I have been granted a reprieve. My scans at the end of last month showed that I continue to be medically stable. While we are thankful for the news of “stable”, this reprieve feels more like a stay of execution. Merriam-Webster defines reprieve as an order or warrant for a temporary suspension of the execution of a sentence, OR a temporary respite (as from pain or trouble.) I’m two years out from my Stage IV diagnosis and my monthly visits with my medical oncologist have been pushed back to quarterly. One would think that would be good news, but it feels a little scary. A lot can happen in three months.
The struggle of those with an unfavorable prognosis is to remain guardedly optimistic. We want to hear that our scans show we’re stable, or even better, NED or NEAD – “no evidence of disease” or “no evidence of active disease.” In the MBC* community, we call it “dancing with NED.” Good old NED. We all want to dance with him. Unfortunately, he’s usually off dancing with someone else as his rude and uninvited brother (or is he a stepbrother?) pushes his way into the party.
I don’t even know if this brother has a name. I can think of a few names for him, but they wouldn’t look very kind in print. I might need to have my mouth (keyboard?) washed out with soap if I wrote them. I’ll just whisper them under my breath, for now, and keep my blog rated “G” or “PG.”
I had a funny image this morning of the evil stepbrother: When someone hears we have a terminal diagnosis, they will sometimes say, “Yeah, but I could get hit by a bus tomorrow, so what’s the difference? None of us knows when our time is up.” True, but that other person doesn’t have NED’s evil stepbrother breathing down the back of their neck, waiting to push them in front of the on-coming bus! THAT’S the difference!
Like everyone I know, I have good days and not so good days. On a good day, I feel optimistic and hopeful. On a not so good day I feel discouraged, fatigued, and afraid. Sometimes, I just feel angry. I want to make plans. I want to take a trip somewhere with my husband – someplace we have dreamed of going. I want to have a reunion with college friends or get together with my crazy, fun cousins. I teeter between being excited about making plans and wondering about all the “What ifs?” What if I don’t feel well enough to go? What if I need to sleep the whole time? What if I die and my ticket is non-refundable? What if, what if? OK, so now I’m being dramatic. And by now, you probably know that I love to quote movies, so I must throw in a quote by Bob Wiley in the movie, “What About Bob?” “What if I’m looking for a bathroom, I can’t find one, and my bladder explodes?” Anything could happen.
I want more good days. I want to spend time with the people I love. I want to laugh. I want to eat and drink with friends. I want to enjoy coffee on my front porch. I want to watch Hallmark Christmas movies. I want to buy more yarn. (Well, maybe not – I have quite enough in my stash, as it is, right now.) I want to love and encourage others. I want to always remember Viktor Frankl’s quote saying I can choose my attitude in any set of circumstances.
For now, I will continue my current treatment plan: 21 days on/7 days off an oral chemotherapy drug and daily doses of another drug to help the oral chemo drug do what it’s supposed to do. I will have quarterly infusions of yet another drug to help strengthen the bones that are being attacked by the cancer. I’ll continue to get regular bloodwork to see if the drugs have suppressed my immune system so much that I need to take a break in treatment while my white cells and neutrophils have a chance to recover to an acceptable level.
I’ll accept and be thankful for the reprieve I’ve been granted but will continue to scan the dance floor for NED. If you see him, let him know that I have a place on my dance card for him. And if I can’t obtain a full pardon, maybe I can negotiate a plea bargain for a commuted sentence. I’ll remember that none of us can completely control what happens tomorrow and will keep reading the Corrie Ten Boom quote by my computer: “Worry does not empty tomorrow of its sorrow. It empties today of its strength.”
So, am I thankful for this reprieve? Yes, absolutely. I’m thankful that I still have treatment options and that I have today. Deep down, though, I want a miracle. Then again, maybe that miracle is that I have been given today.
Carol
Cancer has progressed to my bones. I pray that it never enters my soul.
*MBC – Metastatic Breast Cancer
Dear Carol,
I’m joining you in praying and hoping for that miracle…
Thank you, Audie!
Does Frankl’s advise work for bruised reeds and dimly burning candles? (Isaiah 42:3) Was Victor born in South Dakota where backbones are Sequoia like? What would he say to the rest of us saplings? I have to cling to something bigger than my resolve and attitude which tends to wimp out when I need it most. I’m thankful God has a heart for the weak and infirmed! I’m thankful He promises to carry me when I can’t walk. I’m thankful He invites me to take hold of His strength. I’m grateful His grip on me is stronger than my grip on Him. And I’m thankful for every day He keeps giving you Carol –dear heart.
Carol ~ your outlook is amazing and uplifting to all! None of us are promised tomorrow, so embracing each day is so critically important. We easily forget that, moving forward with our daily lives. I too, want your good days to far outweigh your bad ones. No one is walking in your shoes, so it is impossible to understand exactly what you are experiencing. But, based on what you are sharing, it helps me somewhat understand what you are living with. Sadly, I will only be your neighbor here for another 3 weeks, then moving on. We will be close by, just 15 minutes up the 5! I miss our walks, our coffee time on your peaceful front porch, and all of our talks. You and Marty have been such lovely neighbors and friends….the first ones I met here 5 years ago. I will never forget you both being so warm and welcoming. Sending you both tons of love and hugs. Once again, keep that beautiful face to the sunshine!!!
Thank you, Katrina. We will miss you as a neighbor but I’m glad to know you’ll not be too far away. I’m hoping for many more good days for you, too!
Yes, the big miracle is that we have all been given today. Why is it that we so easily forget? Thank you for the reminder.
Thank you, Joan. It can be easy to forget.
Carol, Man’s Search for Meaning is one of my favorite books, Victor Frankl really spoke brilliant words. I am glad you have chosen a sunny-side-up attitude! Thank you for continuing to share and tell your story. Much love to my sunny-side-up friend!
Thank you, Didi. I love his quotes. If anyone had a right to be angry and despondent, it could have been him, right?
Praying for you and Marty! Take care!
Thank you, Sandy. Love to you and Bruce!
I danced with NED once. For a few short he chose ME! It was a glorious time, however, as fast as he showed up, he was gone again.
Kelly, I’m sorry NED abandoned you on the dance floor!
You are such an amazing writer Carol! Thank you for sharing with me your blog! Thank you for reminding me the importance of staying present! Super glad to have read this and be blessed by your gifted ability to connect with the reader in such profound ways!
Thank you, Tasha!
Carol, I for one feel so grateful to able to keep in touch with your progress and even more the opportunity appreciate your beautiful writing. You are an inspiration to all of us who have the opportunity to share your journey. Thank you so much. Anne Rast
Thank you, Anne! We are grateful for you and Bob!
Carol–In your next to last paragraph, you talk about “to SCAN the dance floor for NED” That made me laugh after having read your previous post on “Scanxiety”. I visioned a giant CT scan machine hovering over thr dance floor looking for NED!
Bob, I’m glad you caught that! I’ll take the biggest scanner I can find to search for good old NED! 😝
Love your posts, and look forward to each one.
May you keep dancing — preferably with the dance partner of your choice (not the rude step-brother one!).
Tammy, it’s possible NED heard that I don’t dance very well. Maybe he’s seen me dance. That’s a scary thought.
Dear Carol, your authentic words touch me deeply, especially the part about the stepbrother. It gives me pause…. deep down I hate him….. then I remember God sends the rain on the good and the evil. So I’m praying gentle rain will transform the stepbrother into beauty. Somehow. Enjoying the miracle of today with you, Linda
Thank you, Linda. Miracles are all around us, right?
Carol God Bless You in this valiant fight!! So glad to be back in touch with you. I’ve thought of you and Marty so often wondering how you were. No idea you were fighting for your life my friend!! Love, hugs and many continued prayers for you!! Xox, Nesja
Nesja, you have no idea how much your words mean! Thank you for your love and encouragement!