I’ve never been a fan of roller coasters or thrill rides. The ups and downs, the twists and turns, the feeling that I’m probably going to die on the ride. Not my idea of fun.
Getting a diagnosis of Stage IV or metastatic breast cancer (MBC) feels a little like being on a roller coaster or thrill ride, except there’s no getting off this one. I’m strapped in for life. I’ve never been on this Stage IV ride before, so I don’t know what to expect. How long will the ride last? One year? Five? Ten? Twenty years? No one can tell me. I’ve seen the charts that show the percentages of how many of us will survive and for how long, but I don’t know to which group I’ve been assigned. The statistics are just that – statistics. I’m hoping I’m in the group that will survive the longest, but I just don’t know.
Cancer is staged in numbers from 0 to IV. Stages I through III have an A, B, or C after the number to indicate how far the disease has progressed. Stage IV has no letter after the number. There is no Stage V cancer. Stage IV is the last – the Final Frontier.
The MBC ride starts with a jolt and immediately hurtles toward tests, scans, more tests, more scans, and while we’re at it, let’s throw a couple of biopsies into the fray. But wait, there’s more! COVID has arrived on the scene! Unlike my first cancer diagnosis in 2007, there was now a “no visitors” policy in place at the clinics and hospitals. My husband could no longer accompany me to my appointments and act as a second set of ears. All he could do now was drop me off, wait for my text telling him I was finished, then pick me up. I found that knitting helped occupy my mind and calm my nerves while waiting alone for yet another appointment, scan or test. Lots and lots of knitting. Anyone need a scarf? Perhaps a knitted washcloth? I have plenty.
I was told that cancer had spread to my ribs, spine, hip, and femur. Suddenly, I had not one, but three oncologists – medical, radiation, and orthopedic. As I met with them, each one was quick to assure me that a Stage IV diagnosis was not an immediate death sentence. “We can’t cure you, but we can treat you.” Comforting, but still… . I consulted and added Dr. Google to my medical team because we all know what an expert he is. Bad idea. He had me convinced that my death was imminent. I fired him and cancelled the rush order on my coffin.
Treatment began almost immediately, starting with radiation to zap the cancer in my spine, hip and femur. When I was told that I would be getting “palliative radiation,” I incorrectly assumed that “palliative” meant the same thing as “hospice” and again thought I was going to die sooner rather than later. This time, Dr. Google (OK, so I un-fired him) was kind and informed me that “palliative care” is defined as “compassionate comfort care that provides relief from the symptoms and physical and mental stress of a serious or life-limiting illness.” So, my coffin order is still on hold – for now.
My orthopedic oncologist was concerned about the integrity of my femur and warned me that it might be necessary to place a rod into the bone to reduce the chance of a pathological fracture. Her words were, “I don’t want your leg to break while you’re walking down the aisle at Vons.” I’ve avoided the rod-in-the-femur thing for now, but she did recommend the use of a cane. A cane? Really? Isn’t that just for old people? I did finally agree to use one and my initial “cane shame” is beginning to subside.
My medical oncologist is sort of the quarterback of my care team. She coordinates the tests, medications and appointments, and monitors my monthly bloodwork. I’ve started on what is called my first-line treatment. In my case, it is a targeted therapy, sometimes referred to as an oral chemotherapy drug, along with another drug that decreases the estrogen that feeds my cancer. I also get a monthly infusion of drug to help strengthen the bones that are being attacked by the disease.
I’ll stay on this first-line course of treatment until it no longer works – or in other words, until my disease progresses significantly. When it stops working, I’ll move on to a second-line and will continue that until it is no longer effective. After that, I’ll hopefully be able to move onto something else. I have quarterly scans to monitor my bones and organs for progression. Fear likes to creep in before those scans and like others with MBC, I suffer from “scanxiety.” Thankfully, at the almost two-year point, I am essentially stable. There have been small progressions and little blips but not enough to alter the current treatment plan.
While I’m thankful for “stable,” fear wants to lurk in the background, intrude into my peace and steal my joy. Fear wants me to think that each new pain means the cancer has spread somewhere else in my body. There are times when I feel sad and angry at what this disease is doing to me and what it will do to our family, especially my beloved husband. I’m grateful beyond words for him and whatever the future looks like for us, we will face it together. We are determined to live and laugh and love.
So, forgive us if you hear us laughing inappropriately over a line from the movie “Moonstruck.” In the scene, Loretta is driving her fiancé, Johnny, to the airport so that he can fly to Sicily to see his dying mother. Loretta asks him, “So how near death is she?” It’s one of our favorite lines in one of our favorite movies and we always get a laugh out of it. Laughter continues to be the best medicine for us. We invite you to laugh along with us. There will be time enough later for the tears.
Carol
Cancer has progressed to my bones. I pray that it never enters my soul.
Thanks Carol for your bold, brave words. 1 John 4:8 says “God IS love.” And ten verses later it says, “Perfect Love casts out all fear.” Jesus is God and it’s cool to note all the times He shows up in Scripture saying, “Fear not!” It is clear to me that He is sustaining you. He is the Fear Destoryer! I know He loves you and Marty and I know the J-Team is going to win.
Thanks Carol! Beautiful words from a beautiful friend! Ask Marty if he knows of any good tractor salesmen. Continued love and prayers!
Carol-loved your first post!!–loved the second one even more!! You’re getting better with each post!!! Keep up the good work!!! Bob
Aww, thank you Bob!
Carol,
Thanks for including me in your blog posts. I absolutely love your writing and your sharing of your journey. We (Chris, Shea, the girls, and I) are thinking of you and Marty with love and light.
Jane
Thank you, Jane! Marty and I appreciate your support!
I just now discovered your latest blog update in my spam–which I almost never check. I’m feel so thankful to have found it! I resonate with your fear of the unknown. Yes, fear is an intruder, a joy-stealer–but it doesn’t have to rule. Laughter & love, yes, a great strategy for combat! Thanks for including us; we are rooting for you!
Thank you, Joan. Glad you found it and I hope it helps. Letting fear rule can be crushing. It’s a constant battle, no matter what the circumstance.
Carol,
You and your writing are marvelous as usual! I laughed, I got a tear! I’ll get in line for one of your knitted creations like maybe a dragon or wonderful funky hat! Fear is a liar…
You and Marty are loved…
LeAnn
Thank you, LeAnn! I’ll try to find something wild and funky for you!
We definitely feel the love!
Carol,
By you being you, you impact every person you come in contact with in such a uplifting way. Your courage in sharing some of the intricacies of your health and more importantly, your reaction and perspective, is inspiring.
Love to you and Marty and prayers for you always.
Thank you, Lindsay! We love you back! 🙂
You have an absolutely God-given talent for writing about cancer with grace, humor and wit. Write more (not necessarily for your blog, but for yourself and for posterity, and for us, the people who love you. You don’t have to publish it now.
Other than that, I think you should take up yarn-bombing, wherein you cover everything in sight – lightposts, benches, fences, anything that doesn’t move – in knitting or crochet. You can look it up on “Dr. Google” for inspiration.
And I hope you got the wildest, fanciest cane that is made – one with racing flames on it for sure.
Diana, I can’t agree more with your entire response!
I feel honored and privileged to experience this glimpse of your roller-coaster ride.
I love your honesty.
I love your humor.
I love your perspective.
I love your spirit.
Too bad canes can’t be knitted, or you’d have the coolest around. If you ever start selling your scarves on Etsy, I’ll be first in line to purchase one!
Can’t wait for the next installment.
Thank you, Tammy. Knitted canes. Now there’s an idea!
Carol,
I love the BLOG. So wonderful to be added to this. I will be an avid reader.
As you know I had my brush with Cancer just after moving here to Nashville, TN. I sure miss you and Marty being right next door. Keep on Keeping on…..
Love,
Randy
Randy, how did I not know that or remember that? I hope you are doing well now.
I love your writing and sense of humor Carol. Thanks for including me.
Kathleen
Thank you Kathleen. Our sense of humor is a little warped, but it gets us through. 🙂
Thank you again Carol, for including me in your journey and your latest update. I know for me, you continue to be so inspirational. I am so happy you have your beloved husband by your side, who is traveling this with you. You are NEVER alone, albeit it may feel that way at times. Keep your beautiful face to the sunshine, and keep forging ahead! Sending continued love as always.
Thank you Katrina.
I love your writing, Carol. Almost as much as I love your spirit. Never give up!
Thank you John!
Wow Carol! Thanks so much for brilliantly sharing your truth and giving us a glimpse of what your treacherous journey with MBC has been like. You are a true warrior and have the perfect attitude to finish this battle as a champion with your head held high, knowing that you took the high road and didn’t let fear rob you of each precious moment it is offering you.
Just know that you and Marty have the loving support of the dozens of family members and friends who are blessed to be part of this amazing tribe you and he have surrounded yourself with.
Love,
Joe, Mike & Marjorie
Joe, thank you so much for your kind words and your support. We are indeed surrounded and blessed by such loving neighbors whom we consider to be family.