Tag Archives: appendix cancer

Scanxiety

billyandloribabes

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.

IMG_0679 This photo depicts my usual outlook on life, and was taken on my beloved mountain. This is not to say that I don’t love, love, love Wisconsin!

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.

Paris to home 2013 085

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…

Scanxiety.

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.

Mahalo.GrandmaJazz

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Filed under Cancer, Cancer Journey, Patient Advice and Support, Support Groups, Teacher, Writing

The Cancer Journey, Part Two: What Goes in the Bag? June 19, 2015

Is this the kind of bag I mean? Well, almost as much fun.

Is this the kind of bag I mean? Well, almost as much fun.

The Bag

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?

  1. 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.
    1. Regarding the journal
      1. Date every entry
      2. Write down every question you can think of to address with your oncologist, nurses, family, and for your personal research
      3. Freewrite about your symptoms, reactions, and all the fears and feelings, good and bad, that you experience.
      4. 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!
  2. Colored Pens and Pencils (Any and all types you like, possibly including a Fountain Pen)
    1. They are fun!
    2. 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.
  3. 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.
    1. Check into essential oils and their uses. They can be added to any plain “base” lotion.
  4. Lip balm or moisturizing lipstick
  5. 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.
    1. 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.
  6. Baby Wipes. Essential.
  7. 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.
    1. Magazines
    2. Novel
    3. 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.
      1. Choose your literature wisely. Avoid anything you might construe as negative or depressing (unless that’s what you’re looking for, of course!).
      2. It’s your mind and your spirit; you must decide what is right for you.
    4. 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.
      1. 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.
      2. Cure magazine is filled with good articles and is free of charge to every cancer patient.
      3. For a funny/touching coming of age novel involving cancer patients, I adored John Green’s The Fault in Our Stars.
  8. Cell phone. You know what to do with a phone, but also consider these internet sources:
    1. 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.
    2. Specific online support groups for your diagnosis can be wonderful.
  9. A lovely soft pillow
  10. Water Bottle. I couldn’t bear anything chilled during chemo. I drank room temperature water (sometimes the flavored kind).
  11. 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.
  12. 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.

  1. 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.
  2. 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!
  3. 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.
    1. I didn’t worry about not eating, but it was hard on my caregivers, so I tried.
    2. Fruit was the least offensive food. And water that tasted like fruit.
    3. Health bars, Jell-O bowls, cashews…sometimes.
    4. I ate oatmeal occasionally at home.
    5. 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.
  4. 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!

    St. Paul's Cathedral, London

    St. Paul’s Cathedral, London

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The Cancer Journey: What to Pack Introduction, June 18, 2015

The Journey Begins When You Open the Door

The Journey Begins When You Open the Door

You’ve just been given a cancer diagnosis. Often, this news comes as a complete and unexpected blow to you, as it did for me. Other times, as it may have done for you, it comes after nervous days, weeks, or months of wondering what’s wrong, suspecting the worst, praying that it isn’t, going to doctors, and hoping the cough or the pain or the patch of scaly skin you have is anything—anything—but cancer.

Whichever way it happens, anyone who hears the words, “You have caner,” is in for a universally brain numbing and heart stopping experience. After those words, you know your life is suddenly changed in ways you fear and do not understand.

Here’s what I want you to know: many others have been through this, consequently, you are not alone. There are some simple things you can do to soften the shock, and to construct a small space of comfort to hold onto. You will need to prepare.

In July of 2011, I walked out of my surgeon’s office smiling bravely, barely feeling the ground beneath me, holding my five year old granddaughter’s tiny hand, and wondering if I was imagining what I had just been told. I had gone to the post op appointment feeling giddy. Just having survived and quickly recovered from an emergency appendectomy, I felt I had undergone nothing more than a small hiccup, an interruption that was going away as quickly as it had arrived, leaving me stronger than ever. After all, I had done remarkably well. I was already back to running around with my grandkids a bare two weeks after surgery. No need to cancel summer babysitting plans, I thought.

That was why I took my granddaughter with me, and how she was sitting right next to me when I heard, not, how beautifully I was doing, but, that the lab had tested my appendix. I had appendiceal cancer, a disease I’d never heard of and soon learned was rare, what is called an “orphan cancer” because so few people contract it that it doesn’t garner much research

Perhaps, like me, you went immediately to see a family member, or maybe called a loved one on the phone. You might have already been in a hospital. In my case, I checked my watch and saw that it was about time for my daughter to get off work, and since her office was in the same building as my surgeon’s, I dropped in on her. I could deliver my granddaughter to her there rather than at home.

“It’s strange,” I said. “The doctor thinks I have cancer.” Thinks, I said. Because how could that be? I’d never even heard of appendiceal cancer. It was too soon for tears, I guess, and definitely too soon for me to come up with a kinder way to inform my daughter. I wasn’t my usual self. Not at all.

My daughter looked at me as if I’d just told her I wasn’t her real mother, or something equally stunning. “It’s all going to be fine,” I said. I hugged her, spun my granddaughter in the air, and said goodbye.

Oddly, I then stopped off at the school where I taught, though it was summer break and I was off. My friend, Alicia, whose birthday concert I had missed a couple of weeks earlier due to my appendectomy, was there teaching summer school. The hallways seemed unfamiliar and I didn’t know many of the kids. I felt like a stranger. It was not even fully one hour since I’d heard my diagnosis, yet I believed I had already been transported into a new life. Suddenly, I wasn’t only a grandmother or a wife or a teacher or a writer, I was a woman with cancer.

It is in that fog-like state that I had to make decisions about treatment, and struggled to maintain the life I’d had just the day before, figuring out new ways to make the most of tomorrow. How would my husband take it? What about my brother, who was ill and living with us. I was his caregiver! You may feel things are happening too fast. They are. While you may have to accept that and many other unpleasant aspects of the journey at the beginning, remember, having cancer does not make you into a victim.

The American Cancer Society says that everyone who has been told they have cancer should immediately be referred to as a survivor. They print out new purple “Survivor” t-shirts every year. The ACS does lots of good things: provide rides for people who need to get to treatments, wigs for those who lose their hair, pump a great deal into research for cancer of all types.  A part of me loves that they call me a survivor, but another part, the teacher part, perhaps, thinks: The opposite of victim is survivor. I don’t want to be either of those things. I’m also a teacher of the Holocaust, and I can’t help but think of the Holocaust survivors I’ve known or learned about. My survival is something very different from theirs. And then there is this: Some people find the survivor label to be insensitive in regards to the loved ones of patients who died. Did they not fight hard enough? Were they not brave enough? Though I know this isn’t the intent of the label, I wonder about using it. I do wear the purple shirt when I attend a Relay for Life event, but I’m really not sure I should.

All I know for sure is, You Are Not a Victim!

We all do our best. You may or may not have excellent health insurance. You may or may not live near a state of the art cancer center, such as one of our few national cancer centers in the U.S. Even if you do live near such a place, your insurance may not cover it. You have so much to learn, particularly if your particular kind of cancer is rare. My insurance company sent me to a small clinic about an hour away from my rural home that I’d never heard of. I petitioned for (and won) permission to get an expert opinion at The City of Hope in California. My clinic then used City of Hope’s treatment plan, and I began to relax a bit.

Within hours, if not minutes of diagnosis, you and your caregiver (spouse, parent, friend, or adult child who will sign on to go with you on your arduous journey) will be responsible for learning a new language, becoming an expert medical researcher—tech savvy enough to search and set up informational networks for the other important people in your life… and the list goes on.

Make no mistake about it, a cancer diagnosis means you’re going on a journey, perhaps not to Paris (although that’s not out the realm of possibility!). There might be a really good doctor in Paris, one who is the world’s most renowned specialist in your cancer. Your specialist, and I strongly urge you to find one, could be hundreds, or even thousands of miles away. Wherever you travel, either metaphorically or concretely, you will benefit greatly from a well-stocked gear bag.

Coming Tomorrow: The Gear Bag and All of Its Contents

Is this the kind of bag I mean? Well, almost as much fun.

Is this the kind of bag I mean? Well, almost as much fun.

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Thoughts on the Healthy Writer

Health is related to writing. All areas of health. And conversely, today my writing is very specifically related to health. The two, I have found, are closely entwined. I wrote very little when my health was at its worst. I did entertain thoughts of writing when first diagnosed—lots of time during recovery and chemotherapy to write that new novel. Some writers, tougher than me, have used similar circumstances in just that way, I’m sure. Writers with full-time day jobs, perhaps especially. When else is a chunk of time that big going to show up, unplanned for, unasked? The time, and privately, I even thought, the added depth of character this new ordeal was going to provide me with, could be put to good use. Hadn’t I been too overwhelmed with responsibilities to focus on my writing of late?
It all made good sense until the surgery came, and then the six months of chemo. I was on one mode, and it wasn’t writer mode. It way surviving the effects of cancer treatment by laying on the couch mode. I couldn’t even read a book. Well, I did write some CaringBridge blogposts that kept my family and friends informed of my progress and helped me sort out my hopes and fears. But the novel never came. For me, it just didn’t pan out. I had time, but no energy, no ability to concentrate, no creative spark.
Today’s short piece is inspired by that connection, with appreciation and gratitude for the gift of health I am experiencing right now. I took a gorgeous long walk this afternoon past the wooded hills and ready-for-harvesting fields of corn near my cottage. I was stepping pretty lively, sucking in the newly changed chill in the air, and smiling my ass off! And now, as directed (Blogging101), I’m writing.
Tomorrow is Froedtert Day. Froedtert is a hospital/medical center in Milwaukee, WI, USA. It’s pronounced ”fray dirt.” I am new to Wisconsin and Froedtert, but not to the fray. In California, where I used to live, I began my cancer journey. Having a rare form of a rare cancer made me feel uncertain during diagnosis and treatment. Had my doctor ever actually treated this before? This type of cancer isn’t call one of the “orphan diseases” for nothing.
Though I was well taken care of, I always had questions that went nowhere. We are monitoring you closely and believe you have an excellent prognosis. I came to accept this answer, but I never stopped scouring the internet for detailed information. There isn’t much out there, at least not that I was able to find.
Enter Froedtert. With final instructions from my California docs to find an oncologist and get some new tests and scans done when I reached Wisconsin, I began my search. One of my husband’s coworkers suggested Froedtert, as his wife had been successfully treated for cancer there. And it was covered by our insurance. Good enough, I thought. Looking over their website at cancer specialists, I couldn’t believe it. An actual, honest to God Appendiceal cancer specialist was listed on staff.
Fast forward. I got an appointment with this man, this very nice, personable, intellectual giant of a doctor, and in less than forty-five minutes had all three years of my accumulated goblet cell specific questions answered, my tests scheduled and all of them carefully explained. Some done religiously in California weren’t needed at this time; others not done regularly, were.
I go in tomorrow for those tests. One short week later, I’ll see my oncologist again, and he’ll suggest a plan for the future. The future! I am nervous in a whole new way, actually excited to get on with it, believing that a veil has been lifted. I’m several chapters into writing that new book. Out of the fray, and hitting pay dirt.
Mahalo!

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