Fear of Cancer Recurrence

So, you’ve been through surgery, radiation, chemo. Almost to five years. Maybe even ten years. Your friends have stopped asking “How are you?” in that slow, drawn out way. Now it’s assumed that your worries are about your kid or you job or your weight. 

And it’s true you have new thoughts now and plans for the future. But still. But still.

You feel an ache, there is a bruise, a bit of swelling, a funny feeling. Your first thought is not, like most people, “Aging sucks.” Rather, your first thought is, “Is it back?”

The reality is that cancer can recur—in the same place or sometimes metastasize to a new place. So, we residents of CancerLand have this thing called FCR—Fear of Cancer Recurrence.

And it’s not just you: According to Susan Krigel, Ph.D. a clinical psychologist at the Midwest Cancer Alliance, 97% of cancer patients have FCR that lasts for years.

The good news: you’re not alone.

The bad news: you can feel scared a lot or crazy a lot.

And the probably news is that you’ll experience some anxiety.

Triggers will be different for each person. You’ll want to talk to folks in a support group. You may also want the help of a therapist who knows cancer. That’s a key question to ask: Does this therapist know the psychology of cancer and the dynamics of life as a cancer survivor. Note: Having had cancer does not necessarily make one expert. Having treated many people with cancer and understanding the dynamic may be a better qualification than having had cancer.

Humor helps too. You’ll need to test that first with family—they have their own fears about your cancer. But find a couple of people –friends or survivors—and invite them to be your FCR warriors. 

Helping Yourself vs Asking for Help

[Friends--here is a wise and practical guest post from writer, Lori Ann King--writing about the delicate balance between  helping yourself and asking for help:

“There’s a mass near your cervix,” the doctor said.

That’s where my story began. 

After a routine colonoscopy, my gastroenterologist had ordered an ultrasound and a CT scan to see if anything was pushing on my intestines that might explain some of the pain I’d been experiencing. This led to the discovery of a small mass near my cervix and an ovarian cyst. I was referred to my regular gynecologist.

Now, when my routine test results came back, and they included the word mass, my blood pressure went up a notch. Cysts I knew were common and relatively harmless.

The idea of a mass, on the other hand, had a whole different connotation and stress factor. The possibility of cancer crossed my mind. I wish I had asked more questions. I might have heard that while it could be cancer, it could also have been a fibroid. We would not know until it was removed and tested. A fibroid sounded much more manageable than cancer in my mind. 

In my rush to move forward quickly and get back to some form of normalcy, I opted to see an unfamiliar doctor when my regular gynecologist was not immediately available. My husband, Jim, came with me to this consultation and together with my new doctor, we decided to remove the mass and monitor the cyst. Just days after my colonoscopy, another surgery. More anesthesia. More recovery.

Thankfully, the mass was not cancer. It was a fibroid. Benign. I breathed a sigh of relief, took a few days’ rest and looked forward to getting back to living my healthy life.

Unfortunately, that’s not where my story ends. As the ovarian cyst continued to grow along with my pain and discomfort, we decided to remove the ovary and cyst. Another surgery. More anesthesia. More recovery. Much more.

Back into surgery I went, hoping and trusting for the best-case scenario: the simple removal of one ovary and its fallopian tube. I was excited to erase the pain that was burdening me. I didn’t expect anything else to happen. 

I awoke to learn that the worst-case scenario had happened: I had received a full hysterectomy as well as a double oophorectomy. Uterus, cervix, ovaries, fallopian tubes—everything had been removed due to the severity of endometriosis that had been found.

I expected to be pain-free when I woke. It didn’t work that way. I was in severe pain. I was tired. I was afraid. I couldn’t pee or poop. My body felt and looked swollen and bloated. This was uncharted territory and I had no idea how to fix it.

Thus began my ongoing journey toward balanced wellness and optimizing my health. It involved complementary medicine, bio-identical hormones, lifestyle changes, and managing my thoughts and words so I could better control my emotions. It involved educating myself, empowering myself, and fighting for respect from doctors, demanding to be heard and seen while firing those that didn’t treat me as a full partner on my wellness team.

Medical issues are scary, whether we are the patient, or the loved one on the sidelines. I’m grateful my story did not involve cancer. My parents are both cancer survivors. It’s a legacy I don’t wish to continue.

My experience with surgery and surgical menopause taught me many things. Perhaps the most profound is the delicate balance between helping myself and asking for help.

Help yourself and ask for help

We can fuel our bodies with optimum nutrition and move our body. We can build a healthy mind. We can smile, laugh, share joy, play, rest and be still. We can practice yoga. We can meditate. We can do everything in our power to reduce stress as if our life depended on it. Sometimes, it does.

We don’t have to go through this alone. We may or may not have close family and friends. We may or may not be married or have a partner. We can ask our doctors, employers, and health insurance company what resources are available. We can join an online or local support group. 

Reaching out to people is not always easy. In the past, I was a private person, to the point where I didn’t share much about my health challenges with my parents or sister before surgery. In hindsight, I might have done this differently. 

My sister would certainly have wanted to pray for me. My mom would have just wanted to be there, offering support and encouragement while preparing meals, doing laundry, and cleaning my toilets. Some days, that’s just what a girl needs from her mum—particularly right after surgery when your body is using all your energy for healing its tissues.

Not everyone will know how to help us. This is where we need to communicate clearly by inviting friends, family, coworkers, and even neighbors into our lives. Let them bring a meal, do the dishes or a load of laundry, vacuum the floors, clean the kitchen, or pick up a few groceries. They can loan us movies or books, or drive us to the doctor or pharmacy. If we have children, they may help with childcare or transportation to after-school events and play dates.

Or, they can come for a visit. Some days you’ll want to talk, some days you’ll want just to sit. Ask for what you need and accept what they can give. Release them if they can’t. They will be there for you another time. 

Know that your friends are not therapists or counselors and sometimes we require more of a listening ear than they can give. I found talking to a counselor played a large role in reducing my stress levels after surgery. I wish I had done it in the weeks prior to surgery as well.

Keep in mind that when we are dealing with surgery or illness, our loved ones get stressed too. They cannot read our minds. Do your best to use our words to communicate your needs, desires, and fears. It may be as simple as asking for a hug or reassurance that they are with us through sickness and in health, in good times and in bad, happiness as well as in sadness. 

Above all, know that family and friends covet our time. Give them what you can, guard your energy, help yourself, and know when to ask for help.

About Lori

Lori Ann King is a wife, an athlete, a freelance writer, blogger, and nutritional consultant helping people with weight loss, energy and performance, and graceful aging. She is the author of Come Back Strong, Balanced Wellness after Surgical Menopause and Lean In or Lighten Up, Rebuilding Your Mind Toward More Positive Emotions. She and her husband, Jim reside in the Hudson Valley of NY and are currently working together on a book about the requirements for creating a healthy lifestyle. 

The OMG People

Janet's post last week reminded me of another group of people you may meet on your journey through CancerLand: The Oh My God! people:

The things people will say to you. “You look good”. They say this to him because they heard that he has cancer and they were expecting him to look like crap. It always makes me wonder if later they are going to say, "You look like hell”. 

Or they begin to tell you a story about someone else who had cancer and halfway into the story you can tell that they suddenly realized that the story they are telling you does NOT have a happy ending.

It turns out that the neighbor, coworker or uncle they are starting to tell you about has died of cancer and probably the same kind of cancer that your loved one has …and now, you can see the look on their face—even as words are coming out of their mouth --they are trying to back out of the story they are still telling  you.

They desperately want to redirect themselves, so they can make this story be about something else, but you can see that what they began with—some hope or consolation, like, “He had the same thing.” Or “His chemo wasn’t so bad” is in fact a story that ends with “and then he died.”

That is one version of the OMG People.  Another version is this: They say, “Oh my God, cancer, I’m so sorry and I’ll pray for you.” What does that mean? Will they be praying that his illness goes away, which kind of suggests that some other guy with no praying friends gets to keep theirs?

Or the “OMG you’ll have such a hard time as a caregiver,” or the “OMG he’s gonna be really, really sick, but you can do it”. They give you that great big attta girl right after they devastate you with their sympathy and alarm.

People will tell you all kinds of, “How it’s gonna be” stories and then you find out that their sister had breast cancer, or their boss had lung cancer or lymphoma or some other kind of cancer and some other kind of chemo. People outside of CancerLand almost never understand that chemo is not chemo is not chemo. 

But, my God, I have to be more kind. I was there once too. Before this began I thought that cancer was cancer, and that chemo was chemo. I had to learn so much so fast.

CancerLand is a school, and man, the tuition is a bitch.

Guest Post: Thoughts on Thoughtlessness

Friends--Today we have a guest post from Janet H. I suspect many will relate to her experience:

The Thoughtlessness of the Well-Intentioned  By Janet H.
excerpted from https://fuckcancer.home.blog/ 

In June of this year, I was diagnosed with breast cancer. It was an absolute shock, coming after a routine mammogram. I was three months away from retirement, ready to begin the next chapter of my life, and expected this mammogram to turn out like all the others – clear. There is no history of breast cancer in my family, and no history of cancer, period. I had no frame of reference, no experience, and no depth of knowledge. 

I have had two surgeries, am currently a bit more than halfway through chemotherapy, and have radiation, followed by years of drug therapy, in front of me.

I made a decision nearly from the beginning that I was going to beat this and it wasn't going to beat me. I have a lot to live for – my husband, my children, friends, travel, hobbies, good books, great food. But not every day is a “warrior” day. 

Some days are sad ones, or ones filled with fear of losing things – my strength, my family, my health, the taste of good food – and I need to remind myself that I am, if nothing else, a fighter.

Part of being a fighter is rigorously protecting myself. Once you have an illness that requires your doctors to talk to you about your percentage life expectancy in the next five years, simple gestures and words that I wouldn't have even noticed before take on new meaning. In the interest of other cancer survivors, I offer a few that have struck me as particularly thoughtless:

• "Well, at least they got it all." Yeah, not so much. Just because I had surgery does not mean that my cancer is gone. In my case, there's a 40% chance that it's still in other lymph nodes and it won't be gone until I finish chemo and radiation. So, when you say this, I am reminded that the cancer is still in my body, and that is not a pleasant reminder.
• "I am so upset that...[I'm not sleeping, I'm worried all the time, I think about you all the time, I want to help but I don't know how, etc.]" Note the subject of these sentences – the speaker, not the recipient. Saying this helps me not one bit, and changes this into something where I'm either supposed to feel guilty about making you upset, or just go away so I don't upset you anymore. Needless to say, it’s not helpful, and a curious way of making my cancer all about you. I don't need this at all, sorry. When you are ready to leave this sort of bullshit at the door and genuinely ask me how I am, bring it. Otherwise, please stay away.
• "We're having some friends over, it will be a great time." Sounds innocent enough, but I really am not up for meeting strangers and pretending that I don't have cancer, even for an evening. Plus I’m weak, have low immunity, and mostly can’t eat. Cancer is on my mind 24/7, whether I want it to be or not.
• "Wishing you a speedy recovery." Ok, this works if you break your leg, or have the flu. Cancer treatment is not speedy, and recovery is illusive. Again, it reminds the recipient of what they don't have – something easily treatable, something that you get over quickly, something they won't be thinking about for the rest of their lives.
• "Your situation is just like my...[mother's, sister's, friend's, depression, divorce]." It isn't, and putting me in a box that you can relate to simply negates my experience, and our conversation may be a short one and one not to be repeated. Telling me that your sister had a different cancer and did great (but you don't know which kind or her treatment) isn't helpful at all. It will just shut me up.
•  Cancer, especially breast cancer, is very specific and it is very personal. If you have personally been down this specific road before, I definitely want to hear about your experience, and I will have lots of detailed questions that allow me to figure out whether our experiences connect, and whether we have something in common. Or if you know another survivor and want to put us in touch, that's really helpful. Otherwise, if you really want to show your support, let's leave the indirect or unrelated experience to the side, and just ask me how I'm doing.

What has helped tremendously are friends and family who call or email or text to say "How are you doing today?" or "need anything?" or "how are you holding up?" Keeps me in the moment, which is all I have, and does not presume anything or remind me of what I don't have right now.

Celebrating Day of the Dead

Today I celebrate Dia de los Muertos, the Day of the Dead.  It’s not a holiday I grew up with but one I’ve borrowed from the Southwest and Mexico. And it’s become one of my favorite holidays –in part because it’s a good spiritual counterpart to Halloween. Except for the candy, October 31^st doesn’t leave much for grownups. Being scared of goblins and ghoulies lost its sway when I got old enough to lose people that I loved. The dead just aren’t scary in the same way anymore. In fact, I’d welcome a visit from some of them. 

That’s what Day of the Dead is about. There is a belief that on this day the veil separating this world and the next is thinner and so it’s a time we can be closer to those that we love

who are dead.

Day of the Dead celebration centers on rituals for remembering loved ones.

We can visit in our imagination or feel their presence. It can mean prayer or conversation, writing a letter or looking at old photos. The tradition that I use includes making an ofrenda, or altar, something as simple as putting photos and candles on the coffee table and taking time to talk and remember. We also have chocolate as a symbol of the sweet and bitter separation from those we love. 

A ritual is a way of ordering life. Whether Purim or Advent, hearing Mass or saying Kaddish, small ceremonies help us sort and reframe our memories. When someone dies the relationship doesn’t stop, it’s renegotiated, literally re-conceived. 

This isn’t a very American idea. Culturally our preferences are for efficiency and effectiveness; even with grief we use words like closure and process. 

I remember my frustration when I was grieving the loss of my brothers and sisters and well-intentioned friends would suggest I move along in my process and quoted Elizabeth Kubler-Ross. The simplified version of her theory lists stages: Denial--Bargaining--Anger--Depression, and Acceptance.  But it’s false to create an expectation of five discrete steps. This listing implies order and that a person can move from point A to point B and be done. 

That makes grief seem like an emotional Monopoly game where you go around the board, collect points and get to a distinct and certain end.  This false notion of linearity is apparent when we hear people judge someone who is grieving, “Oh she missed the anger stage”, or “He hasn’t reached acceptance yet.” 

I always thought that “losing a loved one” was a euphemism used by people who were afraid to say the word dead.. But after losing my brother Larry I know that lost is the perfect word to describe the feeling that follows a death. Something just out of reach, still here, but also gone. 

Though he died several years ago my feeling about my brother is that I have misplaced him; It’s that sensation of knowing that my book or that letter I was just reading, are around here somewhere…if I could just remember where I left him.  

I think this is why we can sometimes be so hard on the grieving, and why we want them to go through those stages and be done with it. We love closure and things that are sealed and settled. But death and grief, for all their seeming finality, are not as final as we would like. 

So tonight I’ll make cocoa and light candles; we’ll look at pictures and tell stories. We’ll take John’s father’s picture into the living room and we’ll open up the family albums. And we’ll laugh. 

The root of the word grieve is heavy. We carry our dead as a cherished burden. Death may end a life but not a relationship. Who would want to close the door on that?

King Lear--A Story of Adult Children Caregivers

Now, maybe you’re thinking that Shakespeare didn’t write a play about family caregivers, and that I, duh, missed the point of possibly his greatest play. But I’ll debate you on that.

This afternoon I went to my local theater to see this magnificent literary work as a live feed from London. The movie theater audience watched the play as it was being performed on stage—live—in London. The lead role—King Lear—played by the great actor Ian McKellan.

During the curtain speech to the audience--to the London audience and the audiences watching the live feed around the world-- it was suggested that the play is the play and that we were likely to see politicians we know, family members, friends, public figures represented.

That’s the thing with Shakespeare isn’t it—what we mean when we say his work is universal…the issues and perspectives and personalities are universal.

So, as I watched this powerful story played out on stage and screen I kept thinking, “That’s exactly what happens to adult children as family caregivers.” And I think that if you have ever been in that caregiving role, or if you are a parent or grandparent being cared for by adult children, you’ll recognize these dynamics as well. Sometimes the actor’s lines felt like they were written just yesterday by someone’s sister or someone’s daughter-in-law.

The story of King Lear, you may remember from ages ago, is about the aging (and possibly dementing) King, and his three daughters Regan, Goneril and Cordelia. As the play opens he is asking them to declare how much they love him. (Like a really bad Thanksgiving dinner table scene).

They each profess to love their father to the moon and back, but youngest daughter Cordelia, calls out her sisters on their insincerity—and sort of says, “Dad, I love you and you know that, isn’t that enough?” But Lear gets pissed and divides his Kingdom between the older sisters, who—within minutes—are scheming to NOT have to take care of the old man.

Later, when there is an agreement that Dad will stay 100 days with each daughter for his care, the daughters can’t wait to hand him over to the other: “You take him now.” “No, you can take him sooner.” “He’s a mess when he’s here and it disrupts our whole household.” “Well, I don’t want him here.” And on and on.

And they call him old, and tell him he’s crazy, and they resent his illness and the messes he makes. They are ungrateful for sure, and from that comes one of Shakespeare’s most famous lines, "How sharper than a serpent's tooth it is to have a thankless child."

Now, in real life as a caregiver, no one gets his eyes poked out, and not many people get stabbed as they do in King Lear, but we know that sibling relationships do take a hard beating when care of a parent is involved.

So, thank you to Bill Shakespeare and to Ian McKellan for this powerful verbal and visual reminder that caregiving stress is as old as time.

How to Talk to a Cancer Patient

Oh, this one made me laugh today. The link below from McSweeney's is serious business but if you have spent time here in CancerLand you will be nodding as you read and you'll be laughing too.

The title of the article is: "How to Talk to a Cancer Patient Without Being a Complete Twit".

Yep, I've been on both side of this one. I've been the recipient and the twit.

This is a good link to share with friends, family and coworkers. Many future twits out there and we can save them that life.

Here's the link:

https://www.mcsweeneys.net/articles/how-to-talk-to-a-cancer-patient-without-being-a-complete-twit

Getting Sick While Getting Well--Post-Hospital Syndrome

An article a few weeks ago in the New York Times highlighted what you may have noticed or suspected: going into the hospital creates additional problems for many people. We might have imagined that a loved one "picks up" a problem in the hospital--a flu or infection, but post-hospital syndrome is more than that.

Paula Span, writing in the column, "The New Old Age" highlights the research that shows that the stress of being hospitalized kicks off a host of other issues/illnesses in a person already vulnerable.

That vulnerability might be a cardiac problem, aging or cancer. It's a bit of "whack-a-mole" healthcare or "go in with one--come out with three" medical issues.

You've heard people say, "Hospitals make people sicker." Don't roll your eyes, there is more than a grain of truth in that. It's not the hospital per se, but the stress of being in a  hospital that can compromise your health.

Here's the article from the New York Times. Link below right here:

https://www.nytimes.com/2018/08/03/health/post-hospital-syndrome-elderly.html

Myers-Briggs Can Help Caregivers and Patients

You’ve probably taken the test at work or as part of a self-understanding workshop. The Myers-Briggs Personality Type system helps us to understand ourselves and others, and to learn about our preferences and most importantly—the way we get and manage energy.

You know the words even if you don’t know your type.: 

Introvert-Extravert

Sensing-Intuitive

Feeling-Thinking

Perceiving-Judging

These four dyads represent a continuum of preferences, or ways we operate in the world and with both ourselves and others. 

What I love most about Myers-Briggs is that it is “nonpathological” meaning there is no good-bad, or right-wrong identity. Each of these is neutral and helpful. Over the years I have found that using these types and this language a great way to work through relationship conflicts and conversations—whether workplace, friendship or intimate relationships. 

But recently I have been thinking about how Myers-Briggs can be helpful to caregivers. I’m part of a care team for a friend with a serious illness and as the team is volunteering to do everything needed, I see the types come into play. The introverts would like to visit one on one, the extraverts are hoping for group activities or a crowd at dinner. The N’s are reflective and guided by their gut, the S’s ask for tangible specifics.

 Without understanding that these are “types” it would be easy to become annoyed. One could be tempted to criticize in a situation like this, but there is the beauty of learning how Myers-Briggs Typology works. Each person –or type--is managing their own energy in a situation that is already energy demanding. Simply knowing that can cut through the “Can you believe that she…?” and “Who would ever want to…?”

Another way that we can effectively use the language of Myers-Briggs helps to better understand the needs of the patient. Our MB type doesn’t vary a great deal when we become ill—but it will instead become more manifest.

Try this test: If I am very ill I would like my friends to

1. a. Visit me a lot, stop by, bring the joy every day
2. b. Limit visits call before you come, maybe no visitors at all.

There you see (a) an Extravert patient and (b) an Introvert patient. It’s so tempting to think, “That’s just wrong” or “She doesn’t really mean that” especially if yours is the opposite type. So, it is crucial to check your assumptions --and your type.

It is the E and the I that need the most attention. The issue is about how energy gained and conserved. Both patients and family caregivers need enormous amounts of energy—so it’s important to assess each one’s type. No, you don’t want to administer a test, but pay attention, or recall how they handled energy before the current situation arrived. 

It is most challenging when the caregiver and the patient are on opposite ends of the spectrum. The extraverted patient may want lots of visitors and say, “stay for dinner” and “we can all watch a movie in my room”. An Introverted caregiver will be drained by that. 

You are not a bad caregiver if you dread that. But, paying attention to Type, you can ask another Extraverted friend or family member to “host” those experiences and you use that time to get away alone for a while.

An introverted patient will prefer to limit visiting hours and say, “no drop-in’s please”. Extraverted caregivers—you need to be careful to not think, “Oh, we need to cheer him up—let’s all go over and play cards with him.”

Remember there is no right or wrong way to be a patient or a caregiver, but we can make situations much more difficult by not paying attention to each person’s preferences, and not noticing when our own Type is influencing our thinking. This is one place where the Golden Rule is absolutely wrong. Do not do to others what you’d like to have done to you. Instead, think about Type. Know your type and your preferences and ask questions. 

The small paperback, “Please Understand Me” by Kiersey & Bates is an excellent introduction to the Myers-Briggs Typology—and it includes a short quiz that can help you learn your own preferences. 

Wendell Berry's Creative Process in CancerLand

I have a quote from Wendell Berry taped inside my day planner. When he wrote this he was trying to articulate the creative process. But I also believe that his words are equally true for those of us discovering a cancer process.

Caregiving is a deeply creative process, and it has many of the same stages as writing poetry and making art. 

Wendell Berry writes:

“Form serves us best when it works as an obstruction to baffle us and deflect our intended course. It may be that when we no longer know what to do we have come to our real work and that when we no longer know which way to go we have begun our real journey. The mind that is not baffled is not employed. The impeded stream is the one that sings.”

I love that.

 “The impeded stream is the one that sings.”

But most of the time in making art, and in CancerLand, we don’t want the impediments, the boulders, the rapids.

If he is right, then I am singing. I feel impeded often. Deadlines and doctors. Finding the right words and the right materials. Finding the right prayers and the right moments to pray.

“When we no longer know what to do we have come to our real work.”

Going down that river feet first, tumbling, laughing, praying, singing.