In the entry to the Cancer Center is a poster or two, illustrated to resemble an oversize Patient Satisfaction questionnaire. I've already had several since the diagnosis.
If you're like me, often the questions don't touch the way you feel. Like the fear when one of your meds has disappeared from the electronic meds integration system that relief people can't operate. I don't recall a question about the atmosphere or the lack of windows. Or the equipment. Or the room arrangement that keeps me from seeing a seated visitor. Or you name it.
And from what I read on line, administrations may use my answers to give lower evaluations to caregivers and staff. So, when I get a questionnaire that demands I fill in every circle next to irrelevant questions, I know a machine will be reading it! And someone will get the blame, maybe someone who had nothing to do with the problem.
A machine can't read the comments section, so does it go unread on that type questionnaire? I can write to the administration or even the board, or a website and ask for this type to be discontinued. If I suspect the machine, I can staple on a paper with my comments.
And also, I can call the patient advocate, if that institution has one. And I can tell my story on a website that takes comments from patients.
I can think about what caused something, like yelling in the corridor ! Is it just that they are understaffed and each one is far from the person who is asking a questions? My answer can mention that in a popularly priced, busy restaurant in CA, a manager with an earpiece solves problems by phoning someone or by taking action himself. Just like the Secret Service. Voila! NO yelling. I can mention that to a patient advocate or a hospital administrator.
I can start TODAY on that questionnaire I can't bear to fill out because most of my memories of that post-surgery rehab are not good.
But what I always must do is mention any caregiver who is kind, cheerful, and way above average - like the patient aide who brought me some floss threaders from home so I could clean my dental bridge! Or is there a rule against giving a patient floss?
Tuesday, December 31, 2013
Monday, December 30, 2013
LUMPECTOMY - THE SEQUEL . . . Symptoms -- What hospitals could do
NOTE TO ARCHITECTS:
Saturday night, too tired too take a shower or do a load of wash, I read some more of The Shape of Green, by Lance Hosey.
Here's a quote about patients and symptoms:
". . . at one Pennsylvania hospital, patients with garden views went home nearly a day earlier than those facing a brick wall. . . . So the quality of light, movement, and patterns must be important. Yet. . . environmental psychologist Judith Heerwagen . . .and others show that even large photographs of natural scenes. . . lowering heart rate and blood pressure among stressed patients."
Also: "A Carnegie Mellon study linked seated views of windows to a 20 percent drop in 'sick building syndrome' symptoms, including fatigue, neck and back pain, eye strain, headaches and irritability." If only architects read these studies and persuaded hospitals to do the math.
In the Cancer Center radiation treatment room, as I mentioned recently, the overhead light shines through panels painted with flowers. There is a good painting of nature in the waiting room, but I wasn't in there long enough to lower my blood pressure Friday.
The exam rooms where we wait to see the doctors and hear the news are often where we need a nature view; but usually the only chairs have their backs to the window. Then add the full-color drawings of horrible diseases, and feel your blood pressure soar.
Let's not pretend that hospitals and medical buildings can't remodel to make windows to healing views more possible.
You know I'm going to talk again and again about this. And don't get me started about that garden accessible only through the administrator's office. . .
Saturday night, too tired too take a shower or do a load of wash, I read some more of The Shape of Green, by Lance Hosey.
Here's a quote about patients and symptoms:
". . . at one Pennsylvania hospital, patients with garden views went home nearly a day earlier than those facing a brick wall. . . . So the quality of light, movement, and patterns must be important. Yet. . . environmental psychologist Judith Heerwagen . . .and others show that even large photographs of natural scenes. . . lowering heart rate and blood pressure among stressed patients."
Also: "A Carnegie Mellon study linked seated views of windows to a 20 percent drop in 'sick building syndrome' symptoms, including fatigue, neck and back pain, eye strain, headaches and irritability." If only architects read these studies and persuaded hospitals to do the math.
In the Cancer Center radiation treatment room, as I mentioned recently, the overhead light shines through panels painted with flowers. There is a good painting of nature in the waiting room, but I wasn't in there long enough to lower my blood pressure Friday.
The exam rooms where we wait to see the doctors and hear the news are often where we need a nature view; but usually the only chairs have their backs to the window. Then add the full-color drawings of horrible diseases, and feel your blood pressure soar.
Let's not pretend that hospitals and medical buildings can't remodel to make windows to healing views more possible.
You know I'm going to talk again and again about this. And don't get me started about that garden accessible only through the administrator's office. . .
Sunday, December 29, 2013
LUMPECTOMY - THE SEQUEL . . . . Radiation fatigue and skin
Yesterday, Saturday, started out great - busy, but with energy. A kind person who has been through radiation gave me a present - the Aquaphor he used on his skin during radiation. Talked with friends for quite a while.
Didn't go out for usual decaff. By mid-afternoon, needed a nap. Slept hard enough to dream. Climbed the stairs at the library, one of my no-skipping-this exercises, slowly. But before I was through at the market, felt a little tired again.
Got the food into the house and made myself walk around the corner to the mailbox. By then, the effort of taking a shower seemed like it would have to wait for morning. What saved me?? Got my second wind earlier. Laundry's in and swishing.
SKIN
Since I wash my hair in the shower, shampoo irritation may (or may not) become a breast skin issue. I went through the market's healthy living section and read every word of several shampoos' ingredients. Settled on baby shampoo called Cocoon baby. No phthalates, no parabens, no sulfates. Also looked at one made by the company that makes my non-irritating leave-in hair conditioner. I'll let you know how Cocoon baby works out.
In closing: Just as not everyone has serious breast skin irritation, so everyone, including you, may not get fatigue. Best wishes.
Didn't go out for usual decaff. By mid-afternoon, needed a nap. Slept hard enough to dream. Climbed the stairs at the library, one of my no-skipping-this exercises, slowly. But before I was through at the market, felt a little tired again.
Got the food into the house and made myself walk around the corner to the mailbox. By then, the effort of taking a shower seemed like it would have to wait for morning. What saved me?? Got my second wind earlier. Laundry's in and swishing.
Since I wash my hair in the shower, shampoo irritation may (or may not) become a breast skin issue. I went through the market's healthy living section and read every word of several shampoos' ingredients. Settled on baby shampoo called Cocoon baby. No phthalates, no parabens, no sulfates. Also looked at one made by the company that makes my non-irritating leave-in hair conditioner. I'll let you know how Cocoon baby works out.
In closing: Just as not everyone has serious breast skin irritation, so everyone, including you, may not get fatigue. Best wishes.
Saturday, December 28, 2013
LUMPECTOMY - THE SEQUEL - More on day 9, blood pressure and psychology
Taking off my coat, I saw a small woman come into the waiting room. She looked like a small and delicate very young woman. It was my doctor. We went into a treatment room with a new nurse. The doctor even seemed more friendly and relaxed. Is this me? Finally getting comfortable with her? Or just her after a few days off?
She asked about my energy. I have taken a nap on some days. Maybe I do need more rest to be less fidgety and finish the gift drawing and painting for my family.
My bp was 161 - too much rushing around. I remember that passage in Bling that said after bp 145, all systems are definitely not Go, or words to that effect, and some motor functions are disintegrating.
I don't to be driving when it's over 145
The nurse took it again and it was about 141.
Still haven't ordered an all cotton soft bra.
She asked about my energy. I have taken a nap on some days. Maybe I do need more rest to be less fidgety and finish the gift drawing and painting for my family.
My bp was 161 - too much rushing around. I remember that passage in Bling that said after bp 145, all systems are definitely not Go, or words to that effect, and some motor functions are disintegrating.
I don't to be driving when it's over 145
The nurse took it again and it was about 141.
Still haven't ordered an all cotton soft bra.
Friday, December 27, 2013
Good grief, another retraction:
I went back to the source of the discussion on tamoxifen, and it is a video transcript with a named woman, I have to assume that it is an actual doctor-patient discussion. My apologies.
Note: Apparently I really am more absent-minded since the diagnosis.
Note: Apparently I really am more absent-minded since the diagnosis.
LUMPECTOMY - THE SEQUEL . . . Day 9 and meds and life
.What I secretly wanted for Christmas was a headline in the New York Times saying that someone discovered a new long-term medicine to replace Tamoxifen and the others we have now. One with no side effects. And that the new medicine would be available as soon as I need it. No bow necessary, no shiny wrapping needed. No luck, but there are still a few days of Christmas.
No, I'm not dwelling on what happens after radiation, but the days and years ahead do sneak into my thoughts. If you are concerned about the next step after radiation, you may want to look at this possibly hypothetical* "discussion" between a doctor and a woman who wants to refuse Tamoxifen:
Back to the present:
Yesterday, even the radiation therapist noticed the affected breast is a tiny bit pinker. He asked me about itching. Last night and this morning even I can see I'm pinker on the right side.
I was so busy yesterday drawing a couple gifts for the 12 days of Christmas, that I didn't get my late afternoon walk, so I did all my exercises with tiny 1 1/2 pound ankle weights and tiny 2-Pound dumbbells. I even forgot to shower.
In between all of this, trying to reschedule my stomach medicine. Taking it closer to supper didn't work. I know I"m not the only one who has another health problem or three to deal with, right along with radiation.
I salute you who have so much to juggle today.
* I don't have the details on whether this is an actual discussion
* I apologize for the use of Arial in the publishes blog, it's hard to read, but can't fix
No, I'm not dwelling on what happens after radiation, but the days and years ahead do sneak into my thoughts. If you are concerned about the next step after radiation, you may want to look at this possibly hypothetical* "discussion" between a doctor and a woman who wants to refuse Tamoxifen:
http://www.mdanderson.org/transcripts/icare_Tamoxifen.htm
Back to the present:
Yesterday, even the radiation therapist noticed the affected breast is a tiny bit pinker. He asked me about itching. Last night and this morning even I can see I'm pinker on the right side.
I was so busy yesterday drawing a couple gifts for the 12 days of Christmas, that I didn't get my late afternoon walk, so I did all my exercises with tiny 1 1/2 pound ankle weights and tiny 2-Pound dumbbells. I even forgot to shower.
In between all of this, trying to reschedule my stomach medicine. Taking it closer to supper didn't work. I know I"m not the only one who has another health problem or three to deal with, right along with radiation.
I salute you who have so much to juggle today.
* I don't have the details on whether this is an actual discussion
* I apologize for the use of Arial in the publishes blog, it's hard to read, but can't fix
Thursday, December 26, 2013
LUMPECTOMY - THE SEQUEL . . . Radiation Day 8, life
After the second mammogram, the days flew: meeting doctors, feeling rushed to have the steriotactic biopsy. I guess they still fly by, but during the day, things seem to take a long time.
I actually looked up stereotactic: it just means x-ray guided, image guided, or mammographically guided. I haven't had breakfast, so I'm delighted that I can spell that.
Because of the two holidays, radiation will actually go to the middle of January! 20 days.
Last week the radiation therapist said we're advised against wearing underwire bras. I just told him I don't wear them. I think what prompted him to mention it is that my soft bra slides around sometimes. When I looked in the mirror Monday, I saw that the band can be pressing on the softest lower edge of the breast. Will a new bra be more elastic, and where it belongs?
Yesterday, I took one Christmas walk. Spent most of the day drawing and talking to my younger daughter on the phone. Forgot to exercise with my tiny weights. Strong Women Stay Young says I can break up the workouts into 4 20-minute workouts per week. I haven't hit four since I've been here. Before the spine got so bad, (seems like another lifetime) I was doing floor work every morning. Not possible here.
The list:
Put up a big sign based on the Breast Cancer Patients Rest in Peace post* that I hope you read. Instead of walk for the cure, my new mantra is: EXERCISE TO SAVE MYSELF! Talk about deferred reward! You can't just step on the scales to see if exercise is making you live longer.
Order a new bra, same design, but is won't be older
Order a leisure bra just in case I have skin problems before the radiation is over.
* from Sunrise Rounds http://sunriserounds.com
I actually looked up stereotactic: it just means x-ray guided, image guided, or mammographically guided. I haven't had breakfast, so I'm delighted that I can spell that.
Because of the two holidays, radiation will actually go to the middle of January! 20 days.
Last week the radiation therapist said we're advised against wearing underwire bras. I just told him I don't wear them. I think what prompted him to mention it is that my soft bra slides around sometimes. When I looked in the mirror Monday, I saw that the band can be pressing on the softest lower edge of the breast. Will a new bra be more elastic, and where it belongs?
Yesterday, I took one Christmas walk. Spent most of the day drawing and talking to my younger daughter on the phone. Forgot to exercise with my tiny weights. Strong Women Stay Young says I can break up the workouts into 4 20-minute workouts per week. I haven't hit four since I've been here. Before the spine got so bad, (seems like another lifetime) I was doing floor work every morning. Not possible here.
The list:
Put up a big sign based on the Breast Cancer Patients Rest in Peace post* that I hope you read. Instead of walk for the cure, my new mantra is: EXERCISE TO SAVE MYSELF! Talk about deferred reward! You can't just step on the scales to see if exercise is making you live longer.
Order a new bra, same design, but is won't be older
Order a leisure bra just in case I have skin problems before the radiation is over.
* from Sunrise Rounds http://sunriserounds.com
Wednesday, December 25, 2013
LUMPECTOMY - THE SEQUEL . . . Christmas Day
Nurses all over America are working this morning, missing the wonder, curiosity, and excitement of any children in the household. Others, are patients in those hospitals. Or patients at home, alone or with family.
I am worried about my leg pain and wondering about the rest of radiation and other therapy.
A friend sent a letter saying she had spent much of the year in hospital, on IVs, because of an infection that probably started in the hospital during or after surgery. Now she is in need of more surgery.
Another friend is still taking a long term painful medicine for breast cancer.
The three of us are blessed to be home this Christmas.
But medical science still has much to do.
I am worried about my leg pain and wondering about the rest of radiation and other therapy.
A friend sent a letter saying she had spent much of the year in hospital, on IVs, because of an infection that probably started in the hospital during or after surgery. Now she is in need of more surgery.
Another friend is still taking a long term painful medicine for breast cancer.
The three of us are blessed to be home this Christmas.
But medical science still has much to do.
LUMPECTOMY - THE SEQUEL . . . Christmas eve and radiation
This morning, Tuesday: my legs were still bothering me. Got my walk in anyway, and wondered if I'll make five hours of exercise this week. . .
Noon:
The radiation therapists feel like friends now. The woman therapist even remembered my plans for the holiday.
This week, my old tech editor gene came back to life and started me wondering what the parts of the radiation machine are called. I can kind of tell by the sound now and by more or less room light on my closed eyes when the machine is moving back and forth over me.
Afterward, the therapists were more than willing to help me sit up the way I was taught after spine surgery, rolling on my side first. We all wished each other Merry Christmas.
Back in town, traffic was lighter, even at the market. Once out of the car, though, the leg nerves still jabbed me every little while.
My breast seemed less swollen and more normal this morning - who knows how this works.
Noon:
The radiation therapists feel like friends now. The woman therapist even remembered my plans for the holiday.
This week, my old tech editor gene came back to life and started me wondering what the parts of the radiation machine are called. I can kind of tell by the sound now and by more or less room light on my closed eyes when the machine is moving back and forth over me.
Afterward, the therapists were more than willing to help me sit up the way I was taught after spine surgery, rolling on my side first. We all wished each other Merry Christmas.
Back in town, traffic was lighter, even at the market. Once out of the car, though, the leg nerves still jabbed me every little while.
My breast seemed less swollen and more normal this morning - who knows how this works.
Tuesday, December 24, 2013
LUMPECTOMY - THE SEQUEL . . . Radiation Day 6, Monday: Speaking up
Morning;
I read some old material on American College of Surgeons site about standard of care for breast cancer -- nothing new.
Couldn't find any helpful info on itch or pain medicine for breast. What my friend had been given actually has itching as a side effect! My oncologist put up a red flag in my mind last week by asking if I had any itching.
Got brave; called cancer center; told them I needed to see the on-duty radiological oncologist - (My head still doesn't like the idea of "oncologist" and I had to think before I typed it here.)
When I got there, I told the nurse that I need an emergency number for when they are closed. She pointed out the microscopic number on my schedule. When she gave me the number printed bigger, there were very specific instructions (which aren't on the schedule) on how to leave a message. I believe every patient should have a way to contact her oncologist in emergency after hours.
Dr. Kaiser was friendly and encouraging. He had a real conversation with me as a person. I told him about my unpredictable dermatitis including under my arms, and how badly it itches. I need something on hand in case the breast itches a lot.
He told me I could use the same cortisone on any breast itching that I use on my underarm dermatitis--that he has at times prescribed cortisone for breast irritation. Also gave examples of how often women's breast skin doesn't react to radiation the way it would to a beach sunburn. Best of all he told me I may not get any itching.
I went off for my treatment armed with some samples of their lotion, which he said is like the Eucerin I'm already using. I felt so much more secure.
All afternoon I had trouble with my right leg again. Thought that was all over --that I would have no more setbacks. The way the spine physical therapists taught me to get up does not work on the very narrow treatment table -- the radiation therapists have to sort of half pull me up and support me. All I can do is work consistently on my posture after I leave there.
I read some old material on American College of Surgeons site about standard of care for breast cancer -- nothing new.
Couldn't find any helpful info on itch or pain medicine for breast. What my friend had been given actually has itching as a side effect! My oncologist put up a red flag in my mind last week by asking if I had any itching.
Got brave; called cancer center; told them I needed to see the on-duty radiological oncologist - (My head still doesn't like the idea of "oncologist" and I had to think before I typed it here.)
When I got there, I told the nurse that I need an emergency number for when they are closed. She pointed out the microscopic number on my schedule. When she gave me the number printed bigger, there were very specific instructions (which aren't on the schedule) on how to leave a message. I believe every patient should have a way to contact her oncologist in emergency after hours.
Dr. Kaiser was friendly and encouraging. He had a real conversation with me as a person. I told him about my unpredictable dermatitis including under my arms, and how badly it itches. I need something on hand in case the breast itches a lot.
He told me I could use the same cortisone on any breast itching that I use on my underarm dermatitis--that he has at times prescribed cortisone for breast irritation. Also gave examples of how often women's breast skin doesn't react to radiation the way it would to a beach sunburn. Best of all he told me I may not get any itching.
I went off for my treatment armed with some samples of their lotion, which he said is like the Eucerin I'm already using. I felt so much more secure.
All afternoon I had trouble with my right leg again. Thought that was all over --that I would have no more setbacks. The way the spine physical therapists taught me to get up does not work on the very narrow treatment table -- the radiation therapists have to sort of half pull me up and support me. All I can do is work consistently on my posture after I leave there.
Sunday, December 22, 2013
LUMPECTOMY - THE SEQUEL . . . . A Warning and Recipe for Hope
Breast cancer patients rest in peace
Go to his blog, above, click Cancer Care, then Cancer 101,and up pops this post that I had forgotten about. (Although I had sworn not to forget it.)
Dr. Salwitz is more optimistic than some hospitals about DCIS in general in another post of his. But what this post prescribes offers my secret hope: success with no side effects.
This time I copied and printed the post and hung it on the wall in front of my laptop, where I sit too long and neglect my second walk or my reclining exercises, or my weights (boring).
I have a perpetual note on my note pad that says:
5 hours a week
(this figure from Mayo Clinic for cancer prevention) and I'm not up to 5 hours in spite of having a family member who walks at least that much.
Will I finally stick to it? Do I dare not to?
Saturday, December 21, 2013
LUMPECTOMY - THE SEQUEL . . . Time out to talk better medical care
I know this site can be hard to find, but I get it e-mailed to me: http://www.pulsemagazine.org/stories332
Her story may or may not touch you. Her new way of presenting it gives me inspiration to keep blogging and keep agitating. I hope you can still access it when you get this post.
I believe in the fight for more people insured; let us not forget to fight for medical care as good as we got from the best doctor of our lives.
And my heart goes out to you if you still deserve much better care than you have received so far.
Concierge Care
Friday, 20 December 2013 | 
| 
|
Deborah Pierce
***
***
I believe in the fight for more people insured; let us not forget to fight for medical care as good as we got from the best doctor of our lives.
And my heart goes out to you if you still deserve much better care than you have received so far.
LUMPECTOMY - THE SEQUEL . . . Day 5: the machine, communication
The treatment was okay today, with George Strait singing in the background.
I confess I've gotten a little curious about the machine (the big steel turtle overhead.) The part that's toward me doesn't look quite so rough and industrial to me now. There's what looks like a big square or rectangular lens or window in the center. At each edge are some numbers or degrees that are probably not longitude and latitude, but I don't know enough of the science to know what they are. One of the therapists one day had said only: "That's where the radiation comes out." That sums it up.
Afterward, they handed me off to the nurse, who said I would be talking to the doctor. She said something about doing that periodically. My pulse and bp were fine, and so was my temperature. I still get a bit dizzy when I sit up on the bench or table or whatever they call it.
And someone said the doc will be gone until Christmas, and another doctor will be there.
The doctor agreed that I am already a tiny bit pink. She asked about itching. I, and I told her I hated that word, and mentioned my dermatitis. She said okay if I didn't want to talk about it, and started on another topic. Why the devil didn't I ask her what to do if it itches over the weekend? And why didn't I realize this before the office closed? (All my research said the sunburn is usually after three weeks. I'm not delighted to know it may be sooner.)
I need to go into sessions with her prepped with all key words that might come up and with questions I may want to ask her, although I really didn't expect the itch question today. I'm still a bit overwhelmed by all of this sometimes
The doctor said I can use what lotion I want until they give me the special radiation treatment lotion. It's okay to use talc or cornstarch under the breast to keep perspiration from irritating. That was about it. We all wished each other a merry holiday.
In the evening, I talked to one of my friends who has been through this. She said she had been given a prescription at the very beginning of radiation, and also named another medicine. I was irritated that the doctor and nurse had given me nothing so far. We talked for quite awhile about oncologists and how they talk with us and make suggestions (and when they don't.) She convinced me not to obsess on it when I should be sleeping.
This morning I was still concerned about possible itching this weekend, so I looked up my friends' medicines on line. Her prescription was for only burns--an antibacterial. Her other medicine is for itching, and can sometimes be bought over the counter. It can, however, have side effects, and the internet has a lot of "ask your doctor first' phrases, so I will need to ask the nurse about interactions, etc. Monday I need to see the nurse. Or the available doctor.
Good thing I investigated now. Don't want to be cross with everyone at the Cancer Center next week.
I confess I've gotten a little curious about the machine (the big steel turtle overhead.) The part that's toward me doesn't look quite so rough and industrial to me now. There's what looks like a big square or rectangular lens or window in the center. At each edge are some numbers or degrees that are probably not longitude and latitude, but I don't know enough of the science to know what they are. One of the therapists one day had said only: "That's where the radiation comes out." That sums it up.
Afterward, they handed me off to the nurse, who said I would be talking to the doctor. She said something about doing that periodically. My pulse and bp were fine, and so was my temperature. I still get a bit dizzy when I sit up on the bench or table or whatever they call it.
And someone said the doc will be gone until Christmas, and another doctor will be there.
The doctor agreed that I am already a tiny bit pink. She asked about itching. I, and I told her I hated that word, and mentioned my dermatitis. She said okay if I didn't want to talk about it, and started on another topic. Why the devil didn't I ask her what to do if it itches over the weekend? And why didn't I realize this before the office closed? (All my research said the sunburn is usually after three weeks. I'm not delighted to know it may be sooner.)
I need to go into sessions with her prepped with all key words that might come up and with questions I may want to ask her, although I really didn't expect the itch question today. I'm still a bit overwhelmed by all of this sometimes
The doctor said I can use what lotion I want until they give me the special radiation treatment lotion. It's okay to use talc or cornstarch under the breast to keep perspiration from irritating. That was about it. We all wished each other a merry holiday.
In the evening, I talked to one of my friends who has been through this. She said she had been given a prescription at the very beginning of radiation, and also named another medicine. I was irritated that the doctor and nurse had given me nothing so far. We talked for quite awhile about oncologists and how they talk with us and make suggestions (and when they don't.) She convinced me not to obsess on it when I should be sleeping.
This morning I was still concerned about possible itching this weekend, so I looked up my friends' medicines on line. Her prescription was for only burns--an antibacterial. Her other medicine is for itching, and can sometimes be bought over the counter. It can, however, have side effects, and the internet has a lot of "ask your doctor first' phrases, so I will need to ask the nurse about interactions, etc. Monday I need to see the nurse. Or the available doctor.
Good thing I investigated now. Don't want to be cross with everyone at the Cancer Center next week.
Friday, December 20, 2013
LUMPECTOMY - THE SEQUEL . . . News and Symptom talk
MedPage today has an article about a non-hormonal drug for hot flashes that is apparently just Paxil renamed. FDA and others worry about misinformation and danger. Such news catches my eye of course, since my DCIS is hormone-dependent.
Now a review, if I get my calendar straight:
Lumpectomy was November 19.
Dec. 4 Two week follow up with surgeon, Dr. Hubbard. My scar looks good. Very little pain; just for an occasional minute or when trying to get to sleep. Red dot at end of steri-strip - Doctor thinks it may be blood?
December 5 Steri strips off. The red dot is fading. Don't know what it is. Horizontal scar visible. Vertical scar seems puckery. I tend to refer to the scars as stitches, but the stitches are actually under the skin and will dissolve.
December 11 Met radiation oncologist, Dr. Sands, who said she likes to start radiation within 6 weeks of lumpectomy. Got much information and statistics; agreed to radiation. My deodorant stopped working, a sure sign that I'm more stressed than I know. Got a gown, and was staged and scanned.
December 16 Day 1 of Radiation. Deodorant stop working again. Not quite like the video. No pain except in my tendinitis upper arm from its position above the shoulder. Breast not often sore.
December 18 Does the right breast look a little different? Nipple color? Any swelling? Allow for my imagination and some poor lighting. A spell of the images I get from migraine; turned off the light and moved away from the laptop. I'm sure stress is a factor; the situation after diagnosis is often stressful.
December 20 Friday of week one. They put more marks on me yesterday; they're still a bit visible. Fifteen more days of radiation after today. Breast still sore occasionally. As I told the nurse earlier, the pain seems to travel the route of the biopsy and then stop. Is this my imagination?
Even though I research questions for the medical oncologist (and the future) I have to focus on the now.
And remember that mood swings don't count as exercise.
Now a review, if I get my calendar straight:
Lumpectomy was November 19.
Dec. 4 Two week follow up with surgeon, Dr. Hubbard. My scar looks good. Very little pain; just for an occasional minute or when trying to get to sleep. Red dot at end of steri-strip - Doctor thinks it may be blood?
December 5 Steri strips off. The red dot is fading. Don't know what it is. Horizontal scar visible. Vertical scar seems puckery. I tend to refer to the scars as stitches, but the stitches are actually under the skin and will dissolve.
December 11 Met radiation oncologist, Dr. Sands, who said she likes to start radiation within 6 weeks of lumpectomy. Got much information and statistics; agreed to radiation. My deodorant stopped working, a sure sign that I'm more stressed than I know. Got a gown, and was staged and scanned.
December 16 Day 1 of Radiation. Deodorant stop working again. Not quite like the video. No pain except in my tendinitis upper arm from its position above the shoulder. Breast not often sore.
December 18 Does the right breast look a little different? Nipple color? Any swelling? Allow for my imagination and some poor lighting. A spell of the images I get from migraine; turned off the light and moved away from the laptop. I'm sure stress is a factor; the situation after diagnosis is often stressful.
December 20 Friday of week one. They put more marks on me yesterday; they're still a bit visible. Fifteen more days of radiation after today. Breast still sore occasionally. As I told the nurse earlier, the pain seems to travel the route of the biopsy and then stop. Is this my imagination?
Even though I research questions for the medical oncologist (and the future) I have to focus on the now.
And remember that mood swings don't count as exercise.
Thursday, December 19, 2013
LUMPECTOMY -- THE SEQUEL Apology
In rechecking, I see I've misspelled Dr. David Spiegel's last name. My sincere apologies.
LUMPECTOMY - THE SEQUEL . . . Yesterday and Building My Arsenal
Day three was entirely different from Day two. Everyone was in a good mood, and things went smoothly, except I left my crime novel in the locker. (No, I still don't like the machine so close to my face, so I still close my eyes.) After ward, Therapist Roy told me that they even have a George Strait CD to play during treatment!
I did my silent war cry once, still not ferociously.
Research : Okay, so radiation is my silent arsenal, and we're putting it to work.
And research is supposedly part of our arsenal. This brings us back to my worn and treasured book The Immune Power Personality, by Henry Dreher. It features research over many years into who gets well. The specifics of cellular immunity are over my head; what I care about is who got well in the studies.
One story, the work of Stanford psychiatrist David Speigel, focuses on certain kinds of supportive therapy on breast cancer patients.
My appointments have been changed to noon, so I have to hurry. When I get home, I'm going to look up Speigel or get a librarian to help me.
I just sneaked a quick look on line for Dr. Speigel, and found a 2010 Newsweek article that said he was still studying effects of supportive-expressive group therapy on the survival of patients with metastatic breast cancer. The article, however, was mostly an interview with him on keeping our new year's resolutions.
I did my silent war cry once, still not ferociously.
Research : Okay, so radiation is my silent arsenal, and we're putting it to work.
And research is supposedly part of our arsenal. This brings us back to my worn and treasured book The Immune Power Personality, by Henry Dreher. It features research over many years into who gets well. The specifics of cellular immunity are over my head; what I care about is who got well in the studies.
One story, the work of Stanford psychiatrist David Speigel, focuses on certain kinds of supportive therapy on breast cancer patients.
My appointments have been changed to noon, so I have to hurry. When I get home, I'm going to look up Speigel or get a librarian to help me.
I just sneaked a quick look on line for Dr. Speigel, and found a 2010 Newsweek article that said he was still studying effects of supportive-expressive group therapy on the survival of patients with metastatic breast cancer. The article, however, was mostly an interview with him on keeping our new year's resolutions.
Wednesday, December 18, 2013
LUMPECTOMY - THE SEQUEL . . . Not peaches and cream
Day 2 wasn't that pleasant - I gave some feedback that wasn't welcome, and felt scolded, then hurried through the appointment. Didn't see the doctor anywhere. Must remember that what they think of me is none of my business. And that this is good training for first days on my next job.
Maybe they want me to hop on the table as soon as I'm in the treatment room. I still deal with the machine by closing my eyes--it looks so heavy overhead.
The treatment was my decision. This afternoon (it is now day 3) I will repeat my silent war cry as I enter the room, then get settled and relax into it.
***
To any of you who have invasive cancer or recurring DCIS:
Today, Breast Cancer Action San Francisco e-mailed me a plea for donation: a letter called: Why I Don't Use the Word Survivor. It is from a woman who had heavy treatment for invasive cancer She included a very sobering quote. Can't find the letter on their site, so despite my hesitations, I am going to repeat the Barbara Brenner quote here. In your research, reading about "survival times" and recurrences, you may have secretly had this same thought:
She wrote: "The term survivor suggests to the world—wrongly—that breast cancer is curable. It is true, thank goodness, that many of us will live long enough to die of something else. But no one who has been diagnosed with invasive breast cancer can ever say truthfully that the cancer will not recur."
Maybe they want me to hop on the table as soon as I'm in the treatment room. I still deal with the machine by closing my eyes--it looks so heavy overhead.
The treatment was my decision. This afternoon (it is now day 3) I will repeat my silent war cry as I enter the room, then get settled and relax into it.
***
To any of you who have invasive cancer or recurring DCIS:
Today, Breast Cancer Action San Francisco e-mailed me a plea for donation: a letter called: Why I Don't Use the Word Survivor. It is from a woman who had heavy treatment for invasive cancer She included a very sobering quote. Can't find the letter on their site, so despite my hesitations, I am going to repeat the Barbara Brenner quote here. In your research, reading about "survival times" and recurrences, you may have secretly had this same thought:
She wrote: "The term survivor suggests to the world—wrongly—that breast cancer is curable. It is true, thank goodness, that many of us will live long enough to die of something else. But no one who has been diagnosed with invasive breast cancer can ever say truthfully that the cancer will not recur."
Tuesday, December 17, 2013
LUMPECTOMY, THE SEQUEL . . . Radiation Day 1; Part 2: Surprise!
First stop was a long visit to the social worker -- did get some handouts on support groups, etc. Since I love to talk, it wasn't too uncomfortable.
Then one of the women I meet yesterday took me toward the dressing area, and introduced me to more treatment professionals and paraprofessionals. When I got my gown, the doctor came in and took arm and asked me how I was feeling. Two women took me past the control room to the treatment room.
Surprise! retraction: the room I was tattooed in last week is not the real treatment room! And the "skinny donut machine" I described just apparently took the scan in the staging room. (Sorry to have misled anyone.)
The real radiation machine is big as photos you may have seen, and industrial looking. They said the big circular end would be very close to me at times. It was. They had to move my arm a speck to make room for it. Kinda like a big steel turtle wanting to cuddle up with me for a nap. I decided on the trusty old MRI technique and just closed my eyes.
When everyone went out to the control room, I mostly kept the eyes closed. The machine moved around and buzzed at times. Once a couple of people came in so quietly I almost didn't know they were there. I could actually hear very soft music far in the background. There didn't seem to be much actual radiation, just a lot of careful adjusting of angles and checking on the the dosage. With my eyes closed, it wasn't really scary. I only said my war cry once, and it was more calm than fierce.
Then to the nurse's room. Nurse Mabel told me a lot of information, wrote down everyone's name next to their professional duties, and and demonstrated a little "walk up the wall" exercise to keep the breast soft and pliable. She put all my information and my schedule in a folder, and showed me the way out.
Through the glass door into the exit hall, I could see a giant patch quilt with appliques that seem to suggest children's cancer experiences. I am thankful to be one person who gets to walk away for the day.
Then one of the women I meet yesterday took me toward the dressing area, and introduced me to more treatment professionals and paraprofessionals. When I got my gown, the doctor came in and took arm and asked me how I was feeling. Two women took me past the control room to the treatment room.
Surprise! retraction: the room I was tattooed in last week is not the real treatment room! And the "skinny donut machine" I described just apparently took the scan in the staging room. (Sorry to have misled anyone.)
The real radiation machine is big as photos you may have seen, and industrial looking. They said the big circular end would be very close to me at times. It was. They had to move my arm a speck to make room for it. Kinda like a big steel turtle wanting to cuddle up with me for a nap. I decided on the trusty old MRI technique and just closed my eyes.
When everyone went out to the control room, I mostly kept the eyes closed. The machine moved around and buzzed at times. Once a couple of people came in so quietly I almost didn't know they were there. I could actually hear very soft music far in the background. There didn't seem to be much actual radiation, just a lot of careful adjusting of angles and checking on the the dosage. With my eyes closed, it wasn't really scary. I only said my war cry once, and it was more calm than fierce.
Then to the nurse's room. Nurse Mabel told me a lot of information, wrote down everyone's name next to their professional duties, and and demonstrated a little "walk up the wall" exercise to keep the breast soft and pliable. She put all my information and my schedule in a folder, and showed me the way out.
Through the glass door into the exit hall, I could see a giant patch quilt with appliques that seem to suggest children's cancer experiences. I am thankful to be one person who gets to walk away for the day.
Monday, December 16, 2013
LUMPECTOMY - THE SEQUEL . . . Radiation day 1
Murphy's Law of breast cancer radiation: you will wake up in the morning with amazing itches, but won't dare wiggle or scratch during treatment. So, of course, over the weekend my dermatitis has gone crazy. (Since it's day 1, I'll be in "the position" with arms raised on the "pillow" for 30 minutes.) I should have practiced not scratching.
So enjoy the day. Luckily, my daughter made lovely peach cobbler with real oats, so I couldn't be grouchy at breakfast.
Making a list:
Take allergy pill so I won't cough during treatment (I hope)
Allow time to drive to CVS in case the doctor finally gives me the tendinitis ointment RX
Finish lunch by 12
Take Tylenol no later than 1:00
Put ointment on arm before you go
Put dermatitis liquid on scalp before you go
Leave early in case road to cancer center is still blocked
Remember to ask for extra blankets in the treatment room.
Rehearse anti-cancer battle cry while changing into gown.
Say your prayers!
Give self a sinful treat after treatment. Or two treats. Or. . no, two is enough.
So enjoy the day. Luckily, my daughter made lovely peach cobbler with real oats, so I couldn't be grouchy at breakfast.
Making a list:
Take allergy pill so I won't cough during treatment (I hope)
Allow time to drive to CVS in case the doctor finally gives me the tendinitis ointment RX
Finish lunch by 12
Take Tylenol no later than 1:00
Put ointment on arm before you go
Put dermatitis liquid on scalp before you go
Leave early in case road to cancer center is still blocked
Remember to ask for extra blankets in the treatment room.
Rehearse anti-cancer battle cry while changing into gown.
Say your prayers!
Give self a sinful treat after treatment. Or two treats. Or. . no, two is enough.
Sunday, December 15, 2013
LUMPECTOMY FOR BEGINNERS and THE WAR CRY
Considering radiation, I had thought three weeks would be all I could take before I started brooding about what was going into me, and my future. But when I said yes, the oncologist, Dr. Sands, said it would be four weeks.
Saturday morning, a wise friend who has had radiation talked with me again. He said that as he lay there, he had said some things to the cancer cells, and they were not polite language. He told me, "This is war."
That's exactly what my head should be doing from the first day: Being consciously determined to fight abnormal cells. Declaring war!
Agreeing to radiation is stockpiling silent weapons. But sometimes a warrior needs a war cry. I'll bring mine. I'll lie there . . .
Silently shouting.
Saturday morning, a wise friend who has had radiation talked with me again. He said that as he lay there, he had said some things to the cancer cells, and they were not polite language. He told me, "This is war."
That's exactly what my head should be doing from the first day: Being consciously determined to fight abnormal cells. Declaring war!
Agreeing to radiation is stockpiling silent weapons. But sometimes a warrior needs a war cry. I'll bring mine. I'll lie there . . .
Silently shouting.
Saturday, December 14, 2013
LUMPECTOMY FOR BEGINNERS . . . what changes my attitude
Something occurred while talking to Becky a couple days ago:
If one woman in eight gets cancer, chances are the women with DCIS are included in that statistic, even if our abnormality is only "the doorway."
When I am in the huge, crowded local market, waiting to thread through the crowd for the wine samples kiosk, there are probably one or two other women there at some stage of their recovery.
That woman pushing the cute, happy tyke in the stroller may have just heard a diagnosis far more scary than mine. That elegant, grey-haired woman at the meat counter may still be getting annual checkups and hoping and wondering.
Yet they are loading up the cart, telling an acquaintance about their new car, tossing in a bottle of vitamin D. Even laughing. Maybe making plans for a party.
I'm tempted to say something corny like Life goes on. So I'll quote my daughter on ". . . the best moments of life are still in the future."
If one woman in eight gets cancer, chances are the women with DCIS are included in that statistic, even if our abnormality is only "the doorway."
When I am in the huge, crowded local market, waiting to thread through the crowd for the wine samples kiosk, there are probably one or two other women there at some stage of their recovery.
That woman pushing the cute, happy tyke in the stroller may have just heard a diagnosis far more scary than mine. That elegant, grey-haired woman at the meat counter may still be getting annual checkups and hoping and wondering.
Yet they are loading up the cart, telling an acquaintance about their new car, tossing in a bottle of vitamin D. Even laughing. Maybe making plans for a party.
I'm tempted to say something corny like Life goes on. So I'll quote my daughter on ". . . the best moments of life are still in the future."
Friday, December 13, 2013
LUMPECTOMY FOR BEGINNERS . . . in the radiation room
If your DCIS is low grade and you are an older patient, you may want to go to http://www.medpagetoday.com and read some of the peer-reviewed article on radiation findings.
Yesterday, after I agreed to radiation, they gave me a gown and took me to the treatment room. I saw a shiny black, low bench, definitely suitable for an upscale bus stop. They settled me on it with a fresh blanket, and positioned my arms above my shoulders; my tendinitis was not happy about this. Overhead was a lighted mural of branches and colored leaves.
As my girlfriend predicted, there was a strange, lumpy pad under my upper torso. This takes a specific mold of where my shoulders, torso, and arms will be for every treatment.
I mentioned my sinus problems, and they smilingly said, If you have to cough, cough upward. They told me if the cough moved me too much, the machine would stop.
Then the tattoos--more road signs for the radiation. Just three tiny needle jabs with some sort of permanent ink. This keeps the marks from coming off in the shower.
At some points, the bench rolled me back with my breast area under a metal arch. Apparently this is where the radiation comes from. It is perhaps less than a foot thick, like half a big, skinny donut, so I was not really enclosed. Note to self: not claustrophobic.
The whole session was comfortable and non-scary, and the staff were kind, happy, pleasant.
After I got home, I found a paper in my folder saying that the first visit Monday would be a half hour, and if I wasn't comfortable in the position, I should take a Tylenol an hour ahead.
Thursday, December 12, 2013
LUMPECTOMY FOR BEGINNERS . . . the radiation oncologist visit and . . .
All I promised my surgeon was that I'd talk to Dr. Sands. I parked in Radiation Patient and opened the door to a blank wall and big black letters: CANCER, indicating I was right next to the radiation department. The receptionist was cheerful; I liked the holiday decorations and the very casual dress code. Of course, more than the usual snowdrift of paper work.
They put me in the chilly exam room, making sure I had the correct height chair and even a warm blanket, for watching a 15 minute video on radiation. That sounded like way too much information in one dose, but I watched. Nothing too new, but the woman in the video didn't seem to have any protection on other parts of her head and torso.
The doctor came in dressed less casually than the office staff, and carrying a lot of paper. I was armed with a list of my questions on whether I could handle radiation considering my whole medical picture. At the end of my paper were some statistics I got from Sloan Kettering interactive page. They indicated that I'd better get some radiation and medicine to protect my future.
The doctor gave me a sort of orientation - the radiation facility belongs to the hospital, and so on. Then she presented some studies indicating the long-term life extension and freedom from recurrance that radiation can give.
In between there somewhere I asked my questions and told my hesitations.
Then I mentioned that the woman in the video didn't seem to have the rest of her body protected. Dr. Sands said there were no lead blankets because the radiation would go right thru them This was not reassuring.
She explained, drawing a diagram, that they protect the lungs by using very precisely aimed radiation. Her drawing emphasized that only one slight edge of a lung would be involved--being right next to the last bit of the target radiation area.
Somewhere deep inside I thought again "it's not so targeted that personnel can stay in the room!"
She went through the side effects list, long-term and short, and told me these were not going to happen to me. She mentioned the huge population in which one or two persons might have serious side effects.
I read one more side effects story, and she said: It's your decision; but you have to believe what I tell you. These things are not going to happen to you."
.
By the time we were finished, my mouth just said: I'm tempted to say Yes. Somehow my fear had gone away.
She said There would be three weeks of radiation followed by four days of specific focus on one small area that had been diagnosed. So I said yes
Then she told me we would go in right then to work on "staging,"establishing my exact position to lie in every day to make sure the rays would go to the right places.
Next post: the staging in the radiation room.
They put me in the chilly exam room, making sure I had the correct height chair and even a warm blanket, for watching a 15 minute video on radiation. That sounded like way too much information in one dose, but I watched. Nothing too new, but the woman in the video didn't seem to have any protection on other parts of her head and torso.
The doctor came in dressed less casually than the office staff, and carrying a lot of paper. I was armed with a list of my questions on whether I could handle radiation considering my whole medical picture. At the end of my paper were some statistics I got from Sloan Kettering interactive page. They indicated that I'd better get some radiation and medicine to protect my future.
The doctor gave me a sort of orientation - the radiation facility belongs to the hospital, and so on. Then she presented some studies indicating the long-term life extension and freedom from recurrance that radiation can give.
In between there somewhere I asked my questions and told my hesitations.
Then I mentioned that the woman in the video didn't seem to have the rest of her body protected. Dr. Sands said there were no lead blankets because the radiation would go right thru them This was not reassuring.
She explained, drawing a diagram, that they protect the lungs by using very precisely aimed radiation. Her drawing emphasized that only one slight edge of a lung would be involved--being right next to the last bit of the target radiation area.
Somewhere deep inside I thought again "it's not so targeted that personnel can stay in the room!"
She went through the side effects list, long-term and short, and told me these were not going to happen to me. She mentioned the huge population in which one or two persons might have serious side effects.
I read one more side effects story, and she said: It's your decision; but you have to believe what I tell you. These things are not going to happen to you."
.
By the time we were finished, my mouth just said: I'm tempted to say Yes. Somehow my fear had gone away.
She said There would be three weeks of radiation followed by four days of specific focus on one small area that had been diagnosed. So I said yes
Then she told me we would go in right then to work on "staging,"establishing my exact position to lie in every day to make sure the rays would go to the right places.
Next post: the staging in the radiation room.
Wednesday, December 11, 2013
LUMPECTOMY FOR BEGINNERS.. . an oops?
I just got a letter cautioning me against worrying all the time. Actually I don't worry as much as one might think, and didn't mean to suggest that I do.. And I don't think other women with DCIS worry all the time. Hope not.
Here's what else I do:
Look for warmer clothes. Greater Houston area can be freezing, and the Mayo Clinic book suggests I might want to aim for 5 hours of exercise! every week to prevent cancer. You know, like the tough woman detectives in my addictive mystery novels - they run miles before breakfast. Maybe I need a dog . .
Go for my walk, which is over a thousand steps but not 10,000.
Pray that I'll like the radiation oncologist.
Load the dishwasher. Let the household cats in and out and in. Laundry. Write. Read. Meditate.
Go to a meeting. Talk with my family about other things, not about DCIS. I text my daughter about significant appointments and results.
Go to Starbucks and feel like a member of the community. ( A coffee shop or two was my refuge in California, and I met some great people there.)
Sing along with the music on the car radio, and enjoy driving.
Give thanks for new friends like the neighbor who had radiation and it did not make her sick.
Give thanks for other friends and my dear family.
Give thanks for some magnificent doctors in my life in both states.
Confide in people I trust.
Here's what else I do:
Look for warmer clothes. Greater Houston area can be freezing, and the Mayo Clinic book suggests I might want to aim for 5 hours of exercise! every week to prevent cancer. You know, like the tough woman detectives in my addictive mystery novels - they run miles before breakfast. Maybe I need a dog . .
Go for my walk, which is over a thousand steps but not 10,000.
Pray that I'll like the radiation oncologist.
Load the dishwasher. Let the household cats in and out and in. Laundry. Write. Read. Meditate.
Go to a meeting. Talk with my family about other things, not about DCIS. I text my daughter about significant appointments and results.
Go to Starbucks and feel like a member of the community. ( A coffee shop or two was my refuge in California, and I met some great people there.)
Sing along with the music on the car radio, and enjoy driving.
Give thanks for new friends like the neighbor who had radiation and it did not make her sick.
Give thanks for other friends and my dear family.
Give thanks for some magnificent doctors in my life in both states.
Confide in people I trust.
Tuesday, December 10, 2013
LUMPECTOMY FOR BEGINNERS - The other F word
My friend was right. It is a shock to hear the word cancer on the phone or in the doctor's office. My supportive neighbor says I'm handling it well. I don't talk about fear -- but now I'm thinking about it
Learning about the steriotactic biopsy was Fear and resistance - the procedure sounded barbaric to me. And yet it went well and I had a good time at the hospital.
And I was able to compartmentalize about the lumpectomy. I trusted the surgeon, and after all, I've had plenty of successful experience with surgery. I didn't even feel fear beforehand. Maybe the doctor's telling me he had said a prayer was a help.
Then the post-op two-week appointment!. (The surgeon had told me when we met that he would recommend I see a radiation oncologist and a medical oncologist.) I read the pathology report again, more thoroughly. Nothing on the report, as I've mentioned, gave me any hope of avoiding radiation. So after we talked a little about the incision and the size of the specimen, he gave me the paper with the oncologists' contact information, and his reasons for choosing them.
I went home and put the contact information sheet in a red file. I talked with my neighbor, I blogged about when to call the radiation doctor's number. I reminded myself that she couldn't make me do anything I don't want to do.
I focused my research, still a lot of it from Mayo Clinic, on radiation. I read other women's stories, and I felt Fear. I made a list of my radiation concerns and felt FEAR. I quoted some things, and felt FEAR. I included a list of medical conditions I already have, and the one thing I've shared with friends: how many x-rays I've had.
I copied statistics from Sloan Kettering on how much longer I would be free of cancer if I had radiation and certain long-term meds. They were compelling. But . . .
In spite of having lost a best friend to cancer, I'm obviously more afraid of the treatment than I am of getting more cancer. Or is the Fear of cancer buried so deep that I don't feel it, and so huge, that I don't dare feel it?
I copied statistics from Sloan Kettering on how much longer I would be free of cancer if I had radiation and certain long-term meds. They were compelling. But . . .
There is a pattern here:
In spite of having lost a best friend to cancer, I'm obviously more afraid of the treatment than I am of getting more cancer. Or is the Fear of cancer buried so deep that I don't feel it, and so huge, that I don't dare feel it?
Monday, December 9, 2013
LUMPECTOMY FOR BEGINNERS post-op; makin' a list and checkin' it
After reading about DCIS in the Mayo Clinic book and website, etc.
Questions for a radiologist
How do you protect my lungs?
I had so many chest and other x-rays with the spine condition and a recent tendinitis. Don't they make this more dangerous?
Can it wait until my current health concerns are treated better?
How tired will I really get?
Will I need a cough suppressant every time?
My skin is so sensitive that the steri strips made a blister and red welts after the biopsy and surgery; will this be worse? I burn rather than tan. Will I be too "sunburned" to wear a bra?
How many days of treatment do I need?
Questions for a radiologist
How do you protect my lungs?
I had so many chest and other x-rays with the spine condition and a recent tendinitis. Don't they make this more dangerous?
Can it wait until my current health concerns are treated better?
How tired will I really get?
Will I need a cough suppressant every time?
My skin is so sensitive that the steri strips made a blister and red welts after the biopsy and surgery; will this be worse? I burn rather than tan. Will I be too "sunburned" to wear a bra?
How many days of treatment do I need?
Sunday, December 8, 2013
LUMPECTOMY FOR BEGINNERS - Post Op, take a breath
The steri strips are off. I wish I'd asked the doctor to take them off - it had been two weeks. I liked the surgery area better with the strips on. But I'll see him next month and we can talk about how it looks and feels. I didn't have any infection; no serious bruises. Sometimes it hurts for a bit, then doesn't. I do wear my soft bra, but usually not to sleep.
My friend, who has been through some of this already, advised me not to judge myself--that some of the fatigue can be due to the diagnosis that led to the lumpectomy. She reminded me that nobody is really prepared to hear she has cancer (despite what some now call DCIS. . . "baby cancer" or "doorway to cancer" or "not cancer." Hearing it is a shock at some level.
Life does change. New doctors (a fear of mine in a new state), appointments, reading the Mayo clinic site like the daily newspaper. And reading my pathology report . . . which was more disappointing than I admitted to myself.
I'm older than my friend and in this new state and my new environment. I need to be realistic instead of apologetic, and take the breaks I need. Breaks to be sure how I really feel and then to put it in perspective.
And a wise, kind person left a Starbucks gift card on my steering wheel! Treats are good.
My friend, who has been through some of this already, advised me not to judge myself--that some of the fatigue can be due to the diagnosis that led to the lumpectomy. She reminded me that nobody is really prepared to hear she has cancer (despite what some now call DCIS. . . "baby cancer" or "doorway to cancer" or "not cancer." Hearing it is a shock at some level.
Life does change. New doctors (a fear of mine in a new state), appointments, reading the Mayo clinic site like the daily newspaper. And reading my pathology report . . . which was more disappointing than I admitted to myself.
I'm older than my friend and in this new state and my new environment. I need to be realistic instead of apologetic, and take the breaks I need. Breaks to be sure how I really feel and then to put it in perspective.
And a wise, kind person left a Starbucks gift card on my steering wheel! Treats are good.
Friday, December 6, 2013
LUMPECTOMY FOR BEGINNERS _ When to call the radiation oncologist
Dr. Hubbard suggested that I could call the radiation oncologist after the holidays, to schedule a talk. I thought I should call right away. But . . .
I wish my health were better now. I want to be at optimum health if I'm told I should have radiation. I'm worried because I've read in places including the Mayo Clinic book that I would experience fatigue with the treatment. But I already have frequent tiredness. And the family will be gone the last week of this month, so I'll be tired alone (this is the woman who lived alone for 20 years),
Three days ago, in response to my complaints, the digestive health doctor allowed big changes to my medicine regime. I need time to see if the new routine helps.
And, I'm worried about all the x-rays that were connected to the spine problem, including some chest films. But if I need radiation, I'll need it anyway.
And my lungs already took a beating during the coughing virus and two subsequent infections in 2012.
What I should be doing is keeping up my search for ways to be more healthy every day.
And I should print this out to help me remember what to talk to the radiation oncologist about.
Three days ago, in response to my complaints, the digestive health doctor allowed big changes to my medicine regime. I need time to see if the new routine helps.
And, I'm worried about all the x-rays that were connected to the spine problem, including some chest films. But if I need radiation, I'll need it anyway.
And my lungs already took a beating during the coughing virus and two subsequent infections in 2012.
What I should be doing is keeping up my search for ways to be more healthy every day.
And I should print this out to help me remember what to talk to the radiation oncologist about.
Thursday, December 5, 2013
LUMPECTOMY FOR BEGINNERS Post-op visit part 2
Back to Dr. Hubbard. I requested another look at the pathology report - 3 pages. When I saw the size of the piece removed, I was startled. It was bigger than I had thought, and nothing in the report led me to believe I could avoid radiation. (But no, I'm not a doctor.) I don't look that different, really.
The specimen was estrogen dependent, and as I expected the surgeon mentioned tamoxifen again, with better statistics than I've read.
He looked at my incision and said, "Looks good." It has looked good from the beginning. You'd never think to look at me that so much was removed.
He gave me glowing reports on the oncologists, without pushing. Suggested I might at least like to see them. And I expect to do that. Told me how expert the radiation oncologist is - that he would go to her if he needed radiation, and she would not give it to me if I didn't need it.
Told me he thought I would enjoy the medical oncologist, but if I don't like him, Dr. H will send me to someone else.
Two doctors I've never seen, and I'm still very aware that I'm far from my long-trusted primary doctor in L.A.
So, my favorite part of today's visit was Dr. Hubbard's telling me to make another appointment for about four weeks from now. I had feared leaving his care, letting go of the trapeze and flying thru the air, so to speak. This way it feels like there's a net under me.
The specimen was estrogen dependent, and as I expected the surgeon mentioned tamoxifen again, with better statistics than I've read.
He looked at my incision and said, "Looks good." It has looked good from the beginning. You'd never think to look at me that so much was removed.
He gave me glowing reports on the oncologists, without pushing. Suggested I might at least like to see them. And I expect to do that. Told me how expert the radiation oncologist is - that he would go to her if he needed radiation, and she would not give it to me if I didn't need it.
Told me he thought I would enjoy the medical oncologist, but if I don't like him, Dr. H will send me to someone else.
Two doctors I've never seen, and I'm still very aware that I'm far from my long-trusted primary doctor in L.A.
So, my favorite part of today's visit was Dr. Hubbard's telling me to make another appointment for about four weeks from now. I had feared leaving his care, letting go of the trapeze and flying thru the air, so to speak. This way it feels like there's a net under me.
Wednesday, December 4, 2013
LUMPECTOMY FOR BEGINNERS instincts and post-op visit
The best advice I got from Dr. Zeitler's PULSE Be Lucky post was " trust your instincts but do not follow them blindly."
Today I will see the surgeon for the 2-week post lumpectomy check up.
Then my instinct got connected to my reasoning power.
I rang the doorbell of a neighbor who is a breast cancer survivor. She told me her story, including that radiation did not make her sick. She gave me loads of support. And told me she wants to talk after today's appointment. She told me that she and her husband had really liked her oncologist. Will I?
I reminded myself that "I'll need a second opinion," is not cussing if you say it politely. That it's possible to look for a way to get along, But that sometimes we have to say goodbye to doctors if we cannot get along.
Today I'll take those two names.
Today I will see the surgeon for the 2-week post lumpectomy check up.
Before the surgery, I had asked him plenty of questions about how I would be afterward. He told me that the pathology report would probably say I didn't need any more surgery. Of course I wanted to be told I could just go home and get well.
He had seemed sure that I was getting ahead of myself, but he reluctantly said he would recommend that I see a radiation oncologist and a medical oncologist. The radiation oncologist is a woman, and my experiences with female doctors has not been great. Radiation! A woman! My instinct said "RUN."
And medical oncologist! And tamoxifen was mentioned. My instinct said, "Don't make me!!! I have enough problems!"
Then my instinct got connected to my reasoning power.
I rang the doorbell of a neighbor who is a breast cancer survivor. She told me her story, including that radiation did not make her sick. She gave me loads of support. And told me she wants to talk after today's appointment. She told me that she and her husband had really liked her oncologist. Will I?
I reminded myself that "I'll need a second opinion," is not cussing if you say it politely. That it's possible to look for a way to get along, But that sometimes we have to say goodbye to doctors if we cannot get along.
Today I'll take those two names.
Tuesday, December 3, 2013
LUMPECTOMY FOR BEGINNERS and Don't leave the locker room without this
There are legions of women my age who know more about sports than I do. This does not stop me from writing about hoops and pigskin and jocks.
In the movie Hoosiers, and a million other films and books, the players don't leave the locker room between halves (or whatever) even after an avalanche of abuse, without some bit of encouragement like:
Plow 'em under! (Yes, I"m in Texas) Or Make me Proud! Get out there and make HISTORY! Or Show 'em whatchu got!
The advice I get in hospital locker rooms is usually: Put the gown on open to the front and go thru the brown door. This is somewhat inadequate to prepare me for what's behind the brown door, and leaves WAY too much to my imagination.
Before I go out the brown door next time, I should have locker room wisdom in my pocket, or hidden in my underpants if necessary. For instance: I'm a Healer! Some of the best moments in life are in the future! I've got plans! Or, to be more locker-roomish, “You gotta play till the ninth inning, man.” * And even Show 'em whatchu got!
What I got is a surgeon I trust. What I got is a successful lumpectomy. What I got is a history including successful recovery from spine fusion despite postponing too long. (Note to self: If I agree to more cancer treatment, don't wait too long.) What I got is the prayer and meditation.
What I got is good-looking, active CHEERLEADERS who lived through what's in this next quarter. I got them by daring to speak up about DCIS. And I spoke to these men and women because they didn't keep their own cancer a secret.
I hope what you got is PLANS for your own particular future. GOALS. Show "em whatchu got!
*John Croslin in Austin Kleon,
In the movie Hoosiers, and a million other films and books, the players don't leave the locker room between halves (or whatever) even after an avalanche of abuse, without some bit of encouragement like:
Plow 'em under! (Yes, I"m in Texas) Or Make me Proud! Get out there and make HISTORY! Or Show 'em whatchu got!
The advice I get in hospital locker rooms is usually: Put the gown on open to the front and go thru the brown door. This is somewhat inadequate to prepare me for what's behind the brown door, and leaves WAY too much to my imagination.
Before I go out the brown door next time, I should have locker room wisdom in my pocket, or hidden in my underpants if necessary. For instance: I'm a Healer! Some of the best moments in life are in the future! I've got plans! Or, to be more locker-roomish, “You gotta play till the ninth inning, man.” * And even Show 'em whatchu got!
What I got is a surgeon I trust. What I got is a successful lumpectomy. What I got is a history including successful recovery from spine fusion despite postponing too long. (Note to self: If I agree to more cancer treatment, don't wait too long.) What I got is the prayer and meditation.
What I got is good-looking, active CHEERLEADERS who lived through what's in this next quarter. I got them by daring to speak up about DCIS. And I spoke to these men and women because they didn't keep their own cancer a secret.
I hope what you got is PLANS for your own particular future. GOALS. Show "em whatchu got!
*John Croslin in Austin Kleon,
Monday, December 2, 2013
LUMPECTOMY FOR BEGINNERS The daily dozen or so
I still have the steri-strips over my incision. The written instructions from the surgery center said leave them on up to three weeks.
Sometimes the incision is sore; or I think I'm sore along the route of the biopsy. Other times I forget the incision is there. I wore a bra to sleep the first week, now I sometimes feel better without it at night. I usually sleep on my side, so it's sometimes hard to get comfortable. Then what works is sleeping on my back with a pillow under my knees.
The only instruction the surgeon was firm about was to skip the three-pound dumbbells. I used that as an excuse to skip my ankle weights, too. Not good. Why am I lazy about the ankle weights?
If I'm the first one awake, I do a of exercises in bed--some from spine rehab, and still very useful..
Pressing my knee against the bed --alternating legs.
Moving the leg to the side and back, ten times, then the other leg.
Pulling my heel along the bed toward my buns--ten times, then the other leg.
Also tendinitis exercises that don't hurt my incision, pressing both my shoulders against the bed 14 times. Gently. Then on my back, pulling my elbows down my side 14 times.
And a couple more for neck and tendons. In short: keeping up upper body strength without the dumbbells.
Above all, walking. Since it's wintery here some days, I venture out for a few minutes before I put on my sunscreen moisture - just to get some Vitamin D, which I may need, really need if I have more treatments.
Sometimes the incision is sore; or I think I'm sore along the route of the biopsy. Other times I forget the incision is there. I wore a bra to sleep the first week, now I sometimes feel better without it at night. I usually sleep on my side, so it's sometimes hard to get comfortable. Then what works is sleeping on my back with a pillow under my knees.
The only instruction the surgeon was firm about was to skip the three-pound dumbbells. I used that as an excuse to skip my ankle weights, too. Not good. Why am I lazy about the ankle weights?
If I'm the first one awake, I do a of exercises in bed--some from spine rehab, and still very useful..
Pressing my knee against the bed --alternating legs.
Moving the leg to the side and back, ten times, then the other leg.
Pulling my heel along the bed toward my buns--ten times, then the other leg.
Also tendinitis exercises that don't hurt my incision, pressing both my shoulders against the bed 14 times. Gently. Then on my back, pulling my elbows down my side 14 times.
And a couple more for neck and tendons. In short: keeping up upper body strength without the dumbbells.
Above all, walking. Since it's wintery here some days, I venture out for a few minutes before I put on my sunscreen moisture - just to get some Vitamin D, which I may need, really need if I have more treatments.
Sunday, December 1, 2013
LUMPECTOMY FOR BEGINNERS - The whole patient? Or?
I cancelled my appointment with the Digestive Health doc. (Because after all, I'll have these breast related appointments.) Then I read the circular that comes with the tummy medicine, and quickly re-scheduled my Monday visit with her.
I had felt earlier that the dentist and the GI and whatever were a nuisance at this time.
Then I told a neighbor and cancer survivor what I've shared here: that I am a whole person. And most of me is well. So don't I need to take care of all of me? I'll make my dentist appointment, too.
I keep talking and writing about the patient's experience. Perhaps I should say instead:
I had felt earlier that the dentist and the GI and whatever were a nuisance at this time.
Then I told a neighbor and cancer survivor what I've shared here: that I am a whole person. And most of me is well. So don't I need to take care of all of me? I'll make my dentist appointment, too.
I keep talking and writing about the patient's experience. Perhaps I should say instead:
the whole person's experience as a patient!
Friday, November 29, 2013
LUMPECTOMY FOR BEGINNERS And . . .
Even if you have never read PULSE voices from the heart of medicine
Please read the story BE LUCKY (I think it may have posted tonight, Friday.) Although it is not about breast cancer, it gave me some glances at good news and gave me some good advice.
There can be more than one incidence of bad news, and there can be amazing developments and good news and decisions that turn out to be right.
Please read the story BE LUCKY (I think it may have posted tonight, Friday.) Although it is not about breast cancer, it gave me some glances at good news and gave me some good advice.
There can be more than one incidence of bad news, and there can be amazing developments and good news and decisions that turn out to be right.
LUMPECTOMY FOR BEGINNERS: the research forest
There's even a road here called Research Forest. There are many trees, almost no road signs, it's hard to see the building you want, and one medical office is approached thru the driveway of a gas station.
That sounds like what I wade through to research DCIS, and what I may want to ask the surgeon at my post-op appointment next week.
I just read some material on line from Mayo Clinic that is almost 5 years old. .It mentions that some controversy about the treatments. I was stunned to find how many days of radiation were being used at the time of this article.
The article also mentioned that tamoxifen does not prolong life for DCIS patients. I'm completely mystified about the used of "prolonged life" in all these discussions?!
I know there are women who just get good lumpectomy results and go home. No radiation, no tamoxifen.
I still think I'll go to see the radiation oncologist, just to see if there's anything new that isn't so scary. But before I go, I want to find some material on what happens to women who do not choose radiation OR tamoxifen.
I need to MAKE A LIST OF QUESTIONS I WOULD ASK THE RADIATION ONCOLOGIST IF I GO. And I think I'll search Breast Cancer Action SF website again.
That sounds like what I wade through to research DCIS, and what I may want to ask the surgeon at my post-op appointment next week.
I just read some material on line from Mayo Clinic that is almost 5 years old. .It mentions that some controversy about the treatments. I was stunned to find how many days of radiation were being used at the time of this article.
The article also mentioned that tamoxifen does not prolong life for DCIS patients. I'm completely mystified about the used of "prolonged life" in all these discussions?!
I know there are women who just get good lumpectomy results and go home. No radiation, no tamoxifen.
I still think I'll go to see the radiation oncologist, just to see if there's anything new that isn't so scary. But before I go, I want to find some material on what happens to women who do not choose radiation OR tamoxifen.
I need to MAKE A LIST OF QUESTIONS I WOULD ASK THE RADIATION ONCOLOGIST IF I GO. And I think I'll search Breast Cancer Action SF website again.
Thursday, November 28, 2013
LUMPECTOMY FOR BEGINNERS What I know
I could worry more about things that may be urged by the doctors. Medicine, machines. Who knows best?
I worry less right now because I know: I am not a disease. I am a person and most of me is well.
Because I am a "healer."
I did not use any IV pain medicine after the lumbar fusion.
I climbed half a flight of stairs without a PT the second day home from post-up spine rehab, because I was determined to get into that restaurant and eat dinner with my daughter. Like a well person.
I had a medical scare several years ago. Umpteen biopsies and tests later, there are no further symptoms.
Even my California dentist said I'm a healer.
I dare to believe this illness may be (or may have been) a blessing.
I have plans, and those plans don't include being an invalid.
I still meet women in their eighties who are doing fine, and looking good. One of them was still skiing last time I spoke to her. One of them, who exercises in the pool three mornings a week, is a breast cancer survivor.
It's okay to plan for a future decade.
I worry less right now because I know: I am not a disease. I am a person and most of me is well.
Because I am a "healer."
I did not use any IV pain medicine after the lumbar fusion.
I climbed half a flight of stairs without a PT the second day home from post-up spine rehab, because I was determined to get into that restaurant and eat dinner with my daughter. Like a well person.
I had a medical scare several years ago. Umpteen biopsies and tests later, there are no further symptoms.
Even my California dentist said I'm a healer.
I dare to believe this illness may be (or may have been) a blessing.
I have plans, and those plans don't include being an invalid.
I still meet women in their eighties who are doing fine, and looking good. One of them was still skiing last time I spoke to her. One of them, who exercises in the pool three mornings a week, is a breast cancer survivor.
It's okay to plan for a future decade.
Wednesday, November 27, 2013
LUMPECTOMY FOR BEGINNERS AND . . .questions, and questions
The good results from pathology just bring up more and more questions, and give me time to see if any of the questions really need to be asked of the surgeon next week. When I pressed him earlier for more information, he said he would recommend that I see two oncologists. One is a woman. I didn't write down the names. I would like to know why he chose those particular ones.
I'm doing much research on radiation and medicines, much of it on Mayo Clinic site. So much research goes into one tiny finding, and who will find it and build on it? Did I mention that I've ordered the Mayo Clinic Breast Cancer Book? It may get here the day before the post-op appointment.
Heard (third hand) that one doctor expects some of the new medicines may be available sometime in 2014.
The surgeon said I don't have to see either oncologist. I hear about friends of friends near my age who simply went home after the lumpectomy. I want to know what the statistics are for women who, for good reasons, did not choose radiation or drugs.
At least, I have time to learn more.
I'm doing much research on radiation and medicines, much of it on Mayo Clinic site. So much research goes into one tiny finding, and who will find it and build on it? Did I mention that I've ordered the Mayo Clinic Breast Cancer Book? It may get here the day before the post-op appointment.
Heard (third hand) that one doctor expects some of the new medicines may be available sometime in 2014.
The surgeon said I don't have to see either oncologist. I hear about friends of friends near my age who simply went home after the lumpectomy. I want to know what the statistics are for women who, for good reasons, did not choose radiation or drugs.
At least, I have time to learn more.
Tuesday, November 26, 2013
LUMPECTOMY FOR BEGINNERS: Results day
Dr. Hubbard called yesterday afternoon, hours after I blogged, and said he was going to make my day.
No invasive cancer, clear margins on the tissue sent to the lab, so no second "ectomy" necessary!
Celebrated by getting my car winterized.in the pouring rain.
Now another week of peace until the post-op appointment, where I expect to get the names and numbers of two oncologists the surgeon recommends that I see. I will probably see them. Will I take the extreme measures I expect them to recommend?
Some wise person said: "When does this decision have to be made?"
Not today.
Today is for the library, and sending some cards, enjoying my mobility, and many good things.
Some wise person said: "When does this decision have to be made?"
Not today.
Today is for the library, and sending some cards, enjoying my mobility, and many good things.
Monday, November 25, 2013
LUMPECTOMY FOR BEGINNERS- Day 7
Somehow I've managed to keep very busy and not make the surgeon's 2-week appointment. So far no results about the "lump." Why do I feel a little fear around making this call? Probably a combination of old things like fear of authority figures that leads me to believe a doctor can make me do something I don't think is a good idea. The choices in my future seem like choices between two unpleasant alternatives. Rotten and dangerous.
And fear of the unknown since I don't have any results yet. Okay. Made the appointment.
It's easier to keep me as a person separate from the disease if I'm not talking to doctors, but I did accept an offer to receive some info from an RN friend of a friend who's done several unpleasant parts of the process.
And I keep re-reading The Immune Power Personality.
I'd like to go for some psychology therapy -- something else I've postponed for so long.
Be well, and let me know what you think.
And fear of the unknown since I don't have any results yet. Okay. Made the appointment.
It's easier to keep me as a person separate from the disease if I'm not talking to doctors, but I did accept an offer to receive some info from an RN friend of a friend who's done several unpleasant parts of the process.
And I keep re-reading The Immune Power Personality.
I'd like to go for some psychology therapy -- something else I've postponed for so long.
Be well, and let me know what you think.
Sunday, November 24, 2013
LUMPECTOMY FOR BEGINNERS Day 6 Unexpected help
I'm still sleeping in a soft bra just like a little insurance policy because I don't know how fast the inside area heals. But basically I feel so normal . . .
The biggest surprise is that I have confided in a couple of guys about this, and I didn't expect to do that. Long ago on a first date, my date stopped his little red car half a block from my house. He said, "You seem like a very private person, and I want to kiss you."
I still like plenty of privacy. But the spine injury made me less private. And then, the walker--not a private thing, if you ever want to go outdoors. Even before the walker, I had told friends about the spine problem.
But breasts? Grandma would be shocked. But it's not her life. I think we choose the people we trust. Or, the universe sends some we trust. And remember what James Lee Burke said about some people we see for the first time, and we know they're family. . .or words to that affect. It's showdown time now. I tell strangers on this blog. I tell the trusted ones; I thank a trusted one for his openness about his march down similar corridors. And they don't have to be women.
The biggest surprise is that I have confided in a couple of guys about this, and I didn't expect to do that. Long ago on a first date, my date stopped his little red car half a block from my house. He said, "You seem like a very private person, and I want to kiss you."
I still like plenty of privacy. But the spine injury made me less private. And then, the walker--not a private thing, if you ever want to go outdoors. Even before the walker, I had told friends about the spine problem.
But breasts? Grandma would be shocked. But it's not her life. I think we choose the people we trust. Or, the universe sends some we trust. And remember what James Lee Burke said about some people we see for the first time, and we know they're family. . .or words to that affect. It's showdown time now. I tell strangers on this blog. I tell the trusted ones; I thank a trusted one for his openness about his march down similar corridors. And they don't have to be women.
Saturday, November 23, 2013
LUMPECTOMY FOR BEGINNERS day five Mad as hell
The morning opened bright and cloudy and pain free, with the news that a college friend had the same diagnosis as I did, and is scheduling her lumpectomy.
ONE OUT OF EIGHT WOMEN is so real to me this week! It isn't a statistic. It's my neighbors, my best friend in TX, and acquaintances who haven't told me. It's a friend with no breasts, and a friend who died at the beach. Is it the woman in Starbucks who smiles at me every week?
How many does it take before we admit we're mad as hell? How many of us aren't even mad yet?
Yes, it's wonderful that there are new treatments for women with worse cases than mine. But if we don't stop this horror before it starts, we'll be walking and running forever for new cures forever,and watching women die.
When will I see a WALK TO FIND THE CAUSE? Polio stopped because finding the virus made the vaccine possible.
Who's afraid that his company is manufacturing a cause?
ONE OUT OF EIGHT WOMEN is so real to me this week! It isn't a statistic. It's my neighbors, my best friend in TX, and acquaintances who haven't told me. It's a friend with no breasts, and a friend who died at the beach. Is it the woman in Starbucks who smiles at me every week?
How many does it take before we admit we're mad as hell? How many of us aren't even mad yet?
Yes, it's wonderful that there are new treatments for women with worse cases than mine. But if we don't stop this horror before it starts, we'll be walking and running forever for new cures forever,and watching women die.
When will I see a WALK TO FIND THE CAUSE? Polio stopped because finding the virus made the vaccine possible.
Who's afraid that his company is manufacturing a cause?
Friday, November 22, 2013
Day 4 PS
I couldn't resist stealing this quote from Healthcare Design Mag on line today:
Satchel Paige. . . : "It's not what you don't know that hurts you, it's what you 'know' that just ain't so."
Satchel Paige. . . : "It's not what you don't know that hurts you, it's what you 'know' that just ain't so."
LUMPECTOMY FOR BEGINNERS Day 4
Somewhere the part of me that was excised is either being studied by a pathologist or in storage waiting its turn. Meanwhile, a lot is on hold.
The nice thing about being on hold is that nobody is going to do anything to me that hurts today. The other nice thing is I don't have to struggle today with the impossible decisions about scary medicine, etc. The bad thing is I'm on hold.
My Literacy Program tutoring client did not appear for her appointment. Should I continue to pursue that until I know what I'll decide about treatment? How well I'll feel in the coming months? Or how lousy. Will I be able to show up for her and pay attention to the lessons and to her?
And forget getting a job. If we already have a job, somehow we get there and do our best. And usually they cut us some slack. But if we're new?
When is not enough information doing me a favor?
The nice thing about being on hold is that nobody is going to do anything to me that hurts today. The other nice thing is I don't have to struggle today with the impossible decisions about scary medicine, etc. The bad thing is I'm on hold.
My Literacy Program tutoring client did not appear for her appointment. Should I continue to pursue that until I know what I'll decide about treatment? How well I'll feel in the coming months? Or how lousy. Will I be able to show up for her and pay attention to the lessons and to her?
And forget getting a job. If we already have a job, somehow we get there and do our best. And usually they cut us some slack. But if we're new?
When is not enough information doing me a favor?
Thursday, November 21, 2013
LUMPECTOMY FOR BEGINNERS Day 3
Took the dressing off before the shower last night. I guess I was expecting something gruesome from a TV crime show. Instead, the incision is just like a vertical pencil line near my armpit. With the steri-strips for decoration.
Today at noon another 24 hours is up, and I'm out of this Ace bandage. I remember rushing to Starbucks with the even bigger bandage after the biopsy, convinced that what I needed was a treat. No one even noticed my "flapper" look with flat silhouette courtesy of Ace. There's a lesson in that somewhere about how I obsess on dressing for a coffee shop.
Today, per the surgery center's instructions, if I'm convinced my reactions are quick as normal, I can drive. Freedom! . . . .
Oops. Feeling kinda sleepy. May have to postpone that driving.
Today at noon another 24 hours is up, and I'm out of this Ace bandage. I remember rushing to Starbucks with the even bigger bandage after the biopsy, convinced that what I needed was a treat. No one even noticed my "flapper" look with flat silhouette courtesy of Ace. There's a lesson in that somewhere about how I obsess on dressing for a coffee shop.
Today, per the surgery center's instructions, if I'm convinced my reactions are quick as normal, I can drive. Freedom! . . . .
Oops. Feeling kinda sleepy. May have to postpone that driving.
Wednesday, November 20, 2013
LUMPECTOMY FOR BEGINNERS Day 2
Yesterday's nap was too long - trouble getting to sleep last night, but no real pain.
Took off the compression (ACE) bandage this afternoon after I finally found the post-surgery instructions. Then they say in #3 to take it off and also the dressing when I shower. Oops. I'm not putting it on again right now.
I'm not anxious to see how I look yet under the dressing. Taking off the bandage I could see I'm smaller on that size now. Then after shower, supposed to put Ace bandage back on for another 24 hours. Okay.
I haven't had any real pain. My high pain threshold is a blessing, since most pain meds make me nauseous, sometimes very nauseous. I feel sorry for the women who are taking all the high-powered post-op meds.
Taking this sweatshirt off will not be much fun since tendinitis is in this equation as well as the incision.
Surgeon told me I would get the results from pathologist in a few days, but on the phone he told my daughter it could take until my 2-week appointment with him. (Despite seven years working for a malpractice insurance company, I suddenly have a mental block when I try to say or write "pathologist" or "pathology.")
There were so many written cautions about the anesthesia lingering, that I didn't even want to venture out alone for my exercise walk today.
Yesterday I think they gave me some kind of pre-op sedative. I don't remember even going to the procedure room.
There are moments when I feel detached from this - as though it's happening to someone else. I wonder if other women have had this feeling? Maybe because I just don't want it to be real.
Yes, it could be worse. It could also be better.
Took off the compression (ACE) bandage this afternoon after I finally found the post-surgery instructions. Then they say in #3 to take it off and also the dressing when I shower. Oops. I'm not putting it on again right now.
I'm not anxious to see how I look yet under the dressing. Taking off the bandage I could see I'm smaller on that size now. Then after shower, supposed to put Ace bandage back on for another 24 hours. Okay.
I haven't had any real pain. My high pain threshold is a blessing, since most pain meds make me nauseous, sometimes very nauseous. I feel sorry for the women who are taking all the high-powered post-op meds.
Taking this sweatshirt off will not be much fun since tendinitis is in this equation as well as the incision.
Surgeon told me I would get the results from pathologist in a few days, but on the phone he told my daughter it could take until my 2-week appointment with him. (Despite seven years working for a malpractice insurance company, I suddenly have a mental block when I try to say or write "pathologist" or "pathology.")
There were so many written cautions about the anesthesia lingering, that I didn't even want to venture out alone for my exercise walk today.
Yesterday I think they gave me some kind of pre-op sedative. I don't remember even going to the procedure room.
There are moments when I feel detached from this - as though it's happening to someone else. I wonder if other women have had this feeling? Maybe because I just don't want it to be real.
Yes, it could be worse. It could also be better.
Tuesday, November 19, 2013
LUMPECTOMY FOR BEGINNERS: the day, the wires, the cut
Back home alive and not too sore so far.
I salute the way the intake worker and some of the nurses in the hospital dress. Nice, current civvies instead of scrubs makes me feel like I'm still on the healthy-people side of the world.
Wasn't looking forward to the placement of the guide wires for the surgeon's cutting map, but it wasn't bad.
The woman who placed them remembered me from the biopsy. (The tech says she's the best.) She asked the tech and me if we had talked about L.A. The tech is a remarkable woman who should have a title far above tech for her accomplishments in the technical parts of this world in L.A. and beyond. Is there some plan to the health-related people I'm meeting in TX?
Two weeks to the appointment with the doctor.
More later.
I salute the way the intake worker and some of the nurses in the hospital dress. Nice, current civvies instead of scrubs makes me feel like I'm still on the healthy-people side of the world.
Wasn't looking forward to the placement of the guide wires for the surgeon's cutting map, but it wasn't bad.
The woman who placed them remembered me from the biopsy. (The tech says she's the best.) She asked the tech and me if we had talked about L.A. The tech is a remarkable woman who should have a title far above tech for her accomplishments in the technical parts of this world in L.A. and beyond. Is there some plan to the health-related people I'm meeting in TX?
Two weeks to the appointment with the doctor.
More later.
Saturday, November 16, 2013
TAKSIM HOSPITAL PHOTO If only every hospital looked so welcoming
Forum Studio’s (Chicago) design principal Erik Andersen has led the building of this amazing hospital, full of light and greenery. Three cantilevered garden greenhouses! How cheerful it would be to drive up there instead of any hospital I've driven up to. The photo on Healthcare Design online mag really does look like a place I'd like to live or at least visit. It's big, really big, without being scary. I wish I could send a picture to a bunch of design firms and hospital boards.
I had to use the search feature but the photo and story are worth the effort.
Orchids to everyone responsible for this project.
I had to use the search feature but the photo and story are worth the effort.
Orchids to everyone responsible for this project.
Thursday, November 14, 2013
IS THIS WHAT YOU WANT TO SAY TO DOCTORS?
JEFF HADEN ON LINKEDIN "GREAT LEADERSHIP STARTS AND ENDS WITH THIS."
I don't have permission to quote Jeff Haden, so please, if you're on Linkedin, read this article today and don't stop til you get to the end.
"No one cares how much you know . . ."
It reminds me of why I quit going to one doctor several years ago.
It also reminds me of another quote, from a doctor, Sir William Osler: "It is much more important to know what sort of patient has the disease than to know what sort of disease the patient has."
There is constant talk and writing on medical sites about how to get patients to take care of themselves and take their medicine when they leave the hospital. Expensive programs and endless conferences on how patients can be made to behave. Maybe this quote should be above the door of every hospital and on every medical website? Just a thought.
I don't have permission to quote Jeff Haden, so please, if you're on Linkedin, read this article today and don't stop til you get to the end.
"No one cares how much you know . . ."
It reminds me of why I quit going to one doctor several years ago.
It also reminds me of another quote, from a doctor, Sir William Osler: "It is much more important to know what sort of patient has the disease than to know what sort of disease the patient has."
There is constant talk and writing on medical sites about how to get patients to take care of themselves and take their medicine when they leave the hospital. Expensive programs and endless conferences on how patients can be made to behave. Maybe this quote should be above the door of every hospital and on every medical website? Just a thought.
Wednesday, November 13, 2013
MY NEW FAVORITE PHRASE?
Okay, I admit that right now my favorite phrase is "it's nothing" or "you're cured" at least in the health world.
But this morning I have another favorite that I've stolen here for educational purposes:
"...to provide an open forum for the exchange of ideas and disruptive commentary that changes clinical practice and health care policy;' From the mission statement of GeriPal blog.
Disruptive commentary aimed for change is what I often hope I'm giving in HEN BACKTALK, and what I fear being judged and criticized for. So now GeriPal blog stands up and calls disruptive commentary a good idea, a mission!
My thanks to GeriPal for their courage and courage they give me..
But this morning I have another favorite that I've stolen here for educational purposes:
"...to provide an open forum for the exchange of ideas and disruptive commentary that changes clinical practice and health care policy;' From the mission statement of GeriPal blog.
Disruptive commentary aimed for change is what I often hope I'm giving in HEN BACKTALK, and what I fear being judged and criticized for. So now GeriPal blog stands up and calls disruptive commentary a good idea, a mission!
My thanks to GeriPal for their courage and courage they give me..
Tuesday, November 12, 2013
WOMEN'S PLAGUE Still grasping at straws
Tuesday after leaving the surgeon's office, I looked up Breast Cancer Action SF, and read an essay by a woman who had done everything right and found nothing had changed: No Cure.
This morning, her words were still in my head, and I remembered attending a reading years ago of James Engelhardt's play, Rattus Rattus. It is a story about The Black Plague or some other plague that nobody could cure. It seems people of the time were carrying nosegays in front of their faces, perhaps to distract them from the smells of death, or perhaps to ward off the possibility of the disease attacking through the air. I'm sure the flower vendors had a thriving business. And in spite of the fear and the death, somewhere in the background I'm sure a jester was singing:
Ring around the rosy
Pocket full of posies
Ashes, ashes
We all fall down.
Now centuries later we're pretty sure posies won't do it. Instead, we carry around pink ribbons on our cars, our clothes, our gifts, our jewelry. And there is a thriving business for vendors of anything with a pink ribbon on it. Even on a mammogram machine! But to be sure their business was thriving, until 2000 one company that manufactures breast cancer medicine also manufactured a carcinogenic herbicide, acetochlor.
Hospitals give literature for "runs" and "walks" from companies that won't tell where the money went, and that still manufacture products that may make the plague worse.
We run, we walk, and on Mother's Day, we remember the ones the pink ribbons didn't help.
Too many still fall down.
This morning, her words were still in my head, and I remembered attending a reading years ago of James Engelhardt's play, Rattus Rattus. It is a story about The Black Plague or some other plague that nobody could cure. It seems people of the time were carrying nosegays in front of their faces, perhaps to distract them from the smells of death, or perhaps to ward off the possibility of the disease attacking through the air. I'm sure the flower vendors had a thriving business. And in spite of the fear and the death, somewhere in the background I'm sure a jester was singing:
Ring around the rosy
Pocket full of posies
Ashes, ashes
We all fall down.
Now centuries later we're pretty sure posies won't do it. Instead, we carry around pink ribbons on our cars, our clothes, our gifts, our jewelry. And there is a thriving business for vendors of anything with a pink ribbon on it. Even on a mammogram machine! But to be sure their business was thriving, until 2000 one company that manufactures breast cancer medicine also manufactured a carcinogenic herbicide, acetochlor.
Hospitals give literature for "runs" and "walks" from companies that won't tell where the money went, and that still manufacture products that may make the plague worse.
We run, we walk, and on Mother's Day, we remember the ones the pink ribbons didn't help.
Too many still fall down.
Sunday, November 10, 2013
BAD NEWS What we really, secretly think
Carcinoma in situ. Yes, it could be worse. We try to be glad it's not worse.
We try to believe that the medicine won't make our current life worse. For years.
Isn't medicine supposed to make it better?
Are these side effects supposed to make me want this medicine?
Is this the best they can do?
Was putting a man on the moon more important than finding out what actually causes breast cancer?
Until we know the cause, isn't any medicine just sort of a guess?
We try to believe that the medicine won't make our current life worse. For years.
Isn't medicine supposed to make it better?
Are these side effects supposed to make me want this medicine?
Is this the best they can do?
Was putting a man on the moon more important than finding out what actually causes breast cancer?
Until we know the cause, isn't any medicine just sort of a guess?
Friday, November 8, 2013
BAD NEWS? MUST SEE A doctor remodels my mood
What do you do before a double mastectomy? Dance, of course - TODAY.com
www.today.com
In a six-minute video that proves Beyonce makes everything better, a breast cancer patient dances in the operating room with her doctors...
Please see her dancing photo on my Facebook page! Or read more on today.com
Thursday, November 7, 2013
BAD NEWS- How to Think About It Part 2
Apologies if I've told this before. ..
A story:
Maybe three years ago a journalist was talking to victims of a serious flood. Four feet of muddy water had plowed into a poor neighborhood and into the people's small homes that we might call huts. One woman and her family rescued a few belongings from the mud and were carrying them up a hill to dry out. She told the reporter she was thanking God for bringing the flood in the daytime. That if it had been at night, the family would have been sleeping--they would have died in their sleep.
It is humbling to think how far I get from looking at the big picture and finding the blessing.
A story:
Maybe three years ago a journalist was talking to victims of a serious flood. Four feet of muddy water had plowed into a poor neighborhood and into the people's small homes that we might call huts. One woman and her family rescued a few belongings from the mud and were carrying them up a hill to dry out. She told the reporter she was thanking God for bringing the flood in the daytime. That if it had been at night, the family would have been sleeping--they would have died in their sleep.
It is humbling to think how far I get from looking at the big picture and finding the blessing.
Wednesday, November 6, 2013
BAD NEWS ways to think about it
The doctor's voice was so cheery that for a fraction of a second I thought the news was good. How can someone be so cheery when the next sentence starts. . .There's cancer... . .
Someone said to me two days beforehand that the test result I feared might be a blessing. Trying to think of a blessing it could conceivably be. Not coming up with much. Well, it forced me to get closer to a supportive friend, and to enlist a kind of support I've known for almost a year that I should ask for. And it forces me to write.
A story: Once years ago my car broke down in the rain, in the dark, on a stretch of divided road where there was no place to turn around. The police sent a tow truck, an eighty dollar tow. The tow truck driver asked me if I couldn't believe it could have been worse. The next morning I had an appointment with my wonderful counselor who said, Yes, it could have been worse. And it could have been better.
I think of those words now. It could be worse. It could be better.
Someone said to me two days beforehand that the test result I feared might be a blessing. Trying to think of a blessing it could conceivably be. Not coming up with much. Well, it forced me to get closer to a supportive friend, and to enlist a kind of support I've known for almost a year that I should ask for. And it forces me to write.
A story: Once years ago my car broke down in the rain, in the dark, on a stretch of divided road where there was no place to turn around. The police sent a tow truck, an eighty dollar tow. The tow truck driver asked me if I couldn't believe it could have been worse. The next morning I had an appointment with my wonderful counselor who said, Yes, it could have been worse. And it could have been better.
I think of those words now. It could be worse. It could be better.
Monday, November 4, 2013
BAD NEWS How to Avoid Part 2
Val Jones, MD, on KevinMD.com today
The one little question that could save your life
Also mentions a couple of interesting sites for employees to request
The one little question that could save your life
Also mentions a couple of interesting sites for employees to request
Saturday, November 2, 2013
BAD NEWS - how to avoid
Just listened to Steve Gullans on "safe dosing" on TEDmed. Focus on chemo and monitoring doses.
Friday, November 1, 2013
IF I RAN A HOSPITAL DESIGN FIRM - mammo day
I just read the most wonderful thing that made me want to be queen of hospitals. In Inc.com, an article Ten Office Design Tips to Foster Creativity. A main theme of the article is letting people be themselves and spend their days where they can be themselves and do their work their own way.
Letting patients be themselves is perhaps one of the two things hospitals do worst.
In one slide accompanying the article, there are lawn chairs, and people seated on the grass! I would have risked fewer germs sitting in the grass instead of crammed in elbow to elbow on a long banquette with dozens of others in a stuffy room before my first day-surgery in L.A. county. And I might have felt better.
Endlessly waiting in another part of the same hospital once, I had a stunning view of the elevator.
Interviewing at Ping-Pong tables is mentioned in the Inc. article. Supposedly it shakes interviewees out of their memorized interview speeches. I can't think of a reason why there couldn't be Ping-Pong in the waiting area for mammograms. A reminder that fun is supposed to be part of life? Instead we are supposed to read quietly and remember that we're there to stay healthy, but we know damn well that the mammo unit exists only because somebody might be getting cancer. Otherwise it would be a fruit tasting room.
One more thing about the article: it mentions the need for society vs the need to get off somewhere and work intensively. Luckily, the local hospital in the main mammo waiting room has coffee and snacks, and people do chat a bit at the coffee counter.
But if we need a little peace and quiet or privacy to digest the latest news from the umpteenth mammo film, where to go? Hide in the ladies' room? There is a smaller, glaring, and much less comfortable waiting room where one may try to get it together in full view of other women marching bravely toward the biopsy room.
Who decides what these waiting rooms will be? An interior designer who has never been called back for "more films?" And interior designer who gets way too much input from a hospital administration that wants photo-op rooms where everyone is quiet and never cries or argues? Kinda like detention?
I suspect I'll write or rant more on this later.
Letting patients be themselves is perhaps one of the two things hospitals do worst.
In one slide accompanying the article, there are lawn chairs, and people seated on the grass! I would have risked fewer germs sitting in the grass instead of crammed in elbow to elbow on a long banquette with dozens of others in a stuffy room before my first day-surgery in L.A. county. And I might have felt better.
Endlessly waiting in another part of the same hospital once, I had a stunning view of the elevator.
Interviewing at Ping-Pong tables is mentioned in the Inc. article. Supposedly it shakes interviewees out of their memorized interview speeches. I can't think of a reason why there couldn't be Ping-Pong in the waiting area for mammograms. A reminder that fun is supposed to be part of life? Instead we are supposed to read quietly and remember that we're there to stay healthy, but we know damn well that the mammo unit exists only because somebody might be getting cancer. Otherwise it would be a fruit tasting room.
One more thing about the article: it mentions the need for society vs the need to get off somewhere and work intensively. Luckily, the local hospital in the main mammo waiting room has coffee and snacks, and people do chat a bit at the coffee counter.
But if we need a little peace and quiet or privacy to digest the latest news from the umpteenth mammo film, where to go? Hide in the ladies' room? There is a smaller, glaring, and much less comfortable waiting room where one may try to get it together in full view of other women marching bravely toward the biopsy room.
Who decides what these waiting rooms will be? An interior designer who has never been called back for "more films?" And interior designer who gets way too much input from a hospital administration that wants photo-op rooms where everyone is quiet and never cries or argues? Kinda like detention?
I suspect I'll write or rant more on this later.
Thursday, October 24, 2013
Tuesday, October 22, 2013
HOSPITALS - Why handwashing doesn't help? A Rant.
It's not about whether hospital staff washes hands, it's about WHERE.
We go into a bathroom after doing God knows what.
We use the toilet.
The hand we used to wipe turns on the faucet with a handle.
We wash it.
That hand turns off the water with the dirty faucet handle.
We use paper towel.
We open the bathroom door with the handle used by everyone who didn't wash after wiping themselves.
If we are a hospital staff member, we go back to the patient knowing we have washed our hands!
I'm going to bet that if we are going to eat we might take a paper towel to protect us from the door handle. Then there is no wastebasket near the door, so we give up and open the door with probably our right hand,
and go back to the patient. In the hospitals I was in last year, that hand may be the one that puts the liner back in the \patient's water pitcher by inserting all the fingers in the liner to push it in.
IN short, unless every basin is equipped with only a foot pedal, what do you think really happens?
We go into a bathroom after doing God knows what.
We use the toilet.
The hand we used to wipe turns on the faucet with a handle.
We wash it.
That hand turns off the water with the dirty faucet handle.
We use paper towel.
We open the bathroom door with the handle used by everyone who didn't wash after wiping themselves.
If we are a hospital staff member, we go back to the patient knowing we have washed our hands!
I'm going to bet that if we are going to eat we might take a paper towel to protect us from the door handle. Then there is no wastebasket near the door, so we give up and open the door with probably our right hand,
and go back to the patient. In the hospitals I was in last year, that hand may be the one that puts the liner back in the \patient's water pitcher by inserting all the fingers in the liner to push it in.
IN short, unless every basin is equipped with only a foot pedal, what do you think really happens?
Wednesday, October 16, 2013
BAD NEWS or scary - What helps
A few days ago, a delightful hospital staff member did something so kind for me; I was there because of a callback for additional mammograms. She asked, "How are you?" I hesitated, and she said: "I know, you're called back for more." And gave me an understanding smile.
Two hours later, a doctor told me the second films weren't enough--I'd have to have a biopsy. He, too, was kind and showed that he realized the news and the description of the biopsy were not cheering. I trusted him. And I felt supported. Not alone.
And a week before that, layperson did the same thing--gave me understanding, listened, and put her number in my cell phone.
All three acknowledged that the diagnosis process isn't likely to put me in a buoyant mood. With their acknowledgements, I felt supported and almost cheerful. Nobody insisted on a stiff upper lip.
This week, someone who once went through the diagnosis, and got the test results nobody wants, told me not to consider my feelings self-pity, that this process is real, and serious. She knew not to tell me to cheer up.
A priest I knew said once that the quickest way to make someone worry is to say: Don't worry. I will think twice before using those words.
Two hours later, a doctor told me the second films weren't enough--I'd have to have a biopsy. He, too, was kind and showed that he realized the news and the description of the biopsy were not cheering. I trusted him. And I felt supported. Not alone.
And a week before that, layperson did the same thing--gave me understanding, listened, and put her number in my cell phone.
All three acknowledged that the diagnosis process isn't likely to put me in a buoyant mood. With their acknowledgements, I felt supported and almost cheerful. Nobody insisted on a stiff upper lip.
This week, someone who once went through the diagnosis, and got the test results nobody wants, told me not to consider my feelings self-pity, that this process is real, and serious. She knew not to tell me to cheer up.
A priest I knew said once that the quickest way to make someone worry is to say: Don't worry. I will think twice before using those words.
Monday, October 14, 2013
BAD NEWS Part 3 - More on our reactions
Speaking of our blood pressures in possibly scary situations, Karen Gast sent me a story that gave me a lot to think about. She gave permission to include it here:
"I just wanted to relate a story I had about high bp in my doctor's office when she had Nurse Ratchett working for her. Not a good experience.
Years later
when I'd had enough acupuncture to quiet a lot of my anxiety I finally had the courage to go back
and lo, she had a new, pleasant, understanding nurse. I explained that the big bp cuff gave me
high bp right off the bat and she retrieved a small wrist version and actually talked with me, said
it wasn't uncommon. The nurses make the difference sometimes!"
Wednesday, October 9, 2013
SPINE SURGERY AND OTHER "BAD NEWS" Part Two
Waiting for my primary doctor a week ago, I discovered that my blood pressure was much higher than I expected. I had been feeling rather calm sitting there in the chair. I don't know if my unconscious was giving me a clue that I didn't belong there. Now I remember that I had the same problem at my first visit to that doctor.
At another doctor's office a week or two earlier, my pressure was good.
At another doctor's office a week or two earlier, my pressure was good.
Several years ago, a back-office nurse had hinted that the electronic bp machines can be perhaps a bit haywire. Or is it me?
Anyway, back to the earlier blog post on reactions to bad news. This time I want to talk about our responses, or at least mine. Do I really shut down when I hear bad news? When I don't expect to get the answers I need? Why could I never ask my spine surgeon about the scary plastic visual aid with the big, shiny screws in it? Why do I go home without asking the questions I need to ask? Why can't I even think what the questions are?
Looking for something unrelated this morning in Malcolm Gladwell's BLINK, I think I found the answers. There, on page 225, in the chapter Seven Seconds in the Bronx, was a little sticky marker (mine.) And lots of big underlining, with BIG exclamation points about what happens in people's heads and whole bodies when our blood pressure climbs past a certain point. No wonder I leave some medical offices without asking for or getting answers!
Gladwell explained it better than I can. I wonder if any of my doctors have read it. Will you look it up and tell me what you think?
Friday, October 4, 2013
SPINE FUSION - the most valuable things
I left post-surgery rehab with a bunch of things - they even found my long lost chocolate bar!
But back in my room, and all around the apartment, and in this new room in Texas, one thing is completely indispensable: For dark corners, for stepping off the porch, for middle-of-the-night trips to the bathroom, it has saved my buns and bones more than once. There are many more things to trip over than the hospital PTs and OTs ever dreamed of. I've needed this thing endless times. I've carried it around for years and I'm always grateful . . .
It's my rechargeable flashlight.
But back in my room, and all around the apartment, and in this new room in Texas, one thing is completely indispensable: For dark corners, for stepping off the porch, for middle-of-the-night trips to the bathroom, it has saved my buns and bones more than once. There are many more things to trip over than the hospital PTs and OTs ever dreamed of. I've needed this thing endless times. I've carried it around for years and I'm always grateful . . .
It's my rechargeable flashlight.
Tuesday, October 1, 2013
LUMBAR FUSION 12 Months plus: Exercise Equipment
There's a country song that says it all: I'm too young to be so damn old. Slowly I remember what I've already been taught (and may have mentioned here earlier) to keep me strong or make me stronger.
In rehab: they showed me little girly two-pound dumbbells. I bought some. Pink. And bought three-pounders, metal. I'm amazed at how heavy the three-pounders feel. (This from a woman who used to use 12-pounders.)
And I feel a need to support my back when I work with these, so into my Posture chair (It's just a cheap AGEN wicker chair from IKEA that lets me support almost my whole back.) If only weights didn't interfere with reading my Robert B. Parker and other mysteries.
If you and your surgeon have a weekly squash date, you probably won't need to read the rest of this. Probably.
Now for the usual caution: ask your Doctor first. Always. Really.
In home visits: the visiting therapists showed me exercises I could do in bed. There's a bed right here! After months of just walking, I finally started doing those lying-down ones again: Do ten and relax.
move one leg to the side and back (I keep the other knee bent.) Change legs. You can also do this one in a chair with an ottoman for your legs. Or standing with straight back and your hands on the bathroom vanity.)
Press back of knee firmly into mattress, relax, do 10. Change legs.
Press both buns together 10 times. (The official physical therapist name for this is Butt Squeeze.)
Straighten one leg, then press heel into mattress as you move foot close to your body, straighten, repeat. Ten for each leg.
This one helps a lot to relieve morning pain in my left leg.
The home therapists made me repeat the whole sequence again.
The doctor told me to stretch when I get out of bed, so I just stand up and reach for the sky.
More reprise on the cute dumbbells later. And a bonus if I get into the swimming class.
In rehab: they showed me little girly two-pound dumbbells. I bought some. Pink. And bought three-pounders, metal. I'm amazed at how heavy the three-pounders feel. (This from a woman who used to use 12-pounders.)
And I feel a need to support my back when I work with these, so into my Posture chair (It's just a cheap AGEN wicker chair from IKEA that lets me support almost my whole back.) If only weights didn't interfere with reading my Robert B. Parker and other mysteries.
If you and your surgeon have a weekly squash date, you probably won't need to read the rest of this. Probably.
Now for the usual caution: ask your Doctor first. Always. Really.
In home visits: the visiting therapists showed me exercises I could do in bed. There's a bed right here! After months of just walking, I finally started doing those lying-down ones again: Do ten and relax.
move one leg to the side and back (I keep the other knee bent.) Change legs. You can also do this one in a chair with an ottoman for your legs. Or standing with straight back and your hands on the bathroom vanity.)
Press back of knee firmly into mattress, relax, do 10. Change legs.
Press both buns together 10 times. (The official physical therapist name for this is Butt Squeeze.)
Straighten one leg, then press heel into mattress as you move foot close to your body, straighten, repeat. Ten for each leg.
This one helps a lot to relieve morning pain in my left leg.
The home therapists made me repeat the whole sequence again.
The doctor told me to stretch when I get out of bed, so I just stand up and reach for the sky.
More reprise on the cute dumbbells later. And a bonus if I get into the swimming class.
Subscribe to:
Posts (Atom)