Call it Like it is: Maintaining the Will to Live
Musings from 21 Years of Living with Metastatic Breast Cancer
After this blog post, I’m done answering this question:
Are you a breast cancer survivor?
Done. Over. Fini-to.
People living with metastatic cancer of any type can refer to themselves as anything they want. Warrior? Great. Survivor? Fabulous. Thriver? Whatever floats your boat.
Yes, sarcasm flows in my veins but, really, I’m good with all of those descriptive terms. Go for it — for your own purposes but not mine.
These labels help inspire people who face life-threatening diseases feel empowered, strong, hopeful. Terrific. I’m happy they use these terms to overcome the dark thoughts in their minds that their illnesses will likely eventually kill them.
But not today. Today we live. Be positive. Be strong. “So stop being so morbid, Sandi, and just live. Be happy. Be grateful.”
Using labels like Survivor can matter when you discover your treatment has stopped working or the side effects of therapy are nearly impossible to endure. “I need to get over this and go on.”
Maintaining the will to live – that’s what it’s really all about – is important for ourselves and for the sanity of our family and friends. They don’t want us to give up and we don’t want to give up because of them. Never. Until we have to…and even then…we don’t want to stop trying to outlast cancer.
I lost my will to live one day.
In early 2017, after two years of brutal chemo bouts with Ixempra followed by Halaven, I found myself spending more and more time in my recliner. If I had to go to the bathroom, I’d wait until the last possible moment to muster up enough energy to walk 14 steps.
In between my frequent naps, I looked out the window. I saw neighbors riding in cars, walking their dogs and gardening. “I don’t have the energy to do ANY of that and my energy level is draining by the day. I don’t see an end to this.”
Then we received a much-anticipated call from my son. “The baby is here! He was born a little while ago.” My grandson.
And I wasn’t there. I couldn’t be there. Impossible.
My reaction? I sobbed. Ugly crying. Unstoppable tears.
This couple went through fertility testing only to find they would not likely conceive without IVF. During IVF, there were many ups and downs for my daughter-in-law. So many uncertainties. It was uncertain whether IVF would work, if the baby would survive through pregnancy, if the baby would be born with physical problems and even if the child would survive the birthing process.
Lots of tension. Lots of stress.
I was so relieved that my daughter in law was fine and the baby was fine. What a blessing!
Then my thoughts went here: “This baby will never get to know me.”
My daughter and husband were stunned by my tears, unaware of the thoughts in my head. My daughter looked at me and said “Mom, you’re scaring me.”
I thought about what she said and what it meant. She was afraid I was giving up. That I would soon die because I might say “No more.”
I scared myself. What happened to that urging inside of me that made it possible to wake up every day? What happened to my determination to slog through my 14th line of treatment until it stopped working?
Where did my will to live go?
Packed up and gone. I couldn’t locate it anywhere. AWOL.
I thought how calm, peaceful and wonderful it would be to fall asleep and not wake up again.
Then I thought, “Am I really finished here? Is this my last curtain call?”
It was at that point I called my insurance plan’s mental health helpline.
It took a few weeks to start sensing my urge to live again. But it happened. With therapy and medication. Now I feel more like me.
But I don’t feel like a survivor.
My daughter in law is a survivor of IVF. My grandson survived gestation and birth. Both are survivors of their situations.
To me, a survivor is someone who has been able to successfully walk away from a life-threatening event and goes on with life. Like the survivors of the Titanic. They got in lifeboats and were eventually rescued. Most went home. Many returned to their old lives. They didn’t get back on that ship except in their nightmares.
I’m still on the Titanic. I haven’t survived the event called “breast cancer.” I may be currently living with breast cancer but I’m not someone who has survived. I know my time is limited, even though I’ve beaten the odds of living past the magic five-year mark.
So, call me what you will if it makes you feel better to say it.
Tell me I’m alive because I have a positive attitude.
Tell me I’m alive because God isn’t through with me yet.
Tell me I must be doing something different to have lived this long with stage IV cancer.
But I know I’m alive because I still have the will to live.
Oh, and having a type of cancer that responds to current therapies helps a lot. A whole lot.
Good for you! Love and light to you.
I always say. I’m surviving metastatic breast cancer. Surviving so far. I so understand. Most don’t understand. I say I have cancer and always will be in treatment. I’ve stopped saying stage 4 or even metastatic to those I just come in contact with it. They say you look so good. Well thank you. I don’t say it but I am disabled. Doesn’t appear like it on the outside yet, but emotionally, the treatments, the side effects. The looming thoughts. I am surviving cancer to the best of my ability. That can all change in a month from now or more. Who knows. I am at 6 years, mostly bone. Possibly a lung thing emerging. Her 2 +++, ER +++ PR- I am a solider always on the battlefield sometimes the war is more intense than others. The strange thing is I hope to always be at war…..for as long as I can. A Warrior? yes, Daily. It’s a different kind of living, one I can only do just for today. Bless you Sandy, you have made a differ very in my life. You give hope and strength, honesty and action. Bless your heart.
I’m with you 100% on this ‘survivor’ designation. I’m still here almosr 9 years after a Stage 4 BC diagnosis, but I don’t exactly feel like a ‘thriver’ either. I’m nowhere near my old self…so who am I and what am I?
I guess you can say I’m lucky to wake up each day. I’m grateful my treatment continues to keep me stable and in remission. I’m fortunate not to have experienced progression (yet), or broken bones. I’m all those things…but that’s not the label that fits today’s cancer jargon.
I’m just a woman whose disease hasn’t taken her over (yet), giving her the will and desire to keep on keeping on.
I have called myself a survivor and thriver. Others often refer to me as a warrior. I understand the intention is to be supportive behind all these terms, but I have never settled on a good way to describe myself. I’ve passed the 7 year mark with my Stage IV diagnosis, but I still don’t have a good term. I don’t care for any of the labels and guess I just want to live as me and not carry around some label on top of everything else. I’ve often thought it fitting just to call me lucky because that seems to surpass any surviving, thriving, or warrior qualities I may or may not have.
Yes. Great points. One of the “label” problems is when presenting at meetings. When referring to people with early stage breast cancer, the accepted term is “breast cancer survivors.” But when referring to stage 4 BC patients, I often hear “MBC survivors” or “MBC thrivers.” I agree with you about not labeling individual people but when speaking about a group it’s challenging. So when I’m speaking at a meeting referring to us, I call us the “MBC Community” or “People Living with MBC.” Then there is “MBC Patients” that is often said in medical conferences. And, yes, you ARE lucky and so am I. Thanks for your comments.
Thank you Sandi. Well, if you’re not going to post or answer the question again, I may have to forward it on your behalf. If you experience this, (someone who always appears so positive and confident), then it gives us permission to be okay with our feelings, new hope, and the will to live.
There is always going to be someone behind you that needs to hear your words. Sort of like the last Cher concert. Yet, she still goes on as long as there is an audience. Blessings, Elaine
I’ve nominated your blog for an award! Check out my post on NoHalfMeasures! Love and light to you. ❤️
Thank you! I’ll have to go through all of the details on your blog once I get back from a conference this weekend. Looks like a very interesting project, one that provides additional voice to us bloggers.
Wonderful! I look forward to hearing about it.
Thank you for that last sentence. My daughter passed from MBC on March 20, 2018 after 5 years of treatment. She had a strong will to live and a positive attitude towards life. Her last words to me were “Mom, I don’t want to leave.”. Oftentimes I feel that stories like yours accuse her of not fighting hard enough and it breaks my heart to think that anyone would see her that way. She has 2 young sons and a loving husband who meant the world to her. She meant the world to me. I miss her every day. Dana was 41.
You’re right. There is a lot of patient-shaming going around that can end up making the surviving loved ones and friends feel angry. And this comes from people who are actually living with MBC. Their “forever a warrior” and “I’ll never give up” statements may make them feel empowered, but their words have great impact on those who have experienced the death of those they dearly love.
Thank you for your understanding