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.
Thursday, October 15, 2009
New Hope
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.
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
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.
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.
Thursday, October 1, 2009
same old tune
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.
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.
Tuesday, September 15, 2009
Courage
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.
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.
Saturday, September 12, 2009
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.
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.
Friday, July 17, 2009
The caregiver's caregiver (not)
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!
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!
Wednesday, July 1, 2009
The Good and Humble Samaritan
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.
Sunday, June 28, 2009
The Good Samaritan
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.
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
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.
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.
Monday, June 8, 2009
A Summer State of Mind
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.
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.
Friday, May 15, 2009
Thankfulness
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.
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.
Sunday, May 10, 2009
Survivor
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.
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
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.
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.
Tuesday, May 5, 2009
When it rains.....
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?
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?
Thursday, April 30, 2009
One more worry
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.
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.
Wednesday, April 29, 2009
At the Edge
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.
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.
Sunday, April 26, 2009
Chemo side-effects
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.
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
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.
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
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?
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
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.
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
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.
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
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
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
Tuesday, April 14, 2009
Caregiver Narcolepsy
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.
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
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.
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
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.
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.
Monday, April 13, 2009
Growing Older
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.
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
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.
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.
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