Oct 15, 2013 8:00 AM

Author: Sandy Brass Jenkins


A dog-germ-frenzy-fest like the one Lucy throws after Snoopy kisses her in the face was what I had in mind. I am never one much to worry about birthdays, but this approaching one was a real life-marking event. Yet, what was I thinking? Here I was 20 (now plus two) years out from a mastectomy for breast cancer! Nope, we cancer survivors celebrate aging. One more birthday, is one more year of life. I would bill it grateful aging!

Cancer

At 39 I had three daughters. One would be at junior high in the fall, one would still be in elementary school, and the youngest was just graduating from Kindergarten. I had just picked them all up from the last day of school, headed for summer vacation, with a quick stop at the OB/GYN. But the visit wasn’t quick. It went on for hours. That lump I had felt wasn’t getting smaller. It was getting bigger. It even had a name—infiltrating ductal carcinoma. I heard a crash of timpani drums. (I didn’t know that background music in movies was real!) Tears rolled down my face; I needed to live to take care of my girls. Within five days I had one breast.

Well, it was tragic for me personally and those around me, but thankfully, not all that compelling of a survivor story. There were no real complications. Not much drama, which was good. Everyone had advice, of course, ranging from encouraging me to eat wheat sprouts to not using deodorant with aluminum it. The best counsel was from my elderly neighbor, which was to avoid housework and eat lots of chocolate.

Six weeks after the surgery, I had chemotherapy. Later on I had radiation. Then five years of tamoxifen. Still, blood tests and yearly checkups. More of a specter than recurrence of cancer is the difficulty getting medical insurance with a pre-existing condition. And then there are my daughters at risk and coming in range, which begins ten years down from the mother’s age of diagnosis. One has already had benign lumps removed from the left breast and is monitoring thickenings in the right breast, as do I. But, there’s always hope. And the little one who was just graduating from Kindergarten? She recently graduated from law school!

Life After Cancer: Huntsman Cancer Institute Volunteer!

Now I volunteer in the Breast Care Center, the outpatient clinics, and the infusion room and also as a patient education representative for Huntsman Cancer Institute at the University of Utah. I love to see breast cancer patients all decked out in their pink and bling coming in to face their appointments. I keep an eye out for the fearful experiencing the first-time visit, the anxious husband, or the sick who find comfort in talking shop with someone who understands. Like being at the proverbial bus stop during a rainstorm, strangers become friends when they are huddled together under a shelter. It always amazes me to observe those receiving infusions peacefully watching TV, reading books, working on their laptops, eating lunch, taking a nap, or visiting with friends and loved ones. It’s so different from my own experience 20-plus years ago.

Hair loss is a big topic of discussion. Losing it during chemo is pretty common. Within two or three weeks it starts to thin and then come out in tufts.
Eventually a lot of us opt to just shave it off. The shedding becomes a nuisance, and it’s all coming out anyway. Some folks lose their eyebrows, eyelashes, and nails. But it all grows back, much like it was before. For the duration we share ideas about what headgear works the best – baseball caps, beautiful cotton scarves, cute hats of varying fabrics and styles depending on the season, and gorgeous wigs. There are a lot more options these days.

My neighbors and friends could never tell the difference between my real hair and my wig. I used to tease them that I deliberately kept the wig messy so it looked natural. At Huntsman we have a lot of new hats and scarves donated for our patients. Crocheted ones come in plentifully during cooler weather, but we always need lighter weight coverings for the summer as well.

Celebrating A Milestone

Best of all is when someone finishes their chemotherapy regimen. It’s an occasion everyone looks forward to. Having grown attached during this time of personal anguish and vulnerability, though, saying goodbye is sometimes a hard thing. It is fun to ask patients how they plan to celebrate. One patient handed out 100 Grand Candy Bars to the staff in appreciation. When the last infusion is completed, nurses gather in a semi-circle around the patient and sing them a special ditty about being done with their chemo. Then the patient is gifted with a “graduation blanket.” These blankets are usually fleece lap throws donated by community members and youth groups. Huntsman is a non-profit and does fundraising as well as receives grants, but we are on a budget like everyone else. That’s why we treasure these donated blankets. We need them summer and winter.

One particular aspect about being a volunteer I like is that I sometimes hear things that a patient wouldn’t say to a doctor or a nurse. Patients don’t want their care compromised, but the vision of University of Utah Health is “a patient-focused health care system distinguished by collaboration, excellence, leadership, and respect.” The staff always wants to receive my feedback. Most often, though, what I get is how nice the staff is. “Everybody is so nice here.” Even the address at Huntsman is 2000 Circle of Hope.

Satisfying beyond measure is encountering patients at the airport, or at a retail establishment, or at the library. They run up and hug me like we are long lost friends. We are. We are all in this together. Being a survivor puts things in perspective like that.

For more information about Huntsman Cancer Institute, or how to volunteer, see http://www.huntsmancancer.org or contact Blanca Raphael in Volunteer Services, blanca.raphael@hci.utah.edu, 801-581-7169.


Sandy Brass Jenkins

Sandy Brass Jenkins is a freelance writer, has worked in medical offices, and enjoys family history. She has also volunteered with refugee resettlement and humanitarian service projects.

breast cancer volunteer service

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