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.
Wednesday, December 30, 2009
Thursday, December 10, 2009
Cancer's Rocky Road
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.
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.
Friday, November 20, 2009
Discouragement
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!
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!
Saturday, November 14, 2009
CPR for the Written Word
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.
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.
Monday, November 9, 2009
Requiem for the Written Word
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.
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.
Monday, November 2, 2009
A Covert Killer
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.
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.
Friday, October 23, 2009
Balloon crash
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.
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.
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