I have been feeling so guilty about complaining about feeling so bad. After all, my orignal chemo was so much worse!
Then it dawned on me, last time around I was really sick for about 4 days every other week, and I could count down the treatments. In fact I often likened it to being pregnant - it is a long time not to feel well, but the end results is wonderful.
This time my chemo doesn't make me feel as sick as last time, but I aways feel bad. I may feel some better the day before and after chemo, but then it starts all over. And - it is on going, and going and going. It will go until it stops working, then I just move to something else. I may get lucky and get to go on an oral medication but from previous experience, I know that those cause just as much pain and fatigue - sometimes more.
My husband looks at me and feel so bad for me - he really wants to make me feel better but can't. I don't know how to make it ok for him - I guess I can't, so I feel guilty about that. Then there is my grandson - he's 4 and so cute. He and Timmy usually live with us and I pick him up from preschool and watch him till dad gets home. Timmy is really good about taking care of him and Gage does spend sometime with his mom and other g'mother. Right now he is not with us but will be back with in a month. I feel so much less stress knowing that I don't have to take care of him. I really don't know why, he isn't a problem and it is only for about 5 hours. More guilt
Now the guilt is really setting in. I shouldn't complain - after all I am still alive, not in immediate danger of dying, and not having the uncontrollably pain I witnessed while working for Hospice. Nor am I alone in all of this - I don't have small children I am leaving behind. Guilt, human emotion, human nature, my constant companion.
Monday, February 25, 2008
Saturday, February 23, 2008
More on Health Care
My last post talked a lot about my situation - this isn't about me!
No matter what your view on the war is, I think that every American would agree, with out question, that the men & women that protect our freedoms should receive the best health care this country has to offer - free. You know, like our men and women in Washington, I hear that can be a very hazardous - you might trip getting on the elevator.
A single person has to make less than $500 a month to get medicare. I don't know where others live, but here in NC you can't rent a small apartment for under $600 or $700 a month. So if you make say $1000 or even $1500/month, can you really afford to pay insurance premiums, especially if you have children . Speaking of NC, our mim. wage just went from $5.15/hour to about $6.15/hour. Hummmmmmm 6.15x40 = $248/week
We have been conditioned through out the generations to take care of our own, to pull up our boot straps, to be strong and proud. That is all well and fine, the problem is that along the way we have also come to believe that those that can't "take care of their own" are weak, lazy, uneducated, unmotivated - they are "THOSE PEOPLE" and they deserve what comes their way. How totally humiliating to need asst., to have to ask for help. I have to fight these feelings constantly. People just don't realize that all of us are "those people", just one serious illness or job loss away.
Totally off topic - but why am paying $3.09 for gas and Exxon made over $40 billion last year,
why are any of us ?
No matter what your view on the war is, I think that every American would agree, with out question, that the men & women that protect our freedoms should receive the best health care this country has to offer - free. You know, like our men and women in Washington, I hear that can be a very hazardous - you might trip getting on the elevator.
A single person has to make less than $500 a month to get medicare. I don't know where others live, but here in NC you can't rent a small apartment for under $600 or $700 a month. So if you make say $1000 or even $1500/month, can you really afford to pay insurance premiums, especially if you have children . Speaking of NC, our mim. wage just went from $5.15/hour to about $6.15/hour. Hummmmmmm 6.15x40 = $248/week
We have been conditioned through out the generations to take care of our own, to pull up our boot straps, to be strong and proud. That is all well and fine, the problem is that along the way we have also come to believe that those that can't "take care of their own" are weak, lazy, uneducated, unmotivated - they are "THOSE PEOPLE" and they deserve what comes their way. How totally humiliating to need asst., to have to ask for help. I have to fight these feelings constantly. People just don't realize that all of us are "those people", just one serious illness or job loss away.
Totally off topic - but why am paying $3.09 for gas and Exxon made over $40 billion last year,
why are any of us ?
Friday, February 22, 2008
Political or Human Rights Issue
Another Friday, another chemo treatment. Actually I got two treatments today - Abaxrane & Avastin. I got there at noon, hour & half later my labs are back - but there is a problem. I had too much protein in my urine so they have to call the Dr. Now this is where the fact that I don't have insurance really causes problems. You see, I have to get my treatment somewhere other than my Dr's. office, like most folks. Instead , I have to go to the out patient dept. of my local hospital. It really isn't a bad place and I like the nurses better, but when a problem arises it is really hard to get in touch with a Dr. It took two hours to get in touch with someone and it wasn't even my Doc. Each of my treatments takes 30" - I didn't leave there until 5:45 pm. At least I am off next week. To clarify - I do have medicare and it pays 20% of most things, but just one of my drugs is $15,000.00 every other week !
But the real issue is the state of health care in this`country. Like I said - where I get my treatments is not a bad place. It always takes about an hour longer and much longer if there is a problem. But my real issue is that I have been told I can't go over here, I have to go over there. I feel that I have a right to the exact same care as anyone else regardless of ability to pay. I belong to a list for stageIV Breast Cancer, and health care is an on going topic. Unfourtunately many people don't want to talk about it for fear of ridicule from the few people on the list that can't understand how we could not have insurance.
But I feel that we are the ones that can change the rules about health care, we are the ones going through this nightmare, we are the ones that are constantly worried about whether or not our insurance is going to pay for the next new med, or if they will stop paying for meds that are working. How many times have I read a question from the list that went something like this.....My spouse got a great job offer, but it would cause a change of insurance, or we would have to move to another state - would my medicaid lapse and for how long. How many of us have had long periods of time, because of chemo or disease process, that we just felt terrible. But we still had to make countless phone calls, send out endless email, or sit in long lines at a medicare office trying to figure out how to live for another month or two. Not only did we not feel good, most likely our brains could not comprehend or effectively sort it all out. All of this while some of us work, others have children, and some of us work and have children.We have to share our stories, we have to talk about them to everyone that will listen .
We, the patients, give a face and soul to the cold hard facts of health care in this country. Most people are only concerned with how much their premiums & co-payment will go up, as they should be - and they complain about it. But until they (or a loved one) have to make a choice between food and drugs, living or sending their kids to college, or feeling that they are holding their spouse back from the future they always wanted, they can't possibly understand what it is really like.I have heard from several on this list that my/our poor planning has left us in this situation. Somehow we have been lazy about finding ways to get coverage. But let's get real - how many of us ever thought that we would be in this situation, how many of us thought we had planned for everything, how many of us are wealthy enough not to have to worry about it.Please don't let this issue fade from your mind, please don't feel so embarrassed that you can't bring yourself to share your story.And if that isn't enough to convince you to shout to the world, then think about this. How much will health insurance cost our children and grandchildren.
But the real issue is the state of health care in this`country. Like I said - where I get my treatments is not a bad place. It always takes about an hour longer and much longer if there is a problem. But my real issue is that I have been told I can't go over here, I have to go over there. I feel that I have a right to the exact same care as anyone else regardless of ability to pay. I belong to a list for stageIV Breast Cancer, and health care is an on going topic. Unfourtunately many people don't want to talk about it for fear of ridicule from the few people on the list that can't understand how we could not have insurance.
But I feel that we are the ones that can change the rules about health care, we are the ones going through this nightmare, we are the ones that are constantly worried about whether or not our insurance is going to pay for the next new med, or if they will stop paying for meds that are working. How many times have I read a question from the list that went something like this.....My spouse got a great job offer, but it would cause a change of insurance, or we would have to move to another state - would my medicaid lapse and for how long. How many of us have had long periods of time, because of chemo or disease process, that we just felt terrible. But we still had to make countless phone calls, send out endless email, or sit in long lines at a medicare office trying to figure out how to live for another month or two. Not only did we not feel good, most likely our brains could not comprehend or effectively sort it all out. All of this while some of us work, others have children, and some of us work and have children.We have to share our stories, we have to talk about them to everyone that will listen .
We, the patients, give a face and soul to the cold hard facts of health care in this country. Most people are only concerned with how much their premiums & co-payment will go up, as they should be - and they complain about it. But until they (or a loved one) have to make a choice between food and drugs, living or sending their kids to college, or feeling that they are holding their spouse back from the future they always wanted, they can't possibly understand what it is really like.I have heard from several on this list that my/our poor planning has left us in this situation. Somehow we have been lazy about finding ways to get coverage. But let's get real - how many of us ever thought that we would be in this situation, how many of us thought we had planned for everything, how many of us are wealthy enough not to have to worry about it.Please don't let this issue fade from your mind, please don't feel so embarrassed that you can't bring yourself to share your story.And if that isn't enough to convince you to shout to the world, then think about this. How much will health insurance cost our children and grandchildren.
Thursday, February 21, 2008
A new journey and where it all began
I have been trying to leave a record of my journey with breast cancer, in fact, I have left bits and pieces of it in many places. Some of it hand written, in different journals, some on the computer, just here and there. I hope with this blog to bring it all back together, gathering all of my thoughts together in one place.
In the fall of 02 I was laying in bed one night and felt a very definite small eggs shaped lump. I knew right then that I had breast cancer. I saw Dr. Jackson the next day, he also felt it, sent me for a mammogram - which came back “ nothing found”. I knew they were wrong, I tried to get them to feel it, but the Dr. wouldn’t touch me. Because it was such an obvious abnormality I should have been sent to a surgeon for a consult. I didn't have insurance so my Dr. decided that it was probably nothing.
A few weeks later Chris(my girlfriend) and I were going somewhere, anyhow - we were almost arguing about the state of health care in this country. I all of a sudden became teary eyed and told her that I would die from breast cancer because I did not have ins. There was an instant moment of complete silence, Chris and I looked at each other, didn’t say a word, but heard the truth in what I had just said - we didn't talk about it again for over a year.
The next year after minor car accident, I suddenly felt very odd so Tim took me to the hospital. My blood pressure was 196/140, they didn't treat it - again, I had no insurance, just told me to see Dr. Jackson ASAP. I Saw him the next day - a Monday. It had been about a year since I had seen him and that visit was for the lump in my breast. By now it was bigger than my fist. Again I had a mammogram, again it did not show anything and I was sent away - no consult, no nothing.
A day or 2 later Alice(another friend) was here helping me get ready for a show(my husband and I traveled to high end gift shows to sale Soap Du Jour. We were watching TV as we wrapped bars of soap and the news ran a story about the latest findings about the effectiveness of mammogram. The jest of it - Mammograms are not an effective dx. tool in women that are premenopausal and /or have fibrocystic breast disease. I looked at Alice and said something like “ This isn’t making me feel very good since I am both."
New Year’s eve I got a call form the Breast Screening Clinic at Baptist Hospital - said they had made a mistake and they needed me to come back in so they could recheck me. Of course they now did a bx. They said that the mammogram showed a 2mm tumor, that’s about an inch, much smaller than the fist sized tumor that I and my Dr. could feel - that is how poorly mammograms to for premenopausal and/ or fibrocystic breast disease.
For two weeks I waited in a constant state of high anxiety - I really didn't care that I had Breast Cancer - I just wanted to get to the next step. Finely, one day at the shop, the phone rang and it was Dr. Jackson.............the bx was negative! Alice was there, she was so happy to hear the news. She was hugging me and saying all the things people say to you under those circumstances. All the time Alice was hugging me, the only thought that went through my mind was " Don't get excited - this is far from over". You can't express that emotion to someone - they just don't understand how you can be anything but relieved, grateful, and happy. I played the part as well as I could and tried to sort things out in my on mind.
I was finally scheduled to see a surgeon, although it wasn't cancerous, they told me it was a fast growing benign growth that need to be removed. In two weeks I would see the
Breast Specialist and be scheduled for surgery to remove this - what ever it is.
When I was a child , a teenage and even a very young adult I wanted to be sick - I needed to be sick. That’s the only way I could get love and attention - at least that is what I witnessed with my mother. And when I was older, that is what all the medical shows on TV showed. Oh to have someone care as much as Dr. Gannon or Welby. I later realized that illness was a means to get what I wanted, it also meant that I didn’t have to be responsible for anything - I could just blame it on being sick, not feeling well - I had been taught well. As an adult I have had to fight tooth and nail to not be that little girl - it is so easy to fall back into old patterns of behavior.
Ever since I felt the first lump my intuition has always been that I would die from breast cancer. Now as I wait for the results form the pathology reports from the 5mm x 7mm x 3mm tumor that was removed, everything seems so chaotic. I couldn’t sort my intuitive feelings from my emotional feelings. I found myself going back and forth between no cancer, to not dying from cancer, and back to my original intuition that I will indeed die from this. Sometimes it is hard to know where defense mechanisms starts/ends and truth begins.
Last night I had my first dream about it, it was one of those dreams, the kind that is meant solely to give me info. All I got was the radiologist saying “ well, I’m a little more concerned now that I was” and another Dr. explaining the cell differentiation to me.Two weeks later ( something about a 2 weeks waiting period) all the reports were in - Stage IIIB, high grade, progesterone +, estrogen -, poorly differentiated. Prognosis - moderate to poor.
Now that is 2004 to present day all rolled into a few paragraphs. I wish I had started this in the very beginning, it would much easier to record my true emotions at the onset. But, I guess I will start from today.
In the fall of 02 I was laying in bed one night and felt a very definite small eggs shaped lump. I knew right then that I had breast cancer. I saw Dr. Jackson the next day, he also felt it, sent me for a mammogram - which came back “ nothing found”. I knew they were wrong, I tried to get them to feel it, but the Dr. wouldn’t touch me. Because it was such an obvious abnormality I should have been sent to a surgeon for a consult. I didn't have insurance so my Dr. decided that it was probably nothing.
A few weeks later Chris(my girlfriend) and I were going somewhere, anyhow - we were almost arguing about the state of health care in this country. I all of a sudden became teary eyed and told her that I would die from breast cancer because I did not have ins. There was an instant moment of complete silence, Chris and I looked at each other, didn’t say a word, but heard the truth in what I had just said - we didn't talk about it again for over a year.
The next year after minor car accident, I suddenly felt very odd so Tim took me to the hospital. My blood pressure was 196/140, they didn't treat it - again, I had no insurance, just told me to see Dr. Jackson ASAP. I Saw him the next day - a Monday. It had been about a year since I had seen him and that visit was for the lump in my breast. By now it was bigger than my fist. Again I had a mammogram, again it did not show anything and I was sent away - no consult, no nothing.
A day or 2 later Alice(another friend) was here helping me get ready for a show(my husband and I traveled to high end gift shows to sale Soap Du Jour. We were watching TV as we wrapped bars of soap and the news ran a story about the latest findings about the effectiveness of mammogram. The jest of it - Mammograms are not an effective dx. tool in women that are premenopausal and /or have fibrocystic breast disease. I looked at Alice and said something like “ This isn’t making me feel very good since I am both."
New Year’s eve I got a call form the Breast Screening Clinic at Baptist Hospital - said they had made a mistake and they needed me to come back in so they could recheck me. Of course they now did a bx. They said that the mammogram showed a 2mm tumor, that’s about an inch, much smaller than the fist sized tumor that I and my Dr. could feel - that is how poorly mammograms to for premenopausal and/ or fibrocystic breast disease.
For two weeks I waited in a constant state of high anxiety - I really didn't care that I had Breast Cancer - I just wanted to get to the next step. Finely, one day at the shop, the phone rang and it was Dr. Jackson.............the bx was negative! Alice was there, she was so happy to hear the news. She was hugging me and saying all the things people say to you under those circumstances. All the time Alice was hugging me, the only thought that went through my mind was " Don't get excited - this is far from over". You can't express that emotion to someone - they just don't understand how you can be anything but relieved, grateful, and happy. I played the part as well as I could and tried to sort things out in my on mind.
I was finally scheduled to see a surgeon, although it wasn't cancerous, they told me it was a fast growing benign growth that need to be removed. In two weeks I would see the
Breast Specialist and be scheduled for surgery to remove this - what ever it is.
When I was a child , a teenage and even a very young adult I wanted to be sick - I needed to be sick. That’s the only way I could get love and attention - at least that is what I witnessed with my mother. And when I was older, that is what all the medical shows on TV showed. Oh to have someone care as much as Dr. Gannon or Welby. I later realized that illness was a means to get what I wanted, it also meant that I didn’t have to be responsible for anything - I could just blame it on being sick, not feeling well - I had been taught well. As an adult I have had to fight tooth and nail to not be that little girl - it is so easy to fall back into old patterns of behavior.
Ever since I felt the first lump my intuition has always been that I would die from breast cancer. Now as I wait for the results form the pathology reports from the 5mm x 7mm x 3mm tumor that was removed, everything seems so chaotic. I couldn’t sort my intuitive feelings from my emotional feelings. I found myself going back and forth between no cancer, to not dying from cancer, and back to my original intuition that I will indeed die from this. Sometimes it is hard to know where defense mechanisms starts/ends and truth begins.
Last night I had my first dream about it, it was one of those dreams, the kind that is meant solely to give me info. All I got was the radiologist saying “ well, I’m a little more concerned now that I was” and another Dr. explaining the cell differentiation to me.Two weeks later ( something about a 2 weeks waiting period) all the reports were in - Stage IIIB, high grade, progesterone +, estrogen -, poorly differentiated. Prognosis - moderate to poor.
Now that is 2004 to present day all rolled into a few paragraphs. I wish I had started this in the very beginning, it would much easier to record my true emotions at the onset. But, I guess I will start from today.
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