I am not sure. I am reading the side effects on my prescriptions:
Daily med #1: just has directions - take in morning and take on an empty stomach.
Daily med #2: that I take at the same time as med #1 also just has directions. Do not take this medicine if you are pregnant or plan to become pregnant. Take this medicine with a full glass of water. Take or use this medicine daily as directed. Do not skip doses or discontinue unless directed by your doctor. Take this medicine with a snack or small meal if stomach upset occurs.
Wait... so I can take them together but one on an empty stomach and one with a snack? Do I need to split these up?
Daily med #3: Do not drink alcoholic beverages while taking this medicine. May cause drowsiness, alcohol may intensive this affect. Use care when operating a car or dangerous machinery.
Daily med #4: May cause drowsiness or dizziness. Take this medicine with a snack or small meal if stomach upset occurs. Take this medicine with a full glass of water.
Daily med #5: May cause drowsiness. Alcohol may intensify this effect. Use care when operating a car or dangerous machinery. Do not take other medicines without checking with your pharmacist.
I get it. Don't drink alcohol. Drink lots of water. And now I have something to blame for my inability to parallel park. (12 back and forths yesterday to fit in a tiny little space. Sigh. Someday I will learn.) Also, I had to get special permission from my doctor to take all three of these together. Can you imagine my life if I had to take everything an hour apart? I would be a pill popping mad woman.
In addition, I have more meds. I take these in case of pain, stress, or generally crabbiness.
As needed med #1: May cause drowsiness. Taking this medicine alone or with alcohol may lessen your ability to drive or perform hazardous tasks.
As needed med #2: May cause drowsiness. Alcohol may intensive this effect. Use care when operating a car or dangerous machinery. May cause dizziness. Taking more of this medication than recommended may cause serious breathing problems. Obtain medical advice before taking nonprescription drugs. Some may affect the action of this medication.
As needed med #3: May cause drowsiness. Alcohol may intensify this effect. Use care when operating a car or dangerous machinery. May cause dizziness.
Okay, okay. No alcohol. If I am dizzy, I know why.
Then the doctor prescribed a new med but didn't tell me if I am supposed to take it instead of or in addition to what I am already taking. I have a call into the doctors office to find out what the deal is but it: May cause drowsiness or dizziness. Take this medicine with a snack or small meal if stomach upset occurs. Take this medicine with a full glass of water. But it just means drink more water and be dizzy.
So when I have all these potential causes of dizziness in me, should I feel concerned if I feel dizzy or is it just all the side effects? What about if my stomach is feeling a bit cranky? Did I skip a needed snack or take something not on an empty stomach or need another glass of water or is it really having problems? The drowsy one is easy. I just take a nap or go to bed early. I am perfectly happy to have an excuse for the parallel parking thing but what about the other issues? If I ask a doctor, they just blame one of the meds. Grr.
I think I'll just put all the bottles back on my bedside table and read the Sunday paper instead. But wait, its time to take some more meds first.
Sunday, January 31, 2010
Saturday, January 30, 2010
Friday, January 29, 2010
Prescription madness
A day of prescription madness. First stop at the meds therapist for a check on my sanity level and prescription analysis. She put directly into the computer two prescriptions for me. I did explain to her the last time I saw her the prescription wasn't there when I went to pick it up - but it was New Year's Eve, my husband and brother were waiting for me, there was a huge line at the pharmacy (and I had just fallen in the parking lot but I didn't tell her that). I figured it was a computer glitch or insurance being cranky or something and figured I would call her if I ran out before I saw her again. Well last night I went to pick up my new prescriptions, and only one was there. I explained my story to the pharmacy, they said the other prescription was actually in there but the second prescription from yesterday was not.
Then my back pain doctor called in a new prescription for me. I was all excited thinking I am getting off Lyrica - which I don't really like. But apparently when I picked it up, it was another anti-inflammatory. I need to call and find out if this is in addition to or instead of my other anti-inflammatory and refill my Lyrica prescription. I am so confused.
But I have had three doctors follow their scripts recently: my radiation oncologist says she doesn't want to seem me for six months and I look like I am doing well; my meds therapist thinks I am doing okay and I don't have to see her for two months; and my endocrinologist sent me a letter saying all my blood work came back fine. I still have an ultrasound coming up and I think I go back in six months.
Today I will call the pharmacy and two doctors to see if I can straighten out my prescriptions. But first, we need to take the fasting cat to the vet. I can't wait. He is soooo annoying and wants food. And he's begging. And he's pleading. And he's generally annoying. He hasn't had food since 7pm last night when we took it all away. I am sure I will be good and aggravated after dealing with the cat in the car before I get to spend time on the phone.
Then my back pain doctor called in a new prescription for me. I was all excited thinking I am getting off Lyrica - which I don't really like. But apparently when I picked it up, it was another anti-inflammatory. I need to call and find out if this is in addition to or instead of my other anti-inflammatory and refill my Lyrica prescription. I am so confused.
But I have had three doctors follow their scripts recently: my radiation oncologist says she doesn't want to seem me for six months and I look like I am doing well; my meds therapist thinks I am doing okay and I don't have to see her for two months; and my endocrinologist sent me a letter saying all my blood work came back fine. I still have an ultrasound coming up and I think I go back in six months.
Today I will call the pharmacy and two doctors to see if I can straighten out my prescriptions. But first, we need to take the fasting cat to the vet. I can't wait. He is soooo annoying and wants food. And he's begging. And he's pleading. And he's generally annoying. He hasn't had food since 7pm last night when we took it all away. I am sure I will be good and aggravated after dealing with the cat in the car before I get to spend time on the phone.
Thursday, January 28, 2010
The value of pets
And I don't mean the medical kind. Apparently it took a study to realize that people grow closer to their pets during an illness. I know during chemo, the cat spent hours sitting with me as I zoned out in front of the TV, cuddling up. At the time, I thought it was just nice of him. But in reality, he was waiting to be fed.
Over the past few years, we have endured his medical ups and downs. He had diabetes and has now reverted for some unknown reason and is off insulin. But his weight keeps dropping. He is down to 13 lbs from a start of 19. He should be about 15-16 lbs. You may think this is fat for a cat but he is very tall and used to be able to reach his paws up to the kitchen counter from the floor. Currently his preference is to drink water out of the bathtub while it is running (but he wishes there was a way to do this and not get his feet wet).
Tomorrow, we have to take him to the vet for a fasting blood test. This means we do not expect much sleep tonight. He is used to having food around at all times. If the blood test results are inconclusive, he will need an ultrasound to look for a mass or something in his pancreas. We know what the word 'mass' means. Cats aren't supposed to go on the cancer roller coaster too. I may be jumping ahead but he keeps losing weight and is some what of a medical mystery to the vet. Sigh. I hate medical mysteries.
Wednesday, January 27, 2010
Needles and more needles
I don't like needles. Well, I am okay with the sewing kind but not the kind they stick into you. Its not like I will pass out on the floor but I just can't see them or look at them or see them going into me or anyone else (why do they always show that on TV? - ICKY!) or... well you get the picture. Me and needles are not BFFs. When I arrive at the blood lab for tests, I always say 'don't show me the needles'.
So yesterday it was with great interest I read this article that coughing can ease the pain of a needle going into you. Well, I think this is a big fat lie. When you cough, you react and move. What if when you cough, you move and they miss? OUCH! I'm not trying it.
Then there was a second article which is somewhat upsetting. They are recalling needles used for port injections because they are making little slivers of silicone which can get into the port or the patient. These needles were manufactured between Jan 2007 and August 2009. I had my port from September 2007 to March 2008 (or somewhere around there). I am not reassured by this at all. Do I have little slivers circulating around inside me? Well, I guess they might be better than cancer cooties but still a port was supposed to be helpful not potentially dangerous. And they don't tell you really what the risks of little slivers is. Thank you for the (lack of) reassurance.
So yesterday it was with great interest I read this article that coughing can ease the pain of a needle going into you. Well, I think this is a big fat lie. When you cough, you react and move. What if when you cough, you move and they miss? OUCH! I'm not trying it.
Then there was a second article which is somewhat upsetting. They are recalling needles used for port injections because they are making little slivers of silicone which can get into the port or the patient. These needles were manufactured between Jan 2007 and August 2009. I had my port from September 2007 to March 2008 (or somewhere around there). I am not reassured by this at all. Do I have little slivers circulating around inside me? Well, I guess they might be better than cancer cooties but still a port was supposed to be helpful not potentially dangerous. And they don't tell you really what the risks of little slivers is. Thank you for the (lack of) reassurance.
Tuesday, January 26, 2010
A long day
I no longer have the ability to last for a whole day without getting tired. I had a long day yesterday and then was exhausted as a result. I went to my radiation oncologist for a follow up at 830 (she said I was doing fine and see me in six months - yippee!). Then I tried to go to the gym but there were no parking places so I came home and dragged Walter out on a walk before going to work for the afternoon. It wasn't that long a walk. Work was chaotic because there was a power outage which meant we had ceiling lights and phones due to the generator but no computers or classroom lights. And the damn phone wouldn't stop wringing. But I got to leave and rush off to my ankle MRI - which was running 30 minutes behind and I didn't get home until nearly 7. I was exhausted. I heated up chili for dinner and went to bed at 9 pm. Now I have nothing against going to bed early, in fact I do it often. But its not often that I am flat out exhausted by that time and fall asleep immediately. Grrr! This morning I am okay but have three more long days in front of me. Triple Grr!
Yesterday was not as smooth as it could have been. First of all was the weight issue. (I'm not telling.) I got up and weighed myself as I do periodically and was gratified to see that the scale is actually going in the right direction. But then they weighed me at the doctor's office - on this really old scale. It said five pounds more than I was at home - which I pointed out to the nurse in hopes that she would write down my number and not her's - to no avail. When I arrived to my MRI, they asked twice what I weigh. I hate writing down what I weigh - mostly because I hate the damn number. The first time I wrote down what I had hoped the scale would say yesterday morning. The second time I left it blank so they could figure it out if they really need to. My personal little rebellion. Cancer treatment makes you fat. And back pain medication makes you fat. That's all I'll say about it.
The other issue was the list of medications issue. I always keep it on my computer and print it out before medical appointments and sometimes they ask me if I have it with me but usually they don't. I have had the same list in my purse for a couple of weeks. Well yesterday morning they asked me for it and I gave them my list. Then at my MRI, they wanted a copy of my list so I was supposed to REMEMBER it! What were they thinking? I don't know. So I made it up. Well, I did try to be truthful but frankly there are so many things on it and I don't remember the doses of everything. So I left a bunch of blanks and guestimated the rest.
Today I have to get moving to get to work so I can come home when its light out and drag Walter out on a walk. (But I could use a morning nap.)
Yesterday was not as smooth as it could have been. First of all was the weight issue. (I'm not telling.) I got up and weighed myself as I do periodically and was gratified to see that the scale is actually going in the right direction. But then they weighed me at the doctor's office - on this really old scale. It said five pounds more than I was at home - which I pointed out to the nurse in hopes that she would write down my number and not her's - to no avail. When I arrived to my MRI, they asked twice what I weigh. I hate writing down what I weigh - mostly because I hate the damn number. The first time I wrote down what I had hoped the scale would say yesterday morning. The second time I left it blank so they could figure it out if they really need to. My personal little rebellion. Cancer treatment makes you fat. And back pain medication makes you fat. That's all I'll say about it.
The other issue was the list of medications issue. I always keep it on my computer and print it out before medical appointments and sometimes they ask me if I have it with me but usually they don't. I have had the same list in my purse for a couple of weeks. Well yesterday morning they asked me for it and I gave them my list. Then at my MRI, they wanted a copy of my list so I was supposed to REMEMBER it! What were they thinking? I don't know. So I made it up. Well, I did try to be truthful but frankly there are so many things on it and I don't remember the doses of everything. So I left a bunch of blanks and guestimated the rest.
Today I have to get moving to get to work so I can come home when its light out and drag Walter out on a walk. (But I could use a morning nap.)
Monday, January 25, 2010
Its all about who you know - AGAIN!
I was reading yesterday (while on the treadmill at the gym so I get lots of extra points for multi tasking) an article in Newsweek from last fall about cancer treatment. Apparently where you get treated has a big part in survival rates. If you go to a specialized cancer center your survival rates are probably better than if you are treated at a community hospital. And most of it seems to come down to the question of how many cases like yours has your doctor seen?
Apparently if you have a garden variety cancer like breast cancer with a canned treatment approach, you will probably be fine at a community hospital. But if you have an obscure sarcoma, run, don't walk to a big name cancer center. Makes sense. I think doctors do try to do their best and if they see hundreds of cancer cases a year they probably are very comfortable treating and know exactly what to look at to get the best treatment protocol. If you have a doctor who hasn't seen a sarcoma like yours since medical school, get a second opinion asap. I am sure this doctor has been treating lots of other people quite successfully for lots of other ailments but nobody can be an expert at everything.
So this leads me to think. Am I being treated at a community hospital or a cancer center? I go to a suburban hospital which is convenient to my home. I don't consider it a big cancer center but it is a relatively large hospital with decent ratings and is expanding and its 6 miles from home. All my doctors and medical records are there. Apparently my breast cancer and thyroid cancer were garden variety enough so I don't necessarily need specialized diagnosis and treatment. And, most importantly, its in my comfort zone so I'm staying there.
Its a good thing its so damn convenient because I have to go there twice today - this morning for a follow up with my radiation oncologist and then again at the end of the day for an MRI of my pesky ankle. The one thing they do need is a frequent patient perks plan - discounted parking, free bottled water, etc. - would be nice.
Apparently if you have a garden variety cancer like breast cancer with a canned treatment approach, you will probably be fine at a community hospital. But if you have an obscure sarcoma, run, don't walk to a big name cancer center. Makes sense. I think doctors do try to do their best and if they see hundreds of cancer cases a year they probably are very comfortable treating and know exactly what to look at to get the best treatment protocol. If you have a doctor who hasn't seen a sarcoma like yours since medical school, get a second opinion asap. I am sure this doctor has been treating lots of other people quite successfully for lots of other ailments but nobody can be an expert at everything.
So this leads me to think. Am I being treated at a community hospital or a cancer center? I go to a suburban hospital which is convenient to my home. I don't consider it a big cancer center but it is a relatively large hospital with decent ratings and is expanding and its 6 miles from home. All my doctors and medical records are there. Apparently my breast cancer and thyroid cancer were garden variety enough so I don't necessarily need specialized diagnosis and treatment. And, most importantly, its in my comfort zone so I'm staying there.
Its a good thing its so damn convenient because I have to go there twice today - this morning for a follow up with my radiation oncologist and then again at the end of the day for an MRI of my pesky ankle. The one thing they do need is a frequent patient perks plan - discounted parking, free bottled water, etc. - would be nice.
Sunday, January 24, 2010
Caring for caregivers
Now that I have had a short excursion into the world of caregivers, I can consider myself some what of an 'expert' on the subject. (Well, no I am not an expert but at least I can write about it with some sort of knowledge, albeit very minor.) They say cancer is an isolating disease. If you haven't had cancer, you don't know what I mean. Just say 'I have cancer' and watch people disappear from your life. But being a caregiver is isolating, exhausting - emotionally and physically, and just plain overwhelming.
I spent the six days Walter was in the hospital, driving back and forth to the hospital, on the phone with the hospital, or sitting in an emotionally exhausted stupor. It was a trying time to say the least and one that I hope that I don't have to repeat anytime soon. And I wonder how he put up with me being sick all the time.
I think when you are the patient you do feel a bit more in control because you are making your decisions. When you are the caregiver, you need to let the patient go through the stages of decision making and dealing with their diagnosis. You sit helplessly and watch them deal.
There is a further progression in caregiving when the patient can no longer care for themself. Then I think the caregiver gets more responsibility and the dynamic changes. But regardless of the stage you are at, the caregiver needs to be cared for as well. Maybe its just a few hours of respite and being allowed to relax or just some attention to their well being, both mental and physical.
I spent the six days Walter was in the hospital, driving back and forth to the hospital, on the phone with the hospital, or sitting in an emotionally exhausted stupor. It was a trying time to say the least and one that I hope that I don't have to repeat anytime soon. And I wonder how he put up with me being sick all the time.
I think when you are the patient you do feel a bit more in control because you are making your decisions. When you are the caregiver, you need to let the patient go through the stages of decision making and dealing with their diagnosis. You sit helplessly and watch them deal.
There is a further progression in caregiving when the patient can no longer care for themself. Then I think the caregiver gets more responsibility and the dynamic changes. But regardless of the stage you are at, the caregiver needs to be cared for as well. Maybe its just a few hours of respite and being allowed to relax or just some attention to their well being, both mental and physical.
Saturday, January 23, 2010
Rules in my life
I have rules in my life. Well, there are the normal things - like clean underwear and a shower daily or eat a balanced diet with lots of veggies and sneak lots of veggies into hubby's diet. Those are the basics. But then there are Caroline's personal rules of dealing with medical trauma:
1. The two week rule - you cannot have an ailment unless you still have it for two weeks. Now this does not apply to things that are spewing blood or causing you to writhe in pain. But it does apply to things like common colds (or is it bubonic plague), mystery medical ailments (is that a headache or a brain tumor?), etc. You get the point. If I have a cold, I do not go to the doctor unless I still have it two weeks later and it is not getting better. If I have an ache or pain, it has to still be there, and not improved or getting worse after two weeks before I bring it to a doctor's attention.
Why do I have this rule? Once you have cancer, all you have to do is show up at a medical professional's office and say I have this and a history of cancer and they want to inspect you inside and out and send you off for all kinds of tests and 'procedures' involving needles and 90% of the time at the end of it, they say its no big deal but with your medical history we had to be sure (blah, blah, blah).
2. Three day wallowing rule. This is not my original rule. I stole this from Kris Carr's Crazy Sexy Life (and I might be wrong, it might be the two day wallowing rule - I need to reread her book to confirm - but her book is a great read so I probably should reread it anyway). The point of this rule is so you got bad news - after three days you need to get over it and suck it up and get on with your life and develop a plan for dealing with it. You can't let bad medical news cause you to go hide for the rest of your life - if I did that, I would be living in the corner of a cave somewhere as a shivering pile of blubber in the corner. Its your life, you are supposed to enjoy it (well you wont really enjoy those wonderful tests and 'procedures' or dentists drilling your teeth or paying taxes) but you get the point.
3. There are things never to give up in life. Two of them are: sense of humor and feelings of hope. Ask my husband about the sense of humor issue. Smart ass comments are our ways of dealing with life's medical issues. Right now, his steri strips are itching (just like mine did after all my surgeries) and I am supporting him with sarcasm. I have offered to remove them for him but he has declined. (Wimp.)
Hope is essential. A couple of years ago, post cancer but not last year (because I have no brain anymore I can't remember exactly) we were in some museum gift store that was selling their holiday stuff at 90% off and they had a big sign that says Hope in metal letters. That sign is now hanging in my office where I look at it daily to remind me I need hope that I will get through all this. I will return to a healthy life and get to do the things I enjoy. There will be a cure for cancer and back issues for which there is nothing they can do now but treat the symptoms.
These are the rules that I live by. Or try to. Sometimes when the medical roller coaster gets a little bumpy, it can be hard to remember them. But I am trying.
1. The two week rule - you cannot have an ailment unless you still have it for two weeks. Now this does not apply to things that are spewing blood or causing you to writhe in pain. But it does apply to things like common colds (or is it bubonic plague), mystery medical ailments (is that a headache or a brain tumor?), etc. You get the point. If I have a cold, I do not go to the doctor unless I still have it two weeks later and it is not getting better. If I have an ache or pain, it has to still be there, and not improved or getting worse after two weeks before I bring it to a doctor's attention.
Why do I have this rule? Once you have cancer, all you have to do is show up at a medical professional's office and say I have this and a history of cancer and they want to inspect you inside and out and send you off for all kinds of tests and 'procedures' involving needles and 90% of the time at the end of it, they say its no big deal but with your medical history we had to be sure (blah, blah, blah).
2. Three day wallowing rule. This is not my original rule. I stole this from Kris Carr's Crazy Sexy Life (and I might be wrong, it might be the two day wallowing rule - I need to reread her book to confirm - but her book is a great read so I probably should reread it anyway). The point of this rule is so you got bad news - after three days you need to get over it and suck it up and get on with your life and develop a plan for dealing with it. You can't let bad medical news cause you to go hide for the rest of your life - if I did that, I would be living in the corner of a cave somewhere as a shivering pile of blubber in the corner. Its your life, you are supposed to enjoy it (well you wont really enjoy those wonderful tests and 'procedures' or dentists drilling your teeth or paying taxes) but you get the point.
3. There are things never to give up in life. Two of them are: sense of humor and feelings of hope. Ask my husband about the sense of humor issue. Smart ass comments are our ways of dealing with life's medical issues. Right now, his steri strips are itching (just like mine did after all my surgeries) and I am supporting him with sarcasm. I have offered to remove them for him but he has declined. (Wimp.)
Hope is essential. A couple of years ago, post cancer but not last year (because I have no brain anymore I can't remember exactly) we were in some museum gift store that was selling their holiday stuff at 90% off and they had a big sign that says Hope in metal letters. That sign is now hanging in my office where I look at it daily to remind me I need hope that I will get through all this. I will return to a healthy life and get to do the things I enjoy. There will be a cure for cancer and back issues for which there is nothing they can do now but treat the symptoms.
These are the rules that I live by. Or try to. Sometimes when the medical roller coaster gets a little bumpy, it can be hard to remember them. But I am trying.
Friday, January 22, 2010
I'm spoiled
I admit I'm spoiled. I get all my medical treatment in the same place and all my medical records are there. (I would be in big trouble if something happened to them!) However, if I went to another place for treatment, I would have to get my medical records and drag them along. I know lots of people who do this - take medical records from place to place. I don't think I could handle the responsibility
I really don't have my medical records. I do have lots of test results thoughtfully assembled in little piles or folders but not really anywhere consistently. If I need to find anything, I have to dig around. Recently I unearthed a file with some test results from the 1990's. But I can't find the reports from around any of my surgeries - how helpful is that.
So recently there was an article on CNN (see I told you I would get back to medical stuff instead of whining soon) about patients and family members who have difficulty getting the data from one medical facility. First of all, this is the patient's data so its yours so you should manage it. I know I am spoiled and don't have to worry about this one so I am biased. But I think if you know you are going to need your medical information to take to another doctor, make sure you get it ahead of time. And be slightly more organized than I am to make sure you can find it.
But I completely understand when there is an emergency, you can't plan ahead. I would be in the same boat if I had to go for medical emergency treatment anywhere. I would have to get the records to the other hospital quickly. This would be a real problem. I do kind of circumvent this by keeping a list of medical issues and treatment that I can easily produce if needed. But if I was hospitalized and someone else had to locate it on my computer, that's another story.
HIPPA has complicated things a bit. Hospitals are required to keep the information private. Last summer I wanted a copy of a test result and could get it by going to medical records and having them print it out at no charge. But if I wanted multiple pages, I would have had to pay and it would have taken time which wouldn't be available if it was a true emergency.
Hospitals are large institutions with policies and procedures for patient protection built into place. So I had to learn to work within these. I found out a lot just by going to the Medical Records Department and asking questions.
Electronic medical records are helpful and are available where I am treated now, but they only go back so far. When I met with an endocrinologist recently, she asked about my original pathology report from 1981. As I actually saw it in December 2007, I could tell her a little about it. She was glad to hear it had surfaced that recently but knew it would take a bit to get hold of it again.
I find it crazy that the people in the article have to go through so many hoops to get the information. The system clearly needs to change so that you have access to your patient data when its needed, and not when its too late. In the meantime, I am spoiled and will continue to get all my treatment in one place.
I really don't have my medical records. I do have lots of test results thoughtfully assembled in little piles or folders but not really anywhere consistently. If I need to find anything, I have to dig around. Recently I unearthed a file with some test results from the 1990's. But I can't find the reports from around any of my surgeries - how helpful is that.
So recently there was an article on CNN (see I told you I would get back to medical stuff instead of whining soon) about patients and family members who have difficulty getting the data from one medical facility. First of all, this is the patient's data so its yours so you should manage it. I know I am spoiled and don't have to worry about this one so I am biased. But I think if you know you are going to need your medical information to take to another doctor, make sure you get it ahead of time. And be slightly more organized than I am to make sure you can find it.
But I completely understand when there is an emergency, you can't plan ahead. I would be in the same boat if I had to go for medical emergency treatment anywhere. I would have to get the records to the other hospital quickly. This would be a real problem. I do kind of circumvent this by keeping a list of medical issues and treatment that I can easily produce if needed. But if I was hospitalized and someone else had to locate it on my computer, that's another story.
HIPPA has complicated things a bit. Hospitals are required to keep the information private. Last summer I wanted a copy of a test result and could get it by going to medical records and having them print it out at no charge. But if I wanted multiple pages, I would have had to pay and it would have taken time which wouldn't be available if it was a true emergency.
Hospitals are large institutions with policies and procedures for patient protection built into place. So I had to learn to work within these. I found out a lot just by going to the Medical Records Department and asking questions.
Electronic medical records are helpful and are available where I am treated now, but they only go back so far. When I met with an endocrinologist recently, she asked about my original pathology report from 1981. As I actually saw it in December 2007, I could tell her a little about it. She was glad to hear it had surfaced that recently but knew it would take a bit to get hold of it again.
I find it crazy that the people in the article have to go through so many hoops to get the information. The system clearly needs to change so that you have access to your patient data when its needed, and not when its too late. In the meantime, I am spoiled and will continue to get all my treatment in one place.
Thursday, January 21, 2010
Cancer changes things
That was not meant to be any kind of profound statement requiring you to say 'well, doh!' I have been thinking about my last two posts over the past two days and rereading them. I think the background from both of those posts is really that I had cancer, some people treat me differently and I don't really like that so I have learned not to let that stress me out. Also as a result of cancer, is that it has made me treasure some relationships more than others. I have learned to re-prioritize. Did I want to rule the world before cancer? Well, maybe but that was a really long time ago.
After my first diagnosis, I felt I had a chance to do what I wanted with my life. And I did. I dated. I met my husband. I had a career. I worked full time, and more. I traveled on business a lot. I commuted long hours. I put up with a lot of crap. It was called life.
Then in 2005, after getting married, my health began the beginning of a series of all sorts of medical adventures starting with a hysterectomy and, a year a half later, in 2007, my second cancer diagnosis. I no longer had the desire the rule the world, or even a small department. I wanted time to be me. I don't want to work full time because I want to be able to spend time with my husband, volunteer work, cat, garden, cooking, and the fun things in life. But I also can't work full time because I still need to schedule too many damn doctor appointments.
But these medical (mis-)adventures also served as a wake up call to the big question of 'what do I want to do when I grow up?' (I used to ask that question of potential employees when interviewing to see how they could think on their feet and put together a coherent answer.) But I don't think anyone really does know what they want to do. You know what you hope to do but will have to get there through the little detours life hands out.
Because of cancer, I have changed many things in my life. I no longer have an overwhelming urge to commute long distances to work. I would be happy never to go on another business trip. I don't feel the need to deal with nitwits, and other difficult people. I also aren't going their ignorance or personal issues stress me out. I am going to do my own thing and ignore them. I will be happy with the friends I have but am not going to adopt their issues as mine.
Cancer has made me value relationships that I have and not let me regret the ones I need to ignore.
After my first diagnosis, I felt I had a chance to do what I wanted with my life. And I did. I dated. I met my husband. I had a career. I worked full time, and more. I traveled on business a lot. I commuted long hours. I put up with a lot of crap. It was called life.
Then in 2005, after getting married, my health began the beginning of a series of all sorts of medical adventures starting with a hysterectomy and, a year a half later, in 2007, my second cancer diagnosis. I no longer had the desire the rule the world, or even a small department. I wanted time to be me. I don't want to work full time because I want to be able to spend time with my husband, volunteer work, cat, garden, cooking, and the fun things in life. But I also can't work full time because I still need to schedule too many damn doctor appointments.
But these medical (mis-)adventures also served as a wake up call to the big question of 'what do I want to do when I grow up?' (I used to ask that question of potential employees when interviewing to see how they could think on their feet and put together a coherent answer.) But I don't think anyone really does know what they want to do. You know what you hope to do but will have to get there through the little detours life hands out.
Because of cancer, I have changed many things in my life. I no longer have an overwhelming urge to commute long distances to work. I would be happy never to go on another business trip. I don't feel the need to deal with nitwits, and other difficult people. I also aren't going their ignorance or personal issues stress me out. I am going to do my own thing and ignore them. I will be happy with the friends I have but am not going to adopt their issues as mine.
Cancer has made me value relationships that I have and not let me regret the ones I need to ignore.
Wednesday, January 20, 2010
A frustrating day
Well maybe not a frustrating day but a stressful day. I went to the gym in the morning in an effort to destress (and deflab) - I get extra points because I WALKED there in a SNOW STORM (but it was just a dusting of another 1-3"). Then my husband and I walked to vote and back - a big adventure for him since he hasn't done much since getting out of the hospital.
My schedule was to bring Thai food at 1130 to have lunch with my friends. Well I am so smart - the restaurant doesn't open until 1130... I should have looked at the menu before I picked the time. So I had to call my friends and push it until later. So we finally had lunch and were just finishing up and the doorbell rings - it was an unplanned but somewhat expected visit from her physical therapist - so we had to cut things short. My friend we visited looks pretty good but is on oxygen and gets out of breath pretty quickly. I hope to get back for another visit before long.
I then headed to work where I'll just say attitude is everything. Personal communication skills are important in a small office. It was very busy, bordering on chaotic - one line can't ring by its self, but both phone lines can. And then there is the issue of the failing level of legibility in handwriting by the general public. Is that a 2 or a 7? Is that an A or an O? Grr, grr, grr.
So what does this have to do with dealing with cancer? One of my resolutions through dealing with all my wonderful medical issues is I am no longer required to:
- drive to work in snowstorms
- rearrange medical appointments around work, I arrange work around medical appointments
- deal with idiots on a regular basis
- worry about other people's personal problems
As a professional patient these days, I have enough aggravations in my life without these. I don't care if people I deal with are stupid, insensitive, irrational, narrow minded, or otherwise too ridiculous to deal with. In the past I might have been more likely to adapt and deal with them but at this point, I feel no reason to. In fact, I used to work for a horrible man who believed he was motivating his employees by reducing them to tears after he ranted and raged, temper out of control. I left that job, even though I didn't have a new one at the time, and swore I would never allow other people's personal problems to interfere with my working again. The sad part is these people probably don't understand how difficult they are. My virtuous little solution is to be an adult and just avoid them as much as possible. Does this sound mature? No but sometimes avoiding a bad situation is the best policy. The 'flee' mechanism of survival kicking in. And also trying to avoid being sucked into a bad situation.
I guess we can call today's blog a general whine but you know, I am entitled. I ended my day by driving home while it was snowing and slippery. I was feeling very frustrated and stressed by last evening (and had a raging case of heart burn - perhaps I shouldn't try to skip prilosec regularly). So much for sucking it up and dealing. I am entitled to be whiney sometimes. If I was healthy, perhaps I would whine less. I promise to write about something more important than whining tomorrow.
My schedule was to bring Thai food at 1130 to have lunch with my friends. Well I am so smart - the restaurant doesn't open until 1130... I should have looked at the menu before I picked the time. So I had to call my friends and push it until later. So we finally had lunch and were just finishing up and the doorbell rings - it was an unplanned but somewhat expected visit from her physical therapist - so we had to cut things short. My friend we visited looks pretty good but is on oxygen and gets out of breath pretty quickly. I hope to get back for another visit before long.
I then headed to work where I'll just say attitude is everything. Personal communication skills are important in a small office. It was very busy, bordering on chaotic - one line can't ring by its self, but both phone lines can. And then there is the issue of the failing level of legibility in handwriting by the general public. Is that a 2 or a 7? Is that an A or an O? Grr, grr, grr.
So what does this have to do with dealing with cancer? One of my resolutions through dealing with all my wonderful medical issues is I am no longer required to:
- drive to work in snowstorms
- rearrange medical appointments around work, I arrange work around medical appointments
- deal with idiots on a regular basis
- worry about other people's personal problems
As a professional patient these days, I have enough aggravations in my life without these. I don't care if people I deal with are stupid, insensitive, irrational, narrow minded, or otherwise too ridiculous to deal with. In the past I might have been more likely to adapt and deal with them but at this point, I feel no reason to. In fact, I used to work for a horrible man who believed he was motivating his employees by reducing them to tears after he ranted and raged, temper out of control. I left that job, even though I didn't have a new one at the time, and swore I would never allow other people's personal problems to interfere with my working again. The sad part is these people probably don't understand how difficult they are. My virtuous little solution is to be an adult and just avoid them as much as possible. Does this sound mature? No but sometimes avoiding a bad situation is the best policy. The 'flee' mechanism of survival kicking in. And also trying to avoid being sucked into a bad situation.
I guess we can call today's blog a general whine but you know, I am entitled. I ended my day by driving home while it was snowing and slippery. I was feeling very frustrated and stressed by last evening (and had a raging case of heart burn - perhaps I shouldn't try to skip prilosec regularly). So much for sucking it up and dealing. I am entitled to be whiney sometimes. If I was healthy, perhaps I would whine less. I promise to write about something more important than whining tomorrow.
Tuesday, January 19, 2010
Cancer and friendships
Cancer does amazing things with friendships, it create bonds and breaks bonds. Anyone with cancer can tell you how cancer destroys friendships.
But then, you get to make all sorts of nice new friendships with others going through the same. Someone I know blogged about this recently. I met a bunch of women in December 2007 when I was in the middle of chemo and looking my 'best' in my wig with that lovely chemo/holding back nausea pallor. But we were all the same boat as we were part of a cancer support group for newly diagnosed patients. Through the seven or eight week program (I have chemo brain and have no idea how long it lasted and if I asked the rest of them I am sure none would remember either because they all have chemo brain too) we all bonded and still meet monthly. Our age range probably spans more than 30 years. We come from different walks of life. We aren't even treated at the same hospital. But we stay in touch and support each other. These are friends for life.
I also met other women and men with cancer at other events since my diagnosis that I have gotten very close to. Some of them I have never met and only know online. My Facebook account is full of people who I have never met but know very well through cancer. I am active in several other online communities with more friends. Again, we support each other and stay in touch. Some of us actually meet a few times a year to reinforce online relationships.
Different versions of this have happened to me over the years, in person, on the phone, or by email.
"Hi, how are you? What have you been up to?", being cheerful and perky, the 'friend' calls.
"Oh, sorry to be out of touch but I have been dealing with some health issues but am better now." Smiling, now that speaking with old friend.
"Well, if you are feeling better, let's do lunch." also being cheerful and perky says the 'friend'.
"Well, now that I am through chemotherapy after my cancer diagnosis, I'd love to do lunch." Or in so many words.
"Oh, sorry, I just checked my calendar. Can I get back to you next month?", sounding distant and strained after sudden pause. And you never hear from them again.
Then there are the cancer friendship abusers. Who are these people? I don't know but their actions are also hurtful. These are the people who use their cancer to manipulate or use others. You know of some of them - the one's who fake cancer diagnoses to get sympathy or money. You hear about them on the news after they are arrested and looking at jail time.
But a bit closer to home are the people who use their cancer to manipulate friends. I met one woman online shortly after my cancer diagnosis. She actually lives very close. After emailing back and forth, we got to be friends and used to meet for coffee. Then one day she threw a big birthday party for herself (as the previous year she had been in treatment and missed it) and sent me an invite. Nothing unusual there but when I arrived at the party with my husband, she made a point of introducing me to other women with breast cancer. It turned out none of them really knew her that well but its like she invited a collection of women with breast cancer to her party to show off to her other friends that she was cool because she knew people with breast cancer. I felt like the geeks at the fraternity rush party in Animal House where they are stuck in the corner to be stared at and disdained. We left shortly after we arrived and I never heard from her since.
An online friend sent me a note about another woman in my neighborhood who was dealing with her cancer diagnosis and possible recurrence. We emailed, talked, met for coffee, talked about her surgery and ensuing follow up doctor appointments. As soon as she got a clean bill of health, I never heard from her again.
I don't think these people understand that they are not being friends but being users.
But today, I am going to see a woman from one of my support groups. We were in the same group weekly for two years and have also met for lunch (always Thai food), walks, etc. She has triple negative breast cancer. She was first diagnosed four years ago and had a recurrence two years ago. She is now on oxygen, at home, with visiting nurses and I think she said they have one last experimental chemo for her to try but there is not much hope and she is in constant pain. She is in her mid 40's with a six year old and a husband. I am going with another friend and bringing Thai food for lunch and will continue to go as long as she is up for visitors. This is also the downside of friends with cancer but it is part of being a friend.
But then, you get to make all sorts of nice new friendships with others going through the same. Someone I know blogged about this recently. I met a bunch of women in December 2007 when I was in the middle of chemo and looking my 'best' in my wig with that lovely chemo/holding back nausea pallor. But we were all the same boat as we were part of a cancer support group for newly diagnosed patients. Through the seven or eight week program (I have chemo brain and have no idea how long it lasted and if I asked the rest of them I am sure none would remember either because they all have chemo brain too) we all bonded and still meet monthly. Our age range probably spans more than 30 years. We come from different walks of life. We aren't even treated at the same hospital. But we stay in touch and support each other. These are friends for life.
I also met other women and men with cancer at other events since my diagnosis that I have gotten very close to. Some of them I have never met and only know online. My Facebook account is full of people who I have never met but know very well through cancer. I am active in several other online communities with more friends. Again, we support each other and stay in touch. Some of us actually meet a few times a year to reinforce online relationships.
Different versions of this have happened to me over the years, in person, on the phone, or by email.
"Hi, how are you? What have you been up to?", being cheerful and perky, the 'friend' calls.
"Oh, sorry to be out of touch but I have been dealing with some health issues but am better now." Smiling, now that speaking with old friend.
"Well, if you are feeling better, let's do lunch." also being cheerful and perky says the 'friend'.
"Well, now that I am through chemotherapy after my cancer diagnosis, I'd love to do lunch." Or in so many words.
"Oh, sorry, I just checked my calendar. Can I get back to you next month?", sounding distant and strained after sudden pause. And you never hear from them again.
Then there are the cancer friendship abusers. Who are these people? I don't know but their actions are also hurtful. These are the people who use their cancer to manipulate or use others. You know of some of them - the one's who fake cancer diagnoses to get sympathy or money. You hear about them on the news after they are arrested and looking at jail time.
But a bit closer to home are the people who use their cancer to manipulate friends. I met one woman online shortly after my cancer diagnosis. She actually lives very close. After emailing back and forth, we got to be friends and used to meet for coffee. Then one day she threw a big birthday party for herself (as the previous year she had been in treatment and missed it) and sent me an invite. Nothing unusual there but when I arrived at the party with my husband, she made a point of introducing me to other women with breast cancer. It turned out none of them really knew her that well but its like she invited a collection of women with breast cancer to her party to show off to her other friends that she was cool because she knew people with breast cancer. I felt like the geeks at the fraternity rush party in Animal House where they are stuck in the corner to be stared at and disdained. We left shortly after we arrived and I never heard from her since.
An online friend sent me a note about another woman in my neighborhood who was dealing with her cancer diagnosis and possible recurrence. We emailed, talked, met for coffee, talked about her surgery and ensuing follow up doctor appointments. As soon as she got a clean bill of health, I never heard from her again.
I don't think these people understand that they are not being friends but being users.
But today, I am going to see a woman from one of my support groups. We were in the same group weekly for two years and have also met for lunch (always Thai food), walks, etc. She has triple negative breast cancer. She was first diagnosed four years ago and had a recurrence two years ago. She is now on oxygen, at home, with visiting nurses and I think she said they have one last experimental chemo for her to try but there is not much hope and she is in constant pain. She is in her mid 40's with a six year old and a husband. I am going with another friend and bringing Thai food for lunch and will continue to go as long as she is up for visitors. This is also the downside of friends with cancer but it is part of being a friend.
Monday, January 18, 2010
We assume
We assume as residents of the US that we are entitled to some of the best health care and medications available (albeit possibly at a price). However this morning, I would like to go rap some people up side the head.
First of all, you people over at Johnson & Johnson selling moldy Tylenol. You were told in November you had moldy Tylenol. You finally only pulled it off the shelves this week. That would be two months. Are you slow? And now the FDA might make an example out of you. (Don't get the FDA mad, or I think you will never get another drug approved!) If you had moldy smells and tracked it to what the wood pallets are treated with I think two months is plenty of time to fix this issue. And if it was only a limited recall originally, when it was expanded that might say 'hmmm, perhaps we didn't do enough'. Well, now the damage is done.
I was in Walgreen's last week and all Tylenol was pulled from the shelves. The last time I saw a Tylenol recall like this was the early 1980's in metro Chicago. We assume as a customer of a national chain, we are going to purchase a quality product, particularly when we plan to buy the name brand and not the generic or store brand.
Then, there are the 'lucky' people at a local school who did not get H1N1 flu shots, but got a combination with insulin. The news reported only six people had a reaction to this mix but insulin can be deadly to those with blood sugar issues I think.
Last fall there were the other flu shots which were recalled because they were shown to have lost their effectiveness.
One side of the coin is that the FDA has stringent requirements to get medications on the market and to ensure that the public receives the correct doses and drugs. But the other side of the coin are the claims that the FDA is slow to respond and has lengthy requirements to bring a product to market, which drive up the costs of name brand prescriptions and prolong the time required to bring generics to market. Its a fine line. We assume as the public we are getting what we need, the label says and its good quality. We have a right to assume that. But we also need to back the FDA to ensure that they can do their job.
First of all, you people over at Johnson & Johnson selling moldy Tylenol. You were told in November you had moldy Tylenol. You finally only pulled it off the shelves this week. That would be two months. Are you slow? And now the FDA might make an example out of you. (Don't get the FDA mad, or I think you will never get another drug approved!) If you had moldy smells and tracked it to what the wood pallets are treated with I think two months is plenty of time to fix this issue. And if it was only a limited recall originally, when it was expanded that might say 'hmmm, perhaps we didn't do enough'. Well, now the damage is done.
I was in Walgreen's last week and all Tylenol was pulled from the shelves. The last time I saw a Tylenol recall like this was the early 1980's in metro Chicago. We assume as a customer of a national chain, we are going to purchase a quality product, particularly when we plan to buy the name brand and not the generic or store brand.
Then, there are the 'lucky' people at a local school who did not get H1N1 flu shots, but got a combination with insulin. The news reported only six people had a reaction to this mix but insulin can be deadly to those with blood sugar issues I think.
Last fall there were the other flu shots which were recalled because they were shown to have lost their effectiveness.
One side of the coin is that the FDA has stringent requirements to get medications on the market and to ensure that the public receives the correct doses and drugs. But the other side of the coin are the claims that the FDA is slow to respond and has lengthy requirements to bring a product to market, which drive up the costs of name brand prescriptions and prolong the time required to bring generics to market. Its a fine line. We assume as the public we are getting what we need, the label says and its good quality. We have a right to assume that. But we also need to back the FDA to ensure that they can do their job.
Sunday, January 17, 2010
Another oops in my life
You are supposed to be completely honest with your doctor and medical team. Yes, really you are. You are supposed to tell them about eating habits, alcohol consumption, pain frequency and intensity, brushing and flossing (this includes your dentist and hygienist), and vitamin, red meat, and fiber consumption. I think that the honesty level is similar to what you tell your attorney on retainer.
However (and this is a big fat however), do NOT tell them if you have fallen down ever. If they think you have fallen, you become a fall risk. They make sneaky little notes in your medical chart. You have to wear a special bracelet if an in patient. You become a liability or a potential injury. (You might even get bed rails on your bed and need someone to help you out of bed and walk the ten feet to the bathroom.) You are only allowed to fall regularly up to the age two. After that you become risk factor.
While my husband was hospitalized, there was a big flip chart on the wall on the number of days they were fall free. Sort of like the kind you see outside of big manufacturing facilities, 'number of days injury free'. Its supposed to be kind of reassuring. But its really part of this evil plot to protect normal people from walking around and doing things they enjoy.
I did fall recently but I think it should be an exempt fall. It was in the middle of a snow storm, in an unplowed parking lot, where there was a sheet of plastic in the snow with more snow on top of it. That shouldn't count. It wasn't klutziness, it was unplowed parking lot-itis. Also, if I fall doing a sport where you often fall, such as skiing, hiking, ice skating, etc., they shouldn't count either. When I used to ice skate and ski regularly, I was told 'if you don't fall, you aren't trying'. I fell hiking last year while trying to descend a granite slab on a trail. These should all be exemptions from the 'have you fallen recently?' question.
Sadly, I think I am permanently labeled in my medical record as 'general klutz', 'falls regularly', and 'injury risk'. (This is probably better than borderline hypochondriac or chronic patient or whiny b*tch of a patient.) I would like to point out when I sprained my ankle, I did not fall. I kept walking (and said all sorts of bad words) and called home for a ride. In fact, I can think of no falls which caused major injury. Well except the ski trip that ended in knee surgery (but that should be exempt). Perhaps it is time to start 'stretching the truth' about falling to my medical personnel.
However (and this is a big fat however), do NOT tell them if you have fallen down ever. If they think you have fallen, you become a fall risk. They make sneaky little notes in your medical chart. You have to wear a special bracelet if an in patient. You become a liability or a potential injury. (You might even get bed rails on your bed and need someone to help you out of bed and walk the ten feet to the bathroom.) You are only allowed to fall regularly up to the age two. After that you become risk factor.
While my husband was hospitalized, there was a big flip chart on the wall on the number of days they were fall free. Sort of like the kind you see outside of big manufacturing facilities, 'number of days injury free'. Its supposed to be kind of reassuring. But its really part of this evil plot to protect normal people from walking around and doing things they enjoy.
I did fall recently but I think it should be an exempt fall. It was in the middle of a snow storm, in an unplowed parking lot, where there was a sheet of plastic in the snow with more snow on top of it. That shouldn't count. It wasn't klutziness, it was unplowed parking lot-itis. Also, if I fall doing a sport where you often fall, such as skiing, hiking, ice skating, etc., they shouldn't count either. When I used to ice skate and ski regularly, I was told 'if you don't fall, you aren't trying'. I fell hiking last year while trying to descend a granite slab on a trail. These should all be exemptions from the 'have you fallen recently?' question.
Sadly, I think I am permanently labeled in my medical record as 'general klutz', 'falls regularly', and 'injury risk'. (This is probably better than borderline hypochondriac or chronic patient or whiny b*tch of a patient.) I would like to point out when I sprained my ankle, I did not fall. I kept walking (and said all sorts of bad words) and called home for a ride. In fact, I can think of no falls which caused major injury. Well except the ski trip that ended in knee surgery (but that should be exempt). Perhaps it is time to start 'stretching the truth' about falling to my medical personnel.
Saturday, January 16, 2010
Be careful of what you ask for
I was really only trying to be cool like everyone else. Really, that was it. Last fall I went to the Thyroid Cancer Survivors Association's (www.thyca.org) annual conference. Everyone else talked about their endocrinologist and the tests they undergo regularly. I asked another long term survivor and she said that she had an endocrinologist. I even asked an endocrinologist who had given a presentation and he said thyroid cancer patients should probably be followed up with by an endocrinologist. I felt very uncool, and a little uncomfortable - I mean was I missing something important here?
When I was first diagnosed back in 1981, I used to seen an endocrinologist twice a year and then once a year. I had blood tests a lot. Then that endocrinologist (with the perfect doctor completely illegible handwriting that is etched indelibly into my medical chart) retired in the late 1980s and I was sent to a new endocrinologist who went to part time around 1999 or 2000. She told me I could be followed up with by a general internal medicine doctor with periodic visits to an endocrinologist. I haven't seen one since. So last fall I was feeling a tiny bit neglected and asked my oncologist, who happened to be the next doctor I saw after the conference, and she said it probably wouldn't hurt so she sent me to an endocrinologist.
I saw her yesterday. What was I thinking? What is the one thing in my life I need fewer of (besides weight) than anything else? Doctor appointments! Apparently times have changed. I should be seen by an endocrinologist twice a year for blood work and an attempt to level out my thyroid levels which have been bouncing around. And I should have a neck ultrasound every five years. I have never had a neck ultrasound in my life - well maybe back before surgery in 1981 but that was the last time. And although it is likely I would experience a recurrence at this late date, it is possible - thyroid cancer does recur decades later, blah, blah, blah.
Synthroid is hard on bones and after nearly three decades of taking it, bone density is a concern and I need to watch my calcium intake. Calcium and synthroid cannot be taken within hours of each other - I knew that part but apparently your body can only absorb about 500 mg of calcium at a time and it should be split up over the course of the day and I should take one tablet at lunch, one at dinner and one before bed. This definitely complicates my life. Here was my pill intake: wake up - synthroid and tamoxifen; 1 hour later celexa, etodolac, lyrica; 3 hours later vitamins including 1500 mg calcium and 600 units vitamin D; before dinner more etodolac and lyrica. Am I going to remember to add the calcium to all this? NO WAY! I usually remember to take vitamins once a day - but three times? My husband laughed hysterically at me and said I am going to end up with the largest pill box on the planet. (Thank YOU honey!)
So after this week, I now have all sorts of holes in my February calendar filled. In addition to the endocrinologist, I had to add other appointments and change some things. I have two doctor appointments, dentist, and a neck ultrasound. I was admiring the emptiness of my calendar for the month. I believe there is still hope of March but April, May and July now have appointments already. Actually next week I do not have a single doctor appointment - but I think my husband does and I have to drive him (sigh). And to make up for it the following week I have two and an MRI.
So the moral is be careful of what you wish for because you might get it.
Now a brief note on my husband. He got a benign pathology report yesterday from his surgery. No sign of any additional cancer which means, regular colonoscopies but no further surgery or other treatment. Big giant sigh of relief here.
When I was first diagnosed back in 1981, I used to seen an endocrinologist twice a year and then once a year. I had blood tests a lot. Then that endocrinologist (with the perfect doctor completely illegible handwriting that is etched indelibly into my medical chart) retired in the late 1980s and I was sent to a new endocrinologist who went to part time around 1999 or 2000. She told me I could be followed up with by a general internal medicine doctor with periodic visits to an endocrinologist. I haven't seen one since. So last fall I was feeling a tiny bit neglected and asked my oncologist, who happened to be the next doctor I saw after the conference, and she said it probably wouldn't hurt so she sent me to an endocrinologist.
I saw her yesterday. What was I thinking? What is the one thing in my life I need fewer of (besides weight) than anything else? Doctor appointments! Apparently times have changed. I should be seen by an endocrinologist twice a year for blood work and an attempt to level out my thyroid levels which have been bouncing around. And I should have a neck ultrasound every five years. I have never had a neck ultrasound in my life - well maybe back before surgery in 1981 but that was the last time. And although it is likely I would experience a recurrence at this late date, it is possible - thyroid cancer does recur decades later, blah, blah, blah.
Synthroid is hard on bones and after nearly three decades of taking it, bone density is a concern and I need to watch my calcium intake. Calcium and synthroid cannot be taken within hours of each other - I knew that part but apparently your body can only absorb about 500 mg of calcium at a time and it should be split up over the course of the day and I should take one tablet at lunch, one at dinner and one before bed. This definitely complicates my life. Here was my pill intake: wake up - synthroid and tamoxifen; 1 hour later celexa, etodolac, lyrica; 3 hours later vitamins including 1500 mg calcium and 600 units vitamin D; before dinner more etodolac and lyrica. Am I going to remember to add the calcium to all this? NO WAY! I usually remember to take vitamins once a day - but three times? My husband laughed hysterically at me and said I am going to end up with the largest pill box on the planet. (Thank YOU honey!)
So after this week, I now have all sorts of holes in my February calendar filled. In addition to the endocrinologist, I had to add other appointments and change some things. I have two doctor appointments, dentist, and a neck ultrasound. I was admiring the emptiness of my calendar for the month. I believe there is still hope of March but April, May and July now have appointments already. Actually next week I do not have a single doctor appointment - but I think my husband does and I have to drive him (sigh). And to make up for it the following week I have two and an MRI.
So the moral is be careful of what you wish for because you might get it.
Now a brief note on my husband. He got a benign pathology report yesterday from his surgery. No sign of any additional cancer which means, regular colonoscopies but no further surgery or other treatment. Big giant sigh of relief here.
Friday, January 15, 2010
This is my secret goal
Go read Dana Jennings latest blog here. This my secret goal of what I want - I guess it not such a secret any more. Well in addition to a cancer free, pain free body, that's it. At this point I am gratified to learn that one of us cancer people is getting there.
A quick update on today because I am late for work. Yesterday we did a fat lot of nothing. Well not complete nothing. We took a tiny walk. I took a nap. Walter lay down for a couple of hours. I dragged myself to the grocery store and made dinner (salmon, rice and left over carrots). Today I feel better. I am going to work for a few hours, home for lunch and to drag Walter out on another tiny walk before I go to a doctor appointment and then the gym to see how much pain I can inflict on myself. (I know if it hurts, stop and come home.) Another exciting day here. No pathology report yet either.
A quick update on today because I am late for work. Yesterday we did a fat lot of nothing. Well not complete nothing. We took a tiny walk. I took a nap. Walter lay down for a couple of hours. I dragged myself to the grocery store and made dinner (salmon, rice and left over carrots). Today I feel better. I am going to work for a few hours, home for lunch and to drag Walter out on another tiny walk before I go to a doctor appointment and then the gym to see how much pain I can inflict on myself. (I know if it hurts, stop and come home.) Another exciting day here. No pathology report yet either.
Thursday, January 14, 2010
Caregiver/patient mixup
Let's clarify. I am currently supposed to be the caregiver and Walter is the patient. Yesterday I went off to the hospital for my therapist and then my visit with Walter and my injection and additional visit with Walter before getting a ride home late in the day. Well that was the plan. And what is the saying 'the best laid plans...'
Well it started off that I did get a ride to the hospital and went to my therapist. I also got to visit with a friend who volunteers there and grabbed us coffee before getting to Walter's room. Where everything started to change. First the doctor had changed his mind and said he could come home late in the day yesterday. So I called and arranged our transportation with my sister. Then we played scrabble (as I am the good caregiver and concerned about entertainment) and went for a walk (as I am the good caregiver and concerned about exercise). He ordered his lame lunch a plain turkey sandwich and broth and I went to the cafeteria and had a yummy salad before my injection.
I went to my injection - any big needle they stick in between the bones of your spine really hurt no matter what they tell you and how much local they use. Then there is the lovely sensation of steroids and artificial cartilage being injected as well - but we will just forget about that pain shall we as I might have to go through it again, its a memory best repressed. I had to hang out for about 15 minutes before being escorted up to Walter's room to get him ready to go home. That's when the problems started.
As the nursing assistant escorted me to the elevator, I started to feel some mild, to moderate, to severe pain in the back of my right thigh - they had injected my right SI joint. I ignored it and said I would walk it off. These things happen after injections. Well, it got worse, the nursing assistant noticed my funny faces and said she would call back down after we got to his room. The answer was bring her back down in a wheel chair to reevaluate her. Great. So she went off to find a wheelchair which she couldn't find. So I hobbled back down.
Tried to walk for the nurses, said ow, ow, ow. They called the doctor and he prescribed percocet. After half an hour, and phone calls up to Walter's room about revised logistics, I tried walking again and it still hurt. And sometimes while sitting I felt the pain as well, while sitting still. So another call to the doctor and more percocet. Then the doctor came to visit and recommended a day of taking it easy, ice and tramadol (my friend). He also said that this is not that unusual to have the pain as it is the steroid working and it was placed near the nerve.
Finally they said I could leave. In a wheel chair. More phone calls up stairs to reconnoiter with my sister and husband (who was not in a wheel chair even though he had surgery) in the lobby and I would be brought back up in a wheelchair. My sister got the car and then we were on our way home.
My sister was extremely helpful and cooked dinner while I sat on ice. She even took Walter back to the pharmacy to get his prescription filled. Then she stayed but left early. We went to bed at 8 pm. This morning we are 'discussing' who will make coffee and breakfast. The answer is today I made coffee but it will be his turn tomorrow. I will cook him breakfast and make soup this morning. But first I need my pain meds. Triple Grr. I wasn't supposed to be the one back in the patient role. Its his turn. I was kind of liking it, not being sick.
Well it started off that I did get a ride to the hospital and went to my therapist. I also got to visit with a friend who volunteers there and grabbed us coffee before getting to Walter's room. Where everything started to change. First the doctor had changed his mind and said he could come home late in the day yesterday. So I called and arranged our transportation with my sister. Then we played scrabble (as I am the good caregiver and concerned about entertainment) and went for a walk (as I am the good caregiver and concerned about exercise). He ordered his lame lunch a plain turkey sandwich and broth and I went to the cafeteria and had a yummy salad before my injection.
I went to my injection - any big needle they stick in between the bones of your spine really hurt no matter what they tell you and how much local they use. Then there is the lovely sensation of steroids and artificial cartilage being injected as well - but we will just forget about that pain shall we as I might have to go through it again, its a memory best repressed. I had to hang out for about 15 minutes before being escorted up to Walter's room to get him ready to go home. That's when the problems started.
As the nursing assistant escorted me to the elevator, I started to feel some mild, to moderate, to severe pain in the back of my right thigh - they had injected my right SI joint. I ignored it and said I would walk it off. These things happen after injections. Well, it got worse, the nursing assistant noticed my funny faces and said she would call back down after we got to his room. The answer was bring her back down in a wheel chair to reevaluate her. Great. So she went off to find a wheelchair which she couldn't find. So I hobbled back down.
Tried to walk for the nurses, said ow, ow, ow. They called the doctor and he prescribed percocet. After half an hour, and phone calls up to Walter's room about revised logistics, I tried walking again and it still hurt. And sometimes while sitting I felt the pain as well, while sitting still. So another call to the doctor and more percocet. Then the doctor came to visit and recommended a day of taking it easy, ice and tramadol (my friend). He also said that this is not that unusual to have the pain as it is the steroid working and it was placed near the nerve.
Finally they said I could leave. In a wheel chair. More phone calls up stairs to reconnoiter with my sister and husband (who was not in a wheel chair even though he had surgery) in the lobby and I would be brought back up in a wheelchair. My sister got the car and then we were on our way home.
My sister was extremely helpful and cooked dinner while I sat on ice. She even took Walter back to the pharmacy to get his prescription filled. Then she stayed but left early. We went to bed at 8 pm. This morning we are 'discussing' who will make coffee and breakfast. The answer is today I made coffee but it will be his turn tomorrow. I will cook him breakfast and make soup this morning. But first I need my pain meds. Triple Grr. I wasn't supposed to be the one back in the patient role. Its his turn. I was kind of liking it, not being sick.
Wednesday, January 13, 2010
Now I'm trying to be a good caregiver
I have had a few days practice now as a caregiver so now I decided its about time I figured it out and am trying to be a good caregiver. Here are my thoughts:
1. Sense of humor is essential. If the patient is whining about his pain level, drain, catheter, boredom, lack of mobility, etc. a good smart ass comment will usually make him crack a smile. Which is followed by 'ow, don't make me laugh, it hurts'. So maybe that isn't a good idea but the humor part is good.
2. An entertainment plan. A bored patient is a crabby patient. I bring the newspaper which isn't really important, just the funnies and tv guide section. We play scrabble and crank the tunes (Rock and roll only) on the internet radio he has. So he sits there bobbing his head to the music and beating me at scrabble.
3. An exercise plan. The more he walks, it will help his digestion kick in, which will allow him to get out. I insist on a walk at the beginning and end of each visit and yesterday instituted death marches through the hospital. Out of the hospital he always accuses me of taking him on death marches, which I consider to be nice long walks. But now that he is catheter free, I take him on death marches to the farthest end of the hospital, across to the other side and then back to the far end. Whining not allowed. He has started going on walks without me but they seem to be a bit shorter.
4. Medical care. No I am not a nurse but he is supposed to be breathing into the stupid little lung clearing thingie ten times each hour, and suspiciously has always just done it when I arrive... That is the extent of my medical care. I hope he gets his drain out before he comes home because I am not sure I could deal with that at home.
5. Being nosy. I ask questions of the nurses and doctors. Questions like: when do you think he will get out? When do we get the pathology report? Is there any reason he has to have the second IV in his arm still? He complained about a headache (and told me he didn't think they could do anything for him) and I mentioned this to a nurse and he got Tylenol.
6. Being there. I think this is the most important part. I just go and hang out with him as if we were at home. (I would bring the cat but I don't think that is a good idea). As a professional patient myself, I find the worst things are when people evaporate when you aren't feeling well. There is some of the issue of giving sick people some space but there is no reason not to just hang out as much as I normally would with him.
7. Bringing little things. Yesterday he requested a cup of decaf Starbucks coffee. I said sure, no problem and made a special stop at Starbucks to get it. I walk up to the counter and ordered two small decafs (I don't use their fancy language) and was told (drumroll please) 'they stop serving decaf after 10 am as they find they are throwing most of it away'. What a wonderful level of customer service - they offered me two expensive alternatives - Cafe Americano or another one. They didn't understand why I didn't leap at the option of spending more money. (I think they should just make decaf in smaller pots so they throw out less.) So I left and brought coffee, which apparently was somewhat borderline, from the hospital cafeteria. Today I'll bring decaf from the hospital coffee shop.
Once we get home, which should be tomorrow, none of this stuff will change, except he will get to make his own toast instead of having it delivered on a giant domed tray.
In the meantime, I have to leave here for a special day of fun and games in 50 minutes and I have not yet eaten or showered or given the cat his antibiotics (now there's a caregiver battle). I have a therapist appointment to talk about my stress level and then visit Walter and then I get to have a lovely giant needle in my sacroiliac joint to relieve pain and then back up to visit Walter and the my sister will drive me home (and help me set up the futon bed - but she doesn't know that yet so don't tell her). We want to have a bed he can stretch out on downstairs during the day if needed for the first couple of weeks when he is limited in number of trips up and down stairs. Perhaps it is time I stop typing in get my (fat) butt in gear and get ready.
1. Sense of humor is essential. If the patient is whining about his pain level, drain, catheter, boredom, lack of mobility, etc. a good smart ass comment will usually make him crack a smile. Which is followed by 'ow, don't make me laugh, it hurts'. So maybe that isn't a good idea but the humor part is good.
2. An entertainment plan. A bored patient is a crabby patient. I bring the newspaper which isn't really important, just the funnies and tv guide section. We play scrabble and crank the tunes (Rock and roll only) on the internet radio he has. So he sits there bobbing his head to the music and beating me at scrabble.
3. An exercise plan. The more he walks, it will help his digestion kick in, which will allow him to get out. I insist on a walk at the beginning and end of each visit and yesterday instituted death marches through the hospital. Out of the hospital he always accuses me of taking him on death marches, which I consider to be nice long walks. But now that he is catheter free, I take him on death marches to the farthest end of the hospital, across to the other side and then back to the far end. Whining not allowed. He has started going on walks without me but they seem to be a bit shorter.
4. Medical care. No I am not a nurse but he is supposed to be breathing into the stupid little lung clearing thingie ten times each hour, and suspiciously has always just done it when I arrive... That is the extent of my medical care. I hope he gets his drain out before he comes home because I am not sure I could deal with that at home.
5. Being nosy. I ask questions of the nurses and doctors. Questions like: when do you think he will get out? When do we get the pathology report? Is there any reason he has to have the second IV in his arm still? He complained about a headache (and told me he didn't think they could do anything for him) and I mentioned this to a nurse and he got Tylenol.
6. Being there. I think this is the most important part. I just go and hang out with him as if we were at home. (I would bring the cat but I don't think that is a good idea). As a professional patient myself, I find the worst things are when people evaporate when you aren't feeling well. There is some of the issue of giving sick people some space but there is no reason not to just hang out as much as I normally would with him.
7. Bringing little things. Yesterday he requested a cup of decaf Starbucks coffee. I said sure, no problem and made a special stop at Starbucks to get it. I walk up to the counter and ordered two small decafs (I don't use their fancy language) and was told (drumroll please) 'they stop serving decaf after 10 am as they find they are throwing most of it away'. What a wonderful level of customer service - they offered me two expensive alternatives - Cafe Americano or another one. They didn't understand why I didn't leap at the option of spending more money. (I think they should just make decaf in smaller pots so they throw out less.) So I left and brought coffee, which apparently was somewhat borderline, from the hospital cafeteria. Today I'll bring decaf from the hospital coffee shop.
Once we get home, which should be tomorrow, none of this stuff will change, except he will get to make his own toast instead of having it delivered on a giant domed tray.
In the meantime, I have to leave here for a special day of fun and games in 50 minutes and I have not yet eaten or showered or given the cat his antibiotics (now there's a caregiver battle). I have a therapist appointment to talk about my stress level and then visit Walter and then I get to have a lovely giant needle in my sacroiliac joint to relieve pain and then back up to visit Walter and the my sister will drive me home (and help me set up the futon bed - but she doesn't know that yet so don't tell her). We want to have a bed he can stretch out on downstairs during the day if needed for the first couple of weeks when he is limited in number of trips up and down stairs. Perhaps it is time I stop typing in get my (fat) butt in gear and get ready.
Tuesday, January 12, 2010
More thoughts on being a caregiver
Being a caregiver is exhausting - and he's still in the hospital. I spend all my time worrying about him, going back and forth to the hospital, and worrying. I'm allowed to worry, I'm his wife and I've been on the cancer bus much longer than he has so I know what its like.
But its exhausting. The last three nights I have come home and basically collapsed. My back has been acting up - I don't know if this is a side effect from additional stress or the result of so many walks back and forth from the parking garage to the hospital room and back. I am trying to remember to eat responsibly. I made hummus this weekend and have been living on it. And tangerines. And cheese and crackers. And bagels. So not bad I guess. All the food groups covered.
Today I will be the cat's caregiver and take him to the vet (which just overjoys him to no end and he will hate me when we get home until I feed him some chicken). This will also have impact on my back. I put the carrier in the car and then carry the cat out and dump him in it. I have a few seconds where he is distracted by the fact that he is OUTSIDE and I can easily dump him in the carrier which he really, really, really hates. No I can't post pone the vet trip because it is a follow up that needs to be done in the next week or so and our vet is going off to run a marathon (isn't that healthy?) and this is her last day in the office.
After that I will take a little time for me and go for a walk with a friend and discuss all sorts of life important issues such as her wedding plans and grandchildren, gardening issues for the seasons, and the importance of going out for sushi regularly.
I will get back to see Walter by mid afternoon and will stay there for a bit. Yesterday we played scrabble twice and now have the assumption that if he is on medication (morphine) his scrabble skills are very good. He beat me once and lost by 5 points the second game yesterday. Today will be a rematch. And we will go for the obligatory walks as well.
Actually he is doing much better. He got jello and other liquid diet substances yesterday. He might get more food today. Still no toast or anything solid but he is asking for Starbucks coffee.
Meanwhile, I need to be less worn out by the end of the day. I come home and collapse. I haven't done dishes in days but then I haven't been here to eat much. I have several loads of laundry that are waiting for me. And the living room is a tad messy. Maybe some housecleaning this morning. I think I need to rest a little more first.
But its exhausting. The last three nights I have come home and basically collapsed. My back has been acting up - I don't know if this is a side effect from additional stress or the result of so many walks back and forth from the parking garage to the hospital room and back. I am trying to remember to eat responsibly. I made hummus this weekend and have been living on it. And tangerines. And cheese and crackers. And bagels. So not bad I guess. All the food groups covered.
Today I will be the cat's caregiver and take him to the vet (which just overjoys him to no end and he will hate me when we get home until I feed him some chicken). This will also have impact on my back. I put the carrier in the car and then carry the cat out and dump him in it. I have a few seconds where he is distracted by the fact that he is OUTSIDE and I can easily dump him in the carrier which he really, really, really hates. No I can't post pone the vet trip because it is a follow up that needs to be done in the next week or so and our vet is going off to run a marathon (isn't that healthy?) and this is her last day in the office.
After that I will take a little time for me and go for a walk with a friend and discuss all sorts of life important issues such as her wedding plans and grandchildren, gardening issues for the seasons, and the importance of going out for sushi regularly.
I will get back to see Walter by mid afternoon and will stay there for a bit. Yesterday we played scrabble twice and now have the assumption that if he is on medication (morphine) his scrabble skills are very good. He beat me once and lost by 5 points the second game yesterday. Today will be a rematch. And we will go for the obligatory walks as well.
Actually he is doing much better. He got jello and other liquid diet substances yesterday. He might get more food today. Still no toast or anything solid but he is asking for Starbucks coffee.
Meanwhile, I need to be less worn out by the end of the day. I come home and collapse. I haven't done dishes in days but then I haven't been here to eat much. I have several loads of laundry that are waiting for me. And the living room is a tad messy. Maybe some housecleaning this morning. I think I need to rest a little more first.
Monday, January 11, 2010
On being the caregiver
This is me in the unlikely role of caregiver. Well, not unlikely, but more unfamiliar. I am used to being the patient in the hospital waiting for visitors. Yesterday I was trying to count up the number of hospitalizations for me (1981, 1986, 1997, 2005 (twice), and 2007 (twice)) - and I could be wrong here but I think I have it right. 1981 for thyroidectomy, 1986 and 1997 for ovarian cysts, 2005 for abdominal infection and hysterectomy and 2007 for low blood counts during chemo and axillary node dissection. There may be more but its early and I'm too lazy to get up and look at my medical history.
As the patient you sit there, sometimes alert and bored and sometimes dozing and bored, waiting for people to show up, a better book to read, or something better to come on TV. As you start to feel better, boredom leads to crankiness and inner evil twin appearing regularly. Then every time you fall asleep someone shows up to take blood, check your vitals, or make your breathe into the stupid little lung clearing thing that is just plain annoying but slightly better than nasal oxygen tubes. You also get to whine about hospital food - its pretty blah but edible in general, but never quite hot enough by the time it arrives from the kitchen many floors below.
As a caregiver, you try to fit in as many visits and bring amusing things - like the daily newspaper - and ask questions about how the patient is feeling. You try to see if there is anything you can do for the patient but most if it needs to be left for the professionals. You get to do things like take them for walks, rearrange the stuff in their room so they can reach what they want, and ask questions.
This is the weird part. I am not used to this. I am used to being the one stuck in the hospital bed, not feeling so great. But it turns out this was a learning experience. I know I can nag about using the stupid little lung clearing thingie. I know walks are important and make sure he gets them - once we got clearance from the nurses. I know I can't help him get in and out of bed at this point - a nurse is required to make sure the IV, drain, and catheter don't pull or get squished and end up on the right side of the bed. I also know you aren't supposed to grit your teeth through pain and bear it. I tell the nurses when this happens so they can help.
I also try to fit in as many visits as I can. Boredom turns patients into really crabby patients. I am working part time so I am trying to fit in two visits a day. Yesterday we played scrabble and tried to play gin rummy but couldn't remember all the rules (I'll print them out today and bring them in). We also fit in four walks which might have been a few too many. Today I think I will visit late morning and then early evening. We will go for walks and play more cards. I'll bring the newspaper as well. Today is a big step to try some jello this morning and maybe some toast this afternoon. Then he can start whining about hospital food as well.
But that is the limit to what I can do. I don't like seeing him in pain or uncomfortable. I have to leave that to the nurses to make sure he is doing as well as he can. Its just weird. I'm the professional patient. He shouldn't be.
As the patient you sit there, sometimes alert and bored and sometimes dozing and bored, waiting for people to show up, a better book to read, or something better to come on TV. As you start to feel better, boredom leads to crankiness and inner evil twin appearing regularly. Then every time you fall asleep someone shows up to take blood, check your vitals, or make your breathe into the stupid little lung clearing thing that is just plain annoying but slightly better than nasal oxygen tubes. You also get to whine about hospital food - its pretty blah but edible in general, but never quite hot enough by the time it arrives from the kitchen many floors below.
As a caregiver, you try to fit in as many visits and bring amusing things - like the daily newspaper - and ask questions about how the patient is feeling. You try to see if there is anything you can do for the patient but most if it needs to be left for the professionals. You get to do things like take them for walks, rearrange the stuff in their room so they can reach what they want, and ask questions.
This is the weird part. I am not used to this. I am used to being the one stuck in the hospital bed, not feeling so great. But it turns out this was a learning experience. I know I can nag about using the stupid little lung clearing thingie. I know walks are important and make sure he gets them - once we got clearance from the nurses. I know I can't help him get in and out of bed at this point - a nurse is required to make sure the IV, drain, and catheter don't pull or get squished and end up on the right side of the bed. I also know you aren't supposed to grit your teeth through pain and bear it. I tell the nurses when this happens so they can help.
I also try to fit in as many visits as I can. Boredom turns patients into really crabby patients. I am working part time so I am trying to fit in two visits a day. Yesterday we played scrabble and tried to play gin rummy but couldn't remember all the rules (I'll print them out today and bring them in). We also fit in four walks which might have been a few too many. Today I think I will visit late morning and then early evening. We will go for walks and play more cards. I'll bring the newspaper as well. Today is a big step to try some jello this morning and maybe some toast this afternoon. Then he can start whining about hospital food as well.
But that is the limit to what I can do. I don't like seeing him in pain or uncomfortable. I have to leave that to the nurses to make sure he is doing as well as he can. Its just weird. I'm the professional patient. He shouldn't be.
Sunday, January 10, 2010
I don't get it - is breast cancer the only socially acceptable cancer?
Color me stupid, but I don't get it. As a Facebook user (a/k/a addict) I was all confused when friends started posting their status as beige, white, blue, red and white, black, etc. I didn't understand. Then someone said that it was a breast cancer awareness thing and women were asked to post their bra color as their status. Then men started asking what this was and adding their 'comments' which were not related to color of bras but uses for bras and where they would like to find them.
Then a friend of mine on Facebook asked people to stop as she had a bilateral mastectomy and can't wear a bra because its painful. She had breast cancer and was very upset by this.
Finally on the news this morning, there is information that explains it in detail. Evidently women were also asked as the next step to visit the Komen foundation's website to learn more about breast cancer. Apparently it was started by users on FaceBook and not by the Komen foundation but it increased traffic to their website by 2000%.
What have we learned here? It was a relatively innocent idea that was not fully communicated. I never posted my bra color as I thought it was a bit ridiculous. The men who posted rude comments as a result were not raising awareness of breast cancer but more showing their insensitivity. The women with breast cancer don't always appreciate it.
Yes there are other cancers out there besides breast cancer. Is breast cancer the only socially acceptable cancer to have these days? I am someone dealing with multiple cancers - two for me and one now for my husband. What can we do for people with other cancers to raise awareness? There are about 200,000 cases of breast cancer in the US each year, about 30,000 cases of thyroid cancer, and 100,000 cases of colon cancer. There are millions of people living with cancer. Breast cancer is only one cancer. I would like to see the kind of awareness we have for breast cancer for all cancers.
Then a friend of mine on Facebook asked people to stop as she had a bilateral mastectomy and can't wear a bra because its painful. She had breast cancer and was very upset by this.
Finally on the news this morning, there is information that explains it in detail. Evidently women were also asked as the next step to visit the Komen foundation's website to learn more about breast cancer. Apparently it was started by users on FaceBook and not by the Komen foundation but it increased traffic to their website by 2000%.
What have we learned here? It was a relatively innocent idea that was not fully communicated. I never posted my bra color as I thought it was a bit ridiculous. The men who posted rude comments as a result were not raising awareness of breast cancer but more showing their insensitivity. The women with breast cancer don't always appreciate it.
Yes there are other cancers out there besides breast cancer. Is breast cancer the only socially acceptable cancer to have these days? I am someone dealing with multiple cancers - two for me and one now for my husband. What can we do for people with other cancers to raise awareness? There are about 200,000 cases of breast cancer in the US each year, about 30,000 cases of thyroid cancer, and 100,000 cases of colon cancer. There are millions of people living with cancer. Breast cancer is only one cancer. I would like to see the kind of awareness we have for breast cancer for all cancers.
Saturday, January 9, 2010
My day
Here is a summary of my day yesterday which was a tiny bit stressful:
6 am - up awake
630 am - leave for hospital
650 am - arrive hospital
650-700am - wait for Walter to check in and get sent down to surgery center
705-730am - wait for the nurses to get Walter ready for surgery
730am - Walter goes in and I freak out a tiny bit
800am - nurse returns with his belongings, tells me surgery is scheduled for 850-1150am and the doctor will call my cell when done.
830-930am - go to gym
930-1030am - play on computer, finally shower, and dress
1030am-1230pm - attempt to watch tv and read in order to waste time
1230pm wonder where phone call is
130pm wonder where phone call is
145pm call surgeon's office asking what is going on. Nurse knows nothing, doesn't understand why the doctor would call me because he has back to back surgeries scheduled. Promises to transfer me but sticks me on hold forever. I am starting to panic. Why didn't they call? Did something bad happen? What's going on?
155pm call hospital main number back and get transferred to the family waiting room where the nurse tells me that he is still in surgery (!) but she said she or the surgeon would call me in an hour or I should call her back.
242pm the phone finally rings. It is the surgeon. Everything went fine. The polyp was lower than expected so it just took longer. (5 hours of surgery, not 3). I can go visit him in an hour or so. My stress level starts to subside.
345pm I head over to see him.
4pm - am told to wait and they will see if I can see him
430 pm - I finally get to see him. He's very pale but awake and talking. I can only stay for a minute. But my stress level is much lower.
700 pm - I go back to see him and get to see him for about 2 more minutes. His color is better, he is more responsive and slowly waking up. They tell me he will be moved to a room at some point. I can call back in a couple hours to find out where.
900pm - I call back and they tell me he is spending the night in post operative care and will go to a room in the morning.
I was moderately to severely stressed yesterday. Today I am going to the gym in an effort to deflab and destress and then to see Walter and spend a few hours with him this morning I hope. I am off to a party this afternoon and then will go back and see him. I assume he will sleep much of today but I would like to bring him the flowers I got and the suitcase I keep lugging back and forth.
Overall, it looks good but we have to wait for the pathology report next week sometime.
It is weird to be on the other side of the patient/caregiver thing. I feel less in control in some ways. Its weird.
6 am - up awake
630 am - leave for hospital
650 am - arrive hospital
650-700am - wait for Walter to check in and get sent down to surgery center
705-730am - wait for the nurses to get Walter ready for surgery
730am - Walter goes in and I freak out a tiny bit
800am - nurse returns with his belongings, tells me surgery is scheduled for 850-1150am and the doctor will call my cell when done.
830-930am - go to gym
930-1030am - play on computer, finally shower, and dress
1030am-1230pm - attempt to watch tv and read in order to waste time
1230pm wonder where phone call is
130pm wonder where phone call is
145pm call surgeon's office asking what is going on. Nurse knows nothing, doesn't understand why the doctor would call me because he has back to back surgeries scheduled. Promises to transfer me but sticks me on hold forever. I am starting to panic. Why didn't they call? Did something bad happen? What's going on?
155pm call hospital main number back and get transferred to the family waiting room where the nurse tells me that he is still in surgery (!) but she said she or the surgeon would call me in an hour or I should call her back.
242pm the phone finally rings. It is the surgeon. Everything went fine. The polyp was lower than expected so it just took longer. (5 hours of surgery, not 3). I can go visit him in an hour or so. My stress level starts to subside.
345pm I head over to see him.
4pm - am told to wait and they will see if I can see him
430 pm - I finally get to see him. He's very pale but awake and talking. I can only stay for a minute. But my stress level is much lower.
700 pm - I go back to see him and get to see him for about 2 more minutes. His color is better, he is more responsive and slowly waking up. They tell me he will be moved to a room at some point. I can call back in a couple hours to find out where.
900pm - I call back and they tell me he is spending the night in post operative care and will go to a room in the morning.
I was moderately to severely stressed yesterday. Today I am going to the gym in an effort to deflab and destress and then to see Walter and spend a few hours with him this morning I hope. I am off to a party this afternoon and then will go back and see him. I assume he will sleep much of today but I would like to bring him the flowers I got and the suitcase I keep lugging back and forth.
Overall, it looks good but we have to wait for the pathology report next week sometime.
It is weird to be on the other side of the patient/caregiver thing. I feel less in control in some ways. Its weird.
Friday, January 8, 2010
Thinking positive things
I am spending the day thinking positive things. Walter is currently in surgery. I should hear in a few hours how it went and then a few hours later get to see him for a bit.
I am also thinking positive things about a friend of mine who has Inflammatory breast cancer, the most aggressive kind, and was triple negative meaning - no tamoxifen available for her who has been Stage IV for about 18 months. I learned last night she was in pain and was taken by ambulance to the hospital. Now treatment is ending and she is moving to a hospice. I hope to get into to see her at some point.
Just thinking positive.
I am also thinking positive things about a friend of mine who has Inflammatory breast cancer, the most aggressive kind, and was triple negative meaning - no tamoxifen available for her who has been Stage IV for about 18 months. I learned last night she was in pain and was taken by ambulance to the hospital. Now treatment is ending and she is moving to a hospice. I hope to get into to see her at some point.
Just thinking positive.
Thursday, January 7, 2010
Pretending life is just ducky
Today I will pretend life is just ducky. My ankle is not better so I will call the doctor and ask about that MRI. I don't know what they can do but surgery will not be part of that discussion. My cold is getting better. My back is stabilized to something I can live with provided I don't try to stand for extended periods of time, or walk, bend, stretch, or hold a position. If I avoid all that its just fine.
Today Walter is home because tomorrow is his surgery. We are optimistic that they will go in and cut out a big section of his colon and say 'well, we didn't really need to do this because we got it all in the colonoscopy' but since they have no other way other than surgery to do this, we have to go through it. We are also hopeful that they will not change his currently scheduled time for surgery of 730 am (arrival at the hospital at 6am). The only thing worse than surgery is sitting around all day unable to eat or drink anything and only able to stress about it all day long.
The cat is amazingly better. At least we have some positive news here - he has returned to his kittenish self and becomes psycho kitty and runs around the house. So one positive.
That's it. I'm not feeling very inspired today.
Today Walter is home because tomorrow is his surgery. We are optimistic that they will go in and cut out a big section of his colon and say 'well, we didn't really need to do this because we got it all in the colonoscopy' but since they have no other way other than surgery to do this, we have to go through it. We are also hopeful that they will not change his currently scheduled time for surgery of 730 am (arrival at the hospital at 6am). The only thing worse than surgery is sitting around all day unable to eat or drink anything and only able to stress about it all day long.
The cat is amazingly better. At least we have some positive news here - he has returned to his kittenish self and becomes psycho kitty and runs around the house. So one positive.
That's it. I'm not feeling very inspired today.
Wednesday, January 6, 2010
Waiting for another magic pill
I was reading again (someday I promise to stop but for now I am a closet book worm who reads all the time - except the book I promised my boss I would read) yesterday and found this article saying they need another magic pill. This one is for preventing fractures in women with osteoporosis. Since I am one of those lucky people with osteopenia, the precursor to osteoporosis, I can't wait for them to come up with this magic pill as well.
My osteopenia was diagnosed in May 2008 by my primary care physician after a bone density scan - because thyroid medications and other things are hard on bones and I have a family history. Her thought was up my dose of calcium and vitamin D for two years and then recheck my bone density before trying any treatment. My oncologist has since said that she wants to switch me to an aromatase inhibitor from Tamoxifen this spring, but AI's are hard on bones as well. I will have another bone density scan and be monitored more closely as a result.
Personally, find a magic pill that cures everything so I can stop taking so many damn pills - I have already taken two pills today and am about to take 3 more followed by a handful of vitamins in a few hours
I'm done whining - for now. Off to work for the day. Yesterday I left much later than I wanted to. Today I want to leave in about 15 minutes which is possible. Its also Walter's last day of work before surgery. Tonight we will have a special meal of beef tenderloin, yorkshire pudding, potatoes, and salad followed by Ben & Jerry's ice cream. Tomorrow he gets blah food and laxatives followed by his big adventure Friday morning. But I will worry about that then and not now and get moving to work.
My osteopenia was diagnosed in May 2008 by my primary care physician after a bone density scan - because thyroid medications and other things are hard on bones and I have a family history. Her thought was up my dose of calcium and vitamin D for two years and then recheck my bone density before trying any treatment. My oncologist has since said that she wants to switch me to an aromatase inhibitor from Tamoxifen this spring, but AI's are hard on bones as well. I will have another bone density scan and be monitored more closely as a result.
Personally, find a magic pill that cures everything so I can stop taking so many damn pills - I have already taken two pills today and am about to take 3 more followed by a handful of vitamins in a few hours
I'm done whining - for now. Off to work for the day. Yesterday I left much later than I wanted to. Today I want to leave in about 15 minutes which is possible. Its also Walter's last day of work before surgery. Tonight we will have a special meal of beef tenderloin, yorkshire pudding, potatoes, and salad followed by Ben & Jerry's ice cream. Tomorrow he gets blah food and laxatives followed by his big adventure Friday morning. But I will worry about that then and not now and get moving to work.
Tuesday, January 5, 2010
Eat better foods
So there are all kinds of recommendations on how to get healthier at this time of year. Vitamins, veggies, etc. Here's a list of five eat better foods for 2010 - the premise being you eat these and you will be healthier. But I am not sure I agree:
Grains - okay, I agree on this one. Oat, barley and rye are good. But what about quinoa? Its got protein too... I think this is an oversight.
Soy - um, no. The jury is still out on soy for women with estrogen positive breast cancer. I'll skip it. Besides, I hate tofu.
Red Wine - What? But isn't it better just to skip alcohol? They haven't decided on this one.
Salmon and other oily fish - Fish instead of red meat is good. But oily fish only? what about over fishing and farmed vs wild fish? Don't tell me salmon and other oily fish without telling me which kinds I can eat. Or should I just build a fish pond in the back yard and grow my own organic fish?
Green tea - The jury is still out on this one too. I prefer caffeine free myself but if the antioxidants in green tea are supposed to be good for you do they over come the negativity of caffeine.
Now I'm confused so here's more research. I like this article much better: Quit worrying about your health. Its more about the everything in moderation rule. But what about the cancer cooties? Can I skip worrying about them?
So enough research for the day. Yesterday I decided it was time to call the doctor on my sore throat. This is in clear violation of my personal two week rule of health maladies but I was concerned about strep and sharing germs with Walter just before his surgery. So I called my doctor's office at 830 am (when I thought they opened). They said a nurse would call me back in the next few hours so I said I am going to the gym to get some exercise. Of course, 8:46 minutes into my treadmill time they called back and said can you be here in 45 minutes? So I hopped off the treadmill and ran home, changed and got to the hospital on time. I saw a different doctor, actually someone who is married to a friend's older brother and have met a various parties. But you have had breast cancer? Any recurrence? No, then just a sore throat. She said I just have a basic viral sore throat and nothing can be done but to let it run its course. Blah, blah, blah. Nice to see you again.
While I was there I found out my doctors office now opens at 8 am... A very useful piece of information to know.
Today I actually feel a little better and am keeping my regular schedule. Work, gym, sushi for dinner. My sore throat makes me sound raspy but I don't feel that bad.
Grains - okay, I agree on this one. Oat, barley and rye are good. But what about quinoa? Its got protein too... I think this is an oversight.
Soy - um, no. The jury is still out on soy for women with estrogen positive breast cancer. I'll skip it. Besides, I hate tofu.
Red Wine - What? But isn't it better just to skip alcohol? They haven't decided on this one.
Salmon and other oily fish - Fish instead of red meat is good. But oily fish only? what about over fishing and farmed vs wild fish? Don't tell me salmon and other oily fish without telling me which kinds I can eat. Or should I just build a fish pond in the back yard and grow my own organic fish?
Green tea - The jury is still out on this one too. I prefer caffeine free myself but if the antioxidants in green tea are supposed to be good for you do they over come the negativity of caffeine.
Now I'm confused so here's more research. I like this article much better: Quit worrying about your health. Its more about the everything in moderation rule. But what about the cancer cooties? Can I skip worrying about them?
So enough research for the day. Yesterday I decided it was time to call the doctor on my sore throat. This is in clear violation of my personal two week rule of health maladies but I was concerned about strep and sharing germs with Walter just before his surgery. So I called my doctor's office at 830 am (when I thought they opened). They said a nurse would call me back in the next few hours so I said I am going to the gym to get some exercise. Of course, 8:46 minutes into my treadmill time they called back and said can you be here in 45 minutes? So I hopped off the treadmill and ran home, changed and got to the hospital on time. I saw a different doctor, actually someone who is married to a friend's older brother and have met a various parties. But you have had breast cancer? Any recurrence? No, then just a sore throat. She said I just have a basic viral sore throat and nothing can be done but to let it run its course. Blah, blah, blah. Nice to see you again.
While I was there I found out my doctors office now opens at 8 am... A very useful piece of information to know.
Today I actually feel a little better and am keeping my regular schedule. Work, gym, sushi for dinner. My sore throat makes me sound raspy but I don't feel that bad.
Monday, January 4, 2010
step by step to a healthier life
Doesn't that title sound nice a corny? If you act step by step you will become healthier. There was an article about making your toddler healthier, or little steps to a healthier you. These steps are things like: eat vegetables, eat less meat, exercise, don't smoke, don't or reduce alcohol, wear your seatbelt, blah, blah, blah.
So here's my frustration. We eat vegetables. We eat vegetables to the point that my husband teases me that I can't prepare things without vegetables. I must put vegetables in everything. And have a salad every night before dinner. We have reduced our meat in take (but my husband hasn't noticed) by reducing portion size and eating vegetarian meals sometimes. I exercise. Okay. I admit that my exercise habits took a beating when I sprained my ankle but I am now back to 5 days a week except when holidays or something else mess up my schedule. I quit smoking years ago. We drink alcohol less too. Just try drinking when you have four different medications that say 'don't drink alcohol'. It becomes pretty easy to cut way down. I wear my seat belt.
So if I do all this crap, why is my body in the state that it is in? I should be healthy, climbing mountains, skiing, sailing, etc. Not hobbling around in pain, popping pills and doing PT exercises. No I am not a junkie or anything but I have all sorts of lovely pills to take to keep me going.
Now about that weight loss thing too. I eat breakfast every day (or I get crabby and my stomach gets upset from my medications). I eat healthy things. We don't have chips or ice cream or cookies or candy or anything like that in our house. We don't cover things in butter or oil. Our food is low fat. But then there are all these medications that say 'may cause weight gain' well thank you very much. The doctor says lose some weight (actually at this point they don't really nag much) and then prescribe medicine that causes weight gain.
Step by step to a frustrated but healthier life??? Maybe thats more like it.
So here's my frustration. We eat vegetables. We eat vegetables to the point that my husband teases me that I can't prepare things without vegetables. I must put vegetables in everything. And have a salad every night before dinner. We have reduced our meat in take (but my husband hasn't noticed) by reducing portion size and eating vegetarian meals sometimes. I exercise. Okay. I admit that my exercise habits took a beating when I sprained my ankle but I am now back to 5 days a week except when holidays or something else mess up my schedule. I quit smoking years ago. We drink alcohol less too. Just try drinking when you have four different medications that say 'don't drink alcohol'. It becomes pretty easy to cut way down. I wear my seat belt.
So if I do all this crap, why is my body in the state that it is in? I should be healthy, climbing mountains, skiing, sailing, etc. Not hobbling around in pain, popping pills and doing PT exercises. No I am not a junkie or anything but I have all sorts of lovely pills to take to keep me going.
Now about that weight loss thing too. I eat breakfast every day (or I get crabby and my stomach gets upset from my medications). I eat healthy things. We don't have chips or ice cream or cookies or candy or anything like that in our house. We don't cover things in butter or oil. Our food is low fat. But then there are all these medications that say 'may cause weight gain' well thank you very much. The doctor says lose some weight (actually at this point they don't really nag much) and then prescribe medicine that causes weight gain.
Step by step to a frustrated but healthier life??? Maybe thats more like it.
Sunday, January 3, 2010
Starting a new year
There is a little poll on CNN.com asking if people are optimistic about 2010 and the vast majority (73%) are. But is this simply because human nature causes us to be optimists? I dont know. I am hoping for a nice, peachy keen, rosy, sun filled, healthy 2010 but I am not getting my hopes up too high.
I spent all of 2009 in pain and visiting doctors, which was sort of a repeat of 2008 and the second half of 2007. Right now the only things that hurt are my back and my ankle and my sore throat (which is my latest ailment that I am determined to ignore unless it is still sore tomorrow morning where I will call the doctor) and my knee that I landed on when I fell. I am still working on the premise that if you ignore things they go away.
2010 is the year where I will lose that pesky 20 lbs I keep muttering about but so far I have not yet had any exercise in the new year. I did not go for a walk or to the gym on Friday because I was recovering from my little fall. Yesterday it was snowing. Today its snowing and I have my sore throat to consider. However it is supposed to stop snowing tonight and I will definitely get some exercise tomorrow. Sitting on one's butt does not promote weight loss.
But Happy New Year to us. This week will be busy for both. Walter took last week off and is only working Monday - Wednesday this week. Friday is surgery and Thursday is surgery prep. I am sure we will both be a tiny bit stressed (and crabby) as a result. Once we get that pathology report that tells us the whole story, we will have a better idea of what 2010 will bring.
I spent all of 2009 in pain and visiting doctors, which was sort of a repeat of 2008 and the second half of 2007. Right now the only things that hurt are my back and my ankle and my sore throat (which is my latest ailment that I am determined to ignore unless it is still sore tomorrow morning where I will call the doctor) and my knee that I landed on when I fell. I am still working on the premise that if you ignore things they go away.
2010 is the year where I will lose that pesky 20 lbs I keep muttering about but so far I have not yet had any exercise in the new year. I did not go for a walk or to the gym on Friday because I was recovering from my little fall. Yesterday it was snowing. Today its snowing and I have my sore throat to consider. However it is supposed to stop snowing tonight and I will definitely get some exercise tomorrow. Sitting on one's butt does not promote weight loss.
But Happy New Year to us. This week will be busy for both. Walter took last week off and is only working Monday - Wednesday this week. Friday is surgery and Thursday is surgery prep. I am sure we will both be a tiny bit stressed (and crabby) as a result. Once we get that pathology report that tells us the whole story, we will have a better idea of what 2010 will bring.
Saturday, January 2, 2010
News flash: TENS doesn't work on lower back pain
I know I tried it. But apparently its just making the news now. Actually the physical therapist had me try it but said that not every one benefits from it. I didn't. Another thing that didn't work. I am hoping for the miracle cure.
However today my back is somewhat better than yesterday. I didn't do anything yesterday. Well, I went to Toys R Us to return the wrong lego I bought for my nephew and get him a new one and out to dinner with my family. Later I played boggle and scrabble against my brother. Who won. Rematch tonight.
But today its snowing so I may opt for an indoor existence again where its warm and dry.
However today my back is somewhat better than yesterday. I didn't do anything yesterday. Well, I went to Toys R Us to return the wrong lego I bought for my nephew and get him a new one and out to dinner with my family. Later I played boggle and scrabble against my brother. Who won. Rematch tonight.
But today its snowing so I may opt for an indoor existence again where its warm and dry.
Friday, January 1, 2010
Its all a bunch of numbers
59 is the number of doctor appointments in 2090. In 2008, I think I had 70 something so the number is reduced but if you think that 2008 also included radiation trips, it is actually going in the wrong direction.
2 is the number of minutes that I missed New Years by last night. My back hurt a lot yesterday because I fell in the snow and I was in my pjs at 4 pm and asleep by 7. Then my husband came up at 12:02 and woke me while getting into bed so I missed watching the ball drop.
20 is the number of pounds I want to lose this year.
But it is all numbers which I can easily ignore this morning. It is 2010 and here's some optimism for a healthy year because I'm due for one.
2 is the number of minutes that I missed New Years by last night. My back hurt a lot yesterday because I fell in the snow and I was in my pjs at 4 pm and asleep by 7. Then my husband came up at 12:02 and woke me while getting into bed so I missed watching the ball drop.
20 is the number of pounds I want to lose this year.
But it is all numbers which I can easily ignore this morning. It is 2010 and here's some optimism for a healthy year because I'm due for one.
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