you have goals that require staying on earth until the time specific goal is achieved? Most of us would take our chances I bet.
Over the past month three people I know through life, not because cancer, have died either from lung cancer or perhaps from the long term toll that lung cancer treatment takes on the body. Their lung cancer journeys were all different. None were elderly. All lived life to fullest until that was simply no longer possible. My thoughts of healing and strength and prayers are with their families.
So how do we know what to do when faced with unknown options? No one can say for sure what the longterm effect of some of these treatments will be. That’s one reason we have clinical trials, and research studies over many years. Well, for me personally in my situation the answer is easy. Unless the quality of life with treatment makes it impossible to find joy in the everyday on most days, then I choose life here for a while longer. And that means treatment. We had a little glimpse of what life without treatment was like. We know I wouldn’t have been able to sustain that for long.
We know too that this treatment comes with a price, not just a monetary one. I think it is impossible to avoid it changing many lives forever. I say “we” often because this journey is our journey, mine and Dan’s, along with our family. I don’t want to make decisions alone as they are not just for me. That’s not how we do life. And seriously, I wouldn’t last long on my own. It is wanting to be part of “we” that keeps me going. But the price is high, for everyone. Maybe it’s just what families do, but I sure wish it wasn’t something they have to do, and I think it shouldn’t have to be.
Last fall I met a woman who chose treatment for a cancer many years ago. It was successful – she’s here, decades later! She described to me the longterm effects on her body. It was impressive, not in a good way. She has had multiple medical procedures and has some serious health issues related to that treatment long ago. But she also described many of the things she has accomplished in the time “given” to her by treatment. A trade-off, I guess.
We all have to choose our own paths. My heart goes out to the loved ones of lung cancer patients. Whether it is a stage IV diagnosis caught too late, or an early diagnosis that can be cured, the journey is tough. I know. We traveled it with my grandfather and my father. Whether it is months of caregiving or years, the primary focus is on the patient while often caregivers are working, filling the household role of the patient, and doing the caregiving. There is not an appropriate framework of support for them, and with the focus on the patient, caregivers often don’t advocate for themselves.
Maybe someday not so far off treatment will be available for lung cancer to be considered a chronic, manageable disease instead of the deadly one it is now. Not a cure, but safe treatment for a managed disease.
There are things we can all do(regardless of treatment choice):
Reach out to some of those caregivers. (I can think of many times with other friends or family members when I wish now I’d done more, hadn’t thought I was too busy or someone else was doing it or it wasn’t needed. I can do better going forward.) Just knowing you are thinking about the caregiver helps. Maybe see if you can drop off a meal, offer to hang out with the patient so they have time for themselves, offer to do some “chores”. Just the offer may really help.
Support increased lung cancer research by contacting your representatives. We can change this for future generations. There are exciting things happening in the fields of targeted therapy and immunotherapy. If you want to help with a donation, please consider supporting ROS1 cancer research https://www.lungcancerfoundation.org/patients/ros1/contribute-ros1/
HOPE, always have hope.
As you can see below, we are at our Salt Pond camp, enjoying the everyday every day. And yes, even Dottie and Matilda, our two Nigerian dwarf goats, are here and loving the oak leaves. We had a wonderful family weekend at Spencer Pond Camps. I’m looking forward to the start of “Camp Gramma” next week, when I’ll get eased back into the fun with 2 of the four “campers”. I’m working hard at staying healthy in every way I can, mind and body, and reading everything from Winnie the Pooh to Radical Remission (both inspirational!). I plan to enjoy every minute of the grandchildren’s fun. A busy summer ahead with many more opportunities for making memories.