When one is diagnosed with cancer, all sorts of things flash in our brains - rail thin bald people, iv poles, scars, doctors, hospitals, hospices. All sorts of things loom in our future - medical tests, things that pinch, chemotherapy, and ugly hospital gowns with a draft in the back.
One of the key players in any cancer journey is the oncologist. Oncologists provide hope, direction, leadership and optimism. They offer treatment protocols to heal us, they provide solutions to treatment side effects, they provide answers to our questions.
They do offer optimism as I said. I read this article on an oncologist and his views of optimism a few days ago and have been thinking about it, mulling it through my brain.
What is optimism for an oncologist faced with a patient with advanced cancer? A few weeks/months of symptom free existence? They know what they are providing - a chance at a little longer.
As a patient our desire for optimism is a little different. I know someone who is a stage IV ovarian cancer person of over 30 years and still going strong. I had another friend who was a stage IV breast cancer person for more than 17 years. Those are the optimistic numbers a patient might take comfort in. But is that what an oncologist offers us? Not really. They measure time in weeks and months, taken in stages until the next round of tests to check for progression.
Is stage IV cancer existence a happy one? Not really. From what I have seen is it is a long adventure in the chemo for life program with changing treatment protocols, CT scans with no concern for lifetime exposure rates, and regular blood work done on burnt out blood vessels.
A patient upon first cancer diagnosis gradually learns to be as optimistic as they can based on their own medical journey. Some are much easier than others. But an optimistic oncologist always provides the guidance. We might just wish they too were looking at years instead of weeks and months.
Showing posts with label optimism. Show all posts
Showing posts with label optimism. Show all posts
Carpe Diem vs. The Future
An oncologist advises his stage four patients to 'Carpe Diem' or 'Seize the Day'. This is good advice for anyone: don't just sit there, do something. Or get off your butt or any of a multitude of other definitions.
I like an optimistic oncologist. I am going to see mine today and don't expect any real doom and gloom. Optimism is always good but the patient's thoughts need to be considered as well. The oncologist thinks the patient is doing well as they cope with cancer treatment but at stage IV its not a disease that is going to go away and will in fact eventually probably do them in. The future takes a different tone.
An early bird does catch the worm because life isn't coming to you if you don't make the most of it. I try to make the most of my life. I really do. I mean sometimes I can be the biggest procrastinator and firmly believe the road to hell is paved with good intentions. But I do try to take advantage of life and do what makes me feel best.
Then throw in a stage four, or any cancer diagnosis, and the future always looks a little bit different than before. And the silly questions, if I have cancer why am I saving for retirement? Or will I be here to trade in my suburban sedan in a few more years, or should I start using it for off road adventures? Is it time to write and complete my bucket list?
Once you receive that cancer diagnosis, you get an oncologist. Once you meet your oncologist, they need to be optimistic. So carpe diem. And look to the future.
I like an optimistic oncologist. I am going to see mine today and don't expect any real doom and gloom. Optimism is always good but the patient's thoughts need to be considered as well. The oncologist thinks the patient is doing well as they cope with cancer treatment but at stage IV its not a disease that is going to go away and will in fact eventually probably do them in. The future takes a different tone.
An early bird does catch the worm because life isn't coming to you if you don't make the most of it. I try to make the most of my life. I really do. I mean sometimes I can be the biggest procrastinator and firmly believe the road to hell is paved with good intentions. But I do try to take advantage of life and do what makes me feel best.
Then throw in a stage four, or any cancer diagnosis, and the future always looks a little bit different than before. And the silly questions, if I have cancer why am I saving for retirement? Or will I be here to trade in my suburban sedan in a few more years, or should I start using it for off road adventures? Is it time to write and complete my bucket list?
Once you receive that cancer diagnosis, you get an oncologist. Once you meet your oncologist, they need to be optimistic. So carpe diem. And look to the future.
I have lots of optimistic reading to do today
I can't blog about these articles because:
A. Its too early in the day and my brain is not awake enough to absorb them.
B. I slept really badly last night and I am tired and crankiness may loom in my day.
C. They look long and complicated - a tad daunting, see A and B above.
But here are links to them:
Drug Aims to Make Several Types of Cancer Cells Self Destruct - http://www.nytimes.com/2012/12/23/health/new-drugs-aim-to-make-cells-destroy-cancer.html?ref=science&_r=1&
Is the Cure for Cancer Inside You? - http://www.nytimes.com/2012/12/23/magazine/is-the-cure-for-cancer-inside-you.html?pagewanted=1&_r=3&hp&
I promise to read them, digest them, and give you my opinion in the coming days.
I slept really badly because things hurt. Let me count the ways - back, hips, shoulder, elbow, feet, and hands. I don't think I left anything out but I might have. Oh yes, there was the overly friendly cat who kept on doing donuts on the bed over me. I think he was hungry. But he was annoying.
Its a good thing I have optimistic reading to do today because where does one's mind go when one is awake in the middle of the night? Down that DARK AND EVIL ROAD. You know the one. The one that asks things like:
- the pain isn't because of RA and fibro, its must be the return of the evil cancer cooties.
- when is my next doctor appointment, who is it with and what questions do I have to ask them?
- did I forget to get anyone's Christmas gift?
- and lastly why didn't I balance the check book since the mortgage is due later this week?
But I digress. I will optimistically read later today. First I need to finish waking up, go to the grocery store, and then to the gym. And take a nap.
PS the picture at the top of my blog is from our hotel room window at sunrise at Southport, ME in September.
A. Its too early in the day and my brain is not awake enough to absorb them.
B. I slept really badly last night and I am tired and crankiness may loom in my day.
C. They look long and complicated - a tad daunting, see A and B above.
But here are links to them:
Drug Aims to Make Several Types of Cancer Cells Self Destruct - http://www.nytimes.com/2012/12/23/health/new-drugs-aim-to-make-cells-destroy-cancer.html?ref=science&_r=1&
Is the Cure for Cancer Inside You? - http://www.nytimes.com/2012/12/23/magazine/is-the-cure-for-cancer-inside-you.html?pagewanted=1&_r=3&hp&
I promise to read them, digest them, and give you my opinion in the coming days.
I slept really badly because things hurt. Let me count the ways - back, hips, shoulder, elbow, feet, and hands. I don't think I left anything out but I might have. Oh yes, there was the overly friendly cat who kept on doing donuts on the bed over me. I think he was hungry. But he was annoying.
Its a good thing I have optimistic reading to do today because where does one's mind go when one is awake in the middle of the night? Down that DARK AND EVIL ROAD. You know the one. The one that asks things like:
- the pain isn't because of RA and fibro, its must be the return of the evil cancer cooties.
- when is my next doctor appointment, who is it with and what questions do I have to ask them?
- did I forget to get anyone's Christmas gift?
- and lastly why didn't I balance the check book since the mortgage is due later this week?
But I digress. I will optimistically read later today. First I need to finish waking up, go to the grocery store, and then to the gym. And take a nap.
PS the picture at the top of my blog is from our hotel room window at sunrise at Southport, ME in September.
Communication, optimism, and honesty
A recent study at the Dana Farber in Boston (because we needed another study to keep the researchers busy) looked at late stage lung and colon cancer patients and their thoughts on being cured and on their doctor. Two very interesting points were raised:
Do patients rate their doctors as better communicators because they provide a more optimistic message? So if the information is more in line with what the patient wants to hear is the doctor considered to be a better communicator? But if the doctor is more honest, the patient considers them a worse communicator because they are being told things they don't want to acknowledge?
A sugar coated doctor appointment isn't really a good thing. I want the truth. I have even been known to pull together every brave little molecule in my body and ask my oncologist what my prognosis is. Sometimes the truth isn't pretty but I think its needed.
I know not everyone is the same as me in wanting to hear the truth and doctors do not necessarily know the patients will react to news. I think they assume have to gauge what they say based on what the patient says. I make sure I ask the direct questions so I get the direct answers in return.
I do not want to have a rosy picture of life if it isn't going to be that way. I can't digest and cope with bad news if its sugar coated. I have to adapt to reality and then learn how to make lemonade with my latest life lemons.
- "They found that 69 percent of patients with metastatic lung cancer and 81 percent of ¬patients with advanced colo-rectal cancer reported that their chemotherapy might be curative, despite the fact that the drugs were extremely unlikely to cure their cancer."
- Patients who thought their doctors were worse communicators were more likely to have a realistic view of the potential benefit of their treatment.
Do patients rate their doctors as better communicators because they provide a more optimistic message? So if the information is more in line with what the patient wants to hear is the doctor considered to be a better communicator? But if the doctor is more honest, the patient considers them a worse communicator because they are being told things they don't want to acknowledge?
A sugar coated doctor appointment isn't really a good thing. I want the truth. I have even been known to pull together every brave little molecule in my body and ask my oncologist what my prognosis is. Sometimes the truth isn't pretty but I think its needed.
I know not everyone is the same as me in wanting to hear the truth and doctors do not necessarily know the patients will react to news. I think they assume have to gauge what they say based on what the patient says. I make sure I ask the direct questions so I get the direct answers in return.
I do not want to have a rosy picture of life if it isn't going to be that way. I can't digest and cope with bad news if its sugar coated. I have to adapt to reality and then learn how to make lemonade with my latest life lemons.
I got the d*mn memo
The current advice is to be 'Fit by 40'. Because as you age its harder and harder to lose weight and to stay in shape. As my 40th birthday approached, I told myself that I would take better care of myself when I was in my 40s.
As part of my birthday celebration (which included a planned Caribbean vacation):
So I did get the damn memo on being fit at 40 and take care of my health. Its not my fault everything else happened and put me in my current dilapidated state. But before I start the 'woe is me' mentality, I will say I am proud of myself for some of the things I have accomplished in that time.
As part of my birthday celebration (which included a planned Caribbean vacation):
- I joined a gym
- I got my first skin cancer checkup
- I joined a dating service after several years of being single (and met my husband)
So I did get the damn memo on being fit at 40 and take care of my health. Its not my fault everything else happened and put me in my current dilapidated state. But before I start the 'woe is me' mentality, I will say I am proud of myself for some of the things I have accomplished in that time.
- I learned to kayak and snow shoe
- I took up knitting and crocheting and hope to sell some items in a local store this fall
- I greatly increased my medical vocabulary
- I took a weedy neglected garden at the house we bought and now can say it will bloom from February through November (no small feat in southern New England)
- I made lots of new friends both on and off line
- I started a little blog.
- I think I just made lemonade out of life's lemons.
Wishing for what isn't
I came across an article and video from a young mother dying of cancer who wants the FDA to release a drug for her that might help her live a little longer. (I admit I didn't watch the whole video.) The article wanders on and discusses the costs of having cancer which is a completely separate, but very important, issue that I won't get into here today. Probably another day that will end up here, again.
While I feel for this young mother who is dying of cancer, I would like to make a point here. She is pleading with the FDA to release a drug which might extend her life. The article notes at the end that the drug manufacturer is working with her doctors on getting her the medication.
But my point is that we can wish for everything we want but we can't assume that we will get what we want and that it will help us the way we want. At every cancer or other icky diagnosis, we wish they could make it go away. But wishes don't solve problems.
As cancer people, we want to be optimistic as we go through treatment. We hope that with every treatment all the evil cancer cooties in our bodies are being killed off. We dream of the days when we have hair, can eat a meal without fighting nausea, and all our treatments and surgeries are done. Optimism goes a long way in treatment. It keeps us positive.
I also think that wishes can cloud our judgement. We can't wish for things that don't exist. We would like to have that cancer free world that exists in Star Trek but we aren't there yet.
This young mother is getting the drug she believes will give her more time before dying. But do we know if it will really work for her and relieve her pain and let her live a little longer? No we don't. So she gets her wish but there is no guarantee.
While I feel for this young mother who is dying of cancer, I would like to make a point here. She is pleading with the FDA to release a drug which might extend her life. The article notes at the end that the drug manufacturer is working with her doctors on getting her the medication.
But my point is that we can wish for everything we want but we can't assume that we will get what we want and that it will help us the way we want. At every cancer or other icky diagnosis, we wish they could make it go away. But wishes don't solve problems.
As cancer people, we want to be optimistic as we go through treatment. We hope that with every treatment all the evil cancer cooties in our bodies are being killed off. We dream of the days when we have hair, can eat a meal without fighting nausea, and all our treatments and surgeries are done. Optimism goes a long way in treatment. It keeps us positive.
I also think that wishes can cloud our judgement. We can't wish for things that don't exist. We would like to have that cancer free world that exists in Star Trek but we aren't there yet.
This young mother is getting the drug she believes will give her more time before dying. But do we know if it will really work for her and relieve her pain and let her live a little longer? No we don't. So she gets her wish but there is no guarantee.
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