Soon into my cancer care, I somewhat unintentionally started developing small, mundane rituals around my house.
After my first surgery, I had a daily pattern. When I could muster up the energy, I would sit in a warm bath and listen to Patsy Cline. The bathroom was a world away from the rest of my studio apartment where my mom and I were living side by side. Getting into the tub felt like a vacation, and a major accomplishment. My world had become so small, so boring, so comparatively unproductive that taking my Patsy Cline bath everyday felt like a tangible accomplishment.
I typically despise routine, schedules, and predictability. But so many things that I could formerly count on, like having a social life, working, paying bills, were thrown out the window when I became a young adult cancer patient. I wanted just a shred of something I knew I could count on; I needed to become a tame control freak.
During my second treatment, I instituted four hours of alone time each day. I sent my mom packing, unplugged the phone, powered down my computer, and sat on the couch looking out the window. I simply stared at the bare tree branches for four hours each day. My mom probably thought I was totally depressed. But I just needed time to myself. It was my anchor. Everyone around me had places to be at certain times – work, class, dates. I needed a schedule to my day so I wasn’t just floating through the murkiness of unmarked time.
A lot of people I interviewed in Everything Changes had ways that they needed to spend time during and after their cancer. Greg spent long stretches of time alone just working on his boat. HollyAnna loved to go up to the mountains, sit, and watch the water flow down stream over rocks and stones. When Wafa’a lived with her parents, she’d retreat to her room, lit candles, listened to Nina Simone, and read Milan Kundera.
Do you have any little rituals that get you through the hard times? Have you ever felt compulsive about them? Do you do them even during times when you are well?
Read Everything Changes: The Insider’s Guide to Cancer in Your 20s and 30s to learn more about how I coped with staying sane during cancer care.
“Everything Changes is, without doubt, the most forthright, emotionally sophisticated, and plain-old valuable book of its kind I've seen.”
November 30th, 2009 at 9:02 AM
For me, work has always, always been my anchor. (I even smuggled my laptop into the ICU!) Even if the tasks are small, just feeling like I am on top of something, anything, when I am acutely ill makes such a difference for me. Sometimes I can only manage some e-mails or lists, but having my computer with me, and my music (on repeat) gives me a sense of order when everything else is chaotic.
November 30th, 2009 at 9:53 AM
when life gets to be too much, I hibernate and have marathon housecleaning days. straightening the fringe on my blanket, cleaning out my closet and sock drawer. going through the file cabinet to shred. a couple days of mind-less, deep-cleaning can turn my brain off for a bit and let me focus on what is next! it has saved me from going crazy on more than one occasion, the way me life is, you would thing my house is spotless!
November 30th, 2009 at 1:46 PM
It varies from time to time, but the biggest, most consistent one for me has been to lay on my back on the floor, blast some kind of music (Usually one specific playlist, but it’s subject to change), and then toss my size 3 soccer ball repeatedly toward the ceiling. I realize how odd it sounds, but it definitely helps to turn my brain off, or at least focus it, for a few minutes.
November 30th, 2009 at 5:14 PM
Frank - that doesn’t sound odd at all. It sounds brilliant. Mary - I wish I were as constructive as you and my house were as organized. Laurie - You deserve some kind of award for being crafty enough to sneak a laptop into ICU. How you had the energy to work in there I will never know!
November 30th, 2009 at 5:14 PM
I bake. I am forced to focus on the measurements and the physical work at hand. I spent the last four days doing nothing but baking (for holiday gifts and as part of a volunteer group that bakes for U.S. troops) and it really helped me stay in the now and not worry about my upcoming treatment.
I also have a stuffed cat that I sometimes just lay in bed and squeeze close to me when I feel sad. I’m a bit upset that she will become contaminated if I do that after the radiation treatment so I will have to put her away. :-(
I know a lot of “wellness” articles talk about doing yoga as a mental and spiritual practice. I do it once a week but only as a physical practice. The first class I had, the teacher told us to “think about circumstances in our life that we are dealing with” and I started to cry, so I knew I couldn’t go there or I would never make it into a pose. (Downward facing sniffling dog! Bawling warrior! Sobbing sun salutation!)
November 30th, 2009 at 5:42 PM
Courtney, Your comment reminded me of a quote from my book. It comes from an interview I did with a lymphoma patient named Wafa’a who said this about going to yoga:
“People were always telling me to do meditation, do yoga, and I’m like, ‘No, I don’t want to think. I don’t want to be real. I’m trying to forget. Don’t ask me to stop running.’ I started crying in the middle of class ’cause we were pushing our bodies so much, and I felt like my body is this worthless piece of crap.”
These cathartic moments that come from yoga, being still are sometimes wonderful, but I’ll take them in the privacy of my living room where there isn’t all the weirdness of social eyebrow raising going on about the drama in my life.
When I was first recovering from treatment I took a free yoga class for women with cancer. It wasn’t at a hospital but at a regular yoga studio. It was packed. 20 - 30 women each week. Of course I was the youngest, but I didn’t really care. It’s funny because in this environment, it was all about just doing the work, there was nothing in the class that made any of us feel introspective, weepy. We weren’t challenged to think too deeply about our experiences. It was just yoga with special attention given to our positions and energy levels because a lot of us were physically challenged at the time. I appreciated that we weren’t being treated any differently as cancer patients. We came for a workout and got it in the company of other women with cancer. Very cool.
November 30th, 2009 at 11:09 PM
My anchors are my dogs - cuddling with one of them for as long as it takes to get centered always works. I hug them, I cry with them, I groom them, we snuggle together and I know that the world will level out.
The other anchor - music. I have a couple of albums (now reissued as CDs that are on their very own playlist - Kay Gardner, playing the flute, in a 10 min. long piece called Lunamuse from the Moon Circles LP (remixed now onto a CD called Ocean Moon). Cris Williamson singing her way through The Changer and the Changed (my favorite CD of all time.) Joni Mitchell’s Blue, and Court ‘n Spark. Pretty much anything by Holly Near. And yes, Pasty Cline. ;) It’s what my friends and I call our woman-power playlist. Now it also includes Allison Krause, KD Lang, Bonnie Raitt, KT Tunstall, Anna Nalick. When we’re together, we CRANK this playlist. When I’m alone, listening to it reminds me that I can do anything.
December 1st, 2009 at 6:03 PM
TV. Thank God for mindless TV. Sometimes I am soooo tired, that’s all I can muster. And when I watch reality TV, I realize, well at least I am not a real house wife of NJ.
December 1st, 2009 at 6:55 PM
TV too. Hours and hours and hours of it. Seriously - I know all the story lines of all the soaps. Pretty sad for a person who was always too busy and out to much to waste time in front of a box before. Oh, and I spend A LOT of time imagining what I would be doing right now if I hadn’t have gotten cancer. I have a whole other alternate life going. It beats the one I’m stuck with hands down.
December 2nd, 2009 at 4:16 AM
I’m living (or dying) with cancer myself. Terminal colon cancer, another year is sheer optimism. But in all the articles and literature I’ve seen, yours is one of a kind. As well as the rest of what I’ve read and seen here (web sponsors), just the fact that you would order your mother out of the house for 4 hours at a time just for your own benefit says it all.
You’re a spoiled little brat who had a brush with a serious disease and learned nothing from it. The least of which was an appreciation of others, including your own family. What you have learned apparently is how to make a quick buck off the desperate misery that would draw the unknowing to your self-centered, egotistical tripe.
December 2nd, 2009 at 11:09 AM
Dear Steve,
I am truly sorry to hear about your terminal colon cancer. I hope that you have as much ease and comfort as is possible whether it is in living or in the process of dying.
I welcome opinions on my blog, whether they are supportive of my work or not. To clarify, I do not have web sponsors nor do I generate any income from hits, though I do encourage readers to buy my book if they would like.
You bring up a really valid point about the brattiness of sending my mom out of my house. She and I have talked about this a lot. We are extremely close and have been both well before and after my cancer diagnosis. It’s cool that we can have very honest conversations about this stuff. During those hours when she left my house each day she was able to run errands to the pharmacy and the supermarket and spend one-on-one time with my great aunt who lived in the area. But that’s not to say it was a bed of roses for her. It was actually really hard as your comment indicated.
Years have passed since my second treatment and she’s told me that my asking her to leave the house was hard on her. I asked her why she never said anything about it to me at the time. Her reply: “It was an extremely rough time for you - you needed to worry about getting better not about me.” She has told me that she never wants me to feel guilty about it, and I don’t. But if I were to need alone time again in such a situation, we agreed that it would work better if my friends would arrange to take her out to the movies, spend some fun time with her so it was a nice break for her too rather than just a shooing out the door.
It was hard being crammed into a 500 sq. foot apartment day in and day out with almost no privacy. We both had feelings that were not perfect - I wanted alone time; she had days when she wished she were back at home returning to her normal life instead of taking care of me. I think this is realistic. Not pretty, but realistic. I think our unconditional love got us through. She says she felt 100% appreciated by me. I’m glad it showed because I couldn’t have done it without her. She is amazing.
I’ve heard a lot of people say they gain love and appreciation of family from cancer. For me it’s different. I grew up within walking distance from all my cousins, aunts, uncles, and grandparents. My grandparents were extremely didactic and talked a lot about the value of brotherly love and family love, about doing good for your neighbors and supporting one another in good times and in bad. We are an extremely tight knit family who have nursed each other through multiple cancers, deaths from cancer, multiple family members with Parkinson’s disease, and death from heart attack. Still, I don’t really think it is the diseases that have brought us closer to each other. I think we have just always had that. For this, I’ve been extremely appreciative both before and after my diagnosis.
All my best to you Steve, Kairol
December 2nd, 2009 at 2:42 PM
i have not been a cancer patient myself but a caregiver for my mom who had myeloma and also my grandmother who had breast cancer. it was such a taxing experience but art got me through it. i couldn’t think or focus until i started bringing my sketchpad to the hospital. i imagine that since both of my grandmothers, my mom, aunt and uncle all battled cancer that someday i will too. i only hope that my outcome is better since they all lost their battles. since art got me through their losses i use it to support awareness and donate a portion of the proceeds. i am always delighted to hear stories of survival and hope that one day all cancer stories will be stories of survival. i commend you all for sharing your stories and for your courage.
December 2nd, 2009 at 11:24 PM
Gosh, that’s a bit harsh Steve!
I’m likely to only be around another year or two as well - and I am the first to admit, I have turned into a complete b*tch as a result of cancer. I was actually a fairly nice person before this happened to me but now - well, my parents would be better off without me! I haven’t coped with losing the life I had at all and I have been pretty awful to others as a result (short tempered and super sensitive, particularly to all the misinformed ‘advice’ I’ve been getting). I do try not to react the way I do - but I find it best to distance myself as much as possible for the sake of others. I can’t help but resent that my life is going to end about 50 years before the average life expectancy and I’m not a good enough actor to hide it.
Not everyone has a sudden epiphany about the meaning of life as a result of terminal diagnosis and not everyone copes with it with grace and forbearance.
I really very much doubt that Kairol spent so much time travelling all over the country listening the stories of other cancer sufferers as a money making exercise. I can imagine it would have been pretty heart wrenching, especially knowing some of those people that she met weren’t going to survive.