If I divide my treatment into parts, it seems like I am at least two thirds of the way through: Part 1) Diagnosis and surgery; Part 2) Chemotherapy; Part 3) Radiation. It’s the old familiar cut, poison and burn. Still, I think there is a fourth part. I call it “The Waiting”.
After all the treatments are over, an abyss opens. No appointments, no treatments, I’m no longer actively fighting the cancer. It feels like surrender somehow. It’s time to wait and see if the battle was won or lost. Will there be another battle? Did we get it all? What’s going on in there that I can’t feel and don’t know about?
Dr. Cho says we’ll do some blood work every three months but mostly we will wait to see if I am symptomatic. What does that mean? Well, since breast cancer typically spreads to bone, lung or brain, we will wait for bone pain, headaches or respiratory symptoms. I wonder how I will know the difference between these pains and my ordinary aches and pains and headaches. “They’ll be worse.” Dr. Cho answers.
During my previous experience with cancer, I remember the high anxiety before each follow-up CT Scan. Gradually, it got easier and I finally came to believe the cancer was gone. Really, truly gone. That is, I believed it until this new cancer showed up. I know they are not related. Not directly anyway. But it does make me wonder if I have poor defenses against those wayward cancer cells that all of us have floating around in our systems. Is it my diet? Would this have happened if I had eaten better or exercised more faithfully or is it just happenstance?
I know there are people who do everything “right” and still get cancer and, of course, we see the reverse of that: people who do absolutely everything wrong and live long enough to wish they had taken better care of their bodies. I’ve already experienced that regret. Certainly I could have/should have done more to keep my arms toned instead of flabby, and to firm my midriff. I seem to have misplaced my waist altogether.
I suppose a certain amount of decay and decline is inevitable but I do see plenty of women my age or older still active and able to make their bodies obey their commands. They dance, hike, bike, run, compete and seem at home in their bodies. They travel the world, take cruises, see the sights from high places that they manage to climb with nary a complaint from hips, knees and feet. Is it just luck of the draw? Did they get issued better equipment at the starting gate? Or do they have invisible burdens, unknown ailments and painful memories?
I’m ashamed of my envy. I don’t want less for them. I want to celebrate their accomplishments and enjoy their activities even if it is only vicariously. I want to make plans for myself and to believe I will be able to live normally again. I want my life to stop getting smaller.
Perhaps it is silly to think there is some sort of cosmic balance or fairness to our existence. One need only open a paper or turn on the television to witness the truth that the world is full of extraordinary unfairness and injustice. That makes me think that it’s much more important to focus on our good fortune than on the things we wish we had. Why is that so hard to do?
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Sunday, August 30, 2009
Side Bar
It’s been a long time since I’ve posted to my blog. That is partly because I have been tired and caught up in treatment and treating the effects of treatment and partly because I couldn’t get past my own dark thoughts to write in what I consider my “true voice” which is one of hope and optimism. It now occurs to me that there is little use writing a blog to share my feelings if I edit out all the unacceptable feelings. I’ll try to keep Little Miss Sunshine in check but she’s pretty deeply embedded so I will have to resist her editing.
Thursday, August 6, 2009
Hitting the Wall
This has nothing at all to do with Pink Floyd for those of you who remember his wall.
We have long used the term “hitting the wall” for saying, “I’m out of energy and done for the day”. Going through cancer treatment has redefined the wall. It is more impenetrable than before--a solid resistance to any activity whatsoever. What once was more like an encounter with a giant Sponge Bob it now more like a true wall, not a suggestion of a wall but very real rock and mortar WALL.
My daughter who suffers a long term chronic illness insists on wrestling with her wall. Getting the coffee pot set up the night before, putting those last few evening dishes in the dishwasher, doing those last few housekeeping chores that she doesn’t want to wake up to in the morning, just one more thing before she can let herself fall into bed. Sometimes she completes her tasks barely conscious or coherent. But for her it means she has won a small victory over the wall. The thing is, the wall doesn’t to like to be defeated. If will come around and get you some other way if you don’t respect it.
It’s a bitter pill to swallow when routines that were easily accomplished just months ago are now too much to do. I can’t help wonder how I got so much weaker and whether or not my strength will come back again. It’s one thing to accept that I can’t do what I could at 35, 45 or even 55, but what about just a few months ago. My routine activities from my previous life now seem like a hectic, busy whirl of action, movement and involvement.
I know things will change when my treatment is done. My strength will return and then I will get to decide how much of my past activity and commitments I can comfortably resume. I will do what my brave friend LaVae has done—reinvent my life. I am convinced that this is something we should do periodically and it shouldn’t take a life threatening illness or a major upheaval in our lives to persuade us to do it.
Things change—we change. The wall is just a reminder that what you can’t get through you may have to go around or outsmart. This is when you have to call up all your resources. Yes, the internet helps, but your best resource is your friends. You may not know why you picked such an interesting variety of friends but it is because one of them will have the answer to almost every problem you face. Time to cal them up, invite them over, send them an e-mail. And, zap, just like that an answer comes back that will put you on the right track.
If you don’t already have a circle of amazing smart friends, get started creating one. They will become more important than doctors or advice books in getting you through anything that turns your life upside down. Never underestimate the power of the wall to thwart you but NEVER ever underestimate the power of friends to get you over under around or through that wall.
.
We have long used the term “hitting the wall” for saying, “I’m out of energy and done for the day”. Going through cancer treatment has redefined the wall. It is more impenetrable than before--a solid resistance to any activity whatsoever. What once was more like an encounter with a giant Sponge Bob it now more like a true wall, not a suggestion of a wall but very real rock and mortar WALL.
My daughter who suffers a long term chronic illness insists on wrestling with her wall. Getting the coffee pot set up the night before, putting those last few evening dishes in the dishwasher, doing those last few housekeeping chores that she doesn’t want to wake up to in the morning, just one more thing before she can let herself fall into bed. Sometimes she completes her tasks barely conscious or coherent. But for her it means she has won a small victory over the wall. The thing is, the wall doesn’t to like to be defeated. If will come around and get you some other way if you don’t respect it.
It’s a bitter pill to swallow when routines that were easily accomplished just months ago are now too much to do. I can’t help wonder how I got so much weaker and whether or not my strength will come back again. It’s one thing to accept that I can’t do what I could at 35, 45 or even 55, but what about just a few months ago. My routine activities from my previous life now seem like a hectic, busy whirl of action, movement and involvement.
I know things will change when my treatment is done. My strength will return and then I will get to decide how much of my past activity and commitments I can comfortably resume. I will do what my brave friend LaVae has done—reinvent my life. I am convinced that this is something we should do periodically and it shouldn’t take a life threatening illness or a major upheaval in our lives to persuade us to do it.
Things change—we change. The wall is just a reminder that what you can’t get through you may have to go around or outsmart. This is when you have to call up all your resources. Yes, the internet helps, but your best resource is your friends. You may not know why you picked such an interesting variety of friends but it is because one of them will have the answer to almost every problem you face. Time to cal them up, invite them over, send them an e-mail. And, zap, just like that an answer comes back that will put you on the right track.
If you don’t already have a circle of amazing smart friends, get started creating one. They will become more important than doctors or advice books in getting you through anything that turns your life upside down. Never underestimate the power of the wall to thwart you but NEVER ever underestimate the power of friends to get you over under around or through that wall.
.
Friday, July 31, 2009
FOUR DOWN - NONE TO GO!
I had my last chemo treatment yesterday and would be doing cart wheels if I wasn’t so tired. They couldn't get the right vein to get the IV in but finally found one that sort of worked. Then they had to move to another one for the Adriomycin because it's so toxic. We were there almost five hours. I was able to doze in and out part of the time. Our friend Tami took me to the treatment because Chuck was too sick to drive. He is still recovering from a bout with food poisoning over the weekend. Tami got me back home and I crashed on the couch for a while and then went to bed. This is my last chemo thank goodness and now all I have to do is rest and get my energy back for a while. I go in August 18th to get "mapped" for my radiation. My body just wants to sleep and I guess that is a good thing. I will try to rest and relax and make the most of the time I have before beginning the next phase of treatment which will involve driving to town and back every week day for six and a half weeks. SIGH…
Friday, July 17, 2009
Limited Benefits of Cancer Screening
There was an article in the New York Times today with this headline: In Push for Cancer Screening, Limited Benefits. Why they didn’t say, “Limited Benefits in Push for Cancer Screening” is a topic for another time.
The thrust of the article is that the benefits of various screening tests including mammograms, PSA tests, colonoscopies, etc. is questionable. The cost of mammograms alone is an estimated $4 billion dollars a year. Following are excerpts of key points. For the full article, go to the New York Times website.
There are a fairly large number of comments after the article. They mainly fall into two categories. The first group takes a pragmatic approach supporting the idea of less screening to save money. The second group consists of people who were saved by early detection or lost family members due to lack of early detection. They personalize the issue and think that awareness and early detection are valuable tools in the fight against cancer.
On a personal level, I have to wonder how I would have felt if, after discovering my lump, I had been told that it would be wise to “track” it for six months before deciding on a course of action. I would have to say that I fall into the category of people who think I would rather be “doing something” than taking a “wait and see attitude”.
We could really save a lot of money if we only tested people during their “productive” years and maybe backed off testing and treatment after a certain age. Oh, say, 69 or even 79. If we are objectively talking about how to dispense limited medical care that might make sense in the abstract, but what if you or your mother are sister fall into the “don’t bother” category?
Personally, I would much prefer being given a reasonable interpretation of the odds of treatment vs. no treatment and make the choice for myself. One part of the article indicates that people might be happier in general if they didn’t know until it was too late to do anything because they would save themselves anxiety and stress. Ignorance is bliss? I don’t think so.
.
The thrust of the article is that the benefits of various screening tests including mammograms, PSA tests, colonoscopies, etc. is questionable. The cost of mammograms alone is an estimated $4 billion dollars a year. Following are excerpts of key points. For the full article, go to the New York Times website.
“According to Dr. David H. Newman, author of the book “Hippocrates’ Shadow: Secrets from the House of Medicine.” Some of those tests cause false alarms that lead to unnecessary follow-up surgery on normal breasts, at a cost of $14 billion to $70 billion over a decade, according to Dr. Newman, the director of clinical research in the department of emergency medicine at St. Luke’s Roosevelt Hospital Center in Manhattan.
Cancer awareness campaigns can be a disservice to the public by making people overestimate their risk of dying from cancer, according to Dr. Steven Woloshin, a researcher at the Dartmouth Institute for Health Policy and Clinical Practice. Thyroid cancer, for example, is a rare disease that kills an estimated 1,600 Americans a year. But the campaign called “Check Your Neck” makes it seem as if everyone should worry about the disease, Dr. Woloshin said. But there is no evidence that routine neck exams reduce the risk of dying from thyroid cancer, said Dr. Barnett S. Kramer, the associate director for disease prevention at the National Institutes of Health, which has a cancer Web site describing the potential benefits and risks of many cancer screening tests. Most thyroid cancers are so slow-growing and curable that early detection would not improve their prognosis, he said, while a rarer form of thyroid cancer is so aggressive that a surge in screening would be unlikely to have an impact on the death rate.
Dr. Ned Calonge, the chairman of the United States Preventive Services Task Force said, “There are five things that can happen as a result of screening tests, and four of them are bad.” His group consists of independent medical experts that Congress has commissioned to make recommendations, based on medical evidence, about what preventive measures actually work.
The one good result of screening, Dr. Calonge said, is identifying a life-threatening form of cancer that actually responds to timely intervention. The possible bad outcomes, he said, are results that falsely indicate cancer and cause needless anxiety and unnecessary procedures that can lead to complications; that fail to diagnose an existing cancer, which could lull a patient into ignoring real symptoms as the cancer progresses; that detect slow-growing or stable cancers that are not life-threatening and would not otherwise have required treatment; and that detect aggressive life-threatening cancers whose outcome is not changed by early detection.
Experts like Dr. Calonge say screening is useful only if, on balance, the deaths prevented by treating cancers outweigh the harm done by treatments that are not medically necessary. The problem is, most current screening tests are not sophisticated enough to determine which cancers might not require treatment — or to predict which life-threatening cancers will respond to treatment.
There are a fairly large number of comments after the article. They mainly fall into two categories. The first group takes a pragmatic approach supporting the idea of less screening to save money. The second group consists of people who were saved by early detection or lost family members due to lack of early detection. They personalize the issue and think that awareness and early detection are valuable tools in the fight against cancer.
On a personal level, I have to wonder how I would have felt if, after discovering my lump, I had been told that it would be wise to “track” it for six months before deciding on a course of action. I would have to say that I fall into the category of people who think I would rather be “doing something” than taking a “wait and see attitude”.
We could really save a lot of money if we only tested people during their “productive” years and maybe backed off testing and treatment after a certain age. Oh, say, 69 or even 79. If we are objectively talking about how to dispense limited medical care that might make sense in the abstract, but what if you or your mother are sister fall into the “don’t bother” category?
Personally, I would much prefer being given a reasonable interpretation of the odds of treatment vs. no treatment and make the choice for myself. One part of the article indicates that people might be happier in general if they didn’t know until it was too late to do anything because they would save themselves anxiety and stress. Ignorance is bliss? I don’t think so.
.
Monday, July 13, 2009
Where's My Focus?
I flip through magazines and books trying to get insights and information but end up not remembering what I’ve read. I try to watch a tv show, but the plot makes no sense to me. Books that I would usually devour and enjoy don’t capture my interest. Organizing a box of stuff or a room seems beyond my ability. Where did my focus go? Will it come back?
Our “Big” tv broke down and the bulb Chuck replaced fixed it for a day before it broke again. We scarcely finished the “Fixed It” dance before it wasn’t fixed again. Now it’s in the shop. It may or may not be fixable. I can relate to that.
The refrigerator decided ten years is long enough for it to chug along so it proceeded to defrost itself permanently. Chuck read up on the internet about the problems that seem to be pretty common in our ever so reliable Maytag. Turns out they are not so reliable after all. I can relate. He did all the suggested things and now there is one more part that might fix it. If not, we will be shopping for a new refrigerator. Didn’t refrigerators used to last much longer than ten years? Yeah, I thought so too.
Repair or replace. It’s frustrating but a fairly simple process. I wish my repairs were as easy. Where do we get the part that makes my focus work right again?
.
Our “Big” tv broke down and the bulb Chuck replaced fixed it for a day before it broke again. We scarcely finished the “Fixed It” dance before it wasn’t fixed again. Now it’s in the shop. It may or may not be fixable. I can relate to that.
The refrigerator decided ten years is long enough for it to chug along so it proceeded to defrost itself permanently. Chuck read up on the internet about the problems that seem to be pretty common in our ever so reliable Maytag. Turns out they are not so reliable after all. I can relate. He did all the suggested things and now there is one more part that might fix it. If not, we will be shopping for a new refrigerator. Didn’t refrigerators used to last much longer than ten years? Yeah, I thought so too.
Repair or replace. It’s frustrating but a fairly simple process. I wish my repairs were as easy. Where do we get the part that makes my focus work right again?
.
Saturday, July 11, 2009
Kindness Has Many Faces
I was going to title this “How to Ask For What You Need” but I thought that might imply that I have some answer to the question. Unfortunately, I don’t have the answer. I threw the question out to some friends and didn’t get much response. Perhaps I’m not the only one who has trouble asking for what I want.
Kindness has so many faces. It’s such a wonderful blessing when someone simply intuits a need and fills it. Like when my friend Tami says “I’m coming over to work in the yard for a couple of hours. Just tell me where to start.” Or my friend Dale says, “I’m bringing dinner. Is there anything you can’t eat?” It’s a wonderful thing when my friend Brence asks “Where’s your favorite lotion? You need a foot rub.” Or Vera says, “How about a little cribbage? I’ll bring dinner.” Things like that can almost bring me to tears.
My high school friend Ruth visited recently just to “BE” with me. She is very good at that. She helps me feel less tethered to be present and worried about the future. We lost ourselves in an afternoon of just being. It’s a rare gift.
My friend Kizzie gave me another version of “being”. When I got my first cancer diagnosis in 1996, she was the chaplain at the hospital where I had my surgery. She appeared in my room and said, “I hear you had some bad news. May I sit with you?” She sat by my bed and held my hand and let me cry. She didn’t offer a single platitude or quote scripture. She just sat until my husband returned and took over. The fact that I still remember her precise words, says exactly how much they meant to me that day.
Of course those are all the ones who know what to do. It’s harder when someone says, “Let me know if there’s anything you need.” I’m beginning to think I should have a check list ready and offer people an assignment but usually I’m too caught by surprise to actually suggest anything. I’ve decided that if I’m ever in the position of having a number of people offer help I should have a sign up list that includes their name, phone number and skills. This might seem crass but it’s definitely practical. Or maybe I should “just happen” to have a list available to pull out of my purse like a rabbit out of a hat.
I do think people really mean it when they offer, they just don’t know what to suggest and neither do I. There’s got to be a better way.
It gets even harder when the person I need something from is close to me. I want them to just know what I need and when I need it but that’s unrealistic. People can’t read minds and get frustrated trying.
When my husband asks what I need, I usually end up giving some vague answer that includes things like warmth, affection, patience and kindness. These are wonderful attributes, but they aren’t specific things that I would like him to do: like make me a baked sweet potato, cuddle me on the couch, rub out the kinks in my shoulders. Why are those things so much harder to ask for? I think the reason they are harder is because I am afraid my request might not be honored. Then I will feel rejected or frustrated. Sometimes, I think I’m not worthy enough to ask for such frivolous things. I’m not sure which is stronger: my fear of rejection or my sense of unworthiness. Both play a big role for me.
My friend Joyce gave me an excellent list to use as a tool when asking for something. Here are a couple of things the lists suggests:
1) Be clear about what you want
2) Listen for alternatives or compromises
3) Do not apologize for asking
4) Do not act helpless
5) Do not whine
6) Do not exaggerate or downplay the importance of your request
7) Decide in advance that a “No” answer may have nothing to do with you
8) Do not blame or lecture if you don’t get what you want
9) Remember, your request is worthy even if you cannot get that need met the first time you ask
This is an excellent starting point for asking for what you want, but it begs the question as to how I get to the point that it feels so hard to ask for anything. Why do I think that others will be angry with me if I ask for anything for myself? This is one of the quotes in the paperwork that Joyce shared with me: “At all costs, I must avoid making statements and asking questions that might make me look ignorant or stupid.” Wow, did that jump out at me. I could almost hear my step-father’s voice. His favorite word was “asinine”. My questions were almost inevitably asinine. I have no idea if he actually thought what I asked was stupid or if he didn’t know the answer or if he just didn’t want to be bothered. In any case, my questions were almost always asinine. It doesn’t take too long to learn to quit asking questions in those circumstances.
Joyce tells me that her mother often said, “Don’t bother me.” Through this experience she learned that she was a bother and to this day hates to “bother” people.
Here is another quote that jumped off the page. “I must be loved or approved by virtually every significant other person in my life.” Yikes! Here’s the real kicker. “My past history must determine my present behavior and because something once strongly affected my life, it must affect it indefinitely.” Bingo!
In my head I’m singing “Let the sun shine in.” Remember the Age of Aquarius? Yeah, I know, it’s been a long time but maybe it’s finally time for Jupiter to align with Mars again and for Edythe Ann to ask for what she wants. It could happen.
FOOTNOTE: I have decided that the very best “thing” anyone can offer is their time. Offer to be a personal assistant for an hour or ninety minutes. Specify if you have specific skills at cleaning, organizing, garden work or are just willing to show up and help where needed. That might even include serving tea and talking for an hour or so. If you bake the best pie in the valley, ask when it should be delivered. Sometimes, even if it means doing something you don’t like all that much, you could just put yourself in neural, show up and do it. It’s only for an hour after all.
.
Kindness has so many faces. It’s such a wonderful blessing when someone simply intuits a need and fills it. Like when my friend Tami says “I’m coming over to work in the yard for a couple of hours. Just tell me where to start.” Or my friend Dale says, “I’m bringing dinner. Is there anything you can’t eat?” It’s a wonderful thing when my friend Brence asks “Where’s your favorite lotion? You need a foot rub.” Or Vera says, “How about a little cribbage? I’ll bring dinner.” Things like that can almost bring me to tears.
My high school friend Ruth visited recently just to “BE” with me. She is very good at that. She helps me feel less tethered to be present and worried about the future. We lost ourselves in an afternoon of just being. It’s a rare gift.
My friend Kizzie gave me another version of “being”. When I got my first cancer diagnosis in 1996, she was the chaplain at the hospital where I had my surgery. She appeared in my room and said, “I hear you had some bad news. May I sit with you?” She sat by my bed and held my hand and let me cry. She didn’t offer a single platitude or quote scripture. She just sat until my husband returned and took over. The fact that I still remember her precise words, says exactly how much they meant to me that day.
Of course those are all the ones who know what to do. It’s harder when someone says, “Let me know if there’s anything you need.” I’m beginning to think I should have a check list ready and offer people an assignment but usually I’m too caught by surprise to actually suggest anything. I’ve decided that if I’m ever in the position of having a number of people offer help I should have a sign up list that includes their name, phone number and skills. This might seem crass but it’s definitely practical. Or maybe I should “just happen” to have a list available to pull out of my purse like a rabbit out of a hat.
I do think people really mean it when they offer, they just don’t know what to suggest and neither do I. There’s got to be a better way.
It gets even harder when the person I need something from is close to me. I want them to just know what I need and when I need it but that’s unrealistic. People can’t read minds and get frustrated trying.
When my husband asks what I need, I usually end up giving some vague answer that includes things like warmth, affection, patience and kindness. These are wonderful attributes, but they aren’t specific things that I would like him to do: like make me a baked sweet potato, cuddle me on the couch, rub out the kinks in my shoulders. Why are those things so much harder to ask for? I think the reason they are harder is because I am afraid my request might not be honored. Then I will feel rejected or frustrated. Sometimes, I think I’m not worthy enough to ask for such frivolous things. I’m not sure which is stronger: my fear of rejection or my sense of unworthiness. Both play a big role for me.
My friend Joyce gave me an excellent list to use as a tool when asking for something. Here are a couple of things the lists suggests:
1) Be clear about what you want
2) Listen for alternatives or compromises
3) Do not apologize for asking
4) Do not act helpless
5) Do not whine
6) Do not exaggerate or downplay the importance of your request
7) Decide in advance that a “No” answer may have nothing to do with you
8) Do not blame or lecture if you don’t get what you want
9) Remember, your request is worthy even if you cannot get that need met the first time you ask
This is an excellent starting point for asking for what you want, but it begs the question as to how I get to the point that it feels so hard to ask for anything. Why do I think that others will be angry with me if I ask for anything for myself? This is one of the quotes in the paperwork that Joyce shared with me: “At all costs, I must avoid making statements and asking questions that might make me look ignorant or stupid.” Wow, did that jump out at me. I could almost hear my step-father’s voice. His favorite word was “asinine”. My questions were almost inevitably asinine. I have no idea if he actually thought what I asked was stupid or if he didn’t know the answer or if he just didn’t want to be bothered. In any case, my questions were almost always asinine. It doesn’t take too long to learn to quit asking questions in those circumstances.
Joyce tells me that her mother often said, “Don’t bother me.” Through this experience she learned that she was a bother and to this day hates to “bother” people.
Here is another quote that jumped off the page. “I must be loved or approved by virtually every significant other person in my life.” Yikes! Here’s the real kicker. “My past history must determine my present behavior and because something once strongly affected my life, it must affect it indefinitely.” Bingo!
In my head I’m singing “Let the sun shine in.” Remember the Age of Aquarius? Yeah, I know, it’s been a long time but maybe it’s finally time for Jupiter to align with Mars again and for Edythe Ann to ask for what she wants. It could happen.
FOOTNOTE: I have decided that the very best “thing” anyone can offer is their time. Offer to be a personal assistant for an hour or ninety minutes. Specify if you have specific skills at cleaning, organizing, garden work or are just willing to show up and help where needed. That might even include serving tea and talking for an hour or so. If you bake the best pie in the valley, ask when it should be delivered. Sometimes, even if it means doing something you don’t like all that much, you could just put yourself in neural, show up and do it. It’s only for an hour after all.
.
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