Source: A Cardinal’s Song
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I belong to an appendix cancer support group, and one of the non-words I see quite often in posts is scanxiety, a condition related to the anxiety felt about medical scans that are given regularly for an indefinite amount of time after cancer treatment. In the beginning my scans were spaced three months apart; now they are six months apart. I’ve gotten good at coping with the anxiety nowadays (four years post diagnosis) most of the time, but when I get to the day before testing, as I have today, I find my mind casting away from anything productive.
My creativity is gone. I can’t concentrate on writing my novel or even reading someone else’s novel. I want to talk about it, but I don’t want to sound like a hypochondriac. I don’t want to seem negative. I don’t want to be told not to worry, everything will be fine. Even though I know it probably will be.
The thing is, I’ve never gotten over that initial out of nowhere diagnosis. I can only say that I feel vulnerable to invasion, or worse, that I feel like an unknowing host. I don’t understand cancer. There are so many different kinds of cancer, so many different treatments, so many different outcomes. Mine, Goblet Cell Adenocarcinoid Cancer of the Appendix, is supposed to be quite rare. It doesn’t seem so rare when I read the stories in my support group.
Sometimes I think I should drop out of the group; it reminds me daily of something I should not dwell upon. I believe in the power of positive thinking, and maybe reading the very real cancer stories, takes some of my shine away. But I also think that I should buck up—you know, be there for those who ask for a prayer or just need to vent and need to know someone out there really hears them.
I rarely participate in any length, usually just a word or two. Others in the group are much better at knowing what to say. Quite a few of them even offer up-to-the-minute cutting edge medical information, where the best hospitals are, how to connect with an appendix cancer specialist, the ins and outs of health insurance, tumor markers, treatment experiences—all sorts of really important information. I can’t help but feel I haven’t found a place of usefulness within the group.
And here I am tonight, inexplicably sad about the way that cancer changed my life and knowing I might be able to get some help from the group if I could just express myself without sounding like an infant. Most of the posts I read are written by or for those of us who are currently in the throes of the worst of the disease—those reeling and just diagnosed, those going in for their 2nd, or 3rd, or 4th surgery. Those who are in palliative care. The loved ones of those recently passed who write to break the news to the group.
And here I am feeling pretty darn good. I am one of the lucky ones. Makes me feel like a phony just wallowing in a selfish bout of survival guilt. And yet. And yet I am sad. Sad that my life changed so drastically since my initial appendicitis attack. The appendicitis that turned out to be hiding cancer.
Four years ago I was a teacher living on a mountain, surrounded by family, friends, students, colleagues, and neighbors that I loved. My four grandchildren all lived within a few miles of me.
That is not to say that my life is not good today, but it has changed dramatically. I miss my old life. I miss my kids. The circumstances of my life after cancer and my second surgery have impacted almost every aspect of my personal life and my career. Not all of it is bad, but some of it is. I’m not going to lie.
Sometimes survival calls for sacrifice, or at least that’s the way I’ve come to wrap my mind around it. Maybe it’s nothing as noble sounding as that. Maybe I just got lazy. Teaching, one of my great passions, had always required great energy, energy that I no longer seemed able to summon. I was eligible for retirement. My husband needed work and found a good position in another state. My tumor marker tests showed increasing evidence of cancer at the cellular level, yet my scans were clear.
I’m not sure what tipped the scale and brought us to this new place. Maybe it was down deep merely an urge to run, something I’d done plenty of times in my earlier years. Grief over my brother’s death, financial hardship, chemo-brain, depression, debilitating chronic health issues, fear of recurrence…all of these things and more must have played a part. I only know for sure that the world changed after my diagnosis.
That’s the thing about cancer. It sneaks up on you. I had no idea that I had cancer until I went in for my post-operative check after my appendicitis surgery. And that’s probably the root of my malaise. If I didn’t know I had it then…
I’m grateful for what I have; I still have love and family, however far away some of my loved ones are, and I will be forever grateful for what I have had. Nothing can take that away.
I’ve been working on my third novel on and off for several years now. It occurred to me just now that I’m back at it after a month or so hiatus with renewed energy and even a sense of urgency. It’s not always that way. I guess if it were I’d have the initial draft completed at the very least. If someone asked me why I hadn’t written much lately, before thinking about it as I am now, I’d have said something about my new jobs, my husband’s emergency surgery, or maybe even the dog days of summer.
All of those things, and many more, affect my writing schedule, and perhaps more to the point, my creative energy level. But none of it is really time off as long as I get back to the “art” within a reasonable amount of time.
The jobs will allow me the luxury of buying writing supplies (Am I the only person horrified at the exorbitant cost of ink?) and of getting out of the cottage now and then to experience the living world and its people and cultures in the flesh.
My husband’s surgery gifted me with three weeks of total marital bonding time. It wasn’t that I was nursing him or waiting on him hand and foot as he waited for a diagnosis, underwent surgery, and then recovered, it was that we were together for three weeks straight, pretty much night and day. Like a really romantic vacation except he was in pain and on strong painkilling medications and he needed me to drive him everywhere.
I tried to write while he was in the hospital. I set up a little office in his hospital room (which was nicer than many hotel rooms we’ve stayed in—the towers at St. Luke’s in Milwaukee are fabulous!). But I didn’t write a word.
Instead, I often climbed into bed with him, bringing a tray of snacks and the daily stack of funny and loving cards his many friends and family sent to wish him well. As his astute and talented young doctor told him a few days after surgery, my husband “is a beautiful man.”
Back at home I thought I’d write, but I was immersed in training for one of the new jobs, which was all done online. The online aspect temporarily morphed my beloved writing corner, desk, and laptop into a place of commerce rather than creativity. Gone were the stacks of notes and historical and creative writing books usually piled somewhat neatly at hand’s reach, replaced by technical manuals and handbooks. I found that once I finished the technical simulations and study required for the day I was more than happy to leave my little corner.
Then the dog days of summer really hit, and with them a disturbing lack of interest in anything. I am not a lover or heat, humidity, or mosquitos (I think I’ve mentioned the mosquitos before in other posts…); I seem to be biologically unadaptable to any climate where the temperature soars over 65 degrees Fahrenheit.
I simply cannot think or get excited about anything when I sweat.
I buy Off! by the case.
I wear ridiculous scanty clothing. The very thought of stuffing any part of my body into fabric of any kind makes me feel faint. My preferred dog day’s “outfit” is a brown sarong trimmed in red, green, and gold ala Bob Marley that I picked up in Kauai six years ago on an anniversary trip.
It’s not even a ladies’ sarong, for goodness sakes; the beautiful Hawaiian girl who sold it to me tried to talk me out of it. You would look so pretty in this blue one, or the pink one, she said. It would have been a perfect size for Israel IZ Kamakawiwo’ole (another beautiful man). But the fabric is so light and the large size makes it so loose. I said, I’ll take it.
There were other things that happened this past month other than my husband’s health crisis, my new work, and the heat that stalled the progress of my work in progress—things on my heart and mind that I’m keeping close. These things will eventually, somehow find expression and maybe even relief as part of my fiction.
The events of the past month, I find, didn’t really get in the way of my “art” at all. One of the wonderful things about writing is its permanence. The writer never stops writing, not really. Every experience, every sensation, adds another scene or scrap of a scene to be processed by the imagination and filtered through the writer’s soul. I’m writing again, and in that I find great peace.
One of the many things I love about my little railroad cottage in Wisconsin is the abundance of fat, furry bumblebees who feed from the flowering hostas that surround the front porch. I love the bumbles, perhaps perversely, partially because they ignore me entirely. Playing hard to get, so to speak.
The other critters ‘round here notice me. The baby bunnies that were around last month became instant pancakes when I walked into the yard, their floppy ears laid flat along their backs, their little shoulders melting into the grass.
The baby birds stared at me, perhaps wondering if I was about to produce a juicy worm out of my pocket.
The mosquitos most certainly notice and adore me. They come, one and all, to create a moving halo around not just my head, but my entire body, each time I step outside. They want to become intimate. Here, they say, let us land on the flesh of your eyelid, the back of your hand, the tender skin at the back of your ankle. We love you.
I do not care for the mosquitos.
I have not taken their picture.
I love everything else. The cardinals, I expected to see only in the snow, but they are here all year. Red streaks against the blue sky. Scarlet flutters among the green branches. They are a bit reserved, I’d say, but they acknowledge me as I pass by.
The squirrels and chipmunks romp around, and sit up straight and still to say hello.
The robins are a part of the family. The butterflies dip and swirl around me. The deer plunge through the underbrush right before me, taller than I could reach, and very, very fast.
The bumblebees ignore me.
They have long tongues. They can get the nectar out of the deepest flower tubes. Their buzz is soft, as I imagine their fur to be. They move slowly. I don’t startle them at all.
Bumblebees do not produce extra honey, I’ve read. Just enough for their own tribe. They have a huge impact on the number of blossoms in my yard. I cherish the bumblebees. I cherish the flowers.
Dream Big’s Meet n Greet!
By the time you read this I will have been on the road for several hours!! We have talked recently about the importance of networking and meeting new people, so here’s your chance. Feel free to leave a link to your blog post or page and a little info about yourself in the comments and then reblog! Great way to network.
For those of my readers that are not bloggers take a few moments and scan the links in the comments as there are so many talented writers on WordPress. One of my favorite things about WP is it serves as a social platform allowing me to discover so many talented individuals!
I have never done this before, but figured what better way to spend a Sunday than helping others expand their readership??!! After all, I met so many of you through a similar meet n greet on OM’s page…
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July 13, 2015
Today was a good writing day. You know, one of those days when you begin with a plan, something you know you can handle. (As opposed to one of those days where you stare blankly into space or rewrite the same paragraph over and over in every possible configuration, none of which really work for you.) My objective was simple. Revise one scene, adding sensory detail to infuse it with more life.
This launched me into a couple of happy hours spent researching unfamiliar foods—their ingredients, colors, flavors, and presentations—famous restaurants, Indian and English décor, and even childhood development.
This is one of the great delights of writing, this process of reaching beyond ones’ own experience, to better understand and describe the worlds we recreate on paper. I adore travel, and in the course of my writing, I am always going somewhere. At times, these travels take place in books or on the internet. Other times there is a trip to the grocery store or a new restaurant. Occasionally, there are tickets involved, such as bus, train, boat, or airline tickets.
I’m not talking about a metaphorical bag here. You are going to need a real honest to goodness bag that you truly love. It should be as large as you can handle, maybe a large postman style, back pack, or beach bag. Splurge on this. It will be your companion throughout your journey. It should be washable, at least wipe-down-able, as it will be entering into all kinds of compromising situations—everything from car floors to public restrooms. Be sure it has at least two separate compartments and a zippered pouch for smaller valuables.
What Goes in the Bag?
- The first and most important item is a journal. Your journal will be used at doctor’s visits, during hospital stays, chemotherapy and or radiation sessions, and in all manner of waiting rooms, not to mention while reclining at home on your most attractive and comfortable piece of furniture.
- Regarding the journal
- Date every entry
- Write down every question you can think of to address with your oncologist, nurses, family, and for your personal research
- Freewrite about your symptoms, reactions, and all the fears and feelings, good and bad, that you experience.
- List your intentions, hopes, and everything you are grateful for. And yes, there is always something to be grateful for. Add to this list often!
- Regarding the journal
- Colored Pens and Pencils (Any and all types you like, possibly including a Fountain Pen)
- They are fun!
- You can used them to highlight things you don’t want to forget to address. This may become increasingly necessary if you fall into the chemo fog that afflicts many patients: forgetfulness, confusion, sleepiness, and staring off into space for long segments of time, thinking about—absolutely nothing! Don’t let this scare you. I think of this chemo fog, or chemo brain, as a sort of cushion for your mind, a valuable stress reliever.
- The nicest lotion you can afford. This goes for men, too! Perhaps several different types, for example, rosemary or lavender stress balm to rub on your temples, hands, and feet. Maybe some peppermint, or eucalyptus.
- Check into essential oils and their uses. They can be added to any plain “base” lotion.
- Lip balm or moisturizing lipstick
- Small comb or brush. This is for the days you actually have hair. Keep in mind that not all treatments cause hair loss, but if yours does you can use the space for something more appropriate, such as a jaunty hat.
- You might think about getting a super short haircut before beginning treatment. I did this rather late, but it gave me a real boost at the time and my new hair came in thicker and in lovely shades of caramel and silver. I’ve never gone back to coloring it.
- Baby Wipes. Essential.
- Reading Materials. Your attention span, ability to focus, and mood, will probably fluctuate quite a bit. I found keeping a wide variety to most helpful.
- Inspirational/Self Help/Health: When I found myself wondering if I was going to die, I read some lovely books on the afterlife. I even found myself at one point almost looking forward to the moment when I could put all earthly cares aside and walk into the light. While this was a joy and relief to me, it may not have the same effect on you.
- Choose your literature wisely. Avoid anything you might construe as negative or depressing (unless that’s what you’re looking for, of course!).
- It’s your mind and your spirit; you must decide what is right for you.
- Cancer-related literature. This is deeply personal. Some of us want to read everything we can get our hands on about our illness, others avoid it.
- My favorite book on cancer during my illness was (not surprisingly) The Journey Through Cancer by Jeremy Geffen, MD. It really spoke to me in a loving, affirmative, and informative way.
- Cure magazine is filled with good articles and is free of charge to every cancer patient.
- For a funny/touching coming of age novel involving cancer patients, I adored John Green’s The Fault in Our Stars.
- Cell phone. You know what to do with a phone, but also consider these internet sources:
- Caring Bridge.org is a private and free site for anyone going through any health crisis. They provide an area to share your story, an online journal, a visitor’s tab where your loved ones can say hello and leave personal messages, a link page for resources you can customize, a photo gallery, and more. I depended on my Caring Bridge journal to serve as a safe and supportive way to inform my loved ones and organize and understand my own journey, and it made it tremendously easier for my caregivers.
- Specific online support groups for your diagnosis can be wonderful.
- A lovely soft pillow
- Water Bottle. I couldn’t bear anything chilled during chemo. I drank room temperature water (sometimes the flavored kind).
- A Prayer Shawl. Many faiths organize prayer shawl groups to knit or crochet shawls for those who are ill or in any situation where comfort needs are paramount. I was lucky to receive two of these as gifts during my treatment. Just knowing they were made by hand with love and prayers in every stitch made me feel safe and loved. I often slept in them, and always wore them during treatments. Your caregivers can find these online for you if you aren’t given one by a local organization.
- Electric Heating Blanket (or any cozy blanket). Cozy for the car, bus, airplane, or whatever doctor’s office you find yourself waiting in. It may surprise you; it did me, but you may find yourself wanting to drop off to sleep in places you wouldn’t have imagined possible.
The first time I saw the recliners lined up inches apart in the brightly sunshine-filled room where I was to receive chemotherapy, and saw the veteran patients snoozing with tubes in their arms, hands, or chest ports, and all of the other paraphernalia attached to that, I thought, “I could never sleep in here.” I found out quickly they put relaxing drugs in those tubes along with the other drugs, and by the second treatment, with my heating blanket plugged in along with everything else, I was nodding off with the best of them.
- Hat, scarf, mittens. Head gear is essential. A scarf to wrap around your face on a cold or windy day will be a great relief if you’re on a medication that makes you hypersensitive to the cold as I was. One brisk wind can steal your breath if you’re not covered.
- Thank you cards. These help you maintain that all important attitude of gratitude. Dole them out liberally. Use your colored pens! You will find that people near and far, known forever and just met, will show you many kindnesses. Each card you write will bring you a bit of happiness!
- Food. This can be tricky. What I could choke down one week, would be torture the next. My dear husband made a mad dash to the store any time I showed interest in any type of food, and was disappointed constantly by my inability to eat the same thing the next day. My friend Sandy actually flew across the country with a potato ricer to make me her grandmother’s famouslatkes. Nothing worked. At every weigh-in I had lost another three pounds. Everything tasted like charcoal.
- I didn’t worry about not eating, but it was hard on my caregivers, so I tried.
- Fruit was the least offensive food. And water that tasted like fruit.
- Health bars, Jell-O bowls, cashews…sometimes.
- I ate oatmeal occasionally at home.
- If something sounds good, toss it in the bag! Just don’t forget to refresh your supply. If something seems tasteless and nasty fresh, you don’t even want to think about how the sight of it will affect you after it’s been stuck in the bottom of your bag for a couple of weeks.
- A sense of humor. This is every bit as important as the blanket and the attitude of gratitude. Without a grin, or a chuckle, or a crazy moment when you laugh at the predicament you’re in, your situation could close in on you. Do not let this happen! Your life is impossibly, unrelentingly important, and filled with opportunity for humor. Sometimes you have to look had to see it, but it’s there.One day your therapy will be over. Please pass along the secrets of your journey to someone new, someone who was like you before you learned everything that you know now. Make a difference and pass on your travel tips. You may never know what your grace provides, but pass your hard found comfort forward.Mahalo. Carry On!