Well they finally figured out that they can't detect ovarian cancer in regular screenings. In fact the women who were screened had false positives and surgical complications as well as more deaths than the women who weren't screened. Oops. So I'll scratch that one off my list.
An annual mammogram, I can do that. A colonoscopy every ten years, I can do that. My husband who had that bad colonoscopy followed by surgery says he would rather have an annual colonoscopy than surgery again. I think prostate cancer screenings are up for debate these days. Annual skin checks I can cope with as well.
After one cancer diagnosis, never mind more than that, you get privileged to get every regular cancer screening there is. Because 'with your medical history, they need to be sure'.
Granted once you get on the cancer roller coaster, its too easy to over react to 'with your medical history we need to be sure' and start saying 'well I had cancer before, I need to make sure I don't have it again'.
But when talking with your doctor about a potential health issue that 'with your medical history they need to be sure', its a balancing act. I mean if they don't test and you have something, what if they catch it too late? Or do you need that extra trip on the cancer roller coaster as well as expense to get a negative test result?
But the point is that you should talk with your doctor. I like the times when my doctors tell me the normal protocol is this and there is no reason for anything more. I dislike the 'but with your medical history, we need to be sure' so here go some more tests and medical adventures.
The media plays a big part in the emotional roller coaster. If you listen to what the media tells you, you will be running from doctor to doctor, and eating red meat this week but not next week and upping your vitamin intake last week but switching to new supplements. Never mind that it seems that the media either reports on medical breakthroughs that are in the mouse-test stage or ones that aren't news because they have been around for a while.
There has never been a medical breakthrough that I learned about in the media that applied to me and was appropriate. My thought is to ask my doctor and skip the news reports.
Tuesday, June 7, 2011
Monday, June 6, 2011
How to prepare for surgery
Here's another article I could have written and I didn't go to medical school. Its on how to prepare for surgery. My questions to prepare for surgery are:
1. Will I have a scar that anyone can see? How long until it fades from my skin and my memory? That is important. Surgery isn't fun and you want to erase it from your brain as soon as possible. Also, don't mess it up so I have to keep thinking about it.
2. Will I get good drugs? Again this is key. No pain please! No infections! No side effects! I need to feel nothing at all. I had a hysterectomy and ended up with a urinary tract infection which required me to stay a day longer in the hospital and have to take antibiotics.
3. How long can I make everyone wait on me hand and foot? Really, how long till I will recover and don't lie to me? Part of this is how long until I am back to myself and when should I call you if I still feel like crap?
4. By the way will there be any long term side effects of the surgery? They don't tell you with breast cancer surgery that you can end up with shoulder problems for life and risk of lymphedema. Well maybe they did tell me about lymphedema but I didn't understand the significance of it. And about my shoulder...
Then comes the part of about fashion and accessorizing. If in patient, bring the right clothes for lying around a hospital bed. If you are stuck in a stupid johnny bring a bathrobe and slippers. If you are more mobile, how about a pair of shorts and t-shirt? And don't forget the toys - internet access, TV, cell phone, books, crafts, puzzles, etc. Nothing that requires huge amounts of brain cells because you won't have any for the first few days but something to relieve boredom or to put you back to sleep after they wake you up to check your vitals at 3am.
If you are an out patient, will there be any icky bandages and drains to deal with or just a little bandaid or a few (itchy) steri strips? I have dealt with a surgical drain and trust me, if you can avoid this in your lifetime, please do.
When you get to the hospital for surgery on the given day and experiencing any level of stress, be sure to tell everyone how stressed you are and often the anesthesiologist will show up early with good drugs. And at the very least you get more visits from the nurses to make sure you aren't freaking out on them. You also need to be sure whoever is retrieving you later or waiting around for you is in the right place to be told how you are doing and can come back and see you. Do not let them wander off with out a cell phone to the wrong waiting room...
I have learned to have a conversation with the anesthesiologist. I tell them that the anesthesia I have had for the past three surgeries worked well with no real issues as opposed to the anesthesia I had for one surgery that left me unconscious too long. And I don't want to see a needle. I don't want to feel a tube going into or coming out of my throat. And I have all kinds of drug allergies including Benadryl. After I tell them all this, I let them touch me. I'm not picky. I just have preferences and since surgery is all about me, I make sure they know them.
Finally, the most important question is can I have ice cream afterward?
I am not sure if I forgot anything but if I did, feel free to ask.
1. Will I have a scar that anyone can see? How long until it fades from my skin and my memory? That is important. Surgery isn't fun and you want to erase it from your brain as soon as possible. Also, don't mess it up so I have to keep thinking about it.
2. Will I get good drugs? Again this is key. No pain please! No infections! No side effects! I need to feel nothing at all. I had a hysterectomy and ended up with a urinary tract infection which required me to stay a day longer in the hospital and have to take antibiotics.
3. How long can I make everyone wait on me hand and foot? Really, how long till I will recover and don't lie to me? Part of this is how long until I am back to myself and when should I call you if I still feel like crap?
4. By the way will there be any long term side effects of the surgery? They don't tell you with breast cancer surgery that you can end up with shoulder problems for life and risk of lymphedema. Well maybe they did tell me about lymphedema but I didn't understand the significance of it. And about my shoulder...
Then comes the part of about fashion and accessorizing. If in patient, bring the right clothes for lying around a hospital bed. If you are stuck in a stupid johnny bring a bathrobe and slippers. If you are more mobile, how about a pair of shorts and t-shirt? And don't forget the toys - internet access, TV, cell phone, books, crafts, puzzles, etc. Nothing that requires huge amounts of brain cells because you won't have any for the first few days but something to relieve boredom or to put you back to sleep after they wake you up to check your vitals at 3am.
If you are an out patient, will there be any icky bandages and drains to deal with or just a little bandaid or a few (itchy) steri strips? I have dealt with a surgical drain and trust me, if you can avoid this in your lifetime, please do.
When you get to the hospital for surgery on the given day and experiencing any level of stress, be sure to tell everyone how stressed you are and often the anesthesiologist will show up early with good drugs. And at the very least you get more visits from the nurses to make sure you aren't freaking out on them. You also need to be sure whoever is retrieving you later or waiting around for you is in the right place to be told how you are doing and can come back and see you. Do not let them wander off with out a cell phone to the wrong waiting room...
I have learned to have a conversation with the anesthesiologist. I tell them that the anesthesia I have had for the past three surgeries worked well with no real issues as opposed to the anesthesia I had for one surgery that left me unconscious too long. And I don't want to see a needle. I don't want to feel a tube going into or coming out of my throat. And I have all kinds of drug allergies including Benadryl. After I tell them all this, I let them touch me. I'm not picky. I just have preferences and since surgery is all about me, I make sure they know them.
Finally, the most important question is can I have ice cream afterward?
I am not sure if I forgot anything but if I did, feel free to ask.
Sunday, June 5, 2011
Another day = more confusion
As I wake up this morning (after 11.5 hours of sleep) I find three articles on the same topic - Aromasin, an existing drug for breast cancer treatment may help prevent it.
The first part of my confusion. Aromasin is in a class of drugs called aromatase inhibitors. I am on a different one called Femara. I was told they were all the same and I would start with Femara and if I had reactions to it or handled it badly, they would switch me to another. My confusion here is if they are the same, why isn't Femara and the other AI included in this article? Or if Aromasin is different than the other two, should I switch?
The second part of my confusion is that I thought I was taking it as part of the prevention plan against a recurrence in the first place. I did take Tamoxifen for two years and then am on Femara for three years total, two more years. Is this study only for people who are at risk but never had breast cancer in the first place? I am considered at risk because I had it once so should I take switch to Aromasin and stay on it for life?
I will need to discuss this with my oncologist when I see her in August. But that would require me to REMEMBER to tell her about this. Chemo brain prevents me from remembering more than the basics in life sometimes. Last week my husband says he likes being married to someone who is more of a space shot than he is.
I just believe its all a part of the evil conspiracy to confuse patients. Destroy their brain cells with chemo and then give them conflicting information they can't understand and will forget to ask their doctors about. I don't understand, I am confused.
The first part of my confusion. Aromasin is in a class of drugs called aromatase inhibitors. I am on a different one called Femara. I was told they were all the same and I would start with Femara and if I had reactions to it or handled it badly, they would switch me to another. My confusion here is if they are the same, why isn't Femara and the other AI included in this article? Or if Aromasin is different than the other two, should I switch?
The second part of my confusion is that I thought I was taking it as part of the prevention plan against a recurrence in the first place. I did take Tamoxifen for two years and then am on Femara for three years total, two more years. Is this study only for people who are at risk but never had breast cancer in the first place? I am considered at risk because I had it once so should I take switch to Aromasin and stay on it for life?
I will need to discuss this with my oncologist when I see her in August. But that would require me to REMEMBER to tell her about this. Chemo brain prevents me from remembering more than the basics in life sometimes. Last week my husband says he likes being married to someone who is more of a space shot than he is.
I just believe its all a part of the evil conspiracy to confuse patients. Destroy their brain cells with chemo and then give them conflicting information they can't understand and will forget to ask their doctors about. I don't understand, I am confused.
Saturday, June 4, 2011
Well, Whoop Di Doo
I found this article a couple of days ago about new targeted drugs for cancer treatment. My first thought well this is new and exciting and provides great promise for the future. Yes, its for smaller groups but as we know cancer is not one disease but hundreds of different diseases this actually makes sense.
But then my more cynical side shows up and says 'where is the damn cure?' Maybe I'm tired and not getting enough sleep. Maybe I'm cranky - ask my co-worker yesterday who I finally snapped at (he says he can piss off the pope so it was not a big deal) - maybe I'm stressed. Maybe it was the news that a good friend's husband's colon cancer has returned as well as the news that one of my husband's cousin's cancer has returned as well.
Also, this story about a dog who can detect cancer doesn't do anything for my mental state.
Life with cancer is a roller coaster. You get it, they treat it, you worry about it coming back because they haven't figured out a way to prevent that.
But I was optimistic for a few days. I am sure my optimism will return but not this week. So in the meantime my opinion of advances in cancer treatment that are anything short of a cure are 'whoop di doo'.
But then my more cynical side shows up and says 'where is the damn cure?' Maybe I'm tired and not getting enough sleep. Maybe I'm cranky - ask my co-worker yesterday who I finally snapped at (he says he can piss off the pope so it was not a big deal) - maybe I'm stressed. Maybe it was the news that a good friend's husband's colon cancer has returned as well as the news that one of my husband's cousin's cancer has returned as well.
Also, this story about a dog who can detect cancer doesn't do anything for my mental state.
Life with cancer is a roller coaster. You get it, they treat it, you worry about it coming back because they haven't figured out a way to prevent that.
But I was optimistic for a few days. I am sure my optimism will return but not this week. So in the meantime my opinion of advances in cancer treatment that are anything short of a cure are 'whoop di doo'.
Friday, June 3, 2011
Confusion
I am confused. The Department of Agriculture has changed the food pyramid to a plate. I think they should stop changing it and work on explaining what they really mean we should eat. If you go look at the new 'plate', we are supposed to have protein, grains, vegetables, fruit and dairy. I don't eat that much in any one meal. My breakfast this morning will be egg beaters with spinach and some melon. Okay, so I am getting protein, vegetables, and fruit. The only dairy would be from the skim milk in my coffee or I could add some cheese. I don't have any grains... Should I add toast to my meal?
I don't know what I am eating for lunch today because we will get take out at work. It will probably be a salad with some protein on it. No fruit. No dairy unless it includes cheese. No grain unless it eat bread too.
Dinner tonight we are going out as well - more eating out than usual - and we are going to a seafood restaurant. I will have a salad first because I always do, then some kind of fish with vegetables on the side. Not sure about dairy, grains, or fruit.
The whole point of these recommendations is for Americans to eat right and not to eat too much. So why do I need to add to my meal to make sure I get everything I need? More food means more calories.
You will note there is no dessert section or chocolate section. Clearly they must be overlooked. But if you are confused just like me, be sure to look at the history of the dietary recommendations on the CNN article. Or if you want to see how the government clarifies this, go to the official plate website at choosemyplate.gov. I am sure they will do a governmental job of explaining...
Thursday, June 2, 2011
Happy 4th Birthday to my blog
My blog is four years old today. This means my breast cancer diagnosis was four years and two days ago (it took me two days to figure out that I wanted a blog and how to get started). I was told breast cancer is a year out of your life. Well why am I still blogging? More importantly why are you people all still reading whoever you are?
And the year out of my life has stretched out into four years. Not due to cancer but due to the fact that my body has decided it is not ready to be healthy any time soon. It started with a little lump, two surgeries, and chemo and I had a new lump which meant another surgery. Then radiation which was followed by unrelated abdominal pain which turned out to be a hiatal hernia and gall stones which led to gall bladder surgery. Then my back started causing problems, I sprained my ankle, fell on my knee, blood pressure and pulse issues, and I am sure I missed a few other things in there but it will suffice to say that they have been dealt with in a couple hundred doctor appointments, medical adventures, tests, and physical therapy sessions. Needless to say I still have lots more of cancer cootie detection sessions in my future.
But I am still here and still writing and for some reason all of you are still reading.
On a more positive note, yesterday's medical adventure which was to be part one of three, turned out to be part one of one. Apparently the injections have to be put through to insurance as a three part series but once approved my insurance will cover it as a single injection. I said so you mean I wouldn't have to come back two more times? I was all for that.
The injection itself wasn't bad and the nurse was very good at distracting me. I was told it wouldn't hurt after - well that was WRONG. It wasn't pain, it was pressure inside my knee to the extent that I couldn't straighten or bend my leg fully and it was more painful than before. Apparently I also looked like I might pass out so they made me stay there with an ice pack for about 30 minutes until the color returned to my face. And they offered me juice, ginger ale, crackers, and water several times.
I eventually hobbled out to my car and drove home with an ice pack on my knee and ended up on the living room couch for the evening with my ice pack. Today its a little uncomfortable but not bad. I have no big plans for the day on purpose so I will take it easy and ice my knee some more.
And the year out of my life has stretched out into four years. Not due to cancer but due to the fact that my body has decided it is not ready to be healthy any time soon. It started with a little lump, two surgeries, and chemo and I had a new lump which meant another surgery. Then radiation which was followed by unrelated abdominal pain which turned out to be a hiatal hernia and gall stones which led to gall bladder surgery. Then my back started causing problems, I sprained my ankle, fell on my knee, blood pressure and pulse issues, and I am sure I missed a few other things in there but it will suffice to say that they have been dealt with in a couple hundred doctor appointments, medical adventures, tests, and physical therapy sessions. Needless to say I still have lots more of cancer cootie detection sessions in my future.
But I am still here and still writing and for some reason all of you are still reading.
On a more positive note, yesterday's medical adventure which was to be part one of three, turned out to be part one of one. Apparently the injections have to be put through to insurance as a three part series but once approved my insurance will cover it as a single injection. I said so you mean I wouldn't have to come back two more times? I was all for that.
The injection itself wasn't bad and the nurse was very good at distracting me. I was told it wouldn't hurt after - well that was WRONG. It wasn't pain, it was pressure inside my knee to the extent that I couldn't straighten or bend my leg fully and it was more painful than before. Apparently I also looked like I might pass out so they made me stay there with an ice pack for about 30 minutes until the color returned to my face. And they offered me juice, ginger ale, crackers, and water several times.
I eventually hobbled out to my car and drove home with an ice pack on my knee and ended up on the living room couch for the evening with my ice pack. Today its a little uncomfortable but not bad. I have no big plans for the day on purpose so I will take it easy and ice my knee some more.
Wednesday, June 1, 2011
Another medical adventure
I hate medical adventure. Today's medical adventure does not sound exciting at all. They are going to stick a needle under my knee cap - and its the first of three. One person told me it was awful. Another person told me the first one she had was awful and then she had the series done later by someone else who was very good and it didn't hurt at all. I am hoping for this.
I dislike needles to start with. I dislike medical adventures. I don't want to go to the hospital (again). I just had ten days with out a medical appointment - some kind of miracle. Today I have PT and then my medical adventure. Saturday I am having an Echocardiogram - another medical adventure. Monday I have PT, Tuesday I see my therapist, Wednesday I have PT, see my primary care for the rest of my annual physical (who knew a physical could take two visits to complete - perhaps I have health issues), and another needle in my knee. The following week I have PT on Monday and Wednesday, another doctor appointment about heart/blood pressure issues, and the last needle under the knee cap. That is 12 (yes, twelve) appointments between now and the 15th. Do I get a frequent patient discount? No.
I am being whiny. I am allowed to be whiny. What are the chances all these appointments won't result in more appointments? Zip. I already have more appointments after those but I don't even know when they are because the hospital appointment sheets only cover 10 appointments. I will suck it up and print out my list of medications and go off to my appointments. Maybe I can get caught up on my reading as I sit around in waiting rooms.
I dislike needles to start with. I dislike medical adventures. I don't want to go to the hospital (again). I just had ten days with out a medical appointment - some kind of miracle. Today I have PT and then my medical adventure. Saturday I am having an Echocardiogram - another medical adventure. Monday I have PT, Tuesday I see my therapist, Wednesday I have PT, see my primary care for the rest of my annual physical (who knew a physical could take two visits to complete - perhaps I have health issues), and another needle in my knee. The following week I have PT on Monday and Wednesday, another doctor appointment about heart/blood pressure issues, and the last needle under the knee cap. That is 12 (yes, twelve) appointments between now and the 15th. Do I get a frequent patient discount? No.
I am being whiny. I am allowed to be whiny. What are the chances all these appointments won't result in more appointments? Zip. I already have more appointments after those but I don't even know when they are because the hospital appointment sheets only cover 10 appointments. I will suck it up and print out my list of medications and go off to my appointments. Maybe I can get caught up on my reading as I sit around in waiting rooms.
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