Lumbar fusion wasn't that long ago. September, 2012. I thought I would stay "normal" after I gave up the cane late last fall. Instead, I got non-invasive breast cancer. And, the last few days I've felt 100 years old. So right now I'm on hold with Barnes & Noble reserving a copy of Strong Women Stay Young. But I've owned it before, and it wasn't the whole answer for me.
Will every discussion like this for the next five years involve whether Tamoxifen is making me tired? Or making me ache? Or making me whatever? Mayo Clinic website lists sleepiness and lower back pain among its bushel of side effects. How can anyone know whether feeling old and achy is age or the medicine or not doing her exercises (I've only been walking lately.) Or all the above.
I want to be strong enough to take my laptop to Starbucks and sit there looking at the trees and people while I type up my notes. But moving my laptop around feels like carrying a German Shepherd.
True, my arms and upper body have never been very strong. Once I lived in a beach house with a loft that was accessed by a knotted rope. I only got up there once, with help. And the bit of physical therapy I had when the spine first went bad was for my lower body.
I do NOT want another Xray, but I do want a Physical Therapy assessment and/or maybe some very slow, very easy Pilates.
Okay, take action. I'm seeing my primary in a week. I can email the California surgeon (thank God for doctors with email) and ask once more if they found that Xray. I can ask my primary doctor to have an inspiration.
Caring for my health with Tamoxifen is mental exercise in a life skill I haven't always been great at: making the best possible change when I don't have any way of knowing all the facts.
Wednesday, April 30, 2014
Tuesday, April 29, 2014
WHO KNOWS WHAT ABOUT BREAST CANCER?
A notice I read this morning reassures me:
For eleven years now, there's been what I would call a symposium on breast cancer--experts presenting material on possible controversies in breast cancer practice. There is also an online reprise, and NPs, PAs, and many others including pharmacists, "and any other healthcare professionals interested in the treatment of breast cancer are invited to participate."
That last part is what caught my attention, because I read yesterday about conflicts in an area of health design because "specialists can be territorial." So "other healthcare professionals. . . are invited to participate" is heartening. This is the first of these meetings that I've checked out, so maybe that universal invitation is typical.
Since I lately went to a lunch/talk by an oncology pharmacist, now I know that she, too, can get this free continuing education.
Of course, it's voluntary. And I'll never know if a particular nurse absorbed it all, or even tried.
But it felt like a plus as I read about it. We do our best with our own research, but we hope that somebody may know something newer, better.
Be well.
For eleven years now, there's been what I would call a symposium on breast cancer--experts presenting material on possible controversies in breast cancer practice. There is also an online reprise, and NPs, PAs, and many others including pharmacists, "and any other healthcare professionals interested in the treatment of breast cancer are invited to participate."
That last part is what caught my attention, because I read yesterday about conflicts in an area of health design because "specialists can be territorial." So "other healthcare professionals. . . are invited to participate" is heartening. This is the first of these meetings that I've checked out, so maybe that universal invitation is typical.
Since I lately went to a lunch/talk by an oncology pharmacist, now I know that she, too, can get this free continuing education.
Of course, it's voluntary. And I'll never know if a particular nurse absorbed it all, or even tried.
But it felt like a plus as I read about it. We do our best with our own research, but we hope that somebody may know something newer, better.
Be well.
Monday, April 28, 2014
CANCER OR NOT-- What's in YOUR medicine cabinet? Do you need it/them?
Well, Dr. Salwitz and Sunrise Rounds dropped a bomb on me today! I spend so much time trying to be polite. And being urged by others to be more polite instead of forthright, that I dial it down sometimes when I should shout it out. I'm always grateful and impressed with his courage when he write to get our attention. (As I usually want to get yours.)
Today, his headline "Doctors: Say No to Drugs!" got my attention instantly. Except I thought he was going to talk about doctors using drugs. I
He opens with a slammer: The United States of America is addicted to narcotics.
I'm wanted to get your attention by saying he meant: the doctor as pusher. Our pusher.
But I think what he really says is: We are drowning in excess drugs and only the doctors can control the floodgates.
He talks about cancer patients, and how few drugs are necessary for cancer pain.
He talks about the rest of us.
We blame the parents when a kid goes shopping in the medicine chest, shares with his pals, and they all end up in the hospital - if they're lucky. But how did the parent get that pretty assortment?
We blame patients who raise a fuss until they (we) get the one we want, or get whatever pill to deal with our discomfort, or behavior, or awakeness. And did I forget to mention the shots for losing weight?
In my closet is a vial of yellow pills I will never take. Were they sent home from that first ER and admit after the pain kept me from walking? No, I think I had a prescription - but did my own doctor write it, did the spine surgeon write it, did some hospital doc write it? It was too strong, dangerously strong for me. But I digress.
He mentions pharma manufacturers who make billions, but continue to rave about new drugs that are not proven, and probably dangerous.
He mentions some narcotics by name, and I recognize the names of ones that people do swap, thinking they are helping that friend with the cast or the broken rib, or the broken heart. My mom had some with her in that other century, when my wedding was hours late starting.
He is tough tough on doctors here. I wish you would read some of it. I wish we all would not beg for something dangerous. I salute you who have flushed some.
Be well. And love conscientious doctors.
Today, his headline "Doctors: Say No to Drugs!" got my attention instantly. Except I thought he was going to talk about doctors using drugs. I
He opens with a slammer: The United States of America is addicted to narcotics.
I'm wanted to get your attention by saying he meant: the doctor as pusher. Our pusher.
But I think what he really says is: We are drowning in excess drugs and only the doctors can control the floodgates.
He talks about cancer patients, and how few drugs are necessary for cancer pain.
He talks about the rest of us.
We blame the parents when a kid goes shopping in the medicine chest, shares with his pals, and they all end up in the hospital - if they're lucky. But how did the parent get that pretty assortment?
We blame patients who raise a fuss until they (we) get the one we want, or get whatever pill to deal with our discomfort, or behavior, or awakeness. And did I forget to mention the shots for losing weight?
In my closet is a vial of yellow pills I will never take. Were they sent home from that first ER and admit after the pain kept me from walking? No, I think I had a prescription - but did my own doctor write it, did the spine surgeon write it, did some hospital doc write it? It was too strong, dangerously strong for me. But I digress.
He mentions pharma manufacturers who make billions, but continue to rave about new drugs that are not proven, and probably dangerous.
He mentions some narcotics by name, and I recognize the names of ones that people do swap, thinking they are helping that friend with the cast or the broken rib, or the broken heart. My mom had some with her in that other century, when my wedding was hours late starting.
He is tough tough on doctors here. I wish you would read some of it. I wish we all would not beg for something dangerous. I salute you who have flushed some.
Be well. And love conscientious doctors.
Sunday, April 27, 2014
FIRST VISIT TO A NURSE PRACTITIONER
I've known, since I worked for a medical malpractice insurance company in the 90s, that there were nurse practitioners NPs). I didn't know they were "advanced practice RNs" (APRNs) with much advanced training. I didn't know that the "...concept of the APRN as a primary care provider was created in the mid-1960s," says Wikipedia.
One morning recently, I learned they can be primary care providers when I had a strange skin inflammation under my breasts (including the radiated breast) and couldn't get in to see my doctor. The office could work me in with the NP. It was no time to hide from the unfamiliar. At least the NP was a woman.
During the couple of days before my appointment, I looked up the various skin rashes on line, and thought I found the culprit. My breasts are heavy, no longer perky, and the climate here is best called humid.
I like her as soon as she said "Hi." She's not a kid, and has the look, somehow, of experience. I was right about that. I told her my problem and a few things about me. She grabbed the ever-handy computer, which she worked like a pro, found my meds list, cleaned it out and updated it in a hurry. She made suggestions for keeping clean between showers in this climate: baby wipes. (Insisting that since they are for preventing diaper rash, I might like them better than my feminine wipes.)
I told her about my feet, also, and how I'd given up on finding a good podiatrist who knows all types of foot anatomy. She immediately gave me the name of one she'd worked with in the past!
She punched a few keys and sent a prescription to my drug store. Gave me a couple instructions for the cream.
We talked about OB/Gyn doctors and Well Woman exams.
I thanked her profusely, trying to express how great it felt to deal with not just a new problem, but with things long neglected during the spine saga and the DCIS saga. What a relief!
PS Speaking of the DCIS saga, I now suspect my skin problem may be due to a thick liquid baby soap I've been showering with since the beginning of radiation. We'll see.
One morning recently, I learned they can be primary care providers when I had a strange skin inflammation under my breasts (including the radiated breast) and couldn't get in to see my doctor. The office could work me in with the NP. It was no time to hide from the unfamiliar. At least the NP was a woman.
During the couple of days before my appointment, I looked up the various skin rashes on line, and thought I found the culprit. My breasts are heavy, no longer perky, and the climate here is best called humid.
I like her as soon as she said "Hi." She's not a kid, and has the look, somehow, of experience. I was right about that. I told her my problem and a few things about me. She grabbed the ever-handy computer, which she worked like a pro, found my meds list, cleaned it out and updated it in a hurry. She made suggestions for keeping clean between showers in this climate: baby wipes. (Insisting that since they are for preventing diaper rash, I might like them better than my feminine wipes.)
I told her about my feet, also, and how I'd given up on finding a good podiatrist who knows all types of foot anatomy. She immediately gave me the name of one she'd worked with in the past!
She punched a few keys and sent a prescription to my drug store. Gave me a couple instructions for the cream.
We talked about OB/Gyn doctors and Well Woman exams.
I thanked her profusely, trying to express how great it felt to deal with not just a new problem, but with things long neglected during the spine saga and the DCIS saga. What a relief!
PS Speaking of the DCIS saga, I now suspect my skin problem may be due to a thick liquid baby soap I've been showering with since the beginning of radiation. We'll see.
Saturday, April 26, 2014
DCIS . . . neglecting the other 95% of me
Starting with the callback for more mammos, DCIS and the C word just seemed to eat my life. When I say that out loud, someone usually answers: I know. It does.
I had left my spine surgeon in L.A., and the spine problem had eaten my life there for six or eight months, including not being able to drive to any doctors.
Now I've come up for air and realized how much has been neglected. The dentist's future plans and mine have yet to coincide. My feet hurt, I know I need a podiatrist. Learning to eat without soy; giving up milk for stomach health. And remnants of tendinitis were the icing on the cake. Oh, and that little diagnosis of migraine.
At least I don't need to use the cane anymore.
I remember being hopeful and happy before the lumpectomy, and usually energetic during the radiation weeks. Well, except for that first day of the '"boost." I did see the dentist right before radiation started, partly because he was sending me reminders all the time.
Then, before I even got to meet the medical oncologist, I had the nasty sinus thing that was sending people to bed around here. Slowly the energy started to fade. The oncologist gave me a couple more weeks to heal the sinuses, start Tamoxifen.
I still don't know if Tamoxifen is what slows down my energy. And what I read about its side effects makes me know I have to find an OB/GYN who knows the latest findings and can consider my history.
I don't think I have fuzzy thinking, but the lack of energy, the dreariness, bothers me. I may just have been trying to do too much, making up for lost time.
And the per cent I'm sure I've neglected is the psychological part of me, what used to make me energetic, what used to make me brave. And sometimes proud.
I had left my spine surgeon in L.A., and the spine problem had eaten my life there for six or eight months, including not being able to drive to any doctors.
Now I've come up for air and realized how much has been neglected. The dentist's future plans and mine have yet to coincide. My feet hurt, I know I need a podiatrist. Learning to eat without soy; giving up milk for stomach health. And remnants of tendinitis were the icing on the cake. Oh, and that little diagnosis of migraine.
At least I don't need to use the cane anymore.
I remember being hopeful and happy before the lumpectomy, and usually energetic during the radiation weeks. Well, except for that first day of the '"boost." I did see the dentist right before radiation started, partly because he was sending me reminders all the time.
Then, before I even got to meet the medical oncologist, I had the nasty sinus thing that was sending people to bed around here. Slowly the energy started to fade. The oncologist gave me a couple more weeks to heal the sinuses, start Tamoxifen.
I still don't know if Tamoxifen is what slows down my energy. And what I read about its side effects makes me know I have to find an OB/GYN who knows the latest findings and can consider my history.
I don't think I have fuzzy thinking, but the lack of energy, the dreariness, bothers me. I may just have been trying to do too much, making up for lost time.
And the per cent I'm sure I've neglected is the psychological part of me, what used to make me energetic, what used to make me brave. And sometimes proud.
Thursday, April 24, 2014
FDA Warns of Cancer Risk with Laparoscopic Device
When I was worried about whether to risk Tamoxifen, a sweet social worker who has taken it, emailed me some comfort. She only mentioned a couple of serious possible side effects. One was uterine cancer. She made light of it, saying one would just have a hysterectomy. I tried to go along with the downplaying.
Then I read about Dr. Amy Reed, whose doctor husband was in conflict with Brigham and Women's Hospital, insisting that laparoscopic power morcellation in her hysterectomy spread an undiagnosed cancer throughout her abdominal cavity. The doctor and her husband have been fighting to get the procedure publicized and stopped.
Why do I care? Because the procedure is in use, and the FDA cares. According to this April 17 medpage article, doctors don't always mention this potential danger to their patients. Maybe they don't even discuss how they're going to do the hysterectomy.
Now, in the back of my mind with fear of uterine cancer, I have to remember what kind of hysterectomy.
What you can do is, if you like, read the story, in USA Today or medpage, then put a note with your pills. Put it in your medical proxy directions. Put it in your wallet. And tell your GYN what is not permissible.
Update: See my somewhat more polite comment on medpage under the title article.
Then I read about Dr. Amy Reed, whose doctor husband was in conflict with Brigham and Women's Hospital, insisting that laparoscopic power morcellation in her hysterectomy spread an undiagnosed cancer throughout her abdominal cavity. The doctor and her husband have been fighting to get the procedure publicized and stopped.
Why do I care? Because the procedure is in use, and the FDA cares. According to this April 17 medpage article, doctors don't always mention this potential danger to their patients. Maybe they don't even discuss how they're going to do the hysterectomy.
Now, in the back of my mind with fear of uterine cancer, I have to remember what kind of hysterectomy.
What you can do is, if you like, read the story, in USA Today or medpage, then put a note with your pills. Put it in your medical proxy directions. Put it in your wallet. And tell your GYN what is not permissible.
Update: See my somewhat more polite comment on medpage under the title article.
Wednesday, April 23, 2014
DCIS - YOU'RE CURED. . . . What? I'm supposed to have a written survivor plan?
"Beginning next year, the American College of Surgeons Commission on Cancer will require a written survivorship care plan for every survivor after completion of primary treatment." medpage today.com Apr. 21. The article showed that cancer doctors are not doing this now.
What do I have instead? What did I do for myself to plan for survival?
I went back to the surgeon a month or two after radiation for some pain near the radiation and surgery sites. He said some radiation effects last. He told me to call the radiological oncologist.
I dialed her number and got a nurse who is not good at talking with patients. I didn't insist on seeing the doctor.
What about the medical oncologist?
Tamoxifen. I told him I thought it just made my regular problems somewhat worse, I hadn't seen a specific new problem. What bothered me was depression and I couldn't lose weight. He told me we should take the depression seriously, and put me on an every-3-month visit schedule. I got an order to have blood drawn before the next visit.
I'm wondering what should be on a written survival plan.
A written plan would not have helped with things that don't require any new or ongoing actions.
One problem: doctors who are not good at explaining things aloud may not be any better at writing clearly what to do. Or what they will do.
Do DCIS patients need a written long-term plan?
Without one, what can we do?
We can do our research, even with other survivors.
We can ask the doctor about specific items we've read and heard about that concern us.
We can take a list of items with us to the doctor.
We can insist he answer when we ask about daily and weekly and yearly care.
We can avoid expecting oncologists to be mind-readers.
For example: I read about thyroid and other hormones. I told the medical oncologist I hadn't had a thyroid test for years and asked if I should. He ordered one. The moral of that story is: If you're taking a medicine when you meet the oncologist, he may think your primary doc is checking on it.
If we had a written survivorship plan, I think we would already know most of what would be on it.
We would follow through on it about as well as we have on medical plans so far in our lives.
What do I have instead? What did I do for myself to plan for survival?
I went back to the surgeon a month or two after radiation for some pain near the radiation and surgery sites. He said some radiation effects last. He told me to call the radiological oncologist.
I dialed her number and got a nurse who is not good at talking with patients. I didn't insist on seeing the doctor.
What about the medical oncologist?
Tamoxifen. I told him I thought it just made my regular problems somewhat worse, I hadn't seen a specific new problem. What bothered me was depression and I couldn't lose weight. He told me we should take the depression seriously, and put me on an every-3-month visit schedule. I got an order to have blood drawn before the next visit.
I'm wondering what should be on a written survival plan.
A written plan would not have helped with things that don't require any new or ongoing actions.
One problem: doctors who are not good at explaining things aloud may not be any better at writing clearly what to do. Or what they will do.
Do DCIS patients need a written long-term plan?
Without one, what can we do?
We can do our research, even with other survivors.
We can ask the doctor about specific items we've read and heard about that concern us.
We can take a list of items with us to the doctor.
We can insist he answer when we ask about daily and weekly and yearly care.
We can avoid expecting oncologists to be mind-readers.
For example: I read about thyroid and other hormones. I told the medical oncologist I hadn't had a thyroid test for years and asked if I should. He ordered one. The moral of that story is: If you're taking a medicine when you meet the oncologist, he may think your primary doc is checking on it.
If we had a written survivorship plan, I think we would already know most of what would be on it.
We would follow through on it about as well as we have on medical plans so far in our lives.
Tuesday, April 22, 2014
NO, NO, Don't make us think about that!
Yes, we've all decided not to get old. We're never going to get dementia. And we won't think about it. Let's take a minute out from that stand.
A week or two ago, I commented on a Modern Healthcare blog:
Yes, things are done in hospitals every day that shouldn't be done.
But with dementia, there's all the difference in the world! Because most people with dementia are not going to have enough clear moments to call a lawyer. And with that thing down their throats, and with those restraints, they can't call anybody.
Did the patient's surrogate sign informed consent for this? I say, make the surrogate stay in the room to see what it's like.
Right now the whole thing seems to be in the hands of the doctor - with sub-specialists being likely to order this. There are guidelines and the guidelines are ignored.
What's the answer? Very slow feeding of very small bites has been suggested for the many patients with limited ability to swallow.
Will we ignore this? Who we gonna call? Before it's our turn?
A week or two ago, I commented on a Modern Healthcare blog:
Feeding tube use in advanced dementia patients depends on provider, despite guidelines.Then I found an abstracted article in Health Affairs: Type Of Attending Physician Influenced Feeding Tube Insertions For Hospitalized Elderly People With Severe Dementia
"This occurs despite the harms of the procedure, which may outweigh its benefits, and the procedure’s inconsistency with care focused on the patient’s comfort."
We need a famous actor to go through this as a person with dementia who doesn't know where he is or what is being done to him.
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But with dementia, there's all the difference in the world! Because most people with dementia are not going to have enough clear moments to call a lawyer. And with that thing down their throats, and with those restraints, they can't call anybody.
Did the patient's surrogate sign informed consent for this? I say, make the surrogate stay in the room to see what it's like.
Right now the whole thing seems to be in the hands of the doctor - with sub-specialists being likely to order this. There are guidelines and the guidelines are ignored.
What's the answer? Very slow feeding of very small bites has been suggested for the many patients with limited ability to swallow.
Will we ignore this? Who we gonna call? Before it's our turn?
Monday, April 21, 2014
HOSPITALS: Neighborhood versus patients?
Writing about the Mayo Clinic destination project reminded me that other hospitals could use a lot more integration into their neighborhoods. Mayo Clinic approached the city, and got money earmarked for the area where patients need benefits.
Are other hospitals afraid to sacrifice any power to the local political logjam? Are they oblivious to the area's impact on the patients, and vice versa? Or are chaos, dreariness, and lack of convenience for doctors and patients the city's fault?
For a hospital near L.A. the local drivers and the lack of traffic police cause a dangerous situation. I've mentioned the traffic versus doctors (and patients and staff) crossing the street from medical buildings. Also in danger from local traffic are local workers needing to get lunch at the hospital.
The hospital garden is nearly inaccessible, so patients and visitors do usually do end up on that street, driving away to get some peace and respite from unpleasant tests, treatments, and results.
Maybe an overpass would have been impossible. A few police plus an enforced pedestrian crossing or two would not have been impossible. The shame is that there are pedestrian crossings in nearby shopping areas!
The hospital might have located some entrances better. The town might have found property for a new restaurant or two. Politicians and administrators (and donors) might have cooperated to provide a shuttle service so a patient with two appointments could even go to a nearby movie in between!
I haven't even touched on hospitals in high-crime areas.
Still, I'm convinced much area safety and pleasantness can be possible when we face the fact: no hospital is an island!
Are other hospitals afraid to sacrifice any power to the local political logjam? Are they oblivious to the area's impact on the patients, and vice versa? Or are chaos, dreariness, and lack of convenience for doctors and patients the city's fault?
For a hospital near L.A. the local drivers and the lack of traffic police cause a dangerous situation. I've mentioned the traffic versus doctors (and patients and staff) crossing the street from medical buildings. Also in danger from local traffic are local workers needing to get lunch at the hospital.
The hospital garden is nearly inaccessible, so patients and visitors do usually do end up on that street, driving away to get some peace and respite from unpleasant tests, treatments, and results.
Maybe an overpass would have been impossible. A few police plus an enforced pedestrian crossing or two would not have been impossible. The shame is that there are pedestrian crossings in nearby shopping areas!
The hospital might have located some entrances better. The town might have found property for a new restaurant or two. Politicians and administrators (and donors) might have cooperated to provide a shuttle service so a patient with two appointments could even go to a nearby movie in between!
I haven't even touched on hospitals in high-crime areas.
Still, I'm convinced much area safety and pleasantness can be possible when we face the fact: no hospital is an island!
Friday, April 18, 2014
TAMOXIFEN? or just overwhelmed? - Fuzzy thinking news
All year I've wondered about, worried about, searched the web about fuzzy thinking. It crops up in support chat rooms, once in a study of rats, but that's about all. And when I can't find my favorite sweater, and a dirty dish mysteriously appears in a cupboard, I worry until I find that what really happened was not caused by my thinking.
Is fuzzy thinking a symptom of something so dangerous that the doctors are afraid we'll stop taking our preventive pills? Why is it ignored in the press? Does it really go away after a while on adjuvant meds? Why don't they tell us anything?
Then two days ago, I found some info in the most unexpected place! The book Therapeutic Landscapes* describes a study of women with recent breast cancer diagnosis. They were assigned two hours in activity with nature per week, before and after surgery. After controlling typical variables, they showed "significant improvement in directed attention compared with a control group."
On page 15, the authors talk about prolonged mental fatigue and too much directed attention, (sounds like what patients deal with during every phase of treatment.) And the damage to judgment and ability to concentrate. That sounds like fuzzy thinking to me. The researchers don't say fuzzy thinking (after all they're scientists.)
The book even mentions that an idol of mine, the late William James, suggested "involuntary attention" -- effortless thinking to repair results of too much over-directed thinking.
So I got a some serious clues here to do some pruning and watering and walking in this safe, wooded neighborhood (East TX pollen or not) before I start thinking I've lost the car keys and that sweater forever by Tamoxifen-caused thinking. We'll see.
*Therapeutic Landscapes, Clare Cooper Marcus and Naomi E. Sachs.
Is fuzzy thinking a symptom of something so dangerous that the doctors are afraid we'll stop taking our preventive pills? Why is it ignored in the press? Does it really go away after a while on adjuvant meds? Why don't they tell us anything?
Then two days ago, I found some info in the most unexpected place! The book Therapeutic Landscapes* describes a study of women with recent breast cancer diagnosis. They were assigned two hours in activity with nature per week, before and after surgery. After controlling typical variables, they showed "significant improvement in directed attention compared with a control group."
On page 15, the authors talk about prolonged mental fatigue and too much directed attention, (sounds like what patients deal with during every phase of treatment.) And the damage to judgment and ability to concentrate. That sounds like fuzzy thinking to me. The researchers don't say fuzzy thinking (after all they're scientists.)
The book even mentions that an idol of mine, the late William James, suggested "involuntary attention" -- effortless thinking to repair results of too much over-directed thinking.
So I got a some serious clues here to do some pruning and watering and walking in this safe, wooded neighborhood (East TX pollen or not) before I start thinking I've lost the car keys and that sweater forever by Tamoxifen-caused thinking. We'll see.
*Therapeutic Landscapes, Clare Cooper Marcus and Naomi E. Sachs.
Thursday, April 17, 2014
A FUN TRIP TO THE CLINIC, or an added place to spend?
Sara Marberry recently passed along this story to her readers.
At a recent conference on patient experience, some big news was the Mayo Clinic plan for "a destination medical center." Mayo has persuaded Rochester, MN to start building a community for clinic patients and visitors. To be more specific, visitors and patients will, at least theoretically, have more choices of hotels in Rochester, go shopping between treatments, catch some entertainment or get some recreation, visit family members in their hotel rooms, eat a meal in a choice of restaurants, and so on.
When I first read this, I was excited. I couldn't wait to comment. But doubt has smacked me right between the eyes. Would be great to get out of the hospital building and get a great lunch, if you can get it down into the stomach, and if you can stand the aromas in the restaurant. But who will be able to afford these perks??
Will the movies and recreation facilities in Rochester be free? Is there something I'm missing here? Who are the people who go to Rochester? Has the clinic done a study on the patients' abilities to pay for these things?
Art about cancer, even art made from radiation masks, is being made and sold to pay for cancer treatments.
The quote from Mayo Clinic's Lisa Clarke included: "'... the patient experience is much broader than the walls of the clinic. It starts in the cab ride from the airport . . . '" That's a cab ride the patient pays for. And it may be a fare for a family member plus her own.
Patients who work are borrowing from their 401K plans if they even have them, to pay for rent and insurance during periods they are too sick to work. They are using vacation time for hours they have to wait for treatment. Just traveling to Rochester sounds like it can break the bank for these people. A nicer hotel, and some shopping won't help.
(Thanks to http://www.saramarberry.com/patient-experience-goes-beyond-four-walls)
Tuesday, April 15, 2014
BREAST CANCER - Two sad little "cure" initals
Yes, I know there are a lot of sad letters in a breast cancer patient's world. A lot of sad initials like HER2, scary enough to get the pharma world spewing out a fountain of new drugs. Good new drugs that would seem like the solution. And of course, it's not the end of the story.
That recent luncheon talk by the oncological pharmacist was not all about cure. A lot of it was about treatment for side effects--about anti-nausea medicine, for instance. Give your husband or your doctor, or a pharmaceutical scientist a few months of nausea at the very mention of food, and even for no visible reason. See if he would feel cured.
Doing more research for this blog, I blundered into several websites that were actually support chat rooms for women with BC. I kept seeing an acronym I'd never seen before. Is this some new kind of cancer? Some rare kind? "SE." "SE."
Finally, I get it. They weren't talking about cancer. They were talking about "cures" and adjuvant and preventive medicine. And the acronym I had been lucky enough to avoid until Tamoxifen, was:
SE and SEs. The women were comparing and comforting each other about side effects. Not very long ago, I read a blog by a woman doctor with terminal cancer who said what is often not said - the treatment is what causes the pain and misery.
And so we get this inadequate acronym for what some of us never heard of before in our lives. Two initials to speed talking with each other and any doctor who will listen, about fear and pain, nausea and depression, and sleeplessness--about Side Effects from a cure.
That recent luncheon talk by the oncological pharmacist was not all about cure. A lot of it was about treatment for side effects--about anti-nausea medicine, for instance. Give your husband or your doctor, or a pharmaceutical scientist a few months of nausea at the very mention of food, and even for no visible reason. See if he would feel cured.
Doing more research for this blog, I blundered into several websites that were actually support chat rooms for women with BC. I kept seeing an acronym I'd never seen before. Is this some new kind of cancer? Some rare kind? "SE." "SE."
Finally, I get it. They weren't talking about cancer. They were talking about "cures" and adjuvant and preventive medicine. And the acronym I had been lucky enough to avoid until Tamoxifen, was:
SE and SEs. The women were comparing and comforting each other about side effects. Not very long ago, I read a blog by a woman doctor with terminal cancer who said what is often not said - the treatment is what causes the pain and misery.
And so we get this inadequate acronym for what some of us never heard of before in our lives. Two initials to speed talking with each other and any doctor who will listen, about fear and pain, nausea and depression, and sleeplessness--about Side Effects from a cure.
Monday, April 14, 2014
THE TECH ELITE - Is this our biggest medical problem? (a rant)
In one sentence: technical experts have reached guru status. In one more sentence: hospital computer programs are flashy, they are in style, they are "progress," that word that has led to wreckage in our country before. And hospital computer systems are bought in response to pressure. Aren't hospital administrators and boards afraid of bucking "progress?" Of being considered "past it?"
Selling the hospital a computer system is like selling a Maserati to a rich high school girl who is moving to Boston. It's a great sale if you can do it, but it's not what the girl needs.
Author/educator/artist Debbie Millman quotes famous graphic designer Massimo Vignelli as saying: "'The purpose of marketing should be to find needs--not to find wants.'"
Needs. Hospital computers have the same problem, in my opinion, as hospital wayfinding and other physical plant design: the designer doesn't always know how to find out what the hospital --right down to the nurses and patients, needs. Every day. And the clients - board members and hospital administrators may not know the whole story of their hospital in depth.
I've blogged on doctors saying the electronics take away from patient time. I've blogged on ANGIENADIA's article on how working around the computer's flaw takes more time from actual medicine.
We have great nurses and doctors who are great with computers. And some who've taken to it like ducks to water. When the computer system works.
The rest of the world isn't great yet. We have nurses who are not actually nursing while they run to get help with the computer. Like that night one of my medications disappeared from the computer. But read the ads: Must be proficient in . . . . (insert name of any program or app you've never heard of.)
And that's the danger, in my opinion: How many times has a nurse or administrator who knows computers been hired instead of a nurse or even a doctor who knows how the hospital really works? And who is fabulous at treating patients?
Selling the hospital a computer system is like selling a Maserati to a rich high school girl who is moving to Boston. It's a great sale if you can do it, but it's not what the girl needs.
Author/educator/artist Debbie Millman quotes famous graphic designer Massimo Vignelli as saying: "'The purpose of marketing should be to find needs--not to find wants.'"
Needs. Hospital computers have the same problem, in my opinion, as hospital wayfinding and other physical plant design: the designer doesn't always know how to find out what the hospital --right down to the nurses and patients, needs. Every day. And the clients - board members and hospital administrators may not know the whole story of their hospital in depth.
I've blogged on doctors saying the electronics take away from patient time. I've blogged on ANGIENADIA's article on how working around the computer's flaw takes more time from actual medicine.
We have great nurses and doctors who are great with computers. And some who've taken to it like ducks to water. When the computer system works.
The rest of the world isn't great yet. We have nurses who are not actually nursing while they run to get help with the computer. Like that night one of my medications disappeared from the computer. But read the ads: Must be proficient in . . . . (insert name of any program or app you've never heard of.)
And that's the danger, in my opinion: How many times has a nurse or administrator who knows computers been hired instead of a nurse or even a doctor who knows how the hospital really works? And who is fabulous at treating patients?
Sunday, April 13, 2014
DCIS - WHY MY PATHOLOGY REPORT COMFORTS ME
Today I read the NY Times article VAST STUDY CASTS DOUBT ON THE VALUE OF MAMMOGRAMS. It gave me a few confused moments.
It credits the BMJ editorial published with the study with saying that earlier pro-mammogram studies were done "before the routine use of drugs like Tamoxifen sharply reduced the breast cancer death rate."
My research didn't impress me with a huge Tamoxifn reduction in eventual death rate. Also, I was in a room with a small group of strangers for a hospital edu/lunch when one woman announced: "I took the Tamoxifen and my cancer came back." Since I was just starting Tamoxifen, that didn't make me want my lunch.
Of course my main interest is DCIS treatment. The Times also quotes Dr. Anthony B. Miller, the lead author of the paper. He insisted that there would have been more false diagnosis if the study had included DCIS. The one thing I learned from Dr. Miller is, "' ...D.C.I.S. is found only with mammography,"'
Yes, I've read about autopsied women found with DCIS that had never grown or metastasized. We don't know their ages. We don't know what would have happened in the breast in a year, if something else hadn't killed them.
But there are some things we do know. Including what I saw in my pathology report after lumpectomy:
Diagnosis
DUCTAL CARCINOMA IN SITU, NUCLEAR GRADE 3
Margins of resection - negative
Number of blocks with DCIS 3 - (I checked with my surgeon; it was in more than one duct)
Estrogen receptor
Nuclear grade 3
Nuclear grade 3, how the nucleus looks, is the punch line! Mayo Clinic Breast Books says: ". . . 3 represents marked variation between normal and cancerous cells." They also say, "High grade tumors have a higher rate of recurrence."
As I've said before, grade 3 plus hormone receptor made me sure I'd be getting radiation and years of pills. Or else? The doctor recommended talking to the radiation oncologist and the medical oncologist. I talked. I got radiated. I take the Tamoxifen pills. They aren't wonderful - my feet are swelling, and I'm not a bundle of energy or cheer.
I'm alive. And thanks to that pathology report, I don't think my mammogram was a mistake.
It credits the BMJ editorial published with the study with saying that earlier pro-mammogram studies were done "before the routine use of drugs like Tamoxifen sharply reduced the breast cancer death rate."
My research didn't impress me with a huge Tamoxifn reduction in eventual death rate. Also, I was in a room with a small group of strangers for a hospital edu/lunch when one woman announced: "I took the Tamoxifen and my cancer came back." Since I was just starting Tamoxifen, that didn't make me want my lunch.
Of course my main interest is DCIS treatment. The Times also quotes Dr. Anthony B. Miller, the lead author of the paper. He insisted that there would have been more false diagnosis if the study had included DCIS. The one thing I learned from Dr. Miller is, "' ...D.C.I.S. is found only with mammography,"'
Yes, I've read about autopsied women found with DCIS that had never grown or metastasized. We don't know their ages. We don't know what would have happened in the breast in a year, if something else hadn't killed them.
But there are some things we do know. Including what I saw in my pathology report after lumpectomy:
Diagnosis
DUCTAL CARCINOMA IN SITU, NUCLEAR GRADE 3
Margins of resection - negative
Number of blocks with DCIS 3 - (I checked with my surgeon; it was in more than one duct)
Estrogen receptor
Nuclear grade 3
Nuclear grade 3, how the nucleus looks, is the punch line! Mayo Clinic Breast Books says: ". . . 3 represents marked variation between normal and cancerous cells." They also say, "High grade tumors have a higher rate of recurrence."
As I've said before, grade 3 plus hormone receptor made me sure I'd be getting radiation and years of pills. Or else? The doctor recommended talking to the radiation oncologist and the medical oncologist. I talked. I got radiated. I take the Tamoxifen pills. They aren't wonderful - my feet are swelling, and I'm not a bundle of energy or cheer.
I'm alive. And thanks to that pathology report, I don't think my mammogram was a mistake.
Saturday, April 12, 2014
WHAT PATIENTS NEED - the power of touch
I'm running late this morning, so I'll keep this brief:
The callback for more mammograms can be a nuisance, a little scare, or the beginning of a disorienting journey. For an unmarried woman with no sisters, the resulting diagnosis can put us in a lonely place.
I didn't really have what I'd call a friend in my new state. My family are very optimistic, and not into a lot of hugs. I wanted to scream, "You have no idea how this is going to turn out! Stop telling me it can be easily fixed!!! This is not your breast."
Instead, I felt required to put on my big girl pants and march on.
Then yesterday an article in a magazine took me instantly back to when my best friend was dying of cancer.
She was recently out of a long relationship. Her parents were hours away, and the journey back and forth tired them. Her ex-husband was a disrupting factor at times.
Finally, out of ideas, I sat on the bed one day and simply held her had during visiting hours. She told her mother about it enthusiastically.
So I was impressed when this important article in April MORE reminded us that patients are rarely touched except during procedures. The writer suggested we gently "put a hand on her shoulder, or hold her hand."
Maybe we need a follow-up article. Some of us, when we're patients may need to ask: Can I have a hug?
If you can get a copy of the April issue, I strongly suggest you read the other good suggestions for helping a sick friend.
The callback for more mammograms can be a nuisance, a little scare, or the beginning of a disorienting journey. For an unmarried woman with no sisters, the resulting diagnosis can put us in a lonely place.
I didn't really have what I'd call a friend in my new state. My family are very optimistic, and not into a lot of hugs. I wanted to scream, "You have no idea how this is going to turn out! Stop telling me it can be easily fixed!!! This is not your breast."
Instead, I felt required to put on my big girl pants and march on.
Then yesterday an article in a magazine took me instantly back to when my best friend was dying of cancer.
She was recently out of a long relationship. Her parents were hours away, and the journey back and forth tired them. Her ex-husband was a disrupting factor at times.
Finally, out of ideas, I sat on the bed one day and simply held her had during visiting hours. She told her mother about it enthusiastically.
So I was impressed when this important article in April MORE reminded us that patients are rarely touched except during procedures. The writer suggested we gently "put a hand on her shoulder, or hold her hand."
Maybe we need a follow-up article. Some of us, when we're patients may need to ask: Can I have a hug?
If you can get a copy of the April issue, I strongly suggest you read the other good suggestions for helping a sick friend.
Friday, April 11, 2014
AFTER DCIS: What I want to know about breasts
In my life I've gone to a periodontist, two eye specialist MDs, and a podiatrist. It occurs to me that it's unusual for anyone to die of eye disease or foot disease.
Oh, and two "professional breast fitters" measured me several sizes too small, i.e., I can't breathe at all in a 32, and they didn't have any 34D. Don't you wonder if the mastectomy fitters have any real training?
One put me in an expensive underwire. (This was before the lumpectomy.) I have no separation between my breasts, so I don't wear under wires. That one was pressing hard on almost an inch of each breast. I pointed this out. She said, But look how good you look!! I ran. Finally, in radiation, someone pointed out that underwires are not recommended.
So, why don't we have breast doctors? Do any medical schools teach breast care? Do schools of osteopathy teach breast care? Are doctors taught anything scientific about breast care before we get a disease?
While looking up Dr. Northrup, MD, I did find something about tight bras being a problem, and about not wearing your bra all the time. That much seems like good advice. With heavy breasts, this is a tricky decision. She also mentions avoiding a lot of estrogen. She offers a monthly letter about breasts, but I probably won't subscribe to it - her focus for general protective health is different from mine.
And there doesn't seem much knowledge about ongoing breast care after lumpectomy and radiation, except stay hydrated. I do leave my bra off for some periods, but after awhile I have some breast pain. I also have periodic slight breast pain with my bra; and my radiated breast, months later, seems warmer to the touch, with a pink and apparently swollen aureole. The nurse at the radiation center is not much help. I wonder if I'll get the doctor if I call again.
I've watched the medpage hot topics breast video, but I want to know: Are any specific substances being tested for better adjuvant therapy? Will more than a handful of women be able to afford them?
Are we still going to be taking Tamoxifen fifty years from now? What can we do to avoid uterine cancer in the meantime? Memorial Sloan Kettering list Tamoxifen as one of the six "key risk factors for endometrial cancer." Endometrial cancer is not my idea of a little problem.
Will Evista become more affordable?
Are women really quitting Aromatase inhibitors because of the nasty side effects?
If a woman has had CIS in another part of the body, doesn't that make mammos more advisable?
What do the studies mean when they say a cancer drug did not reduce mortality?
Thursday, April 10, 2014
ASPIRIN - is it the third magic pill to prevent breast cancer?
Last night at supper, a family member mentioned a person he follows on Twitter. That man has been a proponent of aspirin for preventing cancer and bemoans the slow pace of the medical world to agree. I looked him up on the web - he mentions having degrees in biology and microbiology, but is not practicing in that field.
I dug around on a few sites after supper, and found little. I tried Forbes, thinking they would be likely to give references to well-controlled studies. And of course, I am interested mainly in breast cancer. Their 2013 article led me to the Scottish study mentioned below, and also mentioned 2012 studies from The Lancet. Excitement, but not many specifics.
A Scottish study was mentioned in two articles indicating results that aspirin helped to prevent breast cancer. However, one article also mentioned that an American study got the opposite results.
Much reportage I found seemed to have inconsistencies that were not backed up by specific study results. In one report, aspirin was discussed as a help with colorectal cancer. Another article specifically stated that most good results for aspirin with colon cancer seemed to occur in the rising and transverse colon - the opposite side of the colon.
Almost every study report mentioned the ongoing danger of internal bleeding. Cancer Research UK was not helpful, no statistics in their aspirin-nsaid (ibuprofen,etc) mention. They did say you must not take aspirin for prevention if you have ever had an ulcer.
If I do more research, I'm going to stick with my tried and true formula:
Remember we have known for decades that aspirin can cause stomach bleeding.
Ignore opinions that say "studies show." Get the study name and the qualifications of the researchers, and any info on the study design for accuracy. And who paid for it!
Pay more attention to established top medical journals than to popular articles (even mine).
Get a second opinion. Maybe a third. Doctors are not always right. Not even on tv. Especially on tv.
Don't base decisions on reports given at conferences. Find out what gets printed in a peer-reviewed medical journal.
I dug around on a few sites after supper, and found little. I tried Forbes, thinking they would be likely to give references to well-controlled studies. And of course, I am interested mainly in breast cancer. Their 2013 article led me to the Scottish study mentioned below, and also mentioned 2012 studies from The Lancet. Excitement, but not many specifics.
A Scottish study was mentioned in two articles indicating results that aspirin helped to prevent breast cancer. However, one article also mentioned that an American study got the opposite results.
Much reportage I found seemed to have inconsistencies that were not backed up by specific study results. In one report, aspirin was discussed as a help with colorectal cancer. Another article specifically stated that most good results for aspirin with colon cancer seemed to occur in the rising and transverse colon - the opposite side of the colon.
Almost every study report mentioned the ongoing danger of internal bleeding. Cancer Research UK was not helpful, no statistics in their aspirin-nsaid (ibuprofen,etc) mention. They did say you must not take aspirin for prevention if you have ever had an ulcer.
If I do more research, I'm going to stick with my tried and true formula:
Remember we have known for decades that aspirin can cause stomach bleeding.
Ignore opinions that say "studies show." Get the study name and the qualifications of the researchers, and any info on the study design for accuracy. And who paid for it!
Pay more attention to established top medical journals than to popular articles (even mine).
Get a second opinion. Maybe a third. Doctors are not always right. Not even on tv. Especially on tv.
Don't base decisions on reports given at conferences. Find out what gets printed in a peer-reviewed medical journal.
Wednesday, April 9, 2014
CANCER HOSPITAL ADS: Let's draw the line in the sand (A Rant)
Last Friday, waiting for my tutoring client, I bought a magazine at the library book store. I bought it because, leafing through quickly, I saw a heading: Cancer News. Underneath that was a big yellow number 4 (2 1/2 inches high) and the text: things every cancer patient must do. A flap opened, with some orange rectangles - the questions patients must ask. Wow, what a magazine.
I paid my few cents and took it home for a closer look. Quotes from MDs (good idea.) A picture of a cancer survivor and her bicycle--and a link to find her story. (Okay)
Then I look at the orange rectangles marked with Q for questions: "What happens if a treatment approach doesn't work for me?" (Gee, shouldn't you find out first if you even like the doctor? Or if she has a treatment in mind? This may be a good question. Or . . .)
Another Q rectangle: "How many patients have you treated with my type and stage of cancer, and how successful have you been?" (Wait a minute! Who you gonna ask? Do you honestly think the doctor knows how many? Do you think the hospital administrator knows? And how do you define "success," what with other diseases interfering, allergies to medicine, and each person's immune system. How many patients actually followed the regime? And let's face it. Mistakes happen with any treatment variable.)
I was smelling a rat. I was right. At the top of that flap in teeny letters was the name of a medical group. And all the MDs quoted were from there, of course.
The last page features a blazing yellow and orange chart of integrative care approach, presumably theirs? At the bottom, of course, their phone number and web address. And thumbnail color photos. (Would you pick a cancer hospital from a photo?)
I was lucky, and a bit informed, when I chose my local hospital. I decided on my care step by step. I researched the famous hospitals. There are other ways to research on line and be more than lucky. There are ways to talk about it with your primary doctor in depth. There are survivors to ask. There are ways to comb through a hospital website and see if your gut instinct finds a red flag.
Did someone at the magazine go over this ad and realize it was intended to look like an article? At the Advertising Center, L.A., they called this borrowed credibility or words to that effect.) And there's the matter of communication ethics.
Will the women who read this ad be primed (if I may borrow a word from Malcolm Gladwell) by the advertisers hitching their wagon to a star-- the reputation of glossy MORE magazine? If someone is diagnosed with cancer later, in her head somewhere are some of that ad's words, and she thinks "I've heard of them!"
I fear choices made that way. What do you think?
I paid my few cents and took it home for a closer look. Quotes from MDs (good idea.) A picture of a cancer survivor and her bicycle--and a link to find her story. (Okay)
Then I look at the orange rectangles marked with Q for questions: "What happens if a treatment approach doesn't work for me?" (Gee, shouldn't you find out first if you even like the doctor? Or if she has a treatment in mind? This may be a good question. Or . . .)
Another Q rectangle: "How many patients have you treated with my type and stage of cancer, and how successful have you been?" (Wait a minute! Who you gonna ask? Do you honestly think the doctor knows how many? Do you think the hospital administrator knows? And how do you define "success," what with other diseases interfering, allergies to medicine, and each person's immune system. How many patients actually followed the regime? And let's face it. Mistakes happen with any treatment variable.)
I was smelling a rat. I was right. At the top of that flap in teeny letters was the name of a medical group. And all the MDs quoted were from there, of course.
The last page features a blazing yellow and orange chart of integrative care approach, presumably theirs? At the bottom, of course, their phone number and web address. And thumbnail color photos. (Would you pick a cancer hospital from a photo?)
I was lucky, and a bit informed, when I chose my local hospital. I decided on my care step by step. I researched the famous hospitals. There are other ways to research on line and be more than lucky. There are ways to talk about it with your primary doctor in depth. There are survivors to ask. There are ways to comb through a hospital website and see if your gut instinct finds a red flag.
Did someone at the magazine go over this ad and realize it was intended to look like an article? At the Advertising Center, L.A., they called this borrowed credibility or words to that effect.) And there's the matter of communication ethics.
Will the women who read this ad be primed (if I may borrow a word from Malcolm Gladwell) by the advertisers hitching their wagon to a star-- the reputation of glossy MORE magazine? If someone is diagnosed with cancer later, in her head somewhere are some of that ad's words, and she thinks "I've heard of them!"
I fear choices made that way. What do you think?
Tuesday, April 8, 2014
DCIS, the breast treatment, who's the boss?
One medical group in my part of the country is considered the "go- to guys" for cancer. They have a big public presence, get interviewed, and quoted. They have "a team" for you.
By contrast, my doctor in California knew everyone, knew who was the best in our area for a problem. When I couldn't deal with one doctor he chose, his second choice was very skilled and sympathetic to me.
My doctor was worried about the spine surgeon and his prescribed rehab being so far from friends. But I stuck with the surgeon, because my doctor considered him the best.
Now in TX, a stranger and called back for more mammograms, I had to go on instinct. My instinct or my fear said the "go-to guys" would regiment me, would "team up on me."
I stayed with the hospital breast unit people, who paid attention to me and my fears. When a kind DO there told me I needed the biopsy, I even met the biopsy doctor before I agreed.
After the biopsy results, I used the surgeon they recommended. He is kind, calm, and patient person. And did a great job on the lumpectomy. Then he recommended I see a certain radiation oncologist and medical oncologist. It was up to me.
I was uncomfortable with one oncologist. But I stayed with her because I got support from others in her unit, and because he had said he would go to her if he needed radiation. Research of major hospitals has convinced me she gave me the best, latest, and least severe treatment.
The late Bernard Virshup, MD, of California, wrote How to Cope With Your Doctor. In his book, he tells of a general in WW2 whose grand strategy was to take a certain island. But one colonel got reports that no enemy was sighted on the island, so he kept moving forward and arrived at the island to discover the enemy was leaving by boat.
Dr. Virshup was convinced it's not the grand strategy that counts in medicine; ". . . it's the guy who knows the right move to make next."
In The Patient From Hell, Stephen Schneider found many reasons to help decide the right next move . In DCIS, I'm incredibly grateful that I found doctors who knew, but let me decide whether to go with "the right move to make next."
By contrast, my doctor in California knew everyone, knew who was the best in our area for a problem. When I couldn't deal with one doctor he chose, his second choice was very skilled and sympathetic to me.
My doctor was worried about the spine surgeon and his prescribed rehab being so far from friends. But I stuck with the surgeon, because my doctor considered him the best.
Now in TX, a stranger and called back for more mammograms, I had to go on instinct. My instinct or my fear said the "go-to guys" would regiment me, would "team up on me."
I stayed with the hospital breast unit people, who paid attention to me and my fears. When a kind DO there told me I needed the biopsy, I even met the biopsy doctor before I agreed.
After the biopsy results, I used the surgeon they recommended. He is kind, calm, and patient person. And did a great job on the lumpectomy. Then he recommended I see a certain radiation oncologist and medical oncologist. It was up to me.
I was uncomfortable with one oncologist. But I stayed with her because I got support from others in her unit, and because he had said he would go to her if he needed radiation. Research of major hospitals has convinced me she gave me the best, latest, and least severe treatment.
The late Bernard Virshup, MD, of California, wrote How to Cope With Your Doctor. In his book, he tells of a general in WW2 whose grand strategy was to take a certain island. But one colonel got reports that no enemy was sighted on the island, so he kept moving forward and arrived at the island to discover the enemy was leaving by boat.
Dr. Virshup was convinced it's not the grand strategy that counts in medicine; ". . . it's the guy who knows the right move to make next."
In The Patient From Hell, Stephen Schneider found many reasons to help decide the right next move . In DCIS, I'm incredibly grateful that I found doctors who knew, but let me decide whether to go with "the right move to make next."
Monday, April 7, 2014
SURVIVORS - What they do . . . Another S word
The Ehrenreich article yesterday reminded me of another story I read long ago in (you guessed it) The Immune Power Personality. A patient of George Solomon had a punishing journey with AIDS - getting additional diseases and recovering from them.
Solomon described "James" as living life fully.
There are two parts of his story that always stayed with me. First, he set an amazing goal for a "sick" person - restoring a Victorian house. If you read the shelter magazines have tried it, you probably know that kind of restoration can flatten a "healthy" person after a year or so. Instead he thrived.
Dreyer quotes Sullivan as being concerned about James when the house was finished. But, instead of laying down his tools and dying content, he just started on another house.
And perhaps more important , he asked for and received support from his father who was 86. Luckily, his father was apparently healthy, and helped with the restoration work.
(As I recall, Alice Epstein as well had a wonderful support group and set herself ambitious goals - mental, physical and spiritual. And Michael Callen also had goals and activities never dreamed of for someone fighting AIDS.)
When James' father became ill, James finally died of AIDS.
The part of his story I'd forgotten was the part I had once underlined. Dr. Solomon went below the surface and found specific things to credit for James' survival:
He had determination
He sought support from others and was not afraid to accept it.
He had an assertive style of coping.
And under it all, he had "undaunted optimism."
Does this contradict Erhenreich's and my need to protest against the constant insistence in the breast cancer world to "be positive?"
I don't think so. From what I read, James and Michael let the optimism arise from within. It was a decision, part of their character, not a surrender to buzzwords and buzz advice.
Solomon described "James" as living life fully.
There are two parts of his story that always stayed with me. First, he set an amazing goal for a "sick" person - restoring a Victorian house. If you read the shelter magazines have tried it, you probably know that kind of restoration can flatten a "healthy" person after a year or so. Instead he thrived.
Dreyer quotes Sullivan as being concerned about James when the house was finished. But, instead of laying down his tools and dying content, he just started on another house.
And perhaps more important , he asked for and received support from his father who was 86. Luckily, his father was apparently healthy, and helped with the restoration work.
(As I recall, Alice Epstein as well had a wonderful support group and set herself ambitious goals - mental, physical and spiritual. And Michael Callen also had goals and activities never dreamed of for someone fighting AIDS.)
When James' father became ill, James finally died of AIDS.
The part of his story I'd forgotten was the part I had once underlined. Dr. Solomon went below the surface and found specific things to credit for James' survival:
He had determination
He sought support from others and was not afraid to accept it.
He had an assertive style of coping.
And under it all, he had "undaunted optimism."
Does this contradict Erhenreich's and my need to protest against the constant insistence in the breast cancer world to "be positive?"
I don't think so. From what I read, James and Michael let the optimism arise from within. It was a decision, part of their character, not a surrender to buzzwords and buzz advice.
Sunday, April 6, 2014
IT'S BREAST CANCER Back away from our emotions!
Yesterday, I mentioned Dr. Kumar's link to the Barbara Ehrenreich article: Smile! You've got cancer.
Her journey has been lengthier and tougher than mine, but our feelings sometimes the same. We were optimistic about our health until that mammogram. The results threw her into a seat on the BC roller coaster, starting with a surgical biopsy. I was freaked out enough even contemplating my stereotactic biopsy, where the doctor was going to jab something like a pencil into my breast and cut some pieces. It sounded barbaric to me. And I was angry.
But our results were the same: a voice saying there's cancer. In my case, the doctor called on the phone. Her voice was so cheery I wanted to say: Sure, Sunshine, it's not your breast. I had a similar reaction when a relative said, ". . .easily treated."
I adopted a sometimes false calm. Underneath it was some denial of fear. I kept quiet about it. And I got advice: be calm all is well. But no one could know at that stage how well it was, if at all. In truth, Barbara Brenner was right, no one ever knows yet with BC if all is well.
My surgery was curative, but, in a way, a second biopsy. There was a pathology report--mixed reviews. The surgery was a success, but the patient is in trouble. Radiation, probably. And five years of not-exactly-benign pills. I didn't feel I had a right to complain, as I learned more about other women's much-worse journey.
Ms. Ehrenreich got worse news and worse treatment. We had both done some investigating. She didn't feel part of the sisterhood. As she wrote:
No one among the bloggers and book writers seemed to share my sense of outrage over the disease and the available treatments. What causes it and why is it so common, especially in industrialised societies? Why don't we have treatments that distinguish between different forms of breast cancer or between cancer cells and normal dividing cells?
Her journey has been lengthier and tougher than mine, but our feelings sometimes the same. We were optimistic about our health until that mammogram. The results threw her into a seat on the BC roller coaster, starting with a surgical biopsy. I was freaked out enough even contemplating my stereotactic biopsy, where the doctor was going to jab something like a pencil into my breast and cut some pieces. It sounded barbaric to me. And I was angry.
But our results were the same: a voice saying there's cancer. In my case, the doctor called on the phone. Her voice was so cheery I wanted to say: Sure, Sunshine, it's not your breast. I had a similar reaction when a relative said, ". . .easily treated."
I adopted a sometimes false calm. Underneath it was some denial of fear. I kept quiet about it. And I got advice: be calm all is well. But no one could know at that stage how well it was, if at all. In truth, Barbara Brenner was right, no one ever knows yet with BC if all is well.
My surgery was curative, but, in a way, a second biopsy. There was a pathology report--mixed reviews. The surgery was a success, but the patient is in trouble. Radiation, probably. And five years of not-exactly-benign pills. I didn't feel I had a right to complain, as I learned more about other women's much-worse journey.
Ms. Ehrenreich got worse news and worse treatment. We had both done some investigating. She didn't feel part of the sisterhood. As she wrote:
No one among the bloggers and book writers seemed to share my sense of outrage over the disease and the available treatments. What causes it and why is it so common, especially in industrialised societies? Why don't we have treatments that distinguish between different forms of breast cancer or between cancer cells and normal dividing cells?
She continued to notice an over-cheery denial in all breast cancer support and treatment, and denial about the how much agony and fear are caused by the treatments, not the disease.
I salute her for all her writing, for tearing down the velvet curtain of denial and demands for optimism.
I've found that only between two people who've experienced cancer, is humor okay. A dear, supportive friend/survivor made me laugh out loud when he said, You know they'll keep you alive long enough to take the five years of pills. Bless him forever. Let the innocent bystanders keep quiet.
I've found that only between two people who've experienced cancer, is humor okay. A dear, supportive friend/survivor made me laugh out loud when he said, You know they'll keep you alive long enough to take the five years of pills. Bless him forever. Let the innocent bystanders keep quiet.
But I disagree with Ms Ehrenreich on one thing, that concept of cancer as a gift. DCIS brought me closer to some people who would not otherwise be my friends, perhaps ever. DCIS made me slow down long enough to write in here every single morning, and rant about hospitals and environment and whatever. And made me look deeper into the medical world and the hospital world and find new goals.
This doesn't mean our anger was wrong. If I forget to be angry, maybe I should put on the wall a couple "bumper stickers" like:
The medicine I take daily is made by guys that make a dangerous pesticide.
I wish you health.
Saturday, April 5, 2014
PLEASE SHUT UP . . . getting too much positive advice? Dare to feel.
Kevin Md, this week, featured an article,
The dreadful cost of denying how you really feel
He began with a link to a Guardian article entitled “Smile! You’ve Got Cancer” written by Barbara Ehrenreich.
After the link, Dr. Kumar mentions that his grandmother died of cancer when he was young. He then focuses on what he has witnessed working in the ER/ED when there is a death and friends and relatives react. He describes reactions that suggest the basic steps of grief. But he got me when he notes "And some try to prevent others from expressing their grief/anger/disbelief."
So often in after a death or a diagnosis of impending death, someone or several someones say: It's going to be alright. But in fact, they have no idea that it will be. I'm digressing here, but I want to point out that millions in 12-Step programs have found recovery in the three A's: Awareness, Acceptance, Action. Nothing there about denying how you feel.
From what I've seen, some people are very frightened when we suddenly express how angry we are, even at a loved one's death. I'm sure they're afraid of their own anger popping out. But back to Dr. Kumar's story.
He then tells us more about his grandmother's death. He had lived with her briefly as a little child, then moved to the states. When he was in 7th grade in this new country, she died of cancer. He remembers not knowing what to do or feel, and gradually losing touch with the death. (This had to resonate with me, because I was about that age and basically frozen, when my grandmother died. I was even unable to react to my beloved childhood baby sitter when she came to the viewing.)
Years later, he tells of going back to India, suddenly remembering her death, and being overcome an amazing outburst of grief and recurring sadness. But wait, there's more.
Writing now about the grief, he says: The amazing thing is, I felt like a new person after that evening. I felt like I was meeting myself for the first time. I certainly know I would be a different physician today were it not for that evening.
That is the part I don't dare to forget when I am afraid to take Henry Dreher's advice, or James Pennebaker's advice - to write, express my memories and emotions around trauma, to be healed.
Wouldn't it be wonderful to have that feeling of meeting myself for the first time!
So often in after a death or a diagnosis of impending death, someone or several someones say: It's going to be alright. But in fact, they have no idea that it will be. I'm digressing here, but I want to point out that millions in 12-Step programs have found recovery in the three A's: Awareness, Acceptance, Action. Nothing there about denying how you feel.
From what I've seen, some people are very frightened when we suddenly express how angry we are, even at a loved one's death. I'm sure they're afraid of their own anger popping out. But back to Dr. Kumar's story.
He then tells us more about his grandmother's death. He had lived with her briefly as a little child, then moved to the states. When he was in 7th grade in this new country, she died of cancer. He remembers not knowing what to do or feel, and gradually losing touch with the death. (This had to resonate with me, because I was about that age and basically frozen, when my grandmother died. I was even unable to react to my beloved childhood baby sitter when she came to the viewing.)
Years later, he tells of going back to India, suddenly remembering her death, and being overcome an amazing outburst of grief and recurring sadness. But wait, there's more.
Writing now about the grief, he says: The amazing thing is, I felt like a new person after that evening. I felt like I was meeting myself for the first time. I certainly know I would be a different physician today were it not for that evening.
That is the part I don't dare to forget when I am afraid to take Henry Dreher's advice, or James Pennebaker's advice - to write, express my memories and emotions around trauma, to be healed.
Wouldn't it be wonderful to have that feeling of meeting myself for the first time!
Friday, April 4, 2014
TAMOXIFEN - e-mail fights fatigue
My email was a disgrace. Rather than have some overload trouble that I've had in the past, I decided to clean it out. And of course, it was generously salted with posts from Dr. Salwitz and others on the same subject: exercise.
Unfortunately, walking gets neglected during the pollen season. Pollen is as popular a complaint here as earth tremors are in L.A. And like everything in TX, the pollen clouds are bigger. Sometimes I remember to hurry out before lunch - the low pollen hours.
And a sneaky voice in my head says exercise may give me energy.
So I sorta modified the exercise routine I had in L.A. Since I'm on the tile floor here, I moved the whole program onto the bed (very dangerous for yawning, Tamoxifen me.)
Now I elevate my feet and use those exercises I learned in bed in post-spine-surgery rehab, including that old favorite: the butt squeeze and the others I've posted about on this blog. Plenty of stretching, which my spine surgeon mentioned once in passing.
Plus some stretching my legs out, rotating my ankles, and even flexing my toes. (Tamoxifen is not responsible for my feet hurting; I think it's more the A word, arthritis. Or perhaps I mean the B word--birthdays.)
My little dumbbells are right beside me on the bed, for a few arm exercises from the old L.A. floor routine.
And the daily dozen: combining the tendinitis arm presses with my neck exercises, now more urgent since a visit to the doctor for shoulder pain. I'm not even telling the doctors about that arm/neck combo. That's my secret, and I'm certainly not taking responsibility for telling it to you.
But it works so far, and I can turn my head very nicely to back out of places full of pedestrians and the occasional colorful, jumbo trash bins.
Time now for the warnings: Do not do any exercises without consulting your doctor. Don't. Although it's probably ok to elevate your feet while eating soy-free chocolates.
Unfortunately, walking gets neglected during the pollen season. Pollen is as popular a complaint here as earth tremors are in L.A. And like everything in TX, the pollen clouds are bigger. Sometimes I remember to hurry out before lunch - the low pollen hours.
And a sneaky voice in my head says exercise may give me energy.
So I sorta modified the exercise routine I had in L.A. Since I'm on the tile floor here, I moved the whole program onto the bed (very dangerous for yawning, Tamoxifen me.)
Now I elevate my feet and use those exercises I learned in bed in post-spine-surgery rehab, including that old favorite: the butt squeeze and the others I've posted about on this blog. Plenty of stretching, which my spine surgeon mentioned once in passing.
Plus some stretching my legs out, rotating my ankles, and even flexing my toes. (Tamoxifen is not responsible for my feet hurting; I think it's more the A word, arthritis. Or perhaps I mean the B word--birthdays.)
My little dumbbells are right beside me on the bed, for a few arm exercises from the old L.A. floor routine.
And the daily dozen: combining the tendinitis arm presses with my neck exercises, now more urgent since a visit to the doctor for shoulder pain. I'm not even telling the doctors about that arm/neck combo. That's my secret, and I'm certainly not taking responsibility for telling it to you.
But it works so far, and I can turn my head very nicely to back out of places full of pedestrians and the occasional colorful, jumbo trash bins.
Time now for the warnings: Do not do any exercises without consulting your doctor. Don't. Although it's probably ok to elevate your feet while eating soy-free chocolates.
Thursday, April 3, 2014
IF I BOUGHT A HOSPITAL, Part 2?
Med Page a few weeks ago had a link to a PLOS article about health ideas from the 1865's City of Health. Some of it seemed right up there with leeches in my no longer relevant category.
But one idea seemed to be one of those health "duhs" that my experience finds ignored now, at least in the US: A wide door that allows patient beds to be rolled outside on pleasant days! I wanted to add this to my If I Bought A Hospital list. It would seem like a step up from those window shades blocked by chairs in one hospital. No one had time to put shades up and down, or even thought about it.
Every day now I read somewhere about evidence of faster healing when patients are exposed to nature, or at least nature views. (Yet one hospital designer wrote about the need for hair dryers!)
Reality is creeping in. The world is more crowded now, with no outdoor places for benches and wheelchairs, much less beds. Hospitals are cutting caregiving staff in some places. Twelve hour shifts are leaving caregivers exhausted.
If it's true that millions more people are insured for the first time now, (not just switching companies) there will be an influx of hospital patients -- more crowding and less time for care? Certainly no time to roll beds down from the 14th floor. And some will wait a long time even to be in the hospital, because they can't get in to see a capable doctor in the predicted doctor shortage.
But even before that, we've had another variable: lawyers. Imagine the legal mind picturing the patient forgotten outdoors for eight hours or so. (Even I can imagine that, I confess.) And there's the same legal mind that put those sirens in hospital beds in California, to warn the surrounding neighborhood that a patient might be getting out of bed. Lawyers do have a voice in what is spent and whether rolling beds outside is dangerous not just for patients but for the hospital.
Why do you care? I hope you care because money is being spent on lavish reception areas rather than lavish patient gardens. And as I've griped about before, money is being spent on resort-worthy visitors' areas, on impressive parking garages, and on gardens patients never visit. I hope you care because a dose of nature may get you home faster than a hair dryer.
Regardless of words like "payer" the patient is a customer. In the vast majority of cases, we are in that hospital bed because we went without something to pay insurance premiums. And we will go without something else to pay what insurance doesn't cover. Top level administrators, however, won't have to do without much of anything, even after taxes.
I welcome your comments.
Be well..
But one idea seemed to be one of those health "duhs" that my experience finds ignored now, at least in the US: A wide door that allows patient beds to be rolled outside on pleasant days! I wanted to add this to my If I Bought A Hospital list. It would seem like a step up from those window shades blocked by chairs in one hospital. No one had time to put shades up and down, or even thought about it.
Every day now I read somewhere about evidence of faster healing when patients are exposed to nature, or at least nature views. (Yet one hospital designer wrote about the need for hair dryers!)
Reality is creeping in. The world is more crowded now, with no outdoor places for benches and wheelchairs, much less beds. Hospitals are cutting caregiving staff in some places. Twelve hour shifts are leaving caregivers exhausted.
If it's true that millions more people are insured for the first time now, (not just switching companies) there will be an influx of hospital patients -- more crowding and less time for care? Certainly no time to roll beds down from the 14th floor. And some will wait a long time even to be in the hospital, because they can't get in to see a capable doctor in the predicted doctor shortage.
But even before that, we've had another variable: lawyers. Imagine the legal mind picturing the patient forgotten outdoors for eight hours or so. (Even I can imagine that, I confess.) And there's the same legal mind that put those sirens in hospital beds in California, to warn the surrounding neighborhood that a patient might be getting out of bed. Lawyers do have a voice in what is spent and whether rolling beds outside is dangerous not just for patients but for the hospital.
Why do you care? I hope you care because money is being spent on lavish reception areas rather than lavish patient gardens. And as I've griped about before, money is being spent on resort-worthy visitors' areas, on impressive parking garages, and on gardens patients never visit. I hope you care because a dose of nature may get you home faster than a hair dryer.
Regardless of words like "payer" the patient is a customer. In the vast majority of cases, we are in that hospital bed because we went without something to pay insurance premiums. And we will go without something else to pay what insurance doesn't cover. Top level administrators, however, won't have to do without much of anything, even after taxes.
I welcome your comments.
Be well..
Wednesday, April 2, 2014
HOSPITALS versus The healing power of the familiar
A few days ago, I found Patricia Moore's RIT lecture on YouTube. Everything she said was what I had hoped to hear somewhere. But I came away with two pictures in my mind -- pictures I wish would revolutionize the world of the patient experience.
The first was a woman, not young, walking slowly, slowly up a hundred steps to a temple. We learn that there is an alternate pathway, easier. Why not use it? Her daughter has said: She's always done it that way.
The other picture will probably stay with me forever. A small Asian woman asleep in a a healing facility, not on an institutional bed, but on her own mat on the floor. Her piece of home.
I'm embarrassed by my initial reaction to seeing her sleeping on the floor. Embarrassed because my reaction is exactly the mentality that keeps hospitals so institutional! Oh, no, the poor woman! My western mind was full of stereotypes. She must be very poor, she must be in a poor country. It must be too hard down there. It must be dirty and cold on the floor! And then Dr. Moore set us straight: The woman has been allowed to sleep where she wants to, on what she wants to.
Isn't that freedom? She seemed peaceful. Don't we read and talk about getting home from a trip and the joy of home in our own bed? But with very few exceptions, even the richest of us can't take our own bed, or much of anything of our own, to the hospital.
Perhaps no matter how sick you've been, you've always had a good bed in the hospital. After spine surgery, I had a hospital bed so saggy that I could not lie on my side without holding onto the bed rail to keep from rolling back.
Not only our beds, but many familiar things are important to give us a feeling of adulthood, of capability, of where we are. I packed for my daily needs when I went to the three hospitals for my spine fusion saga. Most of those things, I never saw again until I went home. I couldn't reach them, and no one knew where they'd been put. Hospitals rely on our friends and relatives to sort it out. Yet many cancer patients travel great distance to be treated in hospitals their friends and relatives can't always travel to.
Patients are entitled to some comfort. And there is no comfort like the comfort of the familiar. But except for being cleaner, a hospital bed gives us the same familiarity as a bed in a homeless shelter.
People on the web write daily about what someone thinks are major problems hospitals have to solve. Yet they may be wide of the mark. Time and again, I read about diagnoses leaving patients overwhelmed and distracted.
I believe a major problem hospitals have to solve is allowing patients to feel more self-determining, less helpless, less lost in a strange land.
The first was a woman, not young, walking slowly, slowly up a hundred steps to a temple. We learn that there is an alternate pathway, easier. Why not use it? Her daughter has said: She's always done it that way.
The other picture will probably stay with me forever. A small Asian woman asleep in a a healing facility, not on an institutional bed, but on her own mat on the floor. Her piece of home.
I'm embarrassed by my initial reaction to seeing her sleeping on the floor. Embarrassed because my reaction is exactly the mentality that keeps hospitals so institutional! Oh, no, the poor woman! My western mind was full of stereotypes. She must be very poor, she must be in a poor country. It must be too hard down there. It must be dirty and cold on the floor! And then Dr. Moore set us straight: The woman has been allowed to sleep where she wants to, on what she wants to.
Isn't that freedom? She seemed peaceful. Don't we read and talk about getting home from a trip and the joy of home in our own bed? But with very few exceptions, even the richest of us can't take our own bed, or much of anything of our own, to the hospital.
Perhaps no matter how sick you've been, you've always had a good bed in the hospital. After spine surgery, I had a hospital bed so saggy that I could not lie on my side without holding onto the bed rail to keep from rolling back.
Not only our beds, but many familiar things are important to give us a feeling of adulthood, of capability, of where we are. I packed for my daily needs when I went to the three hospitals for my spine fusion saga. Most of those things, I never saw again until I went home. I couldn't reach them, and no one knew where they'd been put. Hospitals rely on our friends and relatives to sort it out. Yet many cancer patients travel great distance to be treated in hospitals their friends and relatives can't always travel to.
Patients are entitled to some comfort. And there is no comfort like the comfort of the familiar. But except for being cleaner, a hospital bed gives us the same familiarity as a bed in a homeless shelter.
People on the web write daily about what someone thinks are major problems hospitals have to solve. Yet they may be wide of the mark. Time and again, I read about diagnoses leaving patients overwhelmed and distracted.
I believe a major problem hospitals have to solve is allowing patients to feel more self-determining, less helpless, less lost in a strange land.
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