Sunday, November 16, 2014

Cancer Culture - Again

On Friday and Saturday I had the opportunity to spend time with some of my favorite people, the folklorists of Utah. Many have been my teachers, my mentors, my co-students, my colleagues, and all are my friends. I spoke with one of my professors and his wife - they have a son who has colorectal cancer, has had for quite some time, and with a weekly or monthly dose of chemo, he is living. He is taking advantage of his long cancer journey to educate the medical world about cancer - and how to answer sensitive questions that may or may not be asked by those going through cancer. Face it - until you have cancer and have been going through treatments, you don't even know what to ask. This man is providing answers for those who will come after him. I like that - although he is not healthy, he can still provide, his expertise, along with his education, will benefit others.

And so I have thought about what I wrote, way last January, 2013, about cancer culture, and I'm reprinting a edited version of 3 posts, below. Enjoy!

Cancer Culture - The ways of the folk are divided into three categories: make (material), say (cultural), do (customary). In every day culture or folk ways, these could be:
  •  Make - Sunday dinner - the same meal every Sunday, which then becomes customary as well.
  • Say - How did you sleep? Don't be late for school? How was your day? Good grief it's cold, Hi, Hey, Howdy, Whassup - these are things we say on a regular basis, words that are expected to come from us.
  • Do - make our bed a particular way, wear a specific clothing item for a specific day/time/event. Pray over the food, don't speak with food in our mouths. Check Facebook first thing when we get to work. And these happen on a regular basis.

When we make, say, do these "all the time" they become customs or habits, and when we involve others in our doing, they become traditions.

This happens also with special events:
  • Make - fruit cake for Christmas, colored eggs for Easter, corned beef and cabbage for St. Patrick's Day. Or - Christmas decorations, birthday cakes, reservations at the restaurant we ate at on our first date (which becomes a "do").
  • Say - Happy New Year, Happy Singles Awareness Day, Another Year Older, sing - Happy birthday to you, Happy birthday to you . . .
  • Do - Go to the restaurant we went to on our first date every year (reflected in the "make"), go to Island Park for our family reunion every other year, give gifts for birthdays, fold our arms in worship service. 
And now to Cancer Culture:
I'm not sure if I can make this into an itemized list, so let me describe what I've experienced -
  • Say - there are words that are only understood by those experiencing cancer and cancer treatments. "I'm a stage 1, grade 3, triple negative." "Oh, that's a cute hat." With the reply, "It's not there just for beauty." And the reply, "I'm a survivor; I . . . " Or, IV therapy, hydration, dex, let me know, terminal, metastasized, every 3 weeks, there goes a nail, no hair - anywhere; radiation tattoo, port, chemo sick.
And words cancer folks don't use - victim, patient, it could be worse, cheer up - which then would define who the insiders are and who the outsiders are - by the words, phrases they use. 
  •  Do - Clothing - v-neck t-shirts, button down the front shirts, stretchy pants, warm socks, layers, hats with liners, ill-fitting wigs. I have clothes I haven't worn this fall/winter because I don't have hats/scarves that match them! I have a pair of Dansko shoes I have not worn, because I haven't gone anyplace fancy enough to wear them! I know which yarn is the best yarn for hats, how to wash hats, how to tie scarves, how cold the back of my neck gets and how to wear a scarf and a hat together, and the beauty of wearing a hat to bed! I dress up for chemo and IV therapy - a lady last week told me, "You are the best dressed of all of Dr. Rich's patients. I know, I've been watching." Ha! What an award to win - something that doesn't matter to the outsider's world, but for insider's, it's "important"! 
    • And blankets - which belong in the make and do categories - the chemo room is cool, chemotherapy itself is not warm, and most chemo patients are cold from their situations. So a blanket - this season it's a "minky," (flannel, fleece) are so important. If you bring your own blanket, it's usually a gift - which is another "do," someone "made" and gifted you with that blanket. I've written about blankets in another post. As you can see from these pictures, there are fleece scarves and knitted or crocheted caps. These are gifts to the chemo unit - things that people make and then give/do.
  • Make - We make traditions! Some of those in the cancer world include:
    • The biggest traditions and initiation rites are that of giving and receiving - cancer patients, survivors, and their loved ones are gracious with tips for making it through this journey. They can give advice, always preceded and ending with a hug. Their advice is a gift. Those without cancer experience - no advice please.The patient moves from beginner to experienced once their first treatment is finished. Now they are part of the community - and are welcomed - with a hug.
    • Graduation is another ritual that only is important in the cancer world. In chemotherapy, once the last chemo treatment is finished, the patient gets to ring a ship's bell and receives a bottle of carbonated apple juice. The patient brings in a treat for everyone - usually donuts, bagels, or a cake. There is applause, pictures, and that's it! Scott and I wore our "Thank you" t-shirts and brought donuts. This ritual is taught by example, nothing is said or shared about it, you just follow what has already been done. 
    • The radiation oncology department does similar. 
    • I forgot to mention making hats - and giving them. I have soooo many, most are awesome, some are cute, and I've received a few that I will donate. I have never worn a hat, seriously never, and it has taken some getting used to. But I have grown dependent on them, and I think I look pretty darn good!   
    • There is also lots of breast cancer jewelry - just like hats, some tacky, some nice. I will wear some of what I've received as gifts until I finish my treatments.
  • Food plays an important role in a cancer patient's life. Food is something we make, say, and do. 
    • What to eat - advice is given, and stories are told, about what to avoid and what to embrace. Every breast cancer patient I spoke with could eat the Dreyer's fruit juice bars and Creamies brand creamcicles. Most folks liked yogurt as well.
    • What not to eat - avoid spicy foods, but eat foods with flavor. Some foods will have a metallic taste because of chemo, some people eat with plastic utensils during chemo, some say that chemo and food are similar to pregnancy and food - you don't know what you want to eat until the moment you're hungry. It's hard to cook while having chemo for this reason. It's also hard to bring in food for chemo patients because of this. (The first 2 months I lost 10 pounds because of my aversion to food. The second 2 months I gained 12 pounds because I was ravenous and on steroids.)
  • Folk Medicine
    • Of course there are things that benefit the cancer patient as much as the prescriptions given. And even oncology and radiation nurses share these tips. 
      • Candied ginger is great for nausea, so are See's Dark Chocolate Peppermint Patties!
      • Tea Tree Oil and Sally Hansen Hard as Nails are good for preserving nails. As is Gold Bond ultra-strength lotion. 
      • Rub tea tree oil on bald head during radiation. 
      • Senna is a natural stool softener - keep it on hand, don't use prescriptions for this. 
      •  Bathe in Celtic Sea Salts to reduce water retention and to leach toxins out of your system. 
  • More Do (unspoken rules): 
    • Naps are expected, and talking about taking naps or naps is expected and encouraged. 2 naps a day are applauded. 
    • Exercise is as important as a nap - 30 minutes a day of walking is said to encourage healing. 
    • Complaining is just fine, whining is not. Complaints about things one cannot control are expected: fingernail and toenail loss, smells, chemo breath, chemo taste, port access, blood drawn, weight loss, weight gain, chemo brain (forgetfulness, names, slow response), tingling in hands and feet, exhaustion, pain. Supporters can complain as well. Aches and pains can be compared, but not trumped. 
    • Manners are important - thank you, please, you're welcome, no smells (no perfume or heavy scents in chemo room). 
    • Sickness is allowed in chemo room, but do not talk about those who are/were sick and their sickness outside of the room. 
    • Chemo room remains quiet and calm. No speaking on phones (text or go into the hall, which is awkward with an IV tower). IPads, Kindles, IPods, books are acceptable forms of entertainment. So is sleep. Not really a place to socialize.  
  • Do Not (unspoken rules): 
    • Outsiders cannot give advice.
      • Sharing tips is great, giving advice is not so readily accepted.   
    • No joking about cancer by outsiders.  
    •  Self-help books, mind over body books, alternative treatments books.
    •  Cancer life is a liminal space - which cannot be judged or compared (I have never worn a hat in my entire life, pre-chemo. Now, I must.). 
    • Don't visit cancer patient during chemo or radiation treatments, unless invited.
Those of us with cancer need support and outside of the amazingly spectacular medical team I see 4 levels of support:

1.     Trusted 2 or 3
1.     These are the folks you sleep with, eat with, who see you naked (physically and emotionally), and are very close in proximity. 
2.     Cancer Mentors
1.     These are people who have had cancer, or have been part of this first group with a loved one. They are the folks who can be subjectively objective about cancer - sharing the tips, listening with empathetic ears, who can understand the aches and pukes, and who can tell you, "You go, girl," when you need that. They are also the ones who can say to a #1, "When my wife . . ." or, "My daughter made me . . ." They answer questions without asking questions. 
2.     I belong to a Breast Cancer online support group where I've been able to do a daily check-in, where I've been able to ask simple questions, and where I've gone to hear others' stories (thank you Colt for finding this for me). 
3.     Cheerleaders
1.     Oh goodness, this category is hard. I now understand why sports' teams have cheerleaders. Their encouragement, shouts from the sidelines are great motivation for working hard. They may have no experience with cancer, but they know their "team," and they have the love and separation to be able to be a strength to the 1's. 
4.      Caregivers
1.     Not that the above don't give care, but these are the silent ones, not necessarily part of that inner-circle, but eager to help however they can. 

So there you have it, cancer culture and cancer community. 


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