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.
Sunday, September 18, 2011
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.
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.
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.
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)
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:
Taxotere
Cisplatin
Gemzar
Navelbine
Neupogen
Epogen
Celebrex
Coumadin
Alimta
Avastin
Carboplatin
Zometa
Taxotere
Cisplatin
Gemzar
Navelbine
Erbitux
Rapamycin
Metformin
Neulasta
Lovenox
Decadron
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.
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:
Taxotere
Cisplatin
Gemzar
Navelbine
Neupogen
Epogen
Celebrex
Coumadin
Alimta
Avastin
Carboplatin
Zometa
Taxotere
Cisplatin
Gemzar
Navelbine
Erbitux
Rapamycin
Metformin
Neulasta
Lovenox
Decadron
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.
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