caregiver banter

Cancer Economics

2012-02-07T11:49:00.000-08:00

Before cancer, I didn’t pay much attention to health coverage. No one in our family had been seriously ill and we had excellent group insurance through Jim’s employer. Our deductible was negligible. When we were deciding on an oncologist, I remember in my naiveté telling Jim, “I don’t care whether the doctor we choose accepts our insurance, we are going to the place that is best for you even if it means paying out of our own pockets.” Little did I know that our pockets would be emptied along with our piggy banks after first week of cancer treatment.

We were fortunate. For the first five years of cancer treatments, our insurance paid 100%. Even the Neupogen and Epogen injections I gave Jim at home were fully covered. Thank God because the shots would have cost 4,000 dollars a week or 128,000 dollars for the sixteen weeks of treatment.

By the time of Jim’s first lung cancer recurrence, our benefits changed—requiring a 10% co-pay, a sizeable amount considering the astronomical cost of cancer treatment—but still manageable. Manageable, but enough to make us question the cost verses benefits of every recommended drug and procedure.

In 2011, we, the first of the baby boomers became card carrying members of AARP. Medicare is now our primary provider and we had to choose which part, which supplement, and which drug plan we wanted for secondary. After much research and professional advice, we chose AARP for our prescription drug coverage. We followed instructions, contacted our physicians to send in prescriptions, and waited to begin receiving our meds.

Instead we received calls to tell us that several of our drugs had not been approved. Nearly all of those that were approved tripled in cost.

I only take four medications: Boniva, Lexapro, Singulair, and Lumigan (an eye drop for Glaucoma). I could probably live without all but the Lumigan, and I may choose to do just that.

Jim who took no meds prior to his cancer diagnosis now takes a whopping fifteen. And that excludes any chemotherapeutic agents since he is off chemo at the present time. To be fair not all of his medications increased in cost, but the eight that did, skyrocketed.

I have always been sympathetic to the plight of senior citizens who are unable to afford life sustaining medications. I never imagined I would be one of them.

When I fear that we won’t be able to afford Jim’s medications or more accurately that our savings will be wiped out by rising medical costs, I must remind myself that God has provided for us throughout this journey, indeed, throughout our lives. He will continue to provide what we need when we need it. “Therefore, take not thought, saying what shall we eat? Or what shall we drink? Or Wherewithal shall we be clothed...for your heavenly father knoweth that ye have need of all these things.”

Insurance providers will change; Medicare might fail; Social Security might come tumbling down. But Jesus Christ is the same yesterday, today, and forever.

2012-01-31T13:30:00.000-08:00

The remaining resolutions concern time management.

Keeping my other resolutions—blog more regularly, juicing, daily Bible reading, more frequent exercise—requires better time management.

Lack of time is a fundamental stressor in the life of a caregiver. Finding time for oneself is often impossible. This was true for me even before I became a writer. Three years ago when I first began writing for publication, I pared down my schedule and adjusted my priorities so that I would have time to take care of my husband and fulfill my own desire to write. Giving up tennis gave me ample time to write, publish, and market my first book.

Writers are great procrastinators. As time passed, I’ve found ways to waste the time I gained. If I vow to write for an hour each day, I sit down at the computer and waste 30 or 45 minutes reading emails and checking facebook, my favorite shopping sites, and e-bay. By the time I get around to working on my book, articles, or blog, I am sleepy or hungry. Once I get up from my work station, I am likely not to return.

I’m trying something different this year. Instead of devoting an hour a day to business, I am committing to ½ hour. And most important, I don’t do anything else on the computer until that time is up. No facebook, no Pinterest, no emails until I’ve done something constructive. Surprisingly, getting started is half the battle. When the half hour ends, I often plunge ahead with what I’m working on.

I encourage you to consider how you are spending your time. Can you become a better time manager? Take a look at those activities that suck precious minutes from your day. Would you be better off without them? Such pastimes can masquerade as tension relievers but actually result in creating tension when they keep you from productive activities (exercise, Bible Study, social interaction, reading). Maybe you need to limit your time on Facebook or computer games.

Betty White summed up my feelings about Facebook when she hosted Saturday Night Live:

“I didn’t know what Facebook was, and now that I do know what it is, I have to say, it sounds like a huge waste of time. I would never say the people on it are losers, but that’s only because I’m polite. People say ‘But Betty, Facebook is a great way to connect with old friends.’ Well at my age, if I wanna connect with old friends, I need a Ouija Board. Needless to say, we didn’t have Facebook when I was growing up. We had phonebook, but you wouldn’t waste an afternoon with it.”

Right on, Betty!

Juicing-- Drink Your Veggies

2012-01-24T15:50:00.000-08:00

Let’s take a look at juicing--resolution #7.

I have been “cleaning” up my diet for so long, my insides should be Mr. Clean-sparkling. Unfortunately, they are not. After failing to adhere to many New Year’s resolutions, this time I’ve decide to ratchet my expectations down a bit. Rather than deny myself anything, I’m going to add something--a nutrient brimming, daily juice.

The NCI, National Cancer Institute, recommends 5-10 servings of fruits and vegetables per day. Juicing is an excellent way to reach that goal. Early in our cancer journey—actually between Jim’s lobectomy (that's lobectomy not lobotomy) and the time he started chemo (6 weeks)—I incorporated juicing into his daily routine. I started with the more palatable carrot combinations and eventually cajoled him into drinking three, eight ounce glasses a day. My hope was not to cure the cancer but to build him up before he began treatment. Evidently, it worked.

Once he started chemo, we gave up juicing. With the loss of appetite, nausea and mouth sores, getting him to eat anything was an accomplishment. Over the last 10 years, during periods of remission, I tried juicing again. We bought a Blendtec to make fruit smoothies into which I would sneak an occasional handful of spinach. Fruit combinations go down easy—vegetables, not so much.

My friend, Jess Ainscough, The Wellness Warrior, who is fighting cancer with the Gerson method has some excellent advice on juicing. This is her recipe for basic green juice.

Caution: Items in picture appear much tastier than they are :)

1 stalk kale
1 stalk silverbeet or Swiss chard
1 leaf Cos (Romaine) lettuce
1 frozen banana
Coconut water or purified water
1 tsp spirulina

What to do:

1. Add green leaves to the blender and cover with coconut water and/or water. Blend until smooth.

2. Add frozen banana and blend again.

3. Add spirulina and blend again.

4. Enjoy!

The first three steps are easy enough, but the last step gives me trouble. I don’t really enjoy the concoction. The addition of fresh lemon juice helps somewhat.

Juicing—even once a day—is a chore for me. During the busy holiday, on a trip to Costco for more processed, fat laden foods, I noticed a bottle of familiar looking green sludge on the shelf in the refrigerator section. After examining the list of ingredients, I decided to give “Naked-The Green Machine” a try.

I recommend it, not as a replacement for fresh juice, but as an option for those days when you are in a hurry. And, it tastes good—so good that I wonder how much of the beneficial greens are included in the fruit mixture. Evita Ochel, editor of Evolving Wellness and a certified nutritionist, biologist and educator, says about Naked, “This product is way better than 99% of all the other bottled beverages out there,” but it still loses something in the processing.

If you are a novice juicer you might give Naked a try. I’m hoping this tasty alternative will prepare my picky palate for the more potent home-brewed potion.

A Dose of Gratitude to fight Cancer

2012-01-19T12:26:00.000-08:00

Enough about exercise let’s move on, or rather back, to my second resolution:

2. Before getting out of bed, give thanks for five things.

If you have read my first book, Cancer Journey: A Caregiver’s View from the Passenger Seat, you may remember that one of the first lessons I learned when confronted with cancer was that I was to respond to my situation with thanksgiving—not for the cancer, of course, but for the good that God could bring from it.

It should be easier to give thanks when all is well in life, but after a long period of adversity, often we are lulled into thinking that we have earned our blessings. Not wanting to fall into that trap, during this welcome time of Jim’s remission, I decided to make a conscious effort to thank God for the blessings of the day—morning and night.

The Bible gives clear instructions about giving thanks. "At all times and for everything giving thanks in the name of our Lord Jesus Christ to God the Father" (Ephesians 5: 20). Like many commands in the Bible, to give thanks in all situations seems not only difficult but counterintuitive. However, life experience has shown me that all of God’s laws were designed for our own good that we might have joyful abundant lives. This one is no exception.

Gratitude has lately become a buzz word among health experts. A recent article in the Wall Street Journal reported that people who maintain an “attitude of gratitude” tend to be happier and healthier than those who don’t.

Robert Emmons, a scientific expert on gratitude and the editor-in-chief of The Journal of Positive Psychology has done research indicating that gratitude not only can increase happiness but can even help people with chronic health problems.

If gratitude goes against your grain, don't worry. Change your behavior, and the attitude will follow.

1. Follow my lead and start and end the day with thanksgiving. If you can't find five reasons to be grateful, start with one. Even if you don't "feel" thankful, do it anyway.

2. You might also keep a gratitude journal, recording daily the blessings you have received.

3. Make it a point to thank those who perform a service for you.

4. Write a note or send a card to someone whom you appreciate.

Start today. After a few weeks you should see a change in the way you feel.

And, Thanks for following my blog.

Exercise and Cancer

2012-01-12T15:09:00.000-08:00

The benefits of exercise are indisputable but you may not know that physical activity has been shown to effect cancer recovery and cancer prevention. Today's guest blogger is David Haas, a cancer survivor, patient advocate, and researcher for the Mesothelioma Cancer Alliance

Cancer and Exercise: The Benefits are Enormous

No one wants to hear the word cancer, ever. There is nothing good about the word and what it means for anyone that has to hear it because it typically means that someone you love, or even you yourself has been diagnosed with the terrible illness and the road ahead is going to be a long, arduous one. Unfortunately, too many people are diagnosed every year with different forms of cancer, especially rare cancers such as mesothelioma. Mesothelioma doctors, and other doctors that treat other forms of cancer, believe in the benefits of exercising whether you were recently diagnosed with cancer, are undergoing treatment for cancer or you have overcome cancer and are currently in remission.

You know that the benefits of exercise are enormous in your everyday life; healthier bodies are just a few of the benefits of exercise. But did you know that exercising while you are fighting cancer also has enormous health benefits? According to the New York Times, the Memorial Sloan-Kettering Cancer Center sponsors an aerobics class for cancer patients because doctors are so positive that the effects of good health and exercise are beneficial to patients in their attempt to overcome cancer.

It is no secret that working out is not everyone’s favorite activity, but it does make you feel better when you are finished. You feel healthier and your mood is improved because you’ve just done something good for yourself and your body. When you are undergoing cancer treatments, recently learned of a diagnosis or are in remission, the positive attitude – and other health benefits – attained from exercising is helpful to you. Doctors recommend exercising as much as possible, when possible during the course of your cancer treatments or diagnosis. Of course, not all cancer patients are in the position to work out at all times, but even light exercise such as a short walk each day is enough to boost health, both mentally and physically.

Wendy Rahn, a cancer survivor, stated that once she underwent her double mastectomy, her shoulders were in so much pain she was often hunched over and unable to stand straight. After doing some research she discovered that she may be able to alleviate the pain with exercise and decided to give it a go. Upon exercising, the pain was alleviated and she has since opened a fitness center in Minnesota designed to help cancer patients and survivors with their pain.

Get off the Couch, Potato

2012-01-11T12:35:00.000-08:00

4. Exercise at least four days per week. (mixing Pilates, Barre Tone, walking)

Don’t worry. You didn’t miss resolutions 2 and 3. My original intention was to discuss the resolutions in the listed order. However, today I am skipping ahead to # 4 because the topic goes hand in hand with a book I am recommending written by my friend and colleague, Kathi Casey. If you are fighting cancer or if you are caregiver for someone who is, you probably have little time to devote to organized exercise. Kathi's book will give you some creative ways to incorporate fitness into your daily routine--however hectic it might be.

You probably know by now how these promotions work. If you purchase the book today, you will receive hundreds of bonuses from authors (including me), business leaders, and experts in various fields.

Note: I am recommending Kathi’s book not endorsing the products or services included in the bonuses. That said, I’m sure there are some among the many partners that you would find helpful and in keeping with a Christian world view.

About the book:

“Get Off the Couch Potato!” is a powerful, yet fun, 30-day fitness program you can begin while lying on your couch watching TV! Each day's exercise is demonstrated by Kathi's lovable Couch Potato!

Kathi Casey's awesome 30-day fitness plan is the perfect solution for over-worked parents, television addicted teens, out of shape Baby Boomers, and more. Destined to become a classic, this little book will make you laugh and provide you with many tips and tools so you can take charge of your own health care - regardless of what Congress does! Pick up your copy of "Get Off the Couch, Potato!" now! www.getoffthecouchpotato.com

The GREATEST GOLDMINE of inspirational affirmations and daily exercises designed to get the most dedicated "couch potatoes" off the couch and moving! Make 2012 the year that you achieve those New Year’s resolutions to get back in shape – You deserve it!

Tomorrow guest blogger, David Haas, cancer survivor and patient advocate with the Mesothelioma Cancer Alliance, will share more on this topic.

The Magic of Melatonin

2012-01-10T14:36:00.000-08:00

In the early nineties, long before Cancer arrived at our doorstep, I started taking melatonin as a sleep aid. We were traveling a lot at the time and moving across time zones which exacerbated my pre-existing sleep problems. When I saw that it helped with jet lag, I wanted to try it for insomnia but I was concerned about side-effects, the correct dosage, and any problems that might arise with self medication—even though it was touted as natural and harmless.

We didn’t even own a computer at the time which made research a little more difficult. So when I saw The Melatonin Miracle in the book section at our natural food store, I snatched it up. This is what I learned:

1. Melatonin is a hormone produced in all mammals by the pineal gland.

2. The pineal gland, sometimes referred to as the “aging clock,” is part of the endocrine system and located in the center of the brain.

3. The production of melatonin, affected directly by the circadian cycle, decreases as we age.

4. Melatonin has proven to be a safe and effective sleep aid.

The authors, Walter Pierpaoli and William Regelson, included much more in the book about the benefits of melatonin supplementation: slowing the aging process, boosting the immune system, increase in sexual function, improved memory, and more. I wasn’t thoroughly convinced the pill was a miracle solution to all of these problems, but if it would help me get a good night’s sleep, it was miracle enough. If it delivered on all the other promises, all the better.

I started taking melatonin regularly in 1994 and have continued to this day. I take two, one milligram pills, sublingually, between 10 and 10:30 every night. I seldom have any problem going to or staying asleep. The only side effect I have ever experienced is intensified dreaming.

In 2009, during Jim’s fourth episode of lung cancer, his oncologist recommended that he take 20 milligrams of melatonin each night along with metformin a drug used for diabetics. Recent research, he explained, indicated that the two drugs, or I should say the supplement and the drug, in combination, were being used to slow the progression of solid tumor cancers.

It seems Pierpaoli and Regelson were on the right track; maybe melatonin is a miracle.

Tips for a Restful Sleep

2012-01-07T11:18:00.000-08:00

“When thou liest down, thou shall not be afraid: yea, thou shalt lie down and thy sleep shall be sweet” (Proverbs 3: 24).

I have had sleeping problems most of my life. I suffered from insomnia, night terrors, sleep walking and talking, and most other sleep disturbances. In college and during my young adult years, my main problem was falling asleep. In later years I had trouble staying asleep.

I’ve tried every method to cure insomnia—warm milk, a hot toddy, a clean conscience—and finally hit on a routine that helps. A warm bath, an hour or two of reading, a comfortable bed (preferably my own), high count cotton sheets, a room with good feng shui, and a few melatonin upon retiring. The room temperature has to be just right—not too hot, not too cold. The covers must be the right weight and the pillow neither too firm nor too squishy. When I am worried, I don’t count sheep, I repeat Bible verses.

These tips might help you get the quality sleep essential to mental and physical health:

1. Try to adhere to a regular bedtime.

2. Take a warm bath before retiring.

3. Keep the room cool. (68 degrees is good for me.)

4. Use natural fibers in bedding.

5. Avoid caffeine after 5 p.m.

6. If you are disturbed by noises, try a sound machine. (white noise, waves, birds chirping)

7. If you are over forty, consider melatonin supplements.

8. Keep a notepad by your bedside to record last minute thoughts.

9. Practice gratitude. Fall asleep thanking God for the blessings of the day.

10. Memorize scripture verses to repeat when you awaken in the night.

Tomorrow, I will discuss the benefits of melatonin as a sleep aid and as an immune system booster in cancer treatment.

How much sleep is enough?

2012-01-05T15:41:00.000-08:00

Day five and holding.

Let’s take a look at the motivation behind my resolutions so that you can decide whether to incorporate some of them into your personal list.

1. Set alarm for fifteen minutes earlier.

Notice I didn’t mention the specific time I wake up.

I’ve always required a lot of sleep—at least eight hours, preferably nine. My mother who was lax about most health habits held firm on an early bedtime. The habit stuck with me. When my college friends were burning the midnight oil, I was fast asleep with my earplugs firmly inserted. Since my oldest child left for college, I set my alarm at the embarrassingly late hour of 8:30 a.m. on days that I have nothing scheduled which is most days since I rigidly avoid early morning activities and appointments.

Turns out Mom was right. Authorities agree that most adults need 7-9 hours of quality sleep for optimal health and performance. Recent research indicates that not getting enough sleep can contribute to a multitude of problems—even cancer. “....individuals [who do not get enough sleep] are not only immune suppressed, but they are also at an increased risk of developing a number of different types of cancer.” http://www.ncbi.nlm.nih.gov/pubmed/19095474

Jim was always an early riser—awake at 5 or 5:30 for a three to five mile run and then off to work by 7. He slept soundly and insisted he only needed five or six hours. That may have been because of the cat naps he grabbed in the middle of conversations, during movies, and, most alarmingly, while driving down the road. Now I wonder if those years of sleep deprivation contributed to the onset of lung cancer.

Why, then, if sleep is so important, am I beginning the year with the intention of getting less? Time management. I don’t think I’ll miss the fifteen minutes and I can use that time for some of my other resolutions.You, on the other hand, may need more sleep.

If you are a caregiver, sleep is essential to combat stress. If you are fighting cancer, sleep is essential to healing. Tomorrow I will give you some tips for getting a good night’s sleep.

A Caregiver's New Year Resolutions

2012-01-03T15:01:00.000-08:00

Although New Years Eve is my least favorite holiday, I love the onset of the New Year. A New Year signifies a new beginning, a fresh start, a chance to look at where we’ve been and where we are going.

I, like most people, make resolutions but seldom keep them all. Rather than berate myself for my lack of follow-through, I recognize the value of making the resolutions in the first place. I view them as goals which if practiced long enough might become habits. At the very least, I am headed in the right direction.

A caregiver’s goals should not add stress to an already stressful existence. They should be attainable and designed to improve well-being, both in mind and body.
Here are ten goals I have set for 2012. Remember, my husband is in remission; I have more time than when he is in treatment. My goals might be too ambitious for you or not ambitious enough.

A Caregivers New Year Resolutions

1. Set alarm fifteen minutes earlier.

2. Before getting out of bed, give thanks for five things.

3. Read Bible and daily devotional.

4. Exercise at least four days per week. (mixing Pilates, Barre Tone, walking)

5. Spend average of 30 minutes per day writing. (newsletter, blog, new book) No FB or email until writing is finished.

6. Blog. Blog. Blog.

7. Drink one vegetable smoothie or fresh juice drink five days per week.

8. Read and respond to emails twice daily—only.

9. Limit FB, Pinterest, and on line shopping to 20 min per day.

10. When I hit the bed, give thanks for five things.

On day three, my resolve is holding. In upcoming posts, I will elaborate on my resolutions AND let you know how I am doing.

Scanxiety Revisited

2011-09-18T16:12:00.000-07:00

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.

Cancer and the Sugar Monster

2011-08-02T20:19:00.000-07:00

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.

The Witching Hour

2011-07-06T11:28:00.000-07:00

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.

Got Guilt?

2011-06-27T13:56:00.000-07:00

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.

Cancer Caregivers' Unmet Needs-Cancerscope

2011-06-12T18:17:00.000-07:00

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

You Know You Are A Cancer Caregiver When:

2011-05-31T14:51:00.000-07:00

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)

Sick of Side Effects

2011-05-28T12:06:00.000-07:00

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.

Nothing Had Prepared Me for the Job

2011-02-12T14:00:00.000-08:00

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. www.caregivercancerjourney.com

Snow Days

2011-01-09T12:18:00.000-08:00

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.

More Nutraceuticals for Cancer

2010-12-08T19:12:00.000-08:00

In my search for a good supplement for cancer patients I revisited some of the sources I found early in our cancer journey. One of these was a product by BioImmune Inc called Enhanced Immune Response. Dr. Robert Moore, a naturopathic physician from Indiana first suggested the product for Jim in 2003. The powder which is taken dissolved in juice contained every vitamin, mineral and herb touted for immune system support that I had come across in my research. And it contained adequate amounts. The driving force behind the company was Arnold Takemoto a researcher devoted to the production of nutraceuticals in cancer treatment. BioImmune was not a multi-level marketing or pyramid level business. The products were only available through medical professionals. Everything checked out and I was convinced that the products were of high quality.

Jim took the supplement for two years along with a buffered Vit C powder also manufactured by the company. Was it effective? Well, Jim remained healthy during the year of aggressive radiation and chemotherapy and he had no evidence of recurring disease during that time. Would that have happened without the supplement? Maybe. Maybe not.

Fast forward to 2010. As I was researching, another nutraceutical company, GNLD, for f.a.i.t.H., it occurred to me that I should probably speak again with Dr. Moore and offer the group information about the supplement Jim had taken. Dr. Moore was, as he has always been, very helpful. He suggested that I contact Arthur Takemoto directly to tell him about Jim’s recovery and about the f.a.i.t.H. group.

I called on a Friday. On Saturday, Dr. Takemoto’s wife Colleen called me back and talked with me for more than an hour about their philosophy, their company, and their “mission”—to help people in their cancer battles. I was pleasantly surprised to hear her say that they are Christians, eager to share Arthur’s gifts with the world.

I’m thinking: Wow! God must have sent me here—all part of his plan to help us find a team of Christians to cure everyone in our group. She told me all about the science behind their newest products (nanotechnology) which, when combined with Immune Enhanced Response make an aggressive alternative program which has been successful in treating late stage cancers. I mentioned to her incidentally that I was somewhat concerned by Jim’s recent physical which showed an elevated blood calcium level.

On Monday, out of the blue, I got a call from Dr. Takemoto himself. No niceties. No small talk. Right to the dagger-like point.

“If your husband’s calcium blood level is elevated, I am 95% certain that the cancer has returned to the bone.”

“Couldn’t it be the result of prior treatment or an indication of a heart irregularity?” I asked, hoping he was wrong.

“Did you not hear what I just said?” he replied in a patronizing tone.

He then went on ad nauseum about his many accomplishments and accolades while I struggled to digest the long distance diagnosis he had just delivered.

Basically he was saying that the only hope was for Jim to start immediately on his program including intravenous vitamin C which could not be administered in TN. The program would cost 4,500 dollars a month (not covered by insurance). When I expressed shock at the cost, he allowed that if there were some others in my group who used his products he could give me a finder’s fee-- greatly reducing our outlay.

Finally, I said, “Look. I hate to be rude but I am really upset and I need to get off the phone to call my oncologist to set up a pet scan. What you’re saying may be true but I need to see exactly what his blood calcium level is and get further tests set up.

I’m sure those of you who have never been in the passenger seat on a cancer journey are wondering why the red lights weren’t flashing in my brain. How a medically savvy adult could, with no reservation, buy into this doomsday diagnosis from a man whom she had never met, can only be understood by those who live under cancer’s shadow.

When I finally was able to extricate myself from his clutches (only after he told me to get my affairs in order), I called the internist’s office leaving an urgent message to get back to me with the results of Jim’s blood work. She returned my call an hour later giving me enough time to call everyone in the family raving like a lunatic that Jim’s cancer was back and I was packing my bags for Houston. No, I’m not exaggerating. I wish I were.

When the nurse did call back she reported that Jim had misunderstood. It is his cardiac calcium score that is elevated NOT his blood calcium level. He goes for a Thallium stress test tomorrow morning. Calcium build up in the arteries is not good but probably not fatal. Preferable, at least in my somewhat twisted mind, to cancer.

I sent Dr. Takemoto an e-mail explaining that we had the wrong information and wouldn’t need his full treatment at this time. Not wanting to throw the baby out with the bathwater, I was very polite, and requested more information for a man I know who wants to use only alternative treatment.

I have not heard another word from the good doctor. Jim and I will not be using the BioImmune products.

Another magic bullet disintegrates.

Nutritional Supplements for Cancer

2010-11-28T14:56:00.000-08:00

For the past few months, the topic of conversation at the f.a.i.t.H. meetings has been nutrition, supplements, and complementary treatments. Although everyone in the group is receiving or has received traditional therapies for cancer, all of us are interested in any natural or complementary methods to boost the immune system to enable the body to fight cancer cells and recover from the harsh drugs we have taken.

Jim and I as group facilitators so not endorse any specific type of treatment—traditional, complementary or alternative, but we encourage a free and open exchange of information among the members. I remind you that these are nothing more than opinions—even when they are supported by research and personal experience.

Over the last eight years I have researched a variety of touted “cures” for cancer and concluded that there are no miracle cures. I decided early on that changing the host (the human body) might prevent the cancer from growing again—by changing the environment to make it less supportive of the proliferation of cancer cells. If this were a panacea, people who have been practicing these healthy habits for most of their lives would not get cancer. But they do.

Let’s talk about GNLD which was recommended by one of our members who has seen improvemnent in her husband while taking the supplements. The Golden Neo-life Diamite Company has been around since 1958. They have operated as network marketing company for 52 years. I am somewhat leery of pyramid marketing businesses although I admit this might be a personal bias. I am all for capitalism and don’t object to entrepreneurs making money commensurate with the effort they put forth, but I always wonder whether they are promoting the product for personal gain or because of its benefits to the consumer. Network marketing companies must inflate the price of their products so that the sellers on each level make a profit. Generally companies that function in this way will branch out from their original niche to get into more profitable areas, e.g., cleaning supplies, weight loss products, etc.

That being said, GNLD has not had complaints filed against them and they have an excellent BBB rating.They also have a Scientific Advisory Board with eminent experts in health and medicine. One of the most renowned members was Arthur Furst, a cancer researcher sometimes called the founder of modern chemotherapy. He joined the board in 1978 because he believed that “proper nutrition can protect people from cancer.”

The company has several lines of products divided into nutritionals, herbals, weight loss, skin and personal care, and home care. The Pro Vitality line is has 3 main supplements: Tre-en-en-- developed in 1958 (“provides whole grain lipids & steroids, optimizes cell membrane function”); Carotinoid Complex (whole food supplement providing carotenoids from fruits and vegetables); Omega-III Salmon Oil Plus- ultra hi-potency fish oil.

These seem to be hi quality supplements providing what they claim to provide in terms of ingredients but maybe not benefits. They are expensive though granted less expensive than buying the organic foods that supply the nutrients they include. And surely they are easier to consume and require no preparation. They also provide nutrition to a patient who might not have the appetite to consume the foods.
If you want supplements beyond those naturally found in foods, you must jump into their one of their other lines—herbal or nutritional. In other words the Pro Vitality line provides nutrition but is lacking in other natural compounds recommended for fighting cancer.

I will be covering another nutraceutical company, BioImmune, when I conclude my research. My advice, in the meantime, is to prayerfully consider any treatment plan and be wary of anyone who promises a magic bullet. Exercise, increase your intake of fruits and vegetables, avoid processed foods, and lift each other up in prayer to the Great Physician.

Why Suffering?

2010-11-04T19:45:00.000-07:00

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen but on what is unseen. For what is seen is temporary but what is unseen is eternal.” 2 Corinthians 4: 16-18

The diagnosis of a terminal or life threatening disease—like cancer—causes one to seek answers to life’s important questions. In order to accept the possibility of Jim’s death, I needed to believe there was a purpose to our suffering. My ensuing spiritual quest is chronicled in Cancer Journey: A Caregiver’s View from the Passenger Seat. When we spoke this week in Alabama and Georgia, I was reminded how hungry the listeners were for this message of hope and healing. I came home with renewed enthusiasm for sharing our story with the battle-weary warriors on this life journey.

No one is spared suffering in a cancer battle; often it is not until we suffer that the questions arise. From the depths of our despair come the questions: Is God good? Is God omnipotent? Can a good God allow suffering? Either He is good but not all powerful; or He is all powerful, but not good. Can He be both? If He loves us why doesn’t He fix us? As Philip Yancey writes, “Where is God when it hurts?” The answers we come up with will draw us closer to God or drive us further from Him.

On this earth everyone suffers. Suffering is part of the human condition, whether it is in the form of physical pain or mental anguish. Is the suffering senseless?

I like the Roman Catholic idea of “redemptive suffering” first introduced to me by a friend, Cheryl Himmelright. Suffering brings us closer to our Lord Jesus Christ if we view it as an opportunity to share in his suffering for us on the cross.

In “The Redemptive Suffering of St. John,” Father Michael Buckley explains it like this:

“-The God of the Universe is totally Good, Wise, Merciful, Just. His being excludes any shadow of evil.
- Sorrow, suffering and pain did not form part of the original divine plan for mankind. The Old Testament presupposed and described an idyllic era when all was harmonious and peaceful.
- The root cause of evil in the world is: Satan, and mankind, in so far as it comes under the influence of the "Adversary."
- Though God is not the cause of evil and suffering, He can use it, so to speak, as a means of correction and redemption. This, like the other propositions, has to be very carefully understood and interpreted.”

Before you can accept God’s grace and take comfort in His promises, you must decide whether He is trustworthy. To do this, immerse yourself in His Word. See what the Bible has to say about suffering beginning with the Old Testament accounts of Job, Isaiah, and Jeremiah. Call to mind God’s faithfulness in dealing with you through other difficult times. He demonstrates His faithfulness in the small things so that we can trust Him in the bigger ones.

Hopefully you will, as I did, conclude that God is good, that He is a merciful God of Sorrows who sees our suffering but knows that it is fleeting, that He would not leave us in our misery without the hope of being reunited with our loved ones for eternity. Believing these things doesn’t make suffering easier to understand but it does make it easier to bear.

From Father John Lombardi, another Catholic scholar:

“Redemptive suffering is any trial or tribulation (physical or mental) we offer up and UNITE to Jesus- as a "gift" to Him to express our love thru a costly way, in exchange for some other good. Notice the key elements: we consciously choose embrace suffering; it is precious (a "gift") because it is painful (not fun or "easy"); it brings us close(r) to Jesus in an intimate and intense way; and the suffering may "spiritually repair" my own soul or others-and thereby help in the work of redemption (Christ's allowing me to help Him save souls).”

“There are two kinds of suffering-redemptive suffering and wasted suffering…Which one will you chose?”

Lung Cancer Facts

2010-11-01T13:35:00.000-07:00

To kick off National Lung Cancer Awareness Month I am listing facts about the disease that changed our lives. Share this with everyone you know to boost awareness, encourage contributions, and save lives.

1. Lung cancer is the # 1 cancer killer.
2. Lung cancer is the #1 cancer killer among women having surpassed breast cancer in 1987.
3. Lung cancer kills more people than colon, prostate, and breast cancers combined.
4. Yet, lung cancer research is least funded of all of the major cancers.
5. Lung cancer kills twice as many women as breast cancer but receives 1/10 the amount of funding.
6. 6 of 10 diagnosed with lung cancer will die within the first year.
7. 7.5 of 10 will die within two years.
8. 20% of those diagosed have never smoked.
9. 60% are former smokers many of whom stopped more than twenty years before.
10. Only 20% are currrent smokers.
11. One reason for the lack of support for LC is the lingering stigma of the disease. No one deserves lung cancer. Share this information with everyone you know.

Why a Support Group?

2010-10-09T19:28:00.000-07:00

My introduction to support groups came years ago when co-dependency was the buzz word among lay people and psychologists. I had reached the point where I couldn’t answer the simple question, “How are you today?” without first consulting with my three children. If all was well with them, all was well with me. I was never happier than my least happy child. Seldom were all three problem free, which meant I was seldom happy. Having decided that I fit the criteria for codependency (don’t all mothers?), I finally sought help.

The psychologist thought I would benefit from joining a group of other “co-dependents.” Being a rather private person and new to psychotherapy, I wasn’t eager to share my neuroses with a group of strangers, but since it was more economical than private sessions, I agreed. I was not comfortable at the meetings. I feared judgment; I didn’t really want them to know that I was a sick puppy. I became even more reticent when I realized that compared to the others, my problems were trivial. If I was a sick puppy, they were dying dogs. After sticking it out for several months, I left the group. The only therapeutic value came in the realization that I wasn’t as bad off as I thought.

Despite that negative experience, I am a zealous believer in support groups for cancer patients and caregivers. When Jim was diagnosed, I was desperate to find a group of people who understood what we were going through. I needed to know that survival was possible. I needed someone to help me sort through the maze of a cancer diagnosis. When we couldn’t find a group that met our needs, we started our own—f.a.i.t.H.--facing an illness through Him.

The members of f.a.i.t.H. are bound together by shared experience and a mutual foe—a killer disease. In this group, we do more than regurgitate our pent up hostilities and personality disorders with the sole purpose of catharsis. We do express our emotions without fear of judgment, but something magical happens when our burdens are shared with those who truly care about us and want to help. We are a proactive group intent on helping each other. In my first support group, the members were focused on their personal problems. In this group, the members focus on each other’s problems. We en-courage each other with the same encouragement we have received from God.

“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: 3-5).

If you are reluctant to join a support group, I ask you to consider some of the benefits:

1. The exchange of information.

A. How to control side-effects

B. Dietary concerns & recipes

C. Available protocols

D. Insurance information

E. Books

F. Oncologists

G. Treatment centers

H. Available trials

2. Reassurance that your feelings are normal.

3. Encouragement that others have survived cancer with prognoses as grim as your own.

4. Hope

5. Prayer support

6. Fellowship

7. Laughter

A good support group provides answers to the questions that most of us ask when confronting serious illness: How can I survive this? What happens if I don’t?

Most importantly, we come away from meetings knowing our concerns will be lifted up to the Ultimate Physician who can actually empower us for the battle we face. “For where two or three are gathered together in my name, there I am in the midst of them” (Matthew 18: 20).

2010-09-19T15:20:00.000-07:00

Remission Depression

2010-09-06T17:12:00.000-07:00

Go and celebrate with a feast of rich foods and sweet drinks, and share gifts of food with people who have nothing prepared. This is a sacred day before our Lord. Don’t be dejected and sad, for the joy of the Lord is your strength!” Nehemiah 8:10

For the past week, I have had the blues, been down in the dumps, out of sorts, or not myself. You’ll notice that I carefully avoid the word “depressed,” choosing instead any euphemism for the condition that plagued my father for most of his life. Knowing the genetic component of clinical depression, I’ve always had the unfounded fear that I, too, will be sucked into that bottomless pit.

The deaths of several f.a.i.t.H. members, visitations, and funerals this summer have contributed to my malaise. But apart from that very legitimate reason, I have little to be depressed about. Nicole, the psychologist daughter, suggested that because Jim is doing so well I have resorted to worrying about inconsequential happenings which I ignored when I had the overwhelming worry of his cancer.

Sad but true. I need something to worry about. When I was occupied with cancer, everything else shrank in importance. I couldn’t worry about whether a grandchild got the teacher he wanted or the part in the play that she deserved. My focus was on only one thing—Jim’s recovery. I had no energy left for other worries. Cancer has a way of realigning priorities and sifting the significant from the trivial.

Holly McRae, a member of f.a.i.t.H, whose six-year-old daughter Kate is battling a brain tumor expresses this so well:

“Yesterday was one of the best days in quite some time. Surprisingly, as I watched Kate go into her classroom for her first day of kindergarten, I wasn't overwhelmed with tears. Simply excitement and gratitude. Gratefulness that she got the chance to experience a first day of kindergarten, meeting new friends and navigating through an elementary school. Yes, her first day was far different than I could have ever imagined years ago. It was different, and yet still so good.

Kate is currently being evaluated by the school district to see what therapies she would or would not qualify for. The irony never misses me. The one I thought be bored with school, as it came so easy for her is now being tested to see what she needs to help her get through it. As it is still a hard pill to swallow some days, I am reminded of what truly matters, those things that no one or no disease can steal. Only those things that will last, those things that have eternal significance. In a moment the things we spend our lives painstakingly chasing can be gone. Gone with one diagnosis, gone in a moment. I hope I won't always fear cancer, but I pray that it will always remind me of what lasts. That it will have given me perspective not many find. And a confidence of what truly matters.”

This realigning of priorities has happened more than once in my lifetime. In September of 2001, tennis consumed my waking hours. I played several times a week and when I didn’t play I talked about it—how to win matches, why I lost matches, reliving points, and planning rematches. When I won a match, I was elated; when I lost I was defeated. I played tennis, as I play most games, as if it was a matter of life and death—fully engaged, committed, and involved. I approached each match using the techniques of Inner Tennis talking to myself to control the nerves that if unbridled would interfere with my ability to execute.

Then came 9/11. My priorities shifted. The outcome of a tennis match took its appropriate place in the bigger scheme of world events. I was no longer hampered by nerves before a game. What did it really matter when the world was falling apart?

In November, 2002, Jim was diagnosed with lung cancer, and my world crumbled as surely as the World Trade Center had the year before.

When in the throes of a cancer battle, or any crisis for that matter, I think I will never again need an attitude adjustment—the yanking up by the chain that occurs when real problems come into our lives. In the midst of a trial, I think that henceforth I will give thanks for every “normal day,” never again needing the thrill of a big win, an article published in a prestigious periodical, a marketing effort come to fruition, a pat on the back, or any other of the ego-boosters that make my day. Just waking up, feeling well with no looming problems on the horizon is good enough. After living in cancer’s shadow one would think a sunny day reason enough for rejoicing.

But I’m human. And human beings are quick to forget the blessings we receive and just as quick to forget the Source from whom those blessings flow.

My prayer, like Holly’s, is that cancer will continue to remind me of what is truly important, that “it will have given me perspective not many find. And a confidence in what truly matters.”

In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith—of greater worth than gold, which perishes even though refined by fire—may be proved genuine and may result in praise, glory, and honor when Jesus Christ is revealed (1 Peter 1:6,7).

Book Review: What Every Christian Should Know About the Jewish People

2010-09-01T17:03:00.000-07:00

An Interview with Sheryl Young

1. As a Jewish person, how did you come to know Jesus as your Messiah?

My family lived in an all-Christian neighborhood because of my father’s job. I really believed all the stories in the Torah (Jewish version of Old Testament), but I also wanted to know more about the Jesus my friends spoke of.

When we moved away from there, I forgot my desire for many years. Then, my grandparents died, and our family fell away from practicing Judaism. After I got married, my husband (whose mother was a Christian) just up and went to church one day. About two weeks later, he came home and said he’d accepted Jesus. So I went along to church, to see what it was about.

All those feelings came rushing back. But I still thought, I’m a Jewish girl, how can I accept Jesus? Then, the church had a revival and a Jewish believer in Jesus came to give her testimony and sing Messianic Jewish songs! That night, I gave my life to Christ.

2. What was the driving force behind your writing this book for Christians – and not a book for Jewish people about Christ?

Since finding the Lord in 1987, so many Christians have asked me questions about the Jewish religion, Jesus’ Jewish upbringing, and why Jewish people find it hard to accept Jesus as the Messiah. Also, there have been recent times that churches have attempted to “evangelize the Jews” without learning about them first. I felt a strong calling to help Christians have more tools and knowledge for reaching out to the Jewish world community in friendship and love.

3. What are a few questions you answer in the book?
The book is subtitled “Improving the Church’s Relationship with God’s Original Chosen Nation,” so there are many topics included to give Christians a well-rounded way to relate to Jewish people. But here are the questions I’m asked most often:

-Is Judaism a religion, a nationality or a culture?
-Why did Hitler target Jewish people and those who helped them in the Holocaust?
-How can I, as a Christian, defend Israel’s existence?
-Do Jewish people really need to be “converted,” and must they leave all their Jewishness behind?

About the Author

Sheryl’s been freelance writing professionally since 1997. Her work has been seen in the Tampa Tribune, St. Pete Times and Florida Baptist Witness Newspapers; Light & Life, Today’s Christian Woman and Better Nutrition Magazines; “Chicken Soup for the Soul,” Vista Sunday School Curriculum, NewChristianVoices.com and most currently as Staff Writer for The Underground Online Christian Magazine.

How to get the Book:

 Find details about How to Order “What Every Christian Should Know about the Jewish People” at her Faith-Inspired Blog, http://20-20faithsight.blogspot.com. It is available (online only) at LifewayStores.com http://www.lifewaystores.com/lwstore/product.asp?isbn=141411074X&mscssid=AH2W347UGRPX9H0PAHFBFEVDFHSM0D9F, Amazon.com and most other bookselling websites, or Wine Press/Pleasant Word Publishing https://www.winepressbooks.com/product.asp?pid=1852&search=Sheryl+Young&select=Keywords&ss=1

School Days

2010-08-09T08:43:00.000-07:00

As my grandchildren prepare for a new school year, I remember my own school days and the excitement surrounding that first day.

In 1952 those of us starting first grade were truly novices. We didn’t have the advantage of pre-school, Mothers-day-out, or even kindergarten. If we knew our alphabet (and most of us did), it was because our parents taught us – not because they wanted us to get a head start, but because parents were expected to teach us the basics. There were no readiness tests or entrance exams because there were no private schools in our working class town. No one considered holding a child back until he was “ready.” If you turned six before 1953, you started first grade in September of 1952.

No one sent home a list of school supplies. We showed up on the first day with the requisite pencil box, milk money tied in the corner of a hanky, and a sack lunch. There was no dress code. The girls wore dresses; boys wore shorts or pants with shirts tucked in. Everyone wore anklets and some sort of practical oxford. We were neat and clean, faces shining, clothes ironed, and hair combed in honor of the special occasion – the first day of school.

Parents didn’t have anxiety about which teacher we would be assigned. The school only had two first grade teachers and our parents didn’t think they had a choice. My best friend and I were assigned to Miss Korb, a spinster who seemed ancient to me, but was probably no more than forty-five. She was of German descent; I think she may have studied under Hitler. She was mean as a snake and put up with absolutely no nonsense. One day I got a bloody nose in her class but sat at my wooden desk and bled all over my saddle shoes rather than incur her wrath. But Miss Korb got the job done. We all learned to read about Dick, Jane, and Spot.

My grandchildren pose for their “first day” pictures – taken with a digital camera rather than a Brownie. They are weighed down with their monogrammed back-packs filled with 150 dollars’ worth of required supplies. Tennis shoes have replaced the saddle oxfords; designer duds have replaced the pinafores. One thing remains unchanged – the excitement of the children as they enter the hallowed halls of learning.

Cancer and Anger

2010-07-28T18:29:00.000-07:00

People dealing with chronic illnesses (and cancer, thankfully, has become a chronic illness for many lucky ones) are often expected to put on a happy face to greet a world oblivious to their problems. Is it possible to maintain a civil attitude and pleasant outlook when you are living with daily pain?

It’s tough to play the “glad game” when your joints are aching, your neuropathy is in full force, or your head is throbbing with another migraine. If, in fact, Pollyanna were to suggest that you look on the bright side, you might want to land a punch in her ever-pleasant puss or mow her down with your motorized walker.

Most of us don’t fall short in putting on a happy face, rather we overdo it and put on a happy face too often. Everyone I know (my husband included) who is living with pain and fatigue, doesn’t complain enough!

Anger is a normal reaction to a situation in which we feel a lack of control. The problem arises when anger is expressed inappropriately or when it is not expressed at all. Anger suppressed becomes depression. “Doctors are just beginning to understand how dangerous internalized anger is. Repressing it, internalizing it, turning it back on ourselves, swallowing it, storing it within us, inhibiting it, burying it, ''eating it,'' "stuffing it," can have catastrophic results for our health.”

How then can we get rid of our pent-up anger and not alienate everyone around us? Here are a few suggestions—not shoulds-- which only add more guilt to the load you’re carrying.

1.Don’t keep your happy face on all day. It’s exhausting. Holding anger in, repressing feelings drains us of energy that we need to cope with everyday activities. Find a safe place to express your feelings without fear of judgment—a support group or a friend you can phone.

2.Set aside a reasonable amount of time each day to vent, complain, cry, or shout from the rooftop. When the time is over, pick yourself up by the bootstraps and move on.

3.If you’re having an especially bad day, indulge yourself without guilt. Stay in bed. Read a book. Sleep.

4.Remember that you have a right to your feelings and a need to express them. Don’t suffer in silence, but be prepared for some negative reactions if your family is used to your “stiff upper lip.”

5.Laugh. Bill Cosby said, “Through humor you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” 2 Whether laughter actually plays a role in healing has not been scientifically determined, but few deny its beneficial contribution to well-being. Norman Cousins, a writer, editor and humanitarian was diagnosed with ankylosing spondylitis, a painful and progressive disease of the connective tissue. “Nothing is less funny than being flat on your back with all the bones in your spine and joints hurting,” he wrote. Convinced of the benefits of laughter, he developed a program of humor therapy—surrounding himself with positive people and a diet of funny movies. “It worked,” he said, “I made the joyous discovery that ten minutes of genuine belly laughter had an anesthetic effect and would give me at least two hours of pain-free sleep.”

6.Try Laughter Yoga. This doesn’t mean that you try yoga and the class laughs. Laughter Yoga is a variation of yoga introduced by a physician in India that is now practiced in fifty-three countries. Laughter gives the participants a sense of control over their disease. If your community doesn’t offer this program, try Pilates or regular yoga. Both are stress-relieving and body strengthening.

7.Take control of your thoughts. There are many things beyond your control—your mind is not one of them. In Philippians 4:8 Paul tells us, “Whatever is true, whatever is pure, whatever is lively, whatever is admirable—if anything is excellent or praiseworthy—think about such things.” If this weren’t possible, God wouldn’t expect us do to it. But He made us with the ability to control our thoughts and direct our minds even when we can’t control our bodies. As irritating as Pollyanna might have been, she was onto something.

Once you have given vent your feelings, indulged in some laughter, and focused on the positive, you might find it easier to meet the unrealistic expectations of friends and relatives. If my suggestions don’t work, I recommend knocking Pollyanna to her knobby knees. It may not be an appropriate expression of anger but I guarantee it will be satisfying.

An Oasis on the Cancer Journey

2010-07-19T19:40:00.000-07:00

“Thou wilt keep him in perfect peace whose mind is stayed on thee: because he trusteth in thee” (Isaiah 26:3).

Jim and I are at a place I never expected to be—an oasis in the midst of a long and arduous cancer journey. To quote Jim, “I never thought I would hear the words, ‘cancer free’ in my lifetime."

For the first time in eight years, the giant who has been living in our attic shows no signs of awakening. I’m not sure he’s dead, but he seems to be in a deep coma—hopefully fatal. Of course, we have daily reminders of the damage he has done. Neuropathy, osteo-necrosis, daily injections of Lovenox, Melatonin and Metformin pills—still a small price to pay for extermination of the beast.

While we are enjoying the respite, I have not forgotten what it is like to live in the giant’s presence. Updates from the McRaes and others, remind me how difficult it is to watch, wait, and wonder whether the cancer is gone, or still at work beneath the surface, creating a maelstrom of destruction. The sheer normalcy of days between scans is bittersweet, because we don’t know how many normal days are left.

Is it ever over for those of us who have learned that cancer is a sneaky foe, striking where and when it pleases? Those who have learned that our prayers aren’t always answered the way we would like? We who have observed firsthand how unfair cancer can be? We have seen suffering up close and personal and aren’t eager to sign up for another go-round.

One of the benefits of facing the death of a loved one is learning to appreciate each day for its previously overlooked blessings. And yet, when the specter of death hangs over us, when fear of recurrence surrounds us, the blessings are difficult to see. No matter how great the resolve to live in the moment, I have yet to find someone who can keep the resolution. Fear creeps in, robbing us of what joy we might have.

My advice to those in the throes of a cancer battle: Keep focused on the positive. Denial is sometimes a necessary and useful coping mechanism. Follow Paul’s advice to the Philippians. In the first part of Chapter 4, Paul tells us how to achieve “the peace that passes understanding.” We are to be thankful for all things and take our requests to God. Verse 8, perhaps less quoted, elaborates on how to achieve this peace that is beyond human comprehension—peace in the face of overwhelming fear, like a cancer recurrence.

We must come to God with grateful hearts, lay our requests before him, AND keep our minds on that which is “excellent and praiseworthy.” When Satan pummels us with fearful thoughts and plants seeds of doubt and fear in our minds, we can counter attack by focusing on “whatever is true, whatever is noble, whatever is right, whatever is lovely, whatever is admirable.”
When I was overcome with fear about upcoming tests, I asked myself, “What is true? What do I know?”

I don’t know that the cancer is back; I don’t know that the cancer will kill Jim; I don’t know what tomorrow will bring.

But I do know: God wants the best for me. He has always proved faithful. He is a mighty God, more powerful than any disease. Nothing can separate me from His love.

Remember that our tomorrows have already passed through God’s hands. He waits there for us ready to carry us when we cannot walk. “Earth has no sorrow that heaven cannot heal.”

Scanxiety Revisited

2010-06-20T16:21:00.000-07:00

I have lost count of the times we have made this trip to Houston over the past eight years. Thirty, maybe? I'm not complaining. in fact, I'm grateful that Jim is alive and able to get here. We have hit every season and most holidays. While it is not a "home away from home," we have established a comfortable routine some of which is enjoyable.

Today we braved the heat and walked to Rice Village for a late lunch and dessert at Ruggles. We topped the afternoon off with 90 minute foray in the second hand book store. The eight books we bought served as hand weights for the trip back to the hotel. If I were trapped alone in a n elevator (one of my fears)I could survive if I had just come from the bookstore. I could probably even endure solitary confinement in enemy territory (another fear) if my captors threw in a book every day or so. I'd prefer something other than political propaganda, but if that's all they offer, I hope it's well written.

I've already finished one of the books, Very Nice Ways to Say very Bad Things: An Unusual Book of Euphemisms. The thesaurus for every writer who has struggled with the right words for a delicate subject. Funny, but I doubt I'll use any of the bawdy alternatives in my upcoming articles.

Also bought: Game Change (an inside look at the 2008 presidential campaigns), Every last One by Anna Quindlen, Somewhere Inside by Laura and Lisa Ling, Backseat Saints by Joshilyn Jackson, and a few books on writing. I hope they are engaging enough to distract me from the real purpose of the trip.

Those of you who read my book will understand when I say that I am holding at Code Yellow.I'd like to think that I've made progress in handling the pre-scan anxiety. More likely I'm in denial--which is exactly where I'd like to stay. Thank you very much. I'm quite comfortable here with my head in the sand. My rational mind is telling me that the cancer has not had time to outsmart the last round of drugs,so we're safe for a while.

I hope the anxiety level will hold through Tuesday when we get results. Unfortunately fear is like grief. We never know when it will overtake us. I just have to keep my mind on what I do know: God is in control and God is good.

Ten things Not to Say to a Caregiver

2010-06-10T19:38:00.000-07:00

1. "God never gives you more than you can handle."
If you say this to a caregiver, you are implying she/he should be able to cope with whatever comes his way. God frequently gives us more than we can handle so that we learn to depend on Him.

2. "My dad (mom,friend, uncle) died from this kind of cancer."
Not what the loved one of a cancer patient wants to hear. Don't even mention death to someone in the midst of cancer battle.

3. "Did he smoke?"
Why do you need to know? Will it make you feel better if the patient got his "just desserts." No one deserves lung cancer--or any other kind. Maybe you're hoping to find a cause that exempts you from contracting the disease. Give up. No one is exempt.

4. "How long did they give him?" or "What's the prognosis?

Again, none of your business. Besides no one knows the answer.

5. "You should try alternative medicine. Chemo is a killer."
Trust me. Better minds than yours are developing treatment strategies. Pumpkin seeds might have helped your yeast infection, but cancer requires big guns.

6. "You should go to ________ for treatment."
Don't use the word "should" with a caregiver. If you have personal, positive experience with a reputable physician or treatment center you might pass on names.

7. "God will heal you--if you have enough faith."
Say nothing to add to the already heavy burden of the caregiver. This philosophy implies that the outcome of the cancer is directly proportional to the faith of the patient or his loved ones. Bull feathers!

8. "Everything will be all right."
Are you omniscient? Do you have ESP? A crystal ball? Then don't make predictions. Early in the cancer journey, the only "all right" I could have accepted was complete--and fast--healing.

9. "I know just how you feel."
I doubt it.

10."You just have to have faith."
Where might I get some?

Living on the Edge--Part 2

2010-05-26T17:51:00.000-07:00

Life after middle age can be an exciting adventure.
1. Explore your God-given passions. Pour yourself into life with abandon. Sarah Young in one of her devotionals says, “Out on a limb with me [Jesus] is the safest place to be.” Step out on that limb if He is leading you there.
2. Dare to be uncomfortable. Start small. Brushing your teeth with your non-dominant hand opens new pathways in the brain—so I’ve read. Sit in a different spot in church. You won’t die. Ask someone you’d like to know better to lunch. Open yourself to criticism.
3. Try something new. Join a book club. Join the choir. Audition for a play. Put yourself out there. Expand your territory. No one ever died from embarrassment.
4. Explore a hobby. Life is full of so many possibilities. A sport? Scrapbooking? Antiquing? Blogging? Hate sports? Buy a WII.

Don’t let life pass you by while you sit on the sidelines paralyzed by fear of failure.
Take a risk. Buy green bananas.

Living on the Edge

2010-05-14T19:22:00.000-07:00

"Ah, but a man's reach should exceed his grasp -- or what's a heaven for?" Robert Browning.

I am not a particularly adventurous person. I have never wanted to travel to exotic places, eat unfamiliar foods, climb glaciers, or jump out of airplanes. I am not a thrill seeker. I don’t skate on thin ice, ride on bald tires, or swim in the ocean at sunset. I don’t invite catastrophe. Although I respond well in a crisis, I wouldn’t go out of my way to create one.

My idea of living on the edge is eating raw cookie dough (I knew the appeal before Ben and Jerry), riding in the parking lot without a seat belt, or taking cough medicine beyond its expiration date. And once I belonged to a glue sniffing club.

Let me explain that last one. As an only child I had a variety of rather strange pastimes one of which was putting together model airplanes and boats. I had a best friend who was equally imaginative and definitely more adventurous than I. We had no idea in 1956 of the dangers of glue vapors. Sniffing anything--except maybe Vicks Vapor Rub—was a completely foreign idea. We just knew that we liked the smell of model airplane glue. So we formed a club. (We had exclusive clubs for everything in those days.). On rainy afternoons when we were tired of comic books, we would go into her grandfather’s radio room and squeeze small puddles of the stuff onto paper and inhale the fumes. Neither of us suffered any brain damage—well, sometimes I wonder about her.

If we had been warned about the dangers of glue sniffing, I assure you I wouldn’t have sniffed. I’m rule governed—a natural born referee, playing by the rules and expecting everyone else to do the same. My daughter cringes when we line up for a sale at Tuesday Morning, knowing that if someone dares to cut in line, I will glare at them, daring them to make eye contact, so that I can direct them politely, but firmly, to the end of the line.

My mother always said “Let a word to the wise be sufficient.” And I pretty much heeded those words, not wanting to learn anything the hard way. My only rebellion consisted of keeping library books beyond their due date, swimming in the gravel pits when my mother strictly forbade it (I never dove just jumped), and parking on lover’s lane with my boy friend. I figured I could handle the danger in the car, and was willing to risk the dangers outside the car.

I do sound boring, but before you mark me off your list of people you would like to know better, I’d like to say that though I am prudent, I am courageous when called to be. Courage is not lack of fear but acting in spite of fear. Think of all that you failed to accomplish because you were afraid. Winston Churchill said, “Success is not final, failure is not fatal: it is the courage to continue that counts.”

I like to think of myself as a calculated risk taker, willing to step out in faith and risk ridicule, failure, or disappointment to accomplish a worthwhile goal. This behavior gets more difficult as we grow older and more set in our ways. Too often we get in ruts that inhibit our growth and self actualization.

When Jim was diagnosed with cancer we evaluated our lives and decided what was important. What things did we love to do? What did we hate doing? Could we eliminate some of those things that caused us stress and unhappiness to make time for new endeavors? When faced with a terminal illness, you realize how short life is--too short to let fear prevent you from pursuing your dreams.

In my next blog entry, I will tell you how to get out of your rut and make positive changes in your life.

Lucky Duckies

2010-04-24T11:46:00.000-07:00

Memphis is famous for its barbecue, Elvis Presley, Beale Street, and—duck hunting. Each May, pork connoisseurs travel from far and wide for the barbecue contest; in February the Elvis fans gather from all corners of the globe to pay homage to the king of rock and roll; and in Autumn scores of men and boys in trucks and camouflage descend on the city for the activity that is as much a part of Southern heritage as football and grits.

As a transplanted Yankee, I’ve embraced most things Southern, but no one has been able to convince me that shooting helpless animals is a sport. I’ve heard all of the arguments in favor of the gruesome pastime, but I remain unconvinced.

As a bird lover, the only way I’ve been able to help is to provide a little respite for the ducks passing by en route to their natural habitats. I stop short of hanging out a shingle, but birds know that our yard—though not a five-star operation—provides fine dining, a heated pool, and protection from gun-toting rednecks.

Each year we have a pair of mallards who drop in for an extended stay. I don’t know whether they are the same birds or a different couple that has come upon the recommendation of the first. Apparently word travels fast in the duck community. Because ducks are monogamous (at least for a season), I like to think the pair books the honeymoon suite each year for their anniversary.

I am a bird watcher so having these guests in my backyard provides a close-up look. I love to watch their little webbed feet paddling under the water propelling them all around the pool like the wind-up toy my children used in the bathtub. In a murky pond, when you can’t see the source of their propulsion, it looks as if they are gliding on ice.

On the pool deck I scatter grain and bread crumbs to keep them fat and sassy. But my husband, Jim, the resident curmudgeon and pool-man, complains about the mess they leave. Unfortunately, they can’t read the sign meant for our human guests: “I don’t swim in your potty. Don’t potty in my pool.”

Recently we witnessed a blessed event. On a summer Sunday afternoon, we came home from church to find the momma Mallard and her brood of seven, happily paddling in the pool. In spring and early summer, to avoid human predators, ducks sometimes nest well away from the water. Probably the female laid her eggs nearby and brought the baby quackers to our “cement pond” for their first swimming lesson. The daddy duck was nowhere to be seen. Like many human fathers, the male takes no responsibility in caring for the offspring. He was probably out with his pals on the golf course.

When we approached, the momma duck swam vigorously to the opposite side, followed dutifully by her young family. But when she jumped out of the pool, the little ones flapped their wings to no avail. They were trapped. Getting into the pool was easy but getting out presented an unanticipated problem. Unlike the ponds she usually frequented, this one had no means of escape. The eight-inch jump from the water’s edge to the concrete was easy for Momma but impossible for her babies.

We had to come to the rescue. The ducks couldn’t stay there until they grew big enough to make the jump. “Grab a kickboard,” I called to my husband, but the kickboard had to be held by human hands and the wary mother wasn’t coming close. “How about a rubber raft?” Same problem. Jim went into the garage and brought out a large piece of plywood making a handicapped ramp for the brood. We chased the mother toward the board, but at the last minute she veered to the right or left and hopped out the side. Obviously, she didn’t understand our escape plan.

Finally, amidst much squawking and trauma, Jim chased the mother duck out of the pool and swept the babies up into the leaf basket. The distraught mother must have thought the ducklings were to be the main course for our Sunday dinner. They tumbled out onto the ground and waddled away, under the wooden fence, back to their nearby nest.

Maybe next year, I should direct the Mallards toward the historic Peabody Hotel where the accommodations far surpass ours. At the Peabody, ducks receive the treatment they deserve. They have their own duck master who literally rolls out the red carpet for the feathered celebrities as they waddle from the elevator to the marble fountain where they swim all day in climate-controlled comfort. The lucky ducks enjoy the same amenities as the hotel patrons—excepting alcoholic beverages. At night they retire to their sleeping quarters on the roof with a view of the city. They rest safe and secure because the only shots being taken are by the scores of photo-snapping tourists.

When cancer returns

2010-04-16T17:01:00.000-07:00

When I was finishing "Cancer Journey: A Caregiver's View from the Passenger Seat," we just found out that Jim's lung cancer had metastasized for the first time. In one of my preliminary drafts, I wrote that a recurrence is not as difficult as the initial diagnosis. Lynne Eib, one of my endorsers, suggested that I might want to qualify that statement, because many people find a recurrence or metastasis much harder to handle.

This weekend at a conference in Chicago, I was talking with a man whose prostate cancer had come back, eleven years after surgery and treatment. He was devastated. For five years he believed he was cured, only to learn the cancer had returned.

What a blow it must be to have cancer reappear--like a soap opera character who, after a thorough search, is given up for dead, eulogized, and laid to rest, only to show up years later, resurrected, causing havoc in Pine Valley.

In 2008, when Jim had his first recurrence, I had been looking over my shoulder for five years waiting for cancer to come back. Therefore, as I said in my book, the recurrence was not so shocking. Even in 2009, when the cancer metastasized to the bone, I was not caught completely off guard.

But, I must admit, if it rears its ugly head again, I will be crushed.

The solution? Do I protect myself by refusing to accept the miraculous remission that we are enjoying? Must I continue to look over my shoulder to keep from being blindsided if the cancer returns?

I would rather not. I have made a conscious decision to adopt the philosophy of the cockeyed optimist, claiming and believing that Jim has been healed--even if that means making myself more vulnerable if I'm wrong.

I'll let you know how it goes.

The Good Old Days

2010-04-06T13:43:00.000-07:00

When we were sorting out the contents of my mother’s home, my eight- year- old grandson pointed to a small mahogany chair with a needlepoint seat cover and asked, “Gigi, why does that chair have a desk on the side instead of the front?” I realized that the “telephone chair” was as foreign to him as the black dial telephone it was designed to accompany.

“Time was,” I explained, “when we were bound to the six foot area near the wall where the phone jack was placed. We couldn’t multi task while on the phone. No cooking, driving, or throwing in a load of clothes.”
The phone chair was most often located in the living room where you were tethered to the telephone chair for as long as the conversation transpired. For teenagers, this could be a lengthy time, particularly if you had a boy friend who attended a different school.

The phone chair had a desk on one side with a shelf for phone books. We didn’t have numbers on speed dial, so after we dialed them daily over a period of years, they became forever imbedded in that computer prototype--the human brain. To this day, I can still repeat the seven digit numbers of my best friends. (We didn’t have area codes.) We never called our next door neighbors. Why call when we could open the door, walk out on the front or back porch and speak directly to them?

The little desk held not only the phone but the phone dialer, a plastic stick with a ball at the end that fit neatly into the dialing holes on the phone. These were a necessity for women who wanted to preserve their manicures (home manicures. I never knew anyone who had their nails done at a salon.) Usually there was a message holder—the fifties version of the answering machine—in our case a small wooden block, a wooden rod, and a clothespin attached, to hold important messages. Mine was a craft project from Girl Scouts, painted white with a pink plastic flower glued to the base—one of my more useful creations.

In the early fifties, we had a party phone. Unfortunately, we didn’t make the invitations to the party. Most often the other members on the line were eavesdroppers and phone hogs (according to my parents) who didn’t take the hint when you picked up the phone several times during their seemingly interminable conversations.

Every night like clockwork, we had calls from certain individuals—Aunt Ann, Uncle Bill, my mom’s best friend. They were taken right in the living room where everyone could hear at least one end of the conversation, unless it was drowned out by Bonanza or Dragnet. There was no such thing as a private call until I had a phone in my bedroom, which wasn’t until I was well into my teens. Even then you ran the risk of someone picking up the extension.

We didn’t have call waiting or beeps to indicate another incoming call. If a love struck teenager monopolized the family phone, the caller would get a busy signal—very annoying and apt to be reported to the adults in the family who, when the line was finally clear, were greeted with, “Who have you been talking to? I’ve been trying to call for an hour.”
If the phone rang during dinner, Dad would jump up from the table and run into the living room. There were no telemarketers. No one called during dinner unless it was an emergency because all of our friends and family knew that we ate precisely at five p.m., every night of the world and dinner was not to be interrupted.

A long distance call was a rarity, even in families where money wasn’t a major concern. When I drove back and forth to college in the early sixties, we had a system to let my parents know I had arrived safely—without incurring the extravagance of a long distance charge. The routine went like this:
I dialed zero.
Operator: “Can I help you?”
Me: “Yes I’d like to place a collect call to Madison IL.”
“What # are you calling?”
“876-7771”
“Your name?”
“Cyndi Zahm”
Ring Ring. Dad would pick up.
Operator: “You have a collect call from a Cindy Zahm. Will you accept the charges?”
Dad: “No, I’m just a workman. The family is out right now. (He didn’t want the operator to know he was a tightwad intent on beating the system.)

There is no longer a need for telephone chairs. Seldom do we sit to take a phone call. We can reach out and touch someone from the tub, the table, the traffic, and, alas, the toilet. Unfortunately, it works two ways. There is no escape.

BEAT fatigue

2010-03-31T15:48:00.000-07:00

Fatigue might be the most common complaint among those with a serious illness. The fatigue resulting from chemotherapy and radiation is not the kind that can be alleviated by a good night's sleep. I wish I had a magic potion or pill that would pep you up and allow you to enjoy daily activities. While waiting for that invention you might try my suggestions to BEAT fatigue.
1. Breathe-- Deep cleansing breaths are invigorating. If you are able, try yoga or pilates--even if you are unable to do all of the movements you can do the deep breathing.
2. Eat some protein. The carbohydrates you crave will give you a temporary high
followed by a crash, but protein gives you sustained energy
3. Ask for help. When you don’t have the energy to get out with people, pick up the phone, call a friend, and ask for prayer.
4. Take Ten. Sit on your porch in the sunshine for ten minutes or better yet walk around your house, cove, or down the block. This provides a double whammy—fresh air and Vitamin D.

Share your Burden

2010-03-27T15:20:00.000-07:00

I must admit that I am having difficulty blogging about cancer. It seems to me that I have said everything there is to say and that you all must be as sick of hearing about cancer as I am of talking about it.
Yet I realize that with the book sales and media publicity, we are reaching a different audience--people who are newly diagnosed and looking to us for encouragement and direction. They are in the middle of a raging sea and I want to help them stay afloat.
Therefore,I will try to blog more regularly even if the subject isn't cancer related.

Today's advice for the those starting out on the journey--join a support group. If your loved one is too ill to attend, go alone. Sharing your burden will lighten your load. I love Matthew 11:28,30. "Come to me all you who are weary and burdened and I will give you rest. For my yoke is easy and my burden is light." But sometimes it helps to talk to "someone with skin" as my three-year-old grandson once said. Paradoxically, the times when you feel least like reaching out are the times you most need to.

I know there aren't many faith based support groups [www.faithsupportgroup.com] but most major cancer centers offer support of some kind. Contact me and I might be able to make some suggestions.

2010-03-17T15:05:00.001-07:00

Cancer's Shadow Lifted

2010-03-05T15:46:00.000-08:00

In 2002, two small words changed our lives. "It's cancer." In 2010, two small words changed our lives again. "cancer free"

I didn't realize how accustomed I had become to living under cancer's shadow, until the cloud lifted and the light returned. For seven years, we didn't plan anything without considering Jim's health status. We couldn't make short range plans because we weren't sure how he might feel. We couldn't make long range plans because we weren't sure he'd be alive.

Now that he is no longer in treatment we aren't bound to the chemo schedule or tethered to the infusion pump. We are back among the living!

And yet, some things remain the same. Thankfully. The cancer school room taught me that none of us--however healthy we might be--can know what the future holds. Life is short, health is fleeting, and this morning's sunrise might be our last.

Cancer may not be finished with us, but for today, it is gone. And that's enough. THIS is the day the Lord has made; let us rejoice and be glad in it.

A Divine Appointment

2010-02-13T17:18:00.000-08:00

We were in the shuttle on the way to our appointment with the oncologist. Because we had to wait ten minutes for the hotel shuttle to arrive we were barely going to make it on time. Another couple flagged down the car as we were about to pull away.
“Oh-oh,” I thought. “We are never going to make it.”
“Do you mind getting in the far back?” the driver asked, as Jim got out to offer the lady the middle seat. The man climbed in back with Jim. “We’re going to the pulmonary pavilion at MD Anderson,” the woman said to the driver, as she climbed in next to me.
“Are you going for treatment?” I asked after introducing myself. “This is our first time here,” she explained. “I was diagnosed with lung cancer in December.”
“My husband has lung cancer,” I told her. “We’ve been coming to Houston now for seven years. I know how scary it can be at first, but it gets better.”
She started to cry. “Six weeks before the doctors told me about the lung cancer, my husband was diagnosed with Lou Gehrig Disease. Then the lung cancer. The doctor said it is in both lungs and inoperable. That is why we came here for a second opinion.”
Talk about a double whammy. Two terminal diagnoses within two months. We told them about Jim’s grim prognosis and the miracles we had experienced. They gave us their e-mail and we added them to our f.a.i.t.H. list.
I well remember those first days when we prayed to meet someone who would lift our spirits, listen to our story, or just give us a loving pat on the shoulder. Someone who could say, “You are going to be OK. You’re not alone.”
We watched as they walked into the building, holding hands, hopeful that MD Anderson could give them at least one miracle.

A Modern Miracle

2010-02-02T19:32:00.000-08:00

I don’t know what to say. After seven years of ups and downs, seven years of living with cancer and all that goes with it, Jim is cancer free. The giant has left the house.

In October the oncologist told us there was no sign of the cancer in the bone or the malignant pleural effusion that we have been treating since March of ’09. He called it a miracle saying that there was no medical explanation for the absence of the malignancies. But somehow I couldn’t grasp the magnificence of the news. This time it was different. I got it. I want to shout the good news from the rooftops and sing praises to His glory.

Dr. Rios is not quite sure where we will go from here. He has a “gut feeling” that what Jim needs now is rest and a rebuilding of his immune system. There are some new drugs designed for this very purpose that he wants to research. Jim’s body has taken a beating over the years from the aggressive, toxic chemotherapies, the radiotherapies, and the surgeries. He wants us to undergo some testing (can be done in Memphis) to determine the status of the immune system, assess the collateral damage that has been done, and build from there. He will let us know in a few weeks how to proceed. But NO MORE CHEMO, no more planning around treatments and scans—although I’m sure scans will still be part of our lives, I’m not worrying about it tonight.

There is more to the incredible story—people we met today and yesterday just starting down the road we’ve been traveling, the responses of our physicians, people who have read the book and been encouraged. I will have to write another book for those who don’t know how the story ends. Our cup is overflowing and I can’t wait to tell anyone who will listen about the faithful, loving God we serve.

“Now unto him that is able to do exceedingly abundantly above all we ask or think, according to the power that worketh in us,
Unto him be glory in the church by Christ Jesus through all ages, world without end. Amen.”

update on Jim

2010-01-14T17:01:00.000-08:00

Just as well I didn't contact everyone sooner because the prayer requests have changed day by day for the past week. As you know Jim had chemo last Thursday. He also had an appointment with his oncologist at West Clinic the same day. Jim was concerned about a new development--a swelling and pain in his neck actually under the jaw. He has suffered with mouth sores since early summer resulting from one or another of the chemo drugs, but this was different. The Dr. told him that it was not a lymph node, which relieved us somewhat because that is always a fear. However the pain continued.

The chemo side-effects were as bad or maybe the worst yet. Certainly the duration was longer. He was in bed from Friday until Tuesday morning. On Tuesday, we made an appointment with our internist to see about the pain in the jaw area. Dr. Castellaw was quite concerned because the bone in the mouth was visible in 2 places. He then sent us to an ENT to determine whether this should be biopsied. In other words, he wanted to be sure it wasn't a metastasis or a new primary cancer.

The ENT said no biopsy necessary, once again relieving our minds, but not much help with the pain. She said the lump in the neck was a salivary gland, gave him a decadron shot which temporarily helped with inflammation, and made the pain more tolerable.

As the shot wore off the pain increased. Today he made an appointment with our trusted prosthodontist who recognized the severity of the problem and sent him immediately to the oral surgeon. By this time Jim was frustrated, frightened and in excruciating pain.

The oral surgeon confirmed that this is osteonecrosis (dead bone essentially) resulting from the Zometa Jim has taken monthly to treat the bone metastasis of the lung cancer. Osteonecrosis is very difficult to treat and there are several options but for us right now the most important consideration is treating the infection which is causing the pain.

Pray for:
1. relief from the pain (he is taking oxycodone).
2. healing from the infection (Augmentin)
3. that he will be able to eat soon
4. that he won't have to be under the care of an infectious disease specialist, hospitalized for IV antibiotics

We are grateful that the x-rays show the damage to in both areas of the jaw is less than expected, although if I understand it correctly, the Zometa has a long half-life ( stays in the system for years), continuing to do its good work and its bad. We are also thankful that his teeth aren't loose yet.

This is a very serious infection, doubly hard to treat because of the other chemotherapy drugs he is taking and his resulting compromised immune system. We will address the other problems later.

Under His wing,

cyndi

MRI experience

2010-01-09T13:36:00.000-08:00

MRI
Several months ago when I resolved to open myself to new experiences, I wasn’t thinking of an MRI. When the doctor told me in December that I would need an MRI to determine the extent of injury to my shoulder, I decided to put it off until the New Year.

I have never had an MRI, but I thought I knew what to expect after talking to friends who lived through the procedure. I wasn’t really afraid. I mean if it wasn’t painful I surely could handle it. I’m pretty stoic when it comes to medical procedures. I had a baby during the natural childbirth era sans epidural. I suffered through a colonoscopy in 1978 with no anesthetic. I could surely handle an MRI that involved no pain or discomfort.

The person who called to set up the insurance payment and confirm the time and place asked if I was claustrophobic. “No, no,” I assured her--and myself. I pride myself on having no irrational fears or phobias. Perfect mental health here. Although, I read a true story once about a girl buried alive (ultimately rescued) but the image was seared in my mind and remains my number one least favorite way to die.

I arrived at the office where I had been many times before with my mother and with Jim. Familiar surroundings. Filled out the papers. All no’s. Good so far. The questions most repeated: “Are you claustrophobic?” and “Do you have any foreign material in your body.?” No, no and no.

The technician gets me settled on the comfortable table, gets me the blanket I request. I am ready for a 20 minute nap—toasty and warm—no pain, not even any discomfort.
“Have you ever had an MRI?” she asks handing me earplugs.

I’ve worn ear plugs on numerous occasions, being a former swimmer. But these earplugs were inefficient, not ergonomically designed to fit the human ear canal—at least not mine. I inserted them, head cocked, attempting to create a seal against the noise I had been told to expect. The technician stood patiently beside me while I twisted and turned in vain.

“These aren’t going to work,” I said.”Maybe some cotton?” I really thought a Kleenex wetted with spit and twisted into a funnel shape would be better, but I didn’t want her to think me odd. The cotton didn’t work so I tried the earplugs again and shoved them in the best I could.

“O.K.,” she said. “Here we go.”

The machine was making some noise already—a rhythmic sound not entirely unpleasant which I assumed (correctly) would be louder once I was entombed. Tolerable-I thought.
“Do you want the fan off or on?” the disembodied voice comes from afar.
Oh.Oh. Tough decision. Will I suffocate if it’s off? Or is off preferable to the cool breeze I feel blowing around my face.
“Off,” I answer trying not to think of the buried-alive-girl.
Fan off. Blanket on. Deep breathing. Ready for my nap.
An alarm sounds. Not just an alarm—a fog horn, signaling what? A Malfunction of the machine? A fire in the building? A nuclear emergency?

“Be calm,” I tell myself. “It will stop or someone will come to get you out.” Neither happens.

I wave my hand. “Hello? Is this supposed to be happening? What’s going on?”

The voice again--removed and distant.
“Yes, that’s the sound you’re going to hear.”
No way. “Can I come out for a minute?”

She slides me out or rather the machine spits me out. “I had no idea the sound was going to be that loud and noxious.I think I’ll try ear phones with music.”

“Sorry, we don’t have those here. Do you want to try again? Well have to start over.”

I know what to expect now. Surely I can do this. I am not claustrophobic, I repeat I am not claustrophobic.

The sounds start anew. I am relaxed, going with the flow. Pray, I think. The fog horn stops. Ten second respite. I am assaulted by an army of angry woodpeckers. “Rat-a-tat-tat, Rat-a-tat-tat.”

I forget about praying. I remember that I am easily distracted by noises. Some kind of mental deficiency allowing me to focus on only one thing at a time. I wore earplugs during most of my dormitory years. Having grown up in a very quiet home as an only child I was a light sleeper easily awakened by any noise. A noisy furnace. A dripping faucet. Cicadas on a summer night. I can’t listen to music when I study or TV when I write. Sensory overload. Why did I think I would be able to nap in this thing when I can’t sleep in a room with ticking clock?

The woodpeckers stop. The basketball buzzer starts. Wait there are undertones—sounds like Froggy twanging his magic twanger. Wonder if I have some other kind of phobia, something they should list on the questionare? Maybe I have acousticophobia? No I’m not really afraid of the noises—I just don’t like them.

Peace. Temporarily.

New sound. A single propeller plane preparing for take-off. Distant machine guns accompanied by a tuning fork—yep an A natural. No, I’m sure it’s a B flat. Wonder if I have perfect pitch? No one’s ever noticed, but I’m sure that’s a B flat. What’s that tapping in my ear? Sound like it’s inside not out. Did I forget about some lingering piece of metal imbedded somewhere in my body about to be pulled through the skin by the powerful magnetic field? Maybe mercury fillings or gold caps? I have a lot of them.

Can’t someone improve this machine so that it does its work in silence? I’d like to know the mechanics that cause the sound in magnetic resonance imaging. Resonance. Sound waves. That’s it. Sound waves are bouncing off something giving them a picture of my insides.

The voice comes again. “Almost through. We need to repeat one test. It will only take about four minutes.”

Hope it’s the tuning fork. Not the basketball buzzer.

Snow Days

2010-01-04T15:23:00.000-08:00

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 was absorbing a new attitude about weather forecasts.
After the first actual snowfall, I understood the southerner’s 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, Jim cleared our driveway. The next morning when the packed snow had turned to ice, Jim 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. The road crews weren’t prepared to clear the side roads, so driving was treacherous. The road 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. So 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.

Falling Down on the Job

2009-12-30T15:54:00.000-08:00

I have been so wrapped up in my own activities that I have neglected the most important job I have--taking care of my husband. Seven years ago, when I jumped, or more accurately--fell--into that role, I approached it with a vengeance--monitoring, mothering, motivating, and micro-managing every aspect of his care and treatment. Not a morsel of food or medicine entered his mouth that was not researched and ratified by his vigilant sentinel. Like Mighty Manfred, Tom Terrific's ever faithful companion, I never left his side.

But as the years moved on, I resumed some of my normal activities and gradually began to shirk some of my responsibilities. This year I missed some of his chemo treatments (it's so blasted cold in there and they don't have wireless connection) and even missed a few doctor appointments. Ironically, as I became more absorbed in writing about the caregiving experience, I became less involved in the experience I was writing about. Then there was my return to the stage which took me away every night during dinner, leaving him to fend for himself. In my defense, he happily accepted my absence and enjoyed a month long diet of TCBY, Sonic Blasts, and DQ Blizzards. He even learned to give himself his daily injections because I was gone in the evening.

For four months, maybe longer, he has suffered from mouth sores and pain--common side effects of treatment. He asked each of his doctors and his dentist for solutions, but nothing helped. The problem has become increasingly severe. For six weeks he has complained about tooth and jaw pain severe enough to interfere with eating and to make him generally miserable.

Last week it occurred to me that maybe the culprit was Zometa the drug commonly given for bone mets. I reasoned that if Boniva and some of the osteoporosis drugs can cause damage to the jaw, Zometa might work in the same way, resulting in similar damage to the jaw. I even went so far as to suggest he might want to skip his next infusion of Zometa. BUT, I didn't take time to look it up because I was too busy with Christmas preparations.

Today, holiday over, company gone home, and me back at the computer, I checked the side-effects of Zometa. "Some Zometa side effects are potentially serious and should be reported to healthcare provider immediately, such as jaw or tooth problems!

Great. Had I done this weeks ago, I might have spared him needless suffering. I am so angry with myself. I don't know whether the damage can be rectified, but I am returning to my former watch-dog post. Jim may not like it but Brunhilde the nurse is back.

Cancer's Rocky Road

2009-12-10T13:28:00.000-08:00

on Sunday morning Jim spoke with his oncologist who told him that the treatments will continue indefinitely. This news wasn't such a surprise to me (the realist) but it was a blow to Jim (the optimist).

Jim had sent an email several days earlier asking for the plan,explaining how difficult the recovery is becoming and hoping that next Monday's chemo would be his last. In fact, I had him temper his remarks slightly because he was adamant that he couldn't take it much longer.

Dr. Rios said that he will need 2 more sessions of the regimen he is on now prior to our Houston trip Feb 1 for scans. THEN it is POSSIBLE that the length of time between chemos will be increased BUT a modified form of the treatment (maintenance) will continue indefinitely.

We are grateful that the drugs have kept the cancer at bay and that he has responded to treatment but after being declared cancer free (with all that implies) further treatment is a bitter pill to swallow (literally).

Living with cancer is better than the alternative but believe me it is not easy. I have spoken with several group members in the past 2 weeks who are similarly discouraged at the prospect of the relentless side-effects that accompany the very treatments which are keeping them alive. Pray for encouragement for all of those traveling this path, and for patience and understanding for their caregivers.

As I pray for those who lost loved ones to cancer last December and those who have lost someone this year, I am so thankful to have Jim here still--even though we have to plan our celebrations around chemo.

Discouragement

2009-11-20T13:46:00.000-08:00

Indulge me while I moan, groan, and complain. I am feeling overwhelmed and discouraged. Yet, nothing has changed since yesterday when I felt invigorated, directed, and optimistic. What happened overnight?

In an effort to "broaden my horizons" and divert my attention from the what inevitably becomes an all-consuming endeavor (the book, right now), I tried out for the local production of "Annie." Like many of my decisions, this was an implusive, last minute action. Not only did I have to sing and read, I had to DANCE--which is not my forte. It was a terrible audition, totally humbling, but I proved that embarrassment doesn't kill you and actually felt proud of myself--after the initial humiliation passed.

I did get a part in the chorus. I am a maid and a New Yorker and a number of other inconsequential unnamed persons. But it is a once in a lifetime opportunity to perform with my daughter Ashleigh (Grace) and my granddaughters, Quinn, Meg and Campbell (orphans). Until yesterday, I was enjoying myself. Today I am wondering how in the world I am going to be at practices every night--weekends included--through late December.

I have Christmas shoppping to do,presents to wrap, cookies to bake, Thanksgiving dinner to buy and prepare, flowers to plant.

I have neglected f.a.i.t.H. group. I need to update the website (done every 2 months), do some research for 2 members, make 2 hospital visits, send several cards, and make some phone calls.

Jim is sick today (in bed) after Tuesday's chemo. I have to go to the grocery store to get something he might eat(unlikely) and make some returns--the result of a week long shopping spree that sometimes occurs when I'm manic. Now I have buyer's remorse.

Things are moving along quickly with the publication of the book. I have interviews, articles to write, meetings with the publicist, and final details with the website and marketing print materials to approve and correct. Until yesterday it was fun and exciting. Today I am tired of playing author.

We went to a funeral yesterday of a dear friend who died unexpectedly. I so regret that I didn't interview him (as I intended to do for the last year) to write his life story. He had such a great story to tell and I missed the opportunity by failing to follow the leading of the Holy Spirit who was saying, "You really need to do this."

Then When I sat down at the computer just now--procrastinating--I read this email from an online cancer support group:

SMALL STRAWS IN A SOFT WIND by Marsha Burns -- Nov. 20, 2009:
The way is clear, and the door is open for you to proceed. Go forth with confidence and assurance, for I am with you, says the Lord. It is time for you to possess all that has been prepared for you. Do not be afraid or doubt that you have been set aside for My purposes at this time and for this season. If you will yield to the moving of My Spirit, I will cause you to actualize your kingdom potential.

I think He's talking to me again!

CPR for the Written Word

2009-11-14T18:57:00.000-08:00

The publishing industry is in serious trouble. Newspapers are folding. Magazines—even some of long standing—are stopping publication. Publishers are shutting their doors. Even those that are able to stay in business are only accepting manuscripts from established authors or public figures. It is nearly impossible for an unknown writer to get a foot in the door at a traditional publishing house. Almost no one can take a chance on an unknown when profitability is in danger.

You can help by:

1.Subscribing to your favorite magazine.

2.Give books for gifts.

3.If you use the library, still buy a book each month.

4.Support your local bookstores—particularly independent owners.

5.Only use Amazon as a last resort. The authors and the publishers make very little profit when you buy from Amazon. Frequently, the publisher's price is competetive with Amazon.

6.If buying in bulk, try the publisher or the author first.

7.Don’t give up on your newspaper unless you want to be without one. If you refuse to buy the local paper, at least buy a regional or national paper.

9.Do not buy a Kindle (personal bias).

10.If you have moral objections to many of the publications, support your Christian Booksellers. Subscribe to a Christian magazine. There are still some good ones around but they are struggling.

Writers, journalists, publishers, magazines, newspapers are in danger of extinction. If we don’t support them we are hastening the death of the industry.

Requiem for the Written Word

2009-11-09T13:12:00.000-08:00

The world is changing too fast for me. Along with the loved ones I’ve laid to rest, I mourn the exit of a multitude of things my grandchildren will never experience: small grocery stores that allowed you to run in and out in a few minutes, Sunday dinners at Grandma’s house, road trips where you saw something besides the highway, churches that look like churches, graduation ceremonies with some decorum, birthday parties with homemade cake and pin-the-tail on the donkey, neighborhood games on summer evenings. All are gone—as surely as Grandma, and like Grandma--living only in my memory.

I’m all for modern technology which has made our lives easier. I do like my Swiffer. I would hate to give up my Cuisinart Food Processor. The vibrating mascara wand saves all that unnecessary wrist action, and I don’t miss the laborious task of typing footnotes at the end of each page of a term paper. But if I have to give up the printed word, I won’t do it without a fight.

The written word is not dead yet, but believe me, it is very ill, struggling and gasping for breath as I write. Beloved family members are being called to the bedside to find the last ditch effort that might prevent its demise.

Imagine the world without books, magazines and newpapers—no morning paper with your coffee, no libraries, no waiting anxiously for the mailman, and no small bookstores with resident tabbies draped over the backs of well-worn reading chairs.

No handwritten letters from a loved one long gone, no diaries to be stumbled upon by surprised grandchildren—who think you were never young, no recipes scribbled on scraps of paper in (now-faded) lead pencil by a beloved great-grandmother.

The children of the coming generations won’t find Bibles with underlined passages, postcards from faraway places, letters home from a lonely soldier, notes in the margins of text books, or bundles of love letters bound in blue ribbons in the bottom of a cedar chest.

Instead of sharing a dog-eared book with grandchildren who are still enthralled with its magic ability to take them to a different world, we’ll say “Go get Grannie’s Kindle and I’ll read you a story.” Or, "Let’s gather round the computer to read an e-book.”

Book lovers, unite to save the printed word.

“I don’t care what they say.
I won’t stay, in a world without”
….books.

How you can help in the next post.

A Covert Killer

2009-11-02T18:04:00.000-08:00

November is National Lung Cancer Awareness Month and I want to take this opportunity to tell you about the disease that came into our lives like a thief in the night.

As most of you know, my husband Jim was diagnosed with lung cancer in 2002. November 15 of this year marks seven years of his survival with a catastrophic illness that doesn’t get the attention it deserves.

Jim is in a minority. He is in an elite group of those who have survived more than five years with lung cancer. Taking into account the stage and spread of his cancer, the group is even smaller. Less than 1% of patients with stage IV lung cancer live for 5 years.

In 2002, Jim was one of approximately 220,000 people diagnosed with lung cancer. 28,000 of those never smoked. Only 35,000 or 16% were diagnosed while in the early stages. Comparatively, 90% of prostate cancers are discovered in early stages; 50% of breast cancers are diagnosed in early stages.

Only 16 % of people diagnosed with lung cancer live for 5 years, as compared to 89% of breast cancer and 99% of prostate. That means that 187,000 of the 220,000 diagnosed along with Jim in 2002 are dead.

Lung cancer kills 160,000 people annually—more than breast, colon, and prostate cancers COMBINED. Yet a disproportionate amount of money is spent on research. The National Cancer Institute estimates that last year it spent $1,415 per lung cancer death, compared to $13,991 per breast cancer death, 10,945 per prostate cancer death, and 4,952 per colorectal cancer death. Yet, among all types of cancer, lung cancer remains the #1 killer—for both men and women.

Unfortunately, there is a stigma that accompanies lung cancer because many people assume it is caused from smoking and therefore self-inflicted. Jim never smoked; he was physically fit and went for regular physicals. Even if he had been a smoker, no one deserves lung cancer any more than someone deserves AIDS or Diabetes or breast cancer. But we don’t seem to judge as harshly people who fail to exercise, spend time in tanning beds, or eat a steady diet of fast food.

“There is a feeling among the general public, that lung cancer is a self-inflicted disease. Smoking is responsible for 80% to 85% of lung cancers, but let’s put this in perspective: Twice as many women die from lung cancer in the United States each year as die from breast cancer, and 20% of these women have never touched a cigarette. Even for those who smoke and develop lung cancer, why do we attach such a stigma to them? Many cancers, and other chronic diseases, are related to lifestyle choices.”
www.about.com/lungcancer “The Stigma of Lung Cancer” Lynne Eldridge MD

There are few events, rallies, or programs in November (Lung Cancer Month) compared to those in October for Breast Cancer Month—perhaps because there aren’t as many survivors to take up the banner. I guess there wouldn’t be many participants in our “Race for the Cure.” The band would have to play “When the Saints Go Marching In.”

What can you do?

Support the cause with donations.
Get an annual chest x-ray.
Stop smoking.
Maintain a healthy lifestyle.

It won’t prevent cancer but you will be better able to survive aggressive treatment.

Balloon crash

2009-10-23T14:02:00.000-07:00

Jim and I had been flying high since receiving the report on Oct 7 that Jim was cancer free. A 10:30 p.m. call from the oncologist burst our celebratory balloon and left us deflated. In Houston, Dr. Rios had told us that he wanted Jim to take "a few" more treatments-adjuvant therapy--not an unusual plan, and that he would call us within a week to give us the exact plan. We were so elated from the good news that we minimized the repercussions of additional treatment.

When we got home from Houston, while waiting for Dr. Rios to call with the specific protocol, we gradually absorbed the idea of being cancer free and imagined our lives without cancer treatment. Jim said, "It will be so nice not be tethered to I.V.s. Think of the extra time I'll have to do other things." I had dared to envision making plans for dinner or a weekend away without considering how Jim might be feeling. After months (years) of dealing with unpredictable and often debilitating side-effects, we would be able to return to a somewhat normal life.

“Hey, what happened to our miracle?” I wanted to ask Dr. Rios on the phone. ‘Cancer free’ conversation had been eclipsed with talk of ‘remission’ and ‘possible progression’ and 'monitoring for organ damage' from the toxic drugs.

Now we were facing another three, maybe even six months of infusion with the same medications that have killed the cancer--but seem to be killing Jim in the process. The prospect was bitterly disappointing.

Nicole reminded me the next morning that the confusion is arising because there is no ‘treatment standard’ for Jim. Not many patients with his history are blessed with scans indicating no evidence of disease. Therefore, Dr. Rios has to decide on the best course of treatment with little or no supporting research. If there had been visible cancer remaining, we would have continued with a maintenance protocol until the tumors showed progression--indicating that the drugs had been rendered ineffective. But since there are no tumors, the question becomes: How do we know when enough is enough? Does he stay on the chemo until something returns? How much more of the chemo can he endure without organ damage? Should they stop the chemo now? Then when?

So we have to keep praying for wisdom for Dr. Rios, who hasn’t steered us wrong yet, and keep thanking God and giving Him the glory for the things He has done.

New Hope

2009-10-15T19:28:00.000-07:00

This is the second time in seven years we've been told that Jim is cancer free. The first time was after his surgery in 2002 when Dr. Rios told us that he was very pleased with the results of his post surgery scans which were clear of cancer. "This," he said, "is the beginning of a cure."

I didn't know enough about cancer at that time to recognize that news for the miracle it was. I didn't know how few people are able to have the surgery that puts them in that position. So many lung cancer patients are told, "It's inoperable."

I was unwilling to claim it as a miracle because I didn't want to appear naive. I had read that BAC was incurable and I believed it. I spent the next six years waiting for the other shoe to fall--and it did.

Now seven years later, we heard those magic words again. This time I am reaching out, claiming it as a miracle. Fewer than one percent of patients with stage 4 lung cancer survive for five years. Jim has had Stage 4 cancer for seven years. To be cancer free at this point means as Dr. Rios said 7 years ago: "This is the beginning of a cure." This time, I say why not? God can do anything.

"So call me a cockeyed optimist and say i'm incurably green but I'm stuck like a dope with this thing called hope and I can't get it out of my heart."

Yes, the cancer might come back, but--it might not. We have been given renewed hope and that in itself is a miracle.

A Miracle

2009-10-15T19:18:00.000-07:00

I know I haven't posted much lately. I have been swamped between getting my book ready for the publisher and taking care of Jim during this last round of chemo. But I had to share this good news with you who have been such faithful prayer warriors. Jim was diagnosed with Stage 3B lung cancer in November of 2002. We were told at the time that fewer than 10% with that diagnosis survive for 5 years.

After some grueling treatment and radiation, the lung cancer laid low but he was diagnosed in 2005 with prostate cancer. Surgery took care of that. Then in 2008 he had a recurrence of the lung cancer near the spine. In March of this year another recurrence to the bone and the pleural lining of the lung. More chemo.

That brings us up to last week when he went to Houston for scans following his eighth chemo treatment. This is what happened.

When Dr. rios came in he peeked around the door and said,"Where
is my champion?" Jim either didn't hear him or simply didn't get the
significance of his the question.

He entered the room smiling and said,"There are some things that
medicine can't explain. My friend George Foreman said that education is
the beginning of moving away from God. But I think that as we learn
more we realize that we don't know very much." He turned to Jim. "God is working through
you."

"I have no explanation for what has occurred but Dr. Stenoine and I
have gone over the scan results and there is NO cancer."

Jim and I sat there staring dumbly at him trying to absorb the news he
gave us. Finally Jim said,"do you mean it's completely gone?"

He started to cry and Dr. Rios left the room to give us time to enjoy
the moment.

When he came back in, I asked him,"So are you calling this a bona fide
miracle?"

" Depends on your definition , but according to mine, yes. I don't know
of any lung cancer patients who are cancer free after 7 years with
stage four disease and 2 recurrences. "

"What did you really expect to find today?" I asked.

"Well I would have expected further reduction in the tumor in the bone
but probably not in the lung."

Jim says he never expected to hear the words "cancer free" in this
lifetime. It truly is a miracle and evidence of God's healing power.

What a mighty God we serve. He is still in the miracle business.

same old tune

2009-10-01T19:29:00.000-07:00

This post is out of order. I actuall wrote it before our trip to Houston. It should go before "A Miracle" that I just posted.

I sound like a broken record playing a tune that even I am sick of. I have nothing new to write about "scanxiety." I would think that after almost seven years of countless scans and waiting rooms, I would have mastered the art of waiting patiently.

I'm a terrible hypocrite. After glibly offering advice to hundreds of caregivers on how to cope with uncertainty and fear, the "under toad" sucks me down like a novice swimmer who who overestimated her ability to stay afloat.

Here we are five days from a trip to Houston--at least number thirty--and I've just figured out why I am anxious. There is a MONSTER clutching at my ankles doing his best to pull me down into the murky depths of depression. The surprising part is that he hasn't given up--and even more surprising that I haven't given in. But I am as sick of writing about it as you are undoubtedly sick of reading about it.

Courage

2009-09-15T18:38:00.000-07:00

Almost always the obituary of a cancer patient refers to his "courageous battle with cancer."

Makes me wonder--are all cancer patients courageous?

Courage requires action in the face of danger. It does not require absence of fear but rather action in spite of fear.

When I had a cold a few weeks ago, each morning I woke up expecting to feel better. I wasn't terribly sick just tired and lacking energy. I hated wasting time not feeling well, not accomplishing anything.

Then I realized: This is how Jim feels every day. His major side effect from the chemo is fatigue. Every day he gets up as tired as when he went to bed. Yet, he has the courage to keep taking the very drugs that keep him in a state of exhaustion. This perseverance in the face of unremitting pain and suffering is heroic. How much easier it would be to say, "I quit. I give up. I can't take it."

Are all cancer patients courageous? Maybe not. But all that I've met are.

2009-09-12T10:37:00.000-07:00

I have tremendous sympathy for caregivers who are sick or for couples who both have cancer. The year following Jim's first surgery and treatment, I prayed that I would stay well and I didn't have so much as a sniffle! I must say that in the ensuing six years I have been in overall good health. I don't take that for granted.

This week has been a reminder of how blessed I've been. I started with a headache and sore throat on Tuesday, plied myself with Zicam and VitaminC (which probably does no good), and tried to convince myself that I wasn't sick. On Wed night I brought out the big gun, my favorite beddy-bye elixir--NYQUIL. I don't know whether it made me better but at least I slept.

By Friday night I succumbed and admitted that I must have a sinus infection with a cough. I could hardly wait to get to bed last night with my Vicks Vapo-rub, 12 hour nasal spray, a box of Kleenex, and my shot of Nyquil.

The bad news is that Jim has the cough, too.

He wanted to take something for his cough at bedtime. "Should I take prescription cough medicine (someone elses)?" he asked, having learned to depend on my expert medical advice, "Or should I take Nyquil?"

I was so concerned with getting some relief myself that I couldn't think straight. I tried to focus. What ingredients might be contraindicated with the multitude of super drugs he is taking? I should look it up on the computer. If I weren't dying I probably would. "Take Nyquil," I finally tell him as I head off for a hot bath.

Unfortunately I can't shirk my responsibility so easily. I spent the night listening for his breathing to be sure I hadn't killed him. Thank God, he seems fine this morning--but I'm still sick.

The caregiver's caregiver (not)

2009-07-17T18:54:00.000-07:00

Never let my husband take care of me if I am wounded or ill!

I love Jim. He is a man of many talents but God knew what He was doing when he made Jim the patient and me the caregiver. If the tables had been turned I would have been dead years ago.

Tonight when we came home from dinner, I was drawn to the yard like a mosquito to a plump babies leg. The July evening is so beautiful, unusually cool and pleasant, and the rain-soaked dirt beckoned me to pull weeds while the pickin' was easy. I didn't even bother to make my usual preparations: mosquito repellent, garden gloves, crocs, and work clothes. Impulsively, attempting to beat the setting sun, I flew in still dressed in crisp white bermudas, a linen blouse, jewelry and my Stuart Weitzman sandals. Bad decision or lack of .

The bed in front of our house was filled with a twenty-five year growth of man-eating ivy, strawberry vines, violets, leaves, baby trees, and various and sundry weeds. I decided several weeks ago to remove the mess and paid Corbin to do the work. He did as much as he could and left the remainder to die off.

Tonight while the ground was wet, I figured the time was right to pull up the remaining vines. I pulled viorously with both arms flying fogetting that I did not have the protection of gloves. As I grabbed a large clump of dried roots, I felt a piercing pain in my thumb. Of course, I couldn't see exactly what had happened (I didn't have on my glasses), but I could make out a piece of root nearly 2 inches long. impaling my right thumb. Granted it was a shard of root, more like a large splinter, stuck through the side of my thumb, protruding near the lower nail bed cuticle.

I rushed to the door of the screened in porch (locked from the inside) and called for Jim who was watching--what else? the Cardinals' game.

"I need your help," I yelled, trying not to alarm him. Fat chance.
He ambled to the door, looks at the branch stuck through my hand and wiggles it. Trying not to faint, I scream, "You are going to have to cut one side off before you try to pull it through."

Now this is the priceless part. We move into the kitchenwith me holding up my throbbing hand. The kitchen is rather dark (sundown). He doesn't bother to turn on the light. The next thing I know he approaches me with the pruners. This is the absolute truth. I tried to follow his reasoning: a garden injury requires a garden tool?
The object to be removed is a plant? Or maybe a hand injury calls for hand pruners?

When I realized he was serious, I stopped him in his tracks. "Are you nuts? You can't cut it with those. You need scissors."

Nonplussed he looks at the implement and says, "Hmmm. Maybe."

He finally got the job done, after I suggested he stop the bleeding, apply some alcohol, and a bandage--none of which he would have thought of on his own.

Thank God I wasn't knocked unconscious. I think I should get one of those "I've fallen and I can't get up" thingies and take my chances with the fire department.

This just in: Jim came in from pool house: "How's your finger?" (At least he asked. I never said he's not thoughtful. "It's throbbing," I said not turning away from the computer. "I just told everyone how you took care of me." He says, (really and truly, I have to laugh) "Well, it's my chance to be the caregiver to you."

Poor, poor, thing. He really is clueless. Wait til he reads the post!

The Good and Humble Samaritan

2009-07-01T19:46:00.000-07:00

I have been reading Thomas R. Hargrove's book Dragons Live Forever about his experience in Vietnam. He is an extremely good writer with a story to tell. He did not offer much about himself in our conversation at the airport--it was I who introduced the topic of writing after which he talked about his books. He didn't mention that he has a doctorate and is an expert inthe area of rice agriculture for third world countries or that he and his wife Susan offer support to families of victims kidnapped in foreign countries. His second book The Long Road to Freedom is the true story of his captivity by NARC in Columbia. There is a movie based on the story starring Meg Ryan. All in all, a very interesting and accomplished fellow. I wish I'd had more time to talk with him.

The Good Samaritan

2009-06-28T19:06:00.000-07:00

When we arrived at the airport in Memphis we were informed by the agent at the gate that the flight to Houston was overbooked and that so far only one person had agreed to take the compensatory free flight and give up his seat. This after Jim spent 5 hours on the phone with Delta changing our times and securing a direct flight. Just as I was explaining our situation a rather disheveled man walks up and hears our plight. "Perhaps I can help," he said. "I have a seat on this flight but I will give it up if you can book me on another that will get me to Houston in time to make my connecting flight to Dallas. In fact, I don't have to be home until Monday--if you will pay for me to stay I can fly out tomorrow."

Wow! God works fast!

After twenty minutes of negotiations (for him) we had our seats on the 1:40 flight. The man came over and sat down by us as I thanked him for his kindness. He had been in St. Louis for a reunion of his Vietnam platoon. From the smell, I think they had been celebrating non-stop. Turns out he is a published author, Thomas R. Hargrove, who just happened to have a few of his books with him. The book, which I purchased is A Dragon Lives Forever: War and Rice in Vietnam's Mekong Delta published by Texas A & M University Press in 1994. He has 2 more published by Random House one of which--about his captivity by NARC in Columbia--has been made into a movie. I don't remember the name. They called us to board. I will look it up on line. Very interesting guy.
Making this divine encounter even more amazing--he was traveling to Dallas to get his wife who is being treated for LUNG CANCER. We gave him one of our cards. I will follow up later.
God is full of surprises.

Caregiver's Complaint

2009-06-28T17:24:00.000-07:00

Caregivers occasionally need to vent without rousing the ire of the people who haven't walked in these shoes and therefore don't realize that the patient--however sick he might be--still has faults. For instance:

Jim is annoyingly "prompt." This coupled with his aversion to inconveniencing another human being can drive me crazy. When we come to Houston, we call ahead to have our Afghan friend Ferreydoon (Fred) pick us up at the airport. Fred is a paid driver. He is not doing us a favor--we pay him for his services. If we are to arrive at 3:30 Jim tells him to pick us up at 4:15 so that we don't keep him waiting. When we have a direct flight, with no problems, we arrive early--which means we end up waiting for 45 minutes. Since this has happened the last few times, I suggested that Jim tell him to be there at 3:45. When we got on the plane today in Memphis and it was apparent that we would be leaving on time, I suggest he call and change the pickup time. But no, being his stubborn Taurean self, he wouldn't budge. Better he wait in the 100 degree heat, fighting the side effects of chemo, than to have poor Fred sit in his airconditioned car for 15 minutes.

When we got to Houston--at 3 o'clock, Jim did call him to say we had arrived early but it was too late to change the pick-up time. I know what you are thinking--Jim is such a nice guy, so humble and thoughtful,--true, but there are times when it rankles.

We have had more arguments over the years--not because he wants to be prompt, but because he wants to be early! I like to be prompt ,too, but not early, because as you all know I hate to wait. Actually it's because I hate to waste time. As my children will attest, I'd rather squander money than time. I plan everything to the last minute (not always successfully) so that there aren't gaps of unproductive time. I am the consummate multi-tasker. I never go anywhere without a book, (in fact i've been known to read while I drive (well, only on the high way with light traffic and cruise control), I pray while I exercise, memorize scripture while I walk, and wait to make obligatory phone calls until I'm in the car. I only talk with friends while I make beds, unload the dishwasher, or dust. Scratch that--I gave up dusting a few years ago. I have dropped cordless phones into the washing machine, the toilet and the sink. Before cordless I fried several cords while cooking.

I even schedule my R & R. My daily "to do list" has time allotted for an occasional napping for watching my favorite TV shows ( and that I try to combine with eating). I actually thought my time stewardship was a virtue until the psychologist pointed out that I was driving the rest of the family crazy.

Before you come down on me too hard, let me say that I didn't press the issues with Jim. Just one "I told you so" as we waited in the sweltering heat for the car to arrive." But I didn't pick a fight--in his weakened condition it wouldn't really have been fair.

A Summer State of Mind

2009-06-08T13:37:00.000-07:00

I’ve spent the past two weeks loafing and languishing, enjoying the freedom of summer—which is odd since summer offers me no more freedom than any other season. Having lived the better part of my life tied to the school calendar, I find that remembrances of summers past are too strong to ignore. When school’s out, the pool’s open, and the temperatures soar, I feel liberated from all things remotely suggesting work and obligation.

I lie by the pool as if I have nothing to do and nowhere to be. When I’m hungry I eat; when I’m sleepy I nap. I succumb to the lure of a good book—during the day—a pleasure I usually postpone until bedtime. I watch chic flicks or “All My Children” with no thought given to the dust bunnies collecting in the corners or spider webs in cracks and crannies.

Summer is an attitude formed in childhood when the mind is still malleable. Parents continue with their year-round drudgery allowing the kids to operate on a more flexible schedule with less supervision. Bed times are extended, rules are broken. Imaginations run as wild as the barefoot children free to roam as far as their legs or bikes will carry them.

Adolescent summers. Days at the pool, the smells of chlorine, and suntan lotion, and hamburgers sizzling on the concession stand grill. Basking on wooden lounges, the sun beating down on yet-to-be damaged skin, head on my arms, noises in the distance of cannon-balls and can-openers, and life-guard whistles accompanied by shouts of “No running” and “Stay off the rope.” I’m about to drift off when a teenaged admirer seeking attention dumps a hatful of icy water over my sun-baked back.

A day at the pool is followed by a baking soda bath, a splash of Jean Nate, and sun dress chosen to show off the newly tanned skin. The boyfriend arrives driving his dad’s ’62 Bonneville. Destination—the “Dog ‘N Suds” for root beer in an icy mug delivered by a car hop.

The memories are so thoroughly assimilated that all these years later summer still holds the promise of romance and the possibility of adventure. When the thermometer rises and the aroma of Coppertone fills the air, I ignore self-imposed regulations and surrender to the summer state of mind.

Now my adventures take a milder form. I no longer swim in the forbidden shale pits or flirt with bad boys in fast cars. Tossing caution to the wind, I indulge myself in a racy movie, a late night swim, potato chips without a picnic, chocolate for breakfast--the forbidden fruits of adulthood. I haven’t donned a bikini yet or attempted a half-gainer from the diving board—but summer’s not over.

Thankfulness

2009-05-15T16:36:00.000-07:00

I returned from my walk to Rice Village—always enjoyable but now a necessity since I’ve joined the ranks of a sedentary profession. My last full time job was tennis which provided plenty of exercise unlike my latest job--writing. There are similarities in the two: Neither pays much. I’m passionate about them both. Both require some natural talent but skill development can compensate for a deficit in talent.

I walked about seven miles today. On the first trek to Rice Village I practiced gratefulness and listed all the things I was thankful for. I thought about how blessed I am to have been able to do so many things I am passionate about. Or maybe I’m like Campbell—passionate about many things. She is so full of life. Everything is “her favorite.” She loves blue, and cats, and baby animals, and spiders, and bats. Annie, The Sound of Music, swimming, the play house, Donut, and twirly dresses. High-heeled shoes, lots of jewelry, The Wizard of Oz, and purses. Out of the clear blue, she lays her head on my shoulder and says, “I love you, Gigi.”

I feel the same way about writing. Finding exactly the right word or phrase to express a thought or feeling is like playing tennis on a golden afternoon when every ball hits the mark and my partner and I are perfectly in tune.

When Jim was in treatment in 2003, I read some book (surprise) about cancer with one excellent take-away. The author suggested that cancer patients in re-evaluating their priorities (which most do) make a list of the 5 things they love to do and five they hate doing. Jim and I found this very helpful. The idea is to eliminate or delegate the tasks you hate, leaving more time for the ones you love. I remember the lists ,and writing wasn’t even on mine.

That God opened the door to writing during the cancer journey was one of the gifts of the disease. Jim, too, found an outlet and passion in public speaking. The natural bents were there all of the time but we didn’t see them until other doors were closed.

Make your lists. Life is too short to waste time on activities you don’t enjoy. Maybe you can take over some task your spouse deplores or you might hire someone to do those chores that take a big chunk of your free time. Some of the things on your list might surprise you. Until I thought about it I didn’t realize how much pleasure working in the yard gave me.

I just wish there were more hours in the day to do all of the things I love.

Survivor

2009-05-10T17:01:00.000-07:00

When Jim had been ill for several months, I wondered, when does he become a survivor? Was he a survivor six months into the disease? A year? Would he only become a survivor when the doctors declared him cancer free? Or only when given a clean bill of health? (Lots of luck with that one. That’s one bill a cancer patient never receives.)

I read that anyone (caregiver included) who lives through the diagnosis and the turbulent weeks that follow, can be called a cancer survivor. If suffering and stress make a survivor, I would agree. We deserve some sort of acknowledgement for living through that ordeal. But "survivor?"

Technically those who outlive a poor prognosis might be survivors, but often their survival has little to do with their own effort. To say, “I am a five-year survivor” seems like a claim of personal accomplishment when in fact some survivors could best be described as richly blessed or darned lucky. It makes no more sense to credit someone with survival than to blame someone for death. Both are random events orchestrated by a God whose methods and motives are unknowable. “On a large enough time line, the survival rate for everyone drops to zero” (Chuck Palahniuk).

Just living through an ordeal and coming out on the other side still breathing isn’t such a great feat. In 1980 Jim was driving to work in a little MG convertible. He slowed to cross a double set of train tracks on a country road where the trees and brush obscured the view. A three quarter ton truck designed to travel the tracks but not heavy enough to trigger the cross arm failed to make the required stop at the crossing. The driver crashed into the side of the MG pushing it into the path of a train coming from the opposite direction on the parallel track. Jim’s car was hit first by the truck and then by the train which carried it a mile and a half before it could stop. The car was demolished but miraculously Jim lived. He was a survivor, sure enough. But his survival had little to do with anything he did.

Length of survival should be celebrated, but every death should remind us that survival is a gift. Does the five-year survivor deserve more recognition than the person who dies after a valiant six month fight? Is it even necessary to have cancer to be a cancer survivor? Any caregiver who lives through a spouse’s diagnosis fits the survivor definition. The length of time one endures, the severity of the disease, or the type of suffering don’t make a survivor. What does? Next time.

An Almost Perfect Mother's Day

2009-05-10T15:14:00.000-07:00

After a hiatus because of Jim’s chemotherapy treatment, we began the day with church where the minister reminded mothers what blessings children are. Not that I need reminding—at least not this week when all three of mine are in my good graces, and the problems that come with raising children are long behind me—though not entirely forgotten.

Then on to brunch at Windyke with three beautiful little girls in linen dresses, Mary Janes and hair bows, one grandson, now old enough to be pleasant dinner company and tall enough to qualify as an adult, two daughters, one son-in-law and one handsome husband who even wore a suit for the occasion. The rest of the family was accounted for and excused: Cade and Corbin were at a soccer tournament, Nicole, Chebon and their boys were here last weekend to celebrate birthdays.

The rainy day begged for an afternoon nap, so I curled up in my favorite shabby green chair, with my fat, four-legged, furry son on my lap, and caught up on “All My Children” (so appropriate for Mother’s Day). Soon the cat and I were fast asleep.

If you’ve never taken a “cat-nap” I can tell you the only thing better is a “baby-nap,” which I had recently with Campbell. You lie down in hopes of getting the baby to sleep; she grows heavy on your chest, mouth slightly open, cheeks flushed. You breathe in the sweet aroma of her baby breath, her heart beating next to yours, and soon you are both transported to sleepy town with Winken, Blinken and Nod.

A cat-nap can’t match a baby-nap but it is the next best thing. The cat, in preparation for sleep, takes his little paws and kneads on your stomach for several minutes not an entirely unpleasant experience unless he hits an ovary.(When I was a little girl our snarly, black cat “Baby” waited for my grandma to sit in her favorite rocker in front of the picture window, and kneaded her plump grandma lap until he slept. I was so envious, but he was a one person cat and not about to perch on a skinny ten-year old who didn’t sit still long enough to make a lap. Alas! I am the grandma now and apparently my stomach now meets cat specifications.) Soon the cat finds a comfy spot, and like the baby, grows warm and heavy. Before long, I’ve synchronized my breathing with his rhythmic purring and we’re gone farther away than Calgon ever takes me. I should hire this cat out; he’s much better than Lunesta.

After two hours, when I intended to use for writing, I wake up in need of something sweet. Surprising since I topped off brunch with chocolate pudding cake and bread pudding with coconut, swearing to never eat so much again. BUT, I discovered the perfect mini-treat. At church the youth group was selling baked goods to finance their trip to Guatemala and I bought these cute little things called “cake-pops.” What a great invention. A little glob of cake, the size of a ping-pong ball, covered with a layer of smooth chocolate icing, sprinkled with multi-colored pareils, impaled with a lollipop stick. Not only are these seemingly innocuous (after-all, they are bite-size), but they are surprisingly doughy—kind of like nearly-done dense cake batter. A perfect mother’s day treat. (Someone find the recipe. Although, I suspect a grandmother has to form and frost all those little balls.)

All in all, it was a nearly perfect Mother’s Day. The only things missing were some sunshine and a mother.

When it rains.....

2009-05-05T15:17:00.000-07:00

I think the universe is conspiring against me. Nicole, Chebon, and the boys came to see Jim this weekend--that part was great. Tara, Nicole and Ashleigh had everything worked out so that Jim and I could enjoy the family without wearing him , or me, out. Then Ashleigh and Chris went to Shreveport for MawMaw's funeral leaving Tara to keep Ashleigh's girls along with her own three. The second night Campbell got sick which meant trying to keep her separated from Jim.

I stayed at Chris and Ashleigh's with her on Saturday and took her to the Dr. on Sunday. Cade watched her Sunday morning (no church for any of us). The four boys had plans for paintballing and to play outside all weekend but the rain kept everyone inside.

Remember, I still don't have a dishwasher so we had to resort to the old-fashioned method.

Yesterday I tried to catch up on my writing and worked about 5 hours revising each chapter. I should have quit when I was tired but after "24" I sat down at the computer determined to finish a section that has me stumped. Somehow I deleted it--the entire chapter. I copy everything onto my hardrive at the end of the day but I hadn't had a chance to do that before I mistakenly hit delete. That was at 10 oclock . I sent an e-mail to my computer guru who called within the hour and sent me a program to retrieve lost folders from memory sticks.

At one o'clock I was still looking for it. I will never understand computers. Where is the recycle bin and why didn't my chapter end up there? Maybe some peculiar virus ate it. Maybe another want-to-be author pirated it.

I have the chapter on hard drive from January but that means more revision. I am so sick of this book. Pray that I hear something from the publishers--who have had the proposals since December--soon. A yes or no would make my decision easier. WinePress called last week again and they are ready to go when I sign the contract. What to do?

One more worry

2009-04-30T19:24:00.000-07:00

As if I didn't have enough to worry about, now I can add swine flu to my list. Progresssion of disease is not always the reason cancer patients die. Frequently they succumb to other diseases because of a compromised immune system from chemo. Or they die from malnutrition. I have to be protective of Jim which is why I had him wear a mask last time he was in treatment. Although it probably doesn't do much good in protecting him from airborne germs, it serves as a reminder for others to stay away from him. He doesn't need contact with sick people. No hugs, hand-shaking, or God-forbid--kisses. That will be difficult for Campbell who has to have her "hugth and kitheth" every day.

I hate to travel to Houston which is so close to the outbreak and hate to travel in a plane--a flying germ incubator. Maybe Dr. Rios will tell us not to come but to take our next treatment in Memphis.

Jim is feeling well today except for racing heart and agitation--possibly from the steroid. He also has had insomnia the last few nights. Still preferable to the other side effects he's had.

At the Edge

2009-04-29T19:10:00.000-07:00

Today I crashed. The last few months have caught up with me.

We watched Campbell today as we do every wednesday. She entertained herself--dressed up in her scarves, jewelry, wig, and spike heeled shoes and was as good as a three-year-0ld can be. Very easy day as far as baby-sitting goes.

She and I were going to the library, Target, and Children's Place so that Jim could rest but when we finally got ready to go, we didn't have a carseat. Chris had forgotten to leave the seat which they borrowed yesterday for Tara. Chris is understandably distracted because his grandma died yesterday after a 7 month battle with pancreatic cancer. He and Ashleigh are trying to get ready to go to Shreveport for the funeral.

No harm actually done because CAmpbell was happy to stay here and play but when my plans were thwarted I realized I am hanging by a thread. Jim went to West Clinic for bloodwork. (Dr. Rios called last night at 10 and this morning at 7.) He prescribed a different painkiller and ordered a blood panel.

I ran the dishwasher and the machine stopped mid-cycle. The 23 year-old artifact gave up the ghost. We had long been expecting the demise but still it is hard to let the old gal go. The thought of buying a new one nearly did me in, too--another indication of my fragile state-of-mind.

Then I put Campbell down for a nap, thinking I would get a nap at the same time, but Campbell had a different idea. Everytime I was about to drift off, she said, "Gigi, I'm not sleepy." Neither threats nor bribery convinced her. She took the bonnet off the teddy bear and put it on her head; she got out of bed to get her water; she sang songs. Finally we gave up and got up.

By then Jim was home from the doctor waiting for the computer man. Yes, the computer was down in addition to the air conditioner and the dishwasher. He said please go upstairs and take a nap. This is where the caregiver guilt kicks in. I tried to sleep but kept thinking, I can't leave him alone down there with all these problems. He's the one with cancer. He needs to rest.

I remember having these same feelings 6 years ago. I don't want to be the responsible party. I want to be the irresponsible party. I don't want to make any decisions. The problem is I am not willing to reliquish control and let someone else make them. The universe is conspiring against me. Even the appliances are in revolt. I'm sure the washing machine is planning a breakdown too but first I intend to have mine.

Chemo side-effects

2009-04-26T12:19:00.000-07:00

Jim is now feeling the effects of the chemo that he took on Thursday and Friday. Last night he had restless leg syndrome--probably from the Decadron. Just about the time he would fall asleep he would jerk to attention. The drugs in the preinfusion must be doing their work because he has not been nauseated. Yesterday he was pretty cranky--with good reason. It has to be difficult to feel crummy and know that this is just the beginning of a long ordeal.

The air conditioning is not working in the downstairs addition (bedroom) and the repair man can't come until Monday. Last night wasn't bad. We can go upstairs if necessary but we both want to sleep in our own bed after sleeping at the Holiday Inn for 5 days. In 2002 when we came home from the hospital, I was surprised that the world hadn't stopped in light of Jim's diagnosis. WE had leaks and varmints in the attic and other problems that nearly broke the camel's back. This time I was better prepared to deal with minor aggravations knowing that life goes on.

I'm a little rusty on my caregiving techniques. He planned to go to church this morning but I didn't think that was possible. Then i remembered that I needed to take charge of the decision. So I said, "I really don't want to go to church tomorrow. I'm just exhausted."THis relieved him of the responsibility of making the decision.

This morning he was glad because he felt worse. He has been sleeping all morning on the screened-in porch, feeling generally miserable--flu-like aches and pains. He ate a little dry cereal for breakfast but has no appetite.I'm so glad we added the porch two years ago. He can watch TV out there in the cool breeze and feel as if he's outside.

I'm taking up the slack--gladly--realizing how much Jim does around here. The trash, unloading groceries, rnning errands, going to the post office, pumping gas. When he was working we had a very traditional division of labor. I pretty much did the household tasks and he brought home the bacon. Since he retired he pitches right in with the work here. I'm spoiled but then I have always been. I've never taken him for granted.

Guess I'll go to Lowes and get some plants--always a good pick-me-up.

Hiccups

2009-04-26T12:15:00.000-07:00

4/24/09

Jim has had the hiccups for almost 3 hours. This happened last time when he had chemo. Hiccups are seldom listed as a side-effect but many patients complain about them especially with the platinum based drugs. Actually they are probably caused by the dexamethasone that he takes 2 days before and 2 days after the chemo.

Last time (2003) I was computer illiterate and didn't check Google for solutions. I just did that; he tried the old sugar remedy--HI has sugar packets in the room--and voila! Hiccups gone! We'll be taking sugar packets on the plane tomorrow.

Do any of you have other solutions should that fail?

And fail it did. When he lay down to sleep the hiccups returned in full force. The sugar didn't help this time. In about an hour they went away.

Walking in Houston

2009-04-26T12:05:00.000-07:00

Nothing much to report actually. We got back to the room at 4. Jim rested and I walked to Rice village to eat and bring back food for him. So far so good. No nausea. He is tired, of course ,but this was a long day. Tomorrow will be shorter.

Walking to Rice village tonight i thought again about the diversity of the neighborhood--making it such a great place for a stroll. No two houses are alike. Ultramodern sits next to a stone cottage with a picket fence. Palm trees dot the yards of spanish style homes. Live oaks stretch from yard to yard. Crepe myrtles line the walkways. Each house is an expression of the people who live in it. One I love has cobalt blue doors with cobalt planters on the brick front porch. A paint choice that would elicit a "What were they thinking?" in Germantown seems perflectly appropriate here.

Hindu goddesses peer across the fence at a statue of the Virgin Mary. Hispanic nannies push Asian babies in fancy strollers. African American toddlers play in the yards with Hispanic children.

Even the pets are a hodgepodge of breeds. Fat tabbies and sleek Siamese lounge in the sunny driveways. In the evening senior citizens walk little lap dogs and generation X'ers are led by the designer breeds--Schnoodles, and poodles and Labradoodles.

Isn't diversity wonderful? Not that we really experience much of it. Most of the people I spend time with look and think the way I do. When I was thinking of starting a book club, I told Nicole I would like to have a diverse group but my friends are a pretty homogeneous group. Her suggestion was to find an Iranian lesbian attorney. Bound to get some different ideas there--all in one invitation.

Today when I was walking by myself I thought how much I missed Jim saying, "Do you have your cell phone? Where's the room key? Watch out! You nearly stepped in front of that car." Just as he would end up with a port-a-cath in his ear without me, I would never get on the right plane or even in the right car without him following me around.

Wouldn't the world be a dull place if we were all alike?

chemo

2009-04-26T12:02:00.000-07:00

4/23/09

Jim was uncomfortable last night--aches and pains and some discomfort in the area of the port-- but he slept well. In spite of his bravado and positive outlook, I know this is getting him down. No one wants to take chemo again. And as the spokesperson for all of those brave and silent suffering patients, my job is to tell you that whatever they say, this is no easy journey.

4/23/09

Some regimens might be relatively easier but none are easy.Jim is taking his pre-infusion now--Decadron, Zofran, Benadryl They should begin the other drugs--one at a time--shortly. The nurse said he will probably be here for 6 hours. Tomorrow should be shorter--3 hours.

Dr. Rios answered some questions for us: 1.)Yes I will be giving Jim Procrit and Neuposgen shots again--i guess beginning next week. Pray the insurance pays for this. Dr. Rios said he didn't foresee a problem. 2) He will get 4 sessions of the 4 drugs, once every 21 days--then a PET back here in Houston to see if the tumor is shrinking. Start praying now. With every drip that goes in his body I am praying that it goes directly to the ttumor and any others that have begun and obliterates them. 3) Pray that he doesn't have a problem with clots--a common side effect with the Alimta or maybe Avastin iget them confused. 4) He is going to get us some phenergan for breakthrough nausea but the pre meds they use now are much stronger than in 2003. Then the effect for nausea was only 24 hrs. Now it is 5 days.

I am going to get something to eat. I hate going without Jim but 6 hrs is too long to wait and I doubt very much that he will feel like eating tonite.

port-a-cath

2009-04-26T11:58:00.000-07:00

4/26/09

Jim got undressed and into the bed. found a vein to hook him up to the mild anesthetic, asked all the pertinent questions, and took him up to the "room" to put in the port. Now, after talking with those who have had a port inserted recently, I expected this to be a drive through procedure. jump out of the bus, run into E.R., get a shot of painkiller, pop the port in and head to Le Peep for our breakfast. Not quite.We have been here since 7 and they just took him up at 10.15. Said the procedure will take about 45 min, then an hour or 2 to be certain there are no problems with bleeding. The port has to be inserted on the left side since it was on the right last time, which is a little more difficult.

at the hospital

2009-04-26T11:48:00.000-07:00

4/26/09
Great trip. Thanks to the ludwigs, we were able to fly directly from Memphis--no getting up early, no three hour drive, no layover in Atlanta. Thanks again.Getting up before the sun is for the birds--literally. We joined our fellow sojourners on the shuttle bus at 6.30 A.M. Ten people different shapes , sizes and colors all headed to hospitals in search of a medical miracle. First stop MD Anderson, next St. Lukes, Methodist, all places we've been on earlier trips. Last stop Hermann Memorial a new one for us.Admissions was ready and waiting for us. Good sign. Insurance--check. Next stop "Procedures." ""Do you need someone to take you? asks the friendly and efficient 'admittor.'"Oh, no," I reply quickly, thinking Jim is capable of walking. Twenty minutes later, hopelessly lost, we back track to admitting. Or we tried but in absence of bread crumbs we couldn't find our way back. Finally after 30 minutes we found the room."Sorry we're late," I tell the nurse in procedures but we were lost."Oh, It happens all the time since the took the sign off the door. I keep telling them they need to replace it."might be a good idea or tell the admissions people to stop directing us to the room marked "procedures.".
Posted by Cyndi at 9:53 AM

Caregiver Narcolepsy

2009-04-14T09:52:00.000-07:00

I can't get enough sleep. When Jim was first diagnosed and went through surgery, chemo and radiation, I had the same problem. It lasted for a year. I actually made appointments with the Dr. believing there was some physical explanation for my fatigue. He discovered that my hemoglobin was a very little bit low and put me through the battery of tests. No underlying problem. I took iron supplememts but I can't really say they helped.

Now, after several other stressful periods, I have decided the need for sleep accompanies the caregiver job.
I can sleep (and do) for 9 hrs straight, take a 2 hour nap, and still want more! I hate to waste so much time--at an age when time is at a premium.

Bad Hair Year

2009-04-14T09:28:00.000-07:00

After years of trying to find the hair-stylist with the magic wand, I am returning to the tried and true stylist I divorced five years ago. I left her for a younger woman hoping for revitalization through a more modern hair style. The experiment was a dismal failure.

I don't know whether the reconciliation will be successful, but I have to give it a chance. I'm crawling bck with my tail between my legs, begging her forgiveness, and hoping she will take me back.

Although my friends keep telling me my hair looks good, I think I look like a poor imitation of Adam Lambert sans the black dye. Adam is prettier , of course.

My appointment is today. I'm hoping for a magic transformation.

A Grave error

2009-04-14T09:14:00.000-07:00

This happened a month ago on our way back from my husband's Dr. appointment in Houston. We stopped at the Grove—airport ice cream shop—because I needed some more comfort food after a stressful week of scans, appointments and bad news.

I ordered my hot fudge sundae, took out my money to pay, because I had handy cash, told the woman behind the counter I was paying for Jim’s who was standing behind me (actually beside me.) She looks a t Jim and says in heavily accented English, “He your son?”

I wanted to throw my hot fudge sundae into her smiling face but instead I replied icily, “He is my husband.” To which I might have added: my 63 yr old grey haired husband with stage 4 cancer.

Jim has tried his best to explain her grave error. “A cultural thing,” he says. “You know you paid for my ice cream so she thought I was your son.” I’m not buying that.

He tries again. “The poor thing was visually impaired. Did you see her service dog lying behind the counter?” NO.

One last try. “After you left, she said, ‘I make bad joke.’” No, she make near-fatal mistake.

I told you all I’m looking bad, in need of a new hair style or makeover. The only positive explanation I can come up with is that she thought he looked 16 and I looked 36, or even 26 and 46.I guess I don’t mind looking older than him if I look younger than I am. I’d like to go back for clarification but if she thinks I look 80 I’d have to kill one of us.

The moral: Never marry a man with boyish good looks. Your ego can take the comparison at 25 but not at 62.

Growing Older

2009-04-13T12:00:00.000-07:00

I was born in 1946 the first of the baby boomers. Now that powerful generation which demanded attention by the sheer force of its numbers has reached retirement age. I wonder whether we will continue to carry the weight to which we have become so accustomed.

I have always been able to say that each stage of my life was better than the preceding. Now I wonder. More than aches and pains and the physical degeneration of the body, I worry about the lack of respect that older women generally experience. Will I reach the place where no one listens to what I have to say? When repair men, and doctors, and adult children assume that my brain power declined with my physical power?

Mom in her later years would sometimes have Jim make calls for her—not because she was incapable but because she knew he would make more of an impact. She told me, “No one listens to what an old lady has to say.”

Maybe I should move to China where the elders are revered for their wisdom.

Back in the saddle again

2009-04-13T11:40:00.000-07:00

Back in the caregiving mode again. Since my post last year around this time, Jim has had another metastasis—this time to the bone. The whole process of waiting, planning, deciding on treatment, and dealing with side-effects has begun again arousing many of the same emotions I experienced the first time around. Although the diagnosis shock has been replaced with something more like resignation, I still find myself trying to control every aspect of the process. In some ways knowing what lies ahead makes it easier. In other ways it seems more difficult. For anyone who doesn’t know, chemotherapy is grueling!

Jim’s attitude is good, as always. He had a few bad days adjusting to the news that bone met will require systemic treatment rather than radiotherapy. I, on the other hand, am somewhat depressed. A second metastasis pretty much eliminates the possibility of a complete cure—if that was ever a possibility. I know there is much to be grateful for but after five years with no recurrence I had really begun to hope the cancer was forever gone.

Back to the drawing board for me. I need a change in attitude.

Cancer Recurrence

2008-05-14T14:30:00.000-07:00

For 5 yrs we have lived with the possiblility of a recurrence of Jim's lung cancer. The possibility has become a reality. They told us after his surgery that while they "got all of the visible cancer", the likelihood of microscopic disease somewhere else in the body was great.
This time the metastasis is in the soft tissue next to the spine.
I am somewhat surprised by my reaction. I wondered during those years of respite whether a recurrence would be as world-shattering as the original diagnosis. For me the answer is "no". I still maintain that nothing in this 5.5 year journey has been as bad as those first few months of panic and fear.
I won't use the word "peace" to describe my state of being. It's more like "resignation", far less positive than "peace". I hate the idea of having to make decisions again--which doctor, which treatment, which plans to change.
The responsibility of those decisions weighed heavy on me while taking care of my mother and now, when i have not yet recovered from her death, we are facing that whole process again.
There are feelings that i can't discuss, even on this blog, because, once again, I have to be positive for Jim and other family members.
I am serioulsly considering finding a psychologist who specializes in grief and chronic illness but it's just too much trouble.

tribute to Mom

2008-04-27T13:47:00.000-07:00

Those of you who have known my mom for 20 years or less probably think of her as a sweet little old lady. And indeed she had become just that. However, she didn’t think of herself as sweet, or little or old and neither did I. I’d like to tell you how I will remember Mom.

She was the strongest person I’ve ever known. She believed that she could do anything she put her mind to. “Where there’s a will, there’s a way,” she would say, and she was never lacking in will. When she made up her mind to do something, she did it. She believed that God helps those who help themselves, and she had very little patience with those who had no backbone.

Mom was never a people pleaser nor was she a people judger. “Everyone to their own notion, said the old lady when she kissed the cow,” was another of her favorite idioms. She didn’t infringe on others’ activities nor did she expect them to infringe on hers.

She was truly content in her circumstances and took great pleasure in each day that God gave her. I never heard her express a desire for something that someone else had. She was never jealous of someone else’s accomplishments, their possessions, or their children. She told us frequently that she had the best family any one could have, and that she never wanted us to feel any guilt when she was gone.

Mom was always person of deep faith and even when she wasn’t walking the walk, she was laying the foundation for what would become my world view. I always knew that she believed in God as the Creator of the universe, in the divinity of Jesus Christ, the power of prayer and eternal life with the Father. When she wasn’t going to church herself she still saw to it that I went--first to Sunday school and ultimately to church and church activities.

She was generous. When the girls were little she took them to Disney World and said “I intend to spend my money on them while I’m alive. These are the things they’ll remember.” And spend it she did. She went right on til the day she died. When Jim told her in the hospital that she would be getting back some money from the income tax, she said, “I’m going to put that in my little hidey hole for Christmas.”

Mom couldn’t stand to see someone hungry or homeless, and when approached, she always gave them money. She frequently bought breakfast for some poor old homeless fellow, a regular at McDonalds. We thought maybe she went too far when she started joining him at his table because she knew he was lonely.
She left a living legacy in the people who knew and loved her.

Me--a Caregiver?

2008-04-24T13:46:00.000-07:00

I was born in 1946, the first of what would become the most powerful generation of Americans theretofore seen. In the past five years I have become a caretaker for a husband with cancer, an aging mother, and a part time sitter for grandchildren. I know that my experience parallels that of the 78 million Americans born between 1946 and 1964, who have survived long enough to be senior citizens. We truly are the sandwich generation, facing a set of problems that have never before been encountered by so many at the same time.

I am not by nature or inclination a servant type personality. I didn’t even enjoy caring for my own children when they were infants. When we brought our first daughter, a colicky, cranky infant, home from the hospital, she screamed and cried every night. I thought “Who is this stranger interrupting my sleep and demanding every minute of my attention?” I wasn’t suddenly overcome with motherly feelings. When our second was born 13 months later, I would carry her downstairs, turn on the oven (no I didn’t put her in it), prop my feet up on the stove, and feed her a bottle while I read whatever book I was engrossed in at the time. At least I held her. I guess that counts for something.

I met their needs but I was not a hands-on, nurturing type of Mom. Even though I stayed at home with them, took care of them when they were sick, fed them nutritious meals, I can’t say I loved the job. I enjoyed it much more when they developed personalities and became somewhat independent. I wasn’t one of those mothers or grandmothers who loved to sit and rock a sleeping baby. That’s not to say that I didn’t love my children. It’s just that I found taking care of them extremely boring.

Knowing how I felt about caregiving with my own children, how I feel about it now should not come as a surprise. So how do you pull it off if you are among many, like myself, who were not born suited to the task?

Me? A writer?

2007-11-15T09:41:00.000-08:00

After divulging yesterday, on a blog for the whole world to read, that I aspire to be a writer I have had serious PPR’s (post party regrets). How presumptuous! What arrogance! What gives me the idea that anyONE wants to read anyTHING I have to say on any TOPIC? Yet, I remain firm in my commitment to this endeavor.
Actually, I am already a writer and have been for a very long time. The difference in the last few years is that I have come out of the closet. When Jim was stricken with cancer, I started my e-mailing from Houston to keep a few friends and family members apprised of his condition. Those letters were really outpourings of my innermost feelings as I searched for strength and direction from God. When I talked with the recipients of these e-mails I was astounded by their responses. I realized that God was using my talents to speak to others. Opening up, making myself vulnerable to the judgment of others was difficult for me but I received so much affirmation from the writing that I believed that God wanted me to do this. The writing was cathartic for me and it seemed to be a blessing for some who read it. The list grew and I continued to write about the many aspects of the cancer journey.

Now I feel that God wants me to do something more with this. I am still reticent about sharing my thoughts with others but I believe that God expects us to make judicious use of our gifts. How can we do that if we hide them under a bushel? A writer needs an audience as does a singer or a pianist. I have not been a very good steward of the gifts God has given me. I hope that I can set that aright in the time I have left.

book ideas

2007-11-13T09:56:00.000-08:00

Some of you don’t know that I am planning to write a book. I have been writing all sorts of things for the past year. Now the question becomes, “How do I bring it all together?” I have the letters that I have written from Houston dealing with the cancer experience from the caregiver’s side. That topic, however, seems so overdone. I can’t imagine that I have anything new to add.
I also thought about writing a sort of memoir about the “sandwich generation” which would include experiences in caring for aging parents, children and spouses. The problem with any sort of memoir is that it smacks of preoccupation with self. The market is flooded with them. Personally I like to read them but then I like to read most things that are well written. I even had a title picked out “Growing Up Boomer”, since I was born in the first year of the post war boom. I was deflated when I read that Cristopher Buckley came out with “Boomsday” and Tom Brokaw with “Boom”. Glad to know I had a timely idea, sorry Tom beat me to the punch. What bad luck!
Whatever I plan to write I’d better get with it or I’ll be dead before I can finish!

the unexpected

2007-11-13T09:10:00.000-08:00

Mom has been home for two weeks now and it has been a time of ups and downs. Just about the time I begin to relax, she has another setback. A week ago she fell in the morning before Diane got there at 8:30. Thank God, she wasn’t hurt but the fall really shook her self confidence. She was terribly discouraged and said that day was the very worst day she has had since this all started. We went back to staying with her round the clock for 3 days. A week later she called in the middle of the night because she was sick. I was afraid she would have to go back to the hospital but she was fine the next day.

This echoes the cancer experience in that I have to learn to expect the unexpected. I don’t know of anyone whose cancer recovery or treatment has progressed smoothly without setbacks. This is the same. My mother is almost 90 years old. She is going to die—probably not from this broken hip but from something in the next few years. Even if she lives another 10 years her health is not going to get better. The longer she lives the more likely physical and mental decline become. I must accept this, and like her, adjust to living with the new normal.

Answered Prayer

2007-10-30T19:09:00.000-07:00

I want to update you on my mom. She came home, to her own home, Friday. Nicole came in from Birmingham and stayed with her until Sunday at 2 when I took over. She is doing very well, so happy to be home and reconciling herself to the fact that she will have some permanent limitations. Her faithful cat has not left her side. Perhaps he is, as Chris suggested, wracked with guilt. God has certainly answered our prayers, not only in allowing her to return to her home, but in providing all of the care that we have needed—and as always, above and beyond what we asked for. The woman that we have hired to stay with her is a wonderful Christian woman who lives near Holly Springs but is willing to drive here twice a day, 8:30 to 12:30, and 5-9. We think that Mom will be able to stay by herself the rest of the time. We have known Diane’s family for a few years and know that her willingness to work for and with us is an answer to prayer.
Most importantly God has answered my prayers and given me patience, energy, and willingness to do what needs to be done. Once again He has been faithful to equip me for the job He has laid before me. This is no mean feat because as I told you earlier I am not by nature suited to caring for the elderly. This doesn’t mean that I am ready for sainthood. I’m sure that there will be days ahead when I am burdened, short-tempered and complaining but I can truthfully say that God has worked a miracle in me, maybe not as magnificent as the parting of the Red Sea, but a miracle just the same.
I have just begun the next course in care giving taught by the Master himself. I’m not a stellar student but, praise God, I have patient and forgiving teacher.
Under His tutelage,
Cyndi
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caring for an aging parent

2007-10-24T15:44:00.000-07:00

I think that when we see an aging parent or an aging anyone, we see what lies ahead for us, and that prospect is frightening. Who will take care of us and how will they feel about it? My kids have already said that they are not looking forward to taking care of me because I am high maintenance now. Nicole and Tara said need to start soon to find a nursing home with good feng shui where they don’t wake the patients before 8 A.M and where they serve gourmet health food. For my part I have promised to keep my own teeth. Thank you very much, Carl.
Our parents are a buffer between us and death. Irrationally it seems that as long as we have a living parent we are protected from the grim reaper. I know that when Mom goes I become the oldest generation. Oh my gosh!! All of the vitamins, spas, plastic surgery, and good clean living won’t stop the inevitable. Yep, I am going to get old and feeble.
The role reversal is hard to absorb. When we care for our infants we expect them to be helpless and we even enjoy their dependence on us. I never objected to changing baby diapers and what is sweeter than a baby drooling while she sleeps? Obstinacy in a 3 yr old is expected and tolerable but in an adult it’s a little harder to take. I expect my 2 yr old not to understand all that I am saying but I’m not used to having to repeat or explain things to my very intelligent mother whose though processes continue to slow down. I want to shake her and say, “Stop it! You are scaring me. I just told you that 5 minutes ago. Please continue to be the same mother you have always been.”
When I get irritated with Mom and my patience is thin, I remember all that she has done for me –not just the expected things that all mothers do but the above and beyond things—like when I was 4 and the neighborhood bully, Mickey Bador, wouldn’t let me ride his sled, she raided the mad money that she was saving for a dress in the “will call” at Helmans to buy me my own sled,or the times she cut ALL the fat off my meat even though my dad said a little fat wouldn’t hurt me, and the time she came to get me after 2 days of overnight camp over the objections of my no-nonsense grandmother, saying, “there will be plenty of things she has to do in life and this is not one of them”, and all of the times that she gave me what she ordered and ate my hamburger because I liked what she ordered more. So I’ll wipe her mouth and clean her teeth and bring her fudge sundaes and real cokes in a bottle and thank God that I still have a mother to take care of.

Taking care of Mom

2007-10-23T10:49:00.000-07:00

Back to the subject of caregivers. Many of you on this mailing list are caring for your spouses who are going through cancer treatment. Others are caring for aging parents. Most of the experiences that I discussed in my letters from Houston are common to both, but for me there are some notable differences.
When I was caring for Jim, I was fatigued but I was so thankful that I was at a place in my life where I could drop everything and devote myself to taking care of him. I am no martyr. God gave me supernatural energy to do what needed to be done. I had it easy—no job to hold down, no children at home to care for, plenty of emotional support. Honestly, it was a wonderful time when I felt safe in the hand of God.
Taking care of my mother is very different. While she is sick my life goes on. I have other obligations—a husband at home, grandchildren to care for. When Jim was sick I never felt torn. I was with him every minute because I wanted to be and because I could be. I did nothing from a sense of duty and I had no reason to feel guilty.

With Mom I do feel guilt. It’s surprising because she never used guilt to manipulate me. Yet I feel guilty when I am short with her, guilty when I don’t want to stay with her, and guilty because I’d rather be doing a whole bunch of other things. I feel like the very bad daughter of the very good mother. My hat goes off to Sharon, who cared for her father who had Alzheimers, and now takes care of her mother and mother-in-law, and to Margaret Anne who stepped up to the plate to take care of her Grandmommy, aunt, great-aunt, and finally moved in with her dying mother to care for her day and night,
to Susan who has spent years caring for her daughter, to Sharyn Owen, Fairfax, Linda, and all of the others on this list who responded to my e-mails with stories of their own experiences. I know that what I am going through now is nothing new or unusual. Im sure that if we had been privy to a family discussion in Bedrock we might have heard a middle aged Pebbles and Bambam discussing what was to be done with the widow Wilma who was found wandering the streets minus her leopard skin.
Really I think I should write a book about this phenomenon in our generation. It’s nothing new, of course but as baby boomers we are more likely to deal with it as life expectancy increases.

Caretakers

2007-10-22T17:09:00.000-07:00

I can't believe that I actually have a blog. It is even harder to believe that someone will actually read it. Chris set this up for me a few weeks ago but my technical anxiety has kept me from using it. I will be sending this to all of you on my Houston mailing list. According to Chris, my computer guru, this format will enable others to read the comments that all of you make. Or you can just read --no comment required.
I'm becoming such a technocrat I'll soon be using "myspace".
Cyndi

New blog

2007-10-14T16:26:00.000-07:00

This is my new blog. Look for more later.