Theresa: What I would like to see in your Newsletter
1. Continued personal stories about you. Your readers have come to know you intimately and to care for you, as well.
3. Continued discussion about the challenges we all face in health care. For example, the difficult in navigating our own care. Or how so many choices regarding Covid (for example, immunization in very young children) are not black and white.
Thank you so much for this helpful comment, David. I appreciate you encouraging me to branch out into other aspects of health care commentary. That is a great direction to go in. Also, thank you for encouraging me to keep telling my own story--I am glad to know it makes a difference.
Theresa, I so strongly endorse your choice to stop taking medications that were making you miserable and brought you only a negligible benefit. Too often, medical professionals think that because we can do something, we ought to, no matter the consequences. But really the correct approach is to balance risks and benefits and decide when an intervention is worth it to us.
Here’s a personal story: Between ages 13 and about 30, I used to faint, sometimes several times per day. As I’m sure you know, this is a very common problem in tall skinny teenaged girls, especially if they have slow heartbeats (mine was under 60bpm) and low blood pressure (mine was 90/40!). After two cardiac catheter studies, my cardiologist put me on Norpace, which had to be begun in the hospital because it has the rare side effect of cardiac arrest, which will appear in the first 48 hours or not at all. The whole process of getting on this drug was painful, expensive, and disruptive. Then I started taking the drug, and it gave me such a dry mouth that I could no longer sing. I decided that I would rather be able to sing even if it meant fainting a few times a day, and I refused to take the medication (it was also expensive, and I thought it was morally wrong to impose that cost on my mom’s teachers’ HMO). My doctor objected but conceded that it was my choice. Yes! It is always our choice, and we often know better than our doctors what makes sense for us!
I hope Arthur’s experience with Covid will be like mine--cold symptoms and no sense of smell for a couple of days and then totally fine--and that you don’t get it! But thanks to the vaccines and boosters, most people I know (even my parents) have an easy time of it. Hooray for the vaccines!
This is a great story. Readers won't know that Mari is a serious singer and not being able to sing, for her, is the same as me not being able to concentrate well enough to write--not something either of us could live with. I love the phrase "It is always our choice." Yes! I need to learn cross stitch so that I can put it on a sampler.
Arthur is doing OK with Covid. His main symptom has been fatigue and a mild cough, some fever and chills at the beginning. Thank goodness for the vaccines, indeed. He is slowly getting better and never had any trouble breathing.
I have been on letrozole for 13 years---ever since I finished my active treatments for inflammatory breast cancer. Not only did I have IBC (an aggressive sub-type of BC), but I also was 96% estrogen positive! So I've been committed to keeping my estrogen levels as low as possible for as long as possible.
I realize, however, that I have had an advantage. BC struck me when I was already post-menopausal, so lowering my estrogen levels even more wasn't as big a deal for me. I have joint pain, true. And as I get older, it's getting to be more of a problem.
But I'm also realizing that some of that joint pain is because my body is not happy when I eat dairy. As a long-time cheese lover, this is a problem for me! It's worth it, though, to have less joint pain (not to mention a few other symptoms I have when I consume dairy).
I have a lot of sympathy for women who were diagnosed with BC at a younger age---pre-menopausal. It must be very, very hard to do what is medically "best," because you have to weigh various "bests" and try to pick the one you'll have the fewest regrets about down the line.
This is such a helpful comment because it highlights that each patient must make her own choice based on many factors. For readers who don't know, inflammatory breast cancer tends to be very aggressive and the prognosis is often poor. If my diagnosis had been similar I imagine I would have felt differently about putting up with the side effects from Tamoxifen and Arimidex. As it is, the drugs had only a slight benefit for me. That's real, but compared with the problems they caused for me, not worth it. Each of us makes our own choice and the goal has to be the best choice for patients as individuals, weighing all factors as needed.
Theresa: What I would like to see in your Newsletter
1. Continued personal stories about you. Your readers have come to know you intimately and to care for you, as well.
3. Continued discussion about the challenges we all face in health care. For example, the difficult in navigating our own care. Or how so many choices regarding Covid (for example, immunization in very young children) are not black and white.
Thank you so much for this helpful comment, David. I appreciate you encouraging me to branch out into other aspects of health care commentary. That is a great direction to go in. Also, thank you for encouraging me to keep telling my own story--I am glad to know it makes a difference.
Theresa, I so strongly endorse your choice to stop taking medications that were making you miserable and brought you only a negligible benefit. Too often, medical professionals think that because we can do something, we ought to, no matter the consequences. But really the correct approach is to balance risks and benefits and decide when an intervention is worth it to us.
Here’s a personal story: Between ages 13 and about 30, I used to faint, sometimes several times per day. As I’m sure you know, this is a very common problem in tall skinny teenaged girls, especially if they have slow heartbeats (mine was under 60bpm) and low blood pressure (mine was 90/40!). After two cardiac catheter studies, my cardiologist put me on Norpace, which had to be begun in the hospital because it has the rare side effect of cardiac arrest, which will appear in the first 48 hours or not at all. The whole process of getting on this drug was painful, expensive, and disruptive. Then I started taking the drug, and it gave me such a dry mouth that I could no longer sing. I decided that I would rather be able to sing even if it meant fainting a few times a day, and I refused to take the medication (it was also expensive, and I thought it was morally wrong to impose that cost on my mom’s teachers’ HMO). My doctor objected but conceded that it was my choice. Yes! It is always our choice, and we often know better than our doctors what makes sense for us!
I hope Arthur’s experience with Covid will be like mine--cold symptoms and no sense of smell for a couple of days and then totally fine--and that you don’t get it! But thanks to the vaccines and boosters, most people I know (even my parents) have an easy time of it. Hooray for the vaccines!
This is a great story. Readers won't know that Mari is a serious singer and not being able to sing, for her, is the same as me not being able to concentrate well enough to write--not something either of us could live with. I love the phrase "It is always our choice." Yes! I need to learn cross stitch so that I can put it on a sampler.
Arthur is doing OK with Covid. His main symptom has been fatigue and a mild cough, some fever and chills at the beginning. Thank goodness for the vaccines, indeed. He is slowly getting better and never had any trouble breathing.
I have been on letrozole for 13 years---ever since I finished my active treatments for inflammatory breast cancer. Not only did I have IBC (an aggressive sub-type of BC), but I also was 96% estrogen positive! So I've been committed to keeping my estrogen levels as low as possible for as long as possible.
I realize, however, that I have had an advantage. BC struck me when I was already post-menopausal, so lowering my estrogen levels even more wasn't as big a deal for me. I have joint pain, true. And as I get older, it's getting to be more of a problem.
But I'm also realizing that some of that joint pain is because my body is not happy when I eat dairy. As a long-time cheese lover, this is a problem for me! It's worth it, though, to have less joint pain (not to mention a few other symptoms I have when I consume dairy).
I have a lot of sympathy for women who were diagnosed with BC at a younger age---pre-menopausal. It must be very, very hard to do what is medically "best," because you have to weigh various "bests" and try to pick the one you'll have the fewest regrets about down the line.
This is such a helpful comment because it highlights that each patient must make her own choice based on many factors. For readers who don't know, inflammatory breast cancer tends to be very aggressive and the prognosis is often poor. If my diagnosis had been similar I imagine I would have felt differently about putting up with the side effects from Tamoxifen and Arimidex. As it is, the drugs had only a slight benefit for me. That's real, but compared with the problems they caused for me, not worth it. Each of us makes our own choice and the goal has to be the best choice for patients as individuals, weighing all factors as needed.