Sunday, September 18, 2011

Scanxiety Revisited

Since my husband’s original lung cancer diagnosis in 2002, he has had more scans, tests, and biopsies than I can count. Being an old hand at the process and the anxiety surrounding each test—pre and post—I thought knew everything there is to know about scanxiety. My latest experience proved me wrong.

In July, we were elated when the CT/PET scan indicated that 2 months of grueling chemo had reduced the tumor load by 70%. After a short break, Jim repeated the same regimen for another 2 months after which on Monday, September 12, he had a CT scan.

For the past month, I have been down in the dumps--tired, lifeless, discouraged and unproductive. I didn’t have to search far for the source of my mood—a few rejected periodical submissions, a series of bad news from our f.a.i.t.H. group members, the tragic death of a friend’s granddaughter, some family problems, earthquakes, hurricanes, floods, the anniversary of 9/11—all legitimate explanations for my bad mood.

On Friday, when we realized that the oncologist and radiologist in Houston had not yet received the scans which were supposedly FedExed on Monday, I fell apart. My anger required a target which happened to be my poor beleaguered husband. “Why didn’t he follow up earlier in the week to be sure that the scans were mailed and received?” “Would anything get done without my nagging?” After a long-coming melt down, I realized how anxious I have been while waiting for the scan results.

I didn’t think I was anxious about the scans; after all, the course of action is pretty well decided: If the tumors have shrunk or remained the same, he continues with another 8 weeks of the same chemo. But I can finally admit I am terrified that the tumors will have grown—that the chemo is no longer effective.

I can’t believe what a revelation this was. How could I fail to recognize the very signs and symptoms of scanxiety that I describe in Cancer Journey where I warn new caregivers and cancer patients that “anxiety can often masquerade as depression.” Maybe I should re-read the book I wrote.

Tomorrow we should get the results of the scans, just in time to start another round of chemo on Tuesday—if the scans are “good.” No wonder I’m depressed.

Tuesday, August 2, 2011

Cancer and the Sugar Monster

Jim has a sweet tooth; in fact, Jim has a mouthful of sweet tooths. Being a rather picky eater myself, I was astonished—no, appalled--when first introduced to some of his eating habits. Cottage cheese with maple syrup? A half inch thick glob of frosting sandwiched between two saltines? Grits with grape jelly?

At Cracker Barrel he orders two (three, when he is self indulgent) of the little bottles of syrup with his pancakes. (Campbell calls him the Syrup monster.) As my great-great grandmother said, “I do believe he would eat a turd if it was dipped in frosting.

Over the course of our marriage with my emphasis on healthy eating (and a lot of nagging) Jim has tempered his sugar hunger and modified his eating habits. But the natural desire is still there. If cancer cells love sugar, his are in a constant state of blissful satiety.

From the beginning of our cancer journey I have heard the maxim, “Cancer Feeds on sugar.” I have been told—not by doctors come to think of it—that cancer patients should avoid sugar. With someone like Jim, it is easier said than done.
My goal is always to fix healthy meals full of the nutrients he needs, but during the chemo process my resolve weakens, and I let him eat as he pleases. When his mouth is full of sores, and his taste buds have been altered by the toxic drugs, when nothing sounds good to him, and he is losing weight, I give up and give in to his demands. His ideal diet would consist of yogurt for breakfast (rather than the fruit and steel cut oatmeal I prepare), a triple chocolate DQ blizzard for lunch (rather than a beet, carrot, lemon and apple cocktail), and a mocha caramel shake from Sonic for dinner (rather than chicken, quinoa, and roast vegetables, lovingly prepared at home.) I’m sure you’re saying, “Who can blame him?” Seriously, several weeks into chemo, I do my best to accommodate his changing tastes—homemade Mac-n-cheese, pastas, and soups, but he still sneaks off for his sweet treats. What’s a girl to do?

First of all she hits the computer for the lowdown on sugar and cancer.

The idea that cancer feeds on sugar has been around since 1924 when Dr. Otto Warburg a Nobel Prize winning cell biologist wrote, "Summarized in a few words, the prime cause of cancer is the replacement of the respiration of oxygen in normal body cells by a fermentation of sugar." Many people who referred to his work in later years misquoted Warburg's statement by saying, "Cancer loves sugar." Although parts of Warburg’s theory have been disproved, the misquoted statement has held fast.

The truth: Cancer cells like all cells need sugar to survive, but these sugars come from the metabolism of carbohydrates necessary to sustain the life of the organism. Cancer cells do use sugars (combined with specific proteins) at a higher rate than normal cells but sugar does not cause cancer.

Before you run out to Dunkin Donuts for a bag of cinnamon glazed twists, you need to hear the rest.

While sugar doesn’t cause cancer, it has no nutritional value other than to supply energy. As Mom always said, “If you fill up on snacks you won’t want your dinner.” A diet saturated with sugar leaves no room for the nutrients vital to overall good health. Plus, sugar contributes to obesity, diabetes, tooth decay, depression, and a plethora of other maladies.

Even though sugar doesn’t exactly “feed” cancer cells, it is a good idea to limit the amount of simple sugar you eat. This is because when you eat a lot of sugar, your body produces a lot of insulin, which is not good for your health. Recent findings indicate that it may be this abundance of insulin which contributes to the proliferation of cancer cells. (Dr. Rios, obviously aware of this research, has Jim taking Metformin, a common diabetes drug.)

Should you eliminate simple sugars from your diet? You can try. It certainly won’t hurt you. Will eliminating sugar cure your cancer? Unlikely. Must you deprive yourself or your spouse of the foods he loves? No, but keep the sugar monster in check. Moderation. Moderation. Moderation.

Bottom line: Does sugar cause cancer? No. Should Jim continue to consume the equivalent of forty teaspoons a day? Absolutely not.

Wednesday, July 6, 2011

The Witching Hour

This hour prior to our meeting with the oncologist is comparable to Washington Irvings witching hour--filled with fear,anxiety, and spooky spirits whispering, "Be very afraid."

For the first few days of our stay in Houston, I am able to distract myself with food and books and crossword puzzles. But then the inevitable, unavoidable hour arrives. The walk to the doctors office, the wait in the "waiting" room, the interminable minutes back in his office waiting for him to walk through the door. Hands shaking, heart pounding, I will try to engross myself in a novel but even that won't stop my mind from wandering.

I really have no idea whether the news will be good or bad; experience has taught me that my expectations frequently differ from the reality.Jim always expects the best; I pray for the best and try to prepare for the worst.

I know the Bible verses and believe me I am drawing on them: He who is in you is greater than he who is in the world. I have not given you a spirit of fear... . Satan roams the earth like a roaring lion seeking whom he might devour. But "The spirit is willing but the flesh is weak." My body just seems to take over with the conditioned fear response.

Almost time to leave.

Monday, June 27, 2011

Got Guilt?

Cancer patients and their caregivers experience a multitude of emotions, the least of which is not guilt.

As a caregiver, I feel guilty when I complain, when I am unhappy, when I don’t fix healthy meals, when I spend time on myself, when I am tired, if I don’t accompany Jim to every appointment, and most of all when my faith flags. And my latest heaping coal: I am compelled to plan and execute frequent family gatherings or spend every waking moment with my husband—because I don’t want to have any regrets in the future.

I can find plenty of reasons to feel guilty; I don’t need any help from outside sources.

The media, celebrity spokespersons, well-meaning friends, and even clergymen lay guilt on the already overloaded caregiver. In a recent interview on CNN, Ryan O’Neal blamed his children for Farah Fawcett’s death from cancer. He maintains that because Ms. Fawcett lived a healthy life style and never smoked or drank, her cancer must have been caused by the stress of dealing with his “wild and inconsiderate” children. Who knew? Maybe I could transfer the blame to my children.

Then we have Suzanne Somers, self-anointed health and cancer expert, chastising anyone who chooses traditional treatment. This kind of irresponsible dissemination of information by celebrities lays guilt and blame on those who have enough on their plates. As Alexander Pope said “A little knowledge is a dangerous thing.”

A little learning is a dangerous thing;
drink deep, or taste not the Pierian spring:
there shallow draughts intoxicate the brain,
and drinking largely sobers us again

Celebrities aren’t the only culprits. We also are bombarded by others in positions of influence. I cringe when I hear ministers preach the “name it; claim it” message or when a friend says, “You just have to have faith.” Sifted through my admittedly muddied filter, I hear, “If your husband is not healed from cancer, it is because you didn’t have enough faith.”

The blame game doesn’t only affect caregivers. Lung cancer patients have continually been short-changed in funding because of the stigma associated with the disease. Blaming survivors for their cancer is callous. Cancer patients need all of their resources to fight the disease. They can’t waste time and energy in self-recrimination.

When Jessica Simpson, a spokesperson for “Circle of Friends” said on national TV, “Lung cancer is a selfish disease,” I nearly jumped through the screen. In her attempt to warn young women about the dangers of smoking (a laudable endeavor), she went too far in her incrimination of lung cancer survivors.

For years, we have known the relationship between HPV and cervical cancer. Recent studies have found HPV present in some kinds of lung and head and neck cancers. These findings have generated preventive vaccines which will benefit future generations but the information is of little help to those already affected. More guilt and self recrimination.

Facts can be distorted by generalization and poor reasoning. We are victims of poor logic which works like this:

1. Smoking causes cancer; therefore, smokers deserve cancer.
2. Faith is necessary for healing; therefore, if you are not healed you lack faith.
3. HPV may cause lung cancer, head and neck cancer, and anal cancer; therefore anyone who has these diseases has been promiscuous.
4. Stress causes cancer; you caused me stress; you caused my cancer.
5. Sin blocks our communication with God; if my prayers aren’t answered the way I want, there must be sin in my life.

My message to cancer survivors and caregivers: Don’t be so hard on your selves. No one knows what causes cancer. What caused your cancer is a moot point; your objective is to get rid of it. Guilt is a detriment to that objective. Eliminate “I should haves,” “I shouldn’t haves,” “If onlys,” from your self-talk. Replace them with, “I cans,” “I wills,” and “I hopes.”

No one deserves cancer.

Sunday, June 12, 2011

Cancer Caregivers' Unmet Needs-Cancerscope

my interview with Carrie Printz for American Cancer Society's Cancer Journal

Tuesday, May 31, 2011

You Know You Are A Cancer Caregiver When:

You know you are a cancer caregiver when:

1. You view a trip to an out-of-town cancer center as a mini-vacation.
2. You have a chemo day wardrobe.
3. Your Vera Bradley jumbo bag is packed for infusion days.
4. You sleep nude or nearly so because your spouse is always freezing.
5. Sleeping nude has absolutley no effect on your spouse's libido.
6. You know all of the restaurants within a 3 mile radius of the cancer center.
7. The first words out of your mouth in the morning are “How do you feel?”
8. You have become adept at giving injections.
9. Your kitchen counter looks like a Walgreens pharmacy.
10.Your mastery of medical jargon causes people to assume you are a registered nurse or physician.
11. You wish your spouse was NERD-y.(NERD-no evidence of recurrent disease)
12. You use more acronyms than the federal government. (CT, PET, EGRF, K-RAS, PSA, IMRT, NED, BMT, ABMT, etc.)
13. The “L word" strike fear in your heart and it has nothing to do with homophobia. (Lump, Lesion, and Lymph Node)

Saturday, May 28, 2011

Sick of Side Effects

Unless you have been close to a cancer patient, you are probably not aware of how debilitating treatment can be. Often the only visible sign of cancer is baldness which is temporary and, for most men, probably the least troublesome side effect. In this way cancer is like autoimmune diseases—not obvious to observers but very real.

Most often Jim appears healthy, but appearances are deceiving. He has so many side-effects and is taking so many drugs that we are no longer sure which drugs are responsible for which side-effects. This I know: all of the pain and suffering he has endured over the past nine years is from the side effects—not the cancer. He has—like many lung cancer patients—been asymptomatic from the beginning.

After nearly a year with no chemotherapy drugs, he went into this round of treatment determined not to let it get him down. Since he would be taking the same four drugs he took in 2003 (with one addition) but taking the drugs less frequently, we hoped the treatment would be more tolerable. Wrong. Either the new drug is packing a wallop or Jim is worn down from years of toxic agents, or he is just older.

List of drugs he has taken to date:


The temporary side-effects of these drugs have been manageable. Nausea, joint pain, headaches, diarrhea, dry eye, mouth sores, loss of appetite, fatigue, acne like rash, hair loss, metallic taste in mouth, insomnia, blood clots—all unpleasant but tolerable. The permanent side-effects are a different story—peripheral neuropathy, weakened heart muscle, osteo-necrosis of the jaw, hearing loss, blood clots, nerve damage.
The drugs taken to wipe out the cancer have taken their toll on his overall health. He has gone from taking no medication—except for allergy meds—to requiring twenty or more pills daily. The toxicity of the chemotherapy agents has resulted in conditions requiring more medication.
Carvedilol (Beta Blocker)
Pantoprazole (acid reflux)
Lisinopril (Blood Pressure)
Vytorin (Cholesterol)
Antibiotic (chronic mouth and gum infections)
Sucralfate (ulcers of the alimentary canal)

Still we consider ourselves fortunate. As bad as treatment is, for Jim it has worked. We are grateful for dedicated researchers and physicians who continue to seek a cure for cancer.

Saturday, February 12, 2011

Nothing Had Prepared Me for the Job

As seen in "A New Heart" Spring 2011

When my husband, Jim, was diagnosed with lung cancer in 2002, I suddenly found myself among the fifty-two million family caregivers in the United States alone.
Nothing in my background prepared me for the job.

I grew up in a multigenerational household in which no one was ever sick—or at least they didn’t talk about it. We were a stoic bunch of Midwesterners who seldom took to their beds. We didn’t even own a thermometer; my grandmother used the hand-on-the forehead method.

Nor was I a particularly nurturing person. I didn’t have younger brothers or sisters; I seldom played with dolls, never baby sat; and in imaginary play, I was the always the doctor—never the nurse.

I don’t even like the word “caregiver” which conjures up the image of a little old lady in sensible shoes who speaks to her patients in the third person plural. “Did we eat our breakfast today? Did we sleep well?” But whether or not I liked the word, I had become a caregiver. Though lacking in experience and training, I had the one necessary qualification: I loved my husband and was determined to do whatever I could to help in his recovery.

Jim was diagnosed on November 15. After a week of doctor appointments, scans, tests, and sleepless nights, he went into the hospital for surgery. During the procedure, the surgeon discovered the cancer had spread outside the lung. Reluctant leave his side, I stayed day and night, hoping to hear something that would assure me of his ultimate recovery. It is no wonder I came home from the hospital stay, exhausted, afraid, and completely unprepared for the task ahead of me.

I could handle the physical demands of caring for a seriously ill person had they not been exacerbated by the stress of emotional involvement. This was not like caring for a child with the flu whom you know will recover. My husband had a terminal disease. Every cough or moan or wheeze reminded me of the likely outcome.

I was overwhelmed. Not only was I responsible for dispensing medications, changing dressings, administering injections, bathing, rehab, and meal preparation, I had the additional burdens of decision making, encounters with physicians and medical personnel (which can be intimidating), researching treatments, and keeping my husband’s spirits up.

You’ve heard it said that “God never gives us more than we can handle.” If this is true, then I agree with Mother Theresa who said, “God must have overestimated me.” God does give us more than we can handle—often—so that we will learn to lean on Him. In 2 Corinthians, Jesus says, “My grace is sufficient for thee for my strength is made perfect in weakness.” We need only to surrender ourselves to Him and trust in His ability to do what we cannot. When finally I did this, I—perhaps for the first time ever—understood Paul’s response. “Most gladly therefore will I rather glory in my infirmities so that the power of Christ might rest upon me.” I have never felt closer to God than in those early months when I was leaning so heavily on Him.

Over the past eight years, Jim has had three surgeries, two series of radiotherapy, two recurrences (the last to the bone in 2009), eight chemotherapy drugs, and a second primary cancer. We have seen many miracles—the most impressive, his eight year survival with a deadly cancer.

Less obvious, but just as real, is the transformation God made in me. As only God can, He equipped me to do a job I could never have done on my own and in the process, gave me a new heart for the sick and hurting. Through the support group that we started in 2003, I have had the opportunity to reach out to other overburdened, overwhelmed and often overlooked caregivers. God doesn’t waste our suffering. “Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God “(2 Corinthians 1: 3,4).

Taking care of a cancer patient—particularly one you love—is a job most mortals can’t do alone. Fortunately, when God asks us to do something, he also equips us. If we accept the challenge and overcome the hurdles He places before us, He showers us with unexpected blessings. God hasn’t healed my husband, but He has drawn us closer to the ultimate Healer and enriched our lives immeasurably.

Cynthia Siegfried is the author of Cancer Journey: A Caregiver’s View from the Passenger Seat. She has published articles in Nostalgia Magazine, Chicken Soup for the Soul, Significant Living, Charles Stanley’s InTouch, and Coping with Cancer. She and her husband are co-founders of f.a.i.t.H.—facing an illness through Him.

Sunday, January 9, 2011

Snow Days

This is a reprint of a blog I did a few years ago--quite apropro for today in the MidSouth. Enjoy.

I love snow-days--—a fact which seems paradoxical knowing how rigid and controlling I am. Yet, when Ron Childers breaks into the regular scheduled programming with a weather announcement predicting ice or snow, my heart goes pitter-patter.
Snow days are a phenomenon peculiar to the south. Surprisingly, above the Mason Dixon line, where we had many snowy days, we had very few snow-days. Even during the blizzard of ‘79 which dumped several feet of snow on the Midwest, life went on as usual. But in the mid-south, just the threat of icy precipitation creates bedlam. Highway crews are put on alert; grocery stores are emptied of bread, milk, and marshmallows; and children are glued to the TV hopefully waiting for news of school closings. Former Boy Scouts crowd the aisles of Home Depot in search of batteries and generators. Lines form outside Blockbuster. An approaching snow fall engenders more excitement than the arrival of Santa Claus.
When we moved to Memphis, we brought with us the Yankee attitude toward snow and ice. Our cars were filled with antifreeze; our sleds and snow shovels were within easy reach; and everyone in the family was outfitted with snow gear and boots. We didn’t know that southerners prepared in a different way.
On a December day, before a flake had fluttered to the ground, my sixth-grader called from school.
“Mom, can you come and get me?” she said.
“Are you sick?” I asked.
“No, but everyone is gone.”
“Gone where?” (I’m thinking rapture.)
“Gone home. Their moms picked them up because of the snow.”
Before long I was properly indoctrinated in Southern ways. I knew that y’all was part of the southern dialect but I was unprepared for its versatility. When I picked my five-year old up at school I heard her presumably well-educated teacher say, “Is this y’all’s coat?” Wow! I didn’t know the word had a possessive form. Now I know that y’all can be singular, plural, nominative, subjective, possessive, and superlative—as in “all y’yall.” I learned to eat grits, cornbread, and slaw on barbecue. And I assimilated a new attitude about weather forecasts.
After the first actual snowfall, I understood the southerners’ over-reaction to snow. They lacked the benefit of training and experience. No one could get out of their drives after a snowfall, because no one shoveled snow. While our neighbors sat in their warm houses enjoying the Currier and Ives scene, my husband cleared our driveway. The next morning when the packed snow had turned to ice, he drove happily off to work while the neighbors were trapped inside—victims of inadequate weather education.
Of course, we didn’t know that getting out of the driveway was the easy part. Driving was treacherous because road crews weren’t prepared to clear side roads. The conditions were exacerbated by the ineptitude of the drivers who had never learned to navigate snow-packed roads. Those, like us, who ventured out in direct violation of the warnings, took their lives in their hands.
Unaware of the danger, I dared to jump in my car, toddler in the back (car-seat non-existent), and headed out into the melee. As I crept through the intersection at Poplar and Germantown road, I opened my window to get a better view. Mistake. Just as I turned the corner, a city worker threw a shovel full of cinders into my open window interrupting my rousing rendition of “Silver Bells.” I was spitting and sputtering, momentarily blinded, and left picking cinders out of cranial orifices for weeks.
The excitement of the kids was contagious and I celebrated with them when the announcement of school closings included Shelby County. They went to bed with their pajamas inside out—a superstition guaranteed to work, in case their prayers weren’t enough to counteract their dad’s. For some reason, he never got into the snow-day spirit-- much to our consternation. Maybe he was jealous since he was the only one who couldn’t turn off the alarm and crawl back into the warm bed. Wall Street didn’t shut down because of a little snow in cotton country. Jim took the closings as a personal affront, an indication that America was moving toward annihilation as the citizens became slackers and sissies.
We were among the few families that owned a sled and a toboggan. The neighborhood kids sought out the nearest hill (or slight rise in the ground) and tramped up and down repeatedly until they were sliding on dirt. After a few hours they came in smelling of wet wool mufflers and mittens. I stood ready to fortify them with hot chocolate and warm cookies before they headed out again to take advantage of the short-lived winter playground.
The children are long-gone now but I still thrill to the list of closings and cancellations on the bottom of the TV. I’m not sure why. Maybe it’s because a snow-day brings the kind of imposed cessation of obligation that otherwise comes only with hospitalization—my own. Everything comes to a halt—a cease-fire in the harried battle of life where the commander-in-chief has given us a twenty-four hour reprieve. Shall we watch an old movie, read a good book or my favorite, bake some gooey verboten comfort food?
Pull out the stops. On a snow-day anything goes.