votives at the Lourdes shrine at Notre Dame
Even after 18 weeks, I am having trouble with a very simple concept: “I have cancer.” I don’t understand what that means.
I was desperately searching the web for some positive sign that my sense of taste would come back quickly once chemo was over, and read this on a blog: “During chemotherapy, even water can taste bad. It’s very important to keep hydrated. Try using ginger or lemon.” Ginger worked for me for a few weeks, then it started burning my tongue and I couldn’t face the thought of it. These days, I’m using lemon to make drinking water a bit more palatable. And somehow reading this made me feel better.
I’ve been on a chemo journey.
The word “journey” is overused, but as the get well soon cards came in at the beginning, and I opened them gingerly hoping people somehow knew what to say or that there wouldn’t be a bald announcement of my mortality in there, I embraced the word journey. Yes, I was on a journey. It was really helpful. One week at a time, with energy and nutrition and a day or two at work and misters and humidifiers at night, sinus gel, baths, walks, one bike ride…
In May I heard a guy on the radio using cancer in an extended metaphor. I wondered how far he was going to take it—it bugged me. He took it all the way—”metastasized,” “growing like a tumor,” “we have to blast it and kill it before it can grow anymore.” He took great pleasure in showing what a perfect, absolutely perfect, metaphor cancer was to whatever he was talking about. I wanted to punch the guy in the face.
I have never gotten comfortable with how to say “I have cancer.” I use phrases like “I’ve received a diagnosis of cancer” or “I was diagnosed with cancer” or “I’m being treated for cancer.” I don’t actually “own” the cancer itself. And I use “treatment” now instead of “chemotherapy.” How many treatments left, where I am in treatment, the effects of the treatment.
The language I read, when I read the books I’ve bought about it, is of “disease.” Ovarian cancer is a disease and “survivors” live with the disease. It is treatable but, at stage four, not yet curable. So I have a disease. And this disease has made me even more compassionate and aware of other friends who have other diseases: RA, MS, HepC, HIV, Crohn’s. All these shorthands for malicious diseases that sap the strength and degrade systems. And I see the courage with which they “manage” their diseases and go through treatment and live their lives. With joy and love and risk.
I am looking back, and amazed at how vital I stayed on this journey for so long. Those days I was drinking smoothies and making meals! Those Sundays getting ready for the week’s ups and downs. Those nights I was up and my brain and imagination were so active. That will come back.
Also, as times to get cancer go, this has been one full of encouraging news. There’s been a significant amount of coverage of cancer in the last six months since President Obama announced his “moon shot”– curing, not just treating, cancer. It’s been possible to learn all sorts of things about immunotherapy and the hope those therapies hold out.
Mostly, though, it’s just a swirl. Surreal in so many ways. And I know I’ll forget a lot of it, because my brain is off kilter, and because it is so different from ordinary life.
One thing that I’ll never forget, though, is the support I’ve received. Bussho Lahn, a zen priest I know in the Twin Cities, hearing how I was doing these last few weeks, took the prayer beads off his wrist and had a friend bring them to me. “She needs these more than I do right now,” he said.
Yesterday I posted on Facebook this photo of the first zucchini blossom in my garden. It’s a simple zucchini blossom, in a world where people are already getting more zucchini than they know what to do with. But that photo got 48 likes in a few hours on a holiday weekend. Seriously– that kind of thing brings tears to my eyes. I feel so many people on my side.
And when I finish this current treatment journey, when I see the trailhead and make my way to the parking lot and my car, where there is a fresh pair of shoes and a Diet Coke in the cooler, and make my way, braking to slow the car down the mountain, back into real life, I will remember that love like I remember swimming in ice-melt pools in the Sierra Nevada, a place called “Desolation Wilderness” where I didn’t find any desolation at all.
You are a well person dealing with cancer. I am glad you do not own it. I am a well person dealing with diabetes. I use an insulin pump and go through many thought processes each day about what this disease is doing to my heart…kidneys…eyes. It is a journey that I don’t publicize but I journey with you-in the daily challenges and also daily victories. I admire you and love you.
I don’t know if this helps, but my mom lost her tastebuds during treatment, but they did come back! Yours will too! There are many zucchini waiting to be made into something delicious for you! Hang in there!!! ❤
This is so beautiful, transparent, genuine. We are cheering you to the finish line of this… You are not defined by cancer but how gloriously your body has taken up the fight. Looking forward to your healing, restoration, strength… And taste flowing back to you as the treatment no longer demands all and you will again enjoy everything from your new perspective. I’m so glad you tangibly feel the love that is surrounding you.
Peace be With You
How I enjoy reading your words! Your mom told me carried a little purse filled with words when you were little! Yes, I pray and YES GOD HEARS OUR PRAYERS! BELIEVE and remember to celebrate Christmas is July!
Love and prayers!
Colleen
I admire you too, Debbie. I like that formulation: a well person dealing with cancer. You are such a fully alive person and I’m so happy to see your smile.
I hear 4-6 weeks… hopefully just a little bit before i have surgery. To be able to have an occasional shake while recovering from surgery will be great.
My mom called it “the C word.” She never owned it, and she never let it own her — not when she was told she had less than a year to live and not for the next 13 years she was alive. You keep fighting the good fight, Susan. Your corner is overflowing with people who are pulling for you. Sending big hugs from Colorado.
—I wanted to punch the guy in the face.— Sounds like you are back in business! 🙂
Riveting words you have written, again Susan. Thank you.
Catherine of Siena wrote: “There are more tears shed over answered prayers than over unanswered prayers.”
PS: Glory to Zucchini! 🙂
That’s really encouraging, Terri! Thank you for posting that.
Sending you strength, courage, hope and love. We are all cheering you on through your journey. Hugs to you, Susan. I’ve been reading your books and I am in awe. Xoxo
Thank you, Shannon! So glad you’re enjoying the books!
hahaha! Anger doesn’t really come naturally to me, so when I feel it, I give it full sway! or swing!
My cousin Trudy gave me your site to read. I just completed my 18th week of chemo for fallopian tube cancer. All went well except for the chemical burn type things on my feet and now my feet are swollen. Tell me which part of your blog to read when you had this. Thanks
Hi Jayme, I’m just seeing this now. So sorry for the trouble with your feet– mine are unfortunately still numb 9 months after treatment with neuropathy. Hopefully yours will heal quickly. I think you can click on the “cancer” category and it will bring up just those posts. I hope you find the blog encouraging and helpful.