Julia, what an important and valuable post! Beth’s journey illustrates the importance of self advocacy. 11 ya my wife exhibited signs of breast cancer in a follow up diagnostic mammogram. Her mother had died that same spring of bladder cancer, so she struggled to make sense of what to do. I was her advocate and immediately requested the results from the mammogram: lobular carcinoma in situ with atypical ductal hyperplasia. She was immediately referred to a thoracic surgeon! Without having seen a cancer specialist. When we met with the surgeon I immediately stated we’d not seen a cancer specialist so why were we here? As she stammered over her words I stated we were leaving.
Next, the cancer Dx specialist. We were seated in her office and when she entered a bit later she screamed at Beth, “You have cancer. You should have addressed this already. You’re gonna die!” Of course Beth was in tears. I asked if she could explain the difference between cancer markers and actual tumors? Blank stare. At that point I indicated we would be leaving, but asked, “Do you read the NYT?” “Yes, why?” was her reply. I asked if she had read the front page article summarizing the findings of the bi-annual meeting of cancer specialists from all over the US. Their conclusion was simply stated, “We over diagnose and over treat ‘cancer’ at an alarming rate.” Her arrogant reply was, “If it had been there I would have seen it!” I replied, “Look again.” Looking at Beth I said, “We’re leaving now.”
We found the doctor we were looking for nearly 200 miles away. At the first appointment we were greeted with a kind smile, he hugged Beth, then proceeded to say, “This is very early stage cancer so we’re in no hurry to take immediate action. We will work as a team and together determine the course of action that is best for you. I classify these biopsy results as an ‘indolent lesion’.” Beth opted for a bi-lateral mastectomy with harvesting of the sentinel node plus one upstream from it. I became her home health care support in every capacity, including seeing signs of infection after the reconstruction/implants. I took several photos and sent same to the reconstructive surgeon then immediately drove to see the doctor the same day. The implant was removed & replaced two days after the initial debreeding and restitching steps.
This instance of two Beths having the same message shows the importance of self advocacy. If that’s difficult for some instances, please find a strong willed advocate to enlist as an advocate by proxy. Question the “specialists” and seek at least one other doctor’s opinion. Find and develop a support network. Crying is a great release of tension and worry. Don’t feel reluctant!
Julia, sorry to have gone on so long. Knowledge is power. Thanks for your championing tough causes and leading by example.
Hi Gary, first of all, I'm glad the prognosis for your wife was good and I am wishing you both good health for years to come.
What your wife went through with that nasty oncologist is something I can relate to. One oncologist I saw kept telling me I would die. I left the appointment sobbing. Luckily, I found a wonderful oncologist, who was humane and treated me like a member of his family, not only a patient. I had chemotherapy, radiation, and several surgeries -- and he treated me with respect for the 23 years I was his patient. He recently retired, but I will always remember his kindness and competence.
I love Beth's medical self advocacy and believe we should all be like her. Ten years ago I fired 9 gynecologists who all suggested a hysterectomy for my gigantic fibroids. I listened to myself and insisted on keeping my uterus. Finally, after 5 years I found a stellar surgeon who did a wonderful job removing my fibroids and keeping my uterus. During those five years, I trained like a professional ballet dancer and ate the best diet for my body type. My recovery was swift and I came back strong. This was a lesson in trusting my own body's ability to heal while doing the work to facilitate the healing.
I appreciate your reminder for your readers to take responsibility for our own health!
Lily, good for you! I am so glad things worked out for you, and your medical self-advocacy was key and I love that you were able to make medical decisions. I'm so glad you found a wonderful surgeon, and I'm sure the athletic training helped you with your health and recovery.
Julie, I am so inspired by both of your stories! Beth's statements about firing the wrong doctors stood out for me. I'm about to advocate for getting a medication I need that my doctor has been hesitant to prescribe because it's compounded. It's commonly used for mast cell disorders, so she shouldn't have a problem, but she just doesn't have enough training in this area—most doctors don't. I can't fire my specialist in this case because there isn't another where I live to replace her. Wishing me luck with my advocacy.
Sandra, keep being the squeaky wheel. Persistence can pay off. For doctors I couldn't fire, I kept telling them my needs over and over again and pushing for what I needed. Good luck getting the medication.
I agree with all you say. I also used to agree with people saying get three quotes from different builders for getting work done. I couldn’t get three quotes and it’s very hard here in New Zealand to find a doctor, any doctor. So I’m going to take your advice and train so I don’t need one.
I'd love to be able to train so I don't need one, but for my body that's impossible. New Zealand is so small and the population so tiny that choices are hard. I totally get it. Training will surely limit what you have to deal with especially if you eat carefully. With NZ ice cream (JAFFA!!!) that is hard to accomplish.
Training is a good idea to try and achieve good health. However, finding a doctor is important, too. Hoping you are able to find one even though I know it's so difficult. Hugs.
I LOVED your post. I left a comment. Thank you for providing such useful information. You are spot-on when you discuss medical ageism. In my case, I experienced it because I was "too young" for breast cancer in my 30s. Thanks to my perseverence, they finally took me seriously. That, and the malignant tumor in my breast.
Very inspirational, Julia. In one of your pieces, I’d love to hear how someone who ONLY walked and occasionally (when near a pool) swims and now HAS to do the recommended PT motivates herself. In theory, it’s a no-brainer because I got West Nile disease that affected the Mylin in my left leg and “training” is the only way to get it back. But in reality I struggle. The pain of West Nile is gone replaced by sore muscles which want me to stop exercising! I’ve been told to think of post exercise pain in a different light but it’s difficult
Thanks Melinda. I wouldn't want to address something I neither understand nor that I have experience with, and so far I've not seen comments or a story that is similar. That said I promise that if I do I will most assuredly put something together. I'm limited by what I've experienced and by what I find in others, and this is a new one for me. Since I can't offer anything that smacks of medical advice, I'm limited. That said, I agree with Beth. Every one of us has to find our own way back to a body that gets work, and responds to the invitation. We're going to be sore, most likely, and the challenge so often is to move past that soreness. I have no idea if that's going to happen for your particular body but I believe it's worth the effort.
Melinda, I'm so sorry that you suffer from the effects of this horrible disease. It's hard when one wants to exercise, but it's a physical struggle to exercise. All I can say is be gentle with yourself emotionally. Also, have you tried gentle yoga? There might be other activities you can do. Sending you gentle hugs.
Thanks. Yes gentle yoga sounds good. Although I never stuck with it , I know yoga well and am doing poses to stretch between isometrics and other crunch movement!
Wonderful piece! Beth is a sweetheart and I admire her so much! You’ve wrapped her…and your experiences …into the most important message of all…advocate and be active! COPD was a shock to me… but “because you’re active, Joan, you’ll be fine. Keep up the good work”… something to they affect. I intend to continue all my exercise classes and pickleball, it’s what I love; now it’s what I need to keep breathing! Thanks for this, Beth and Julia! I need this reassurance to keep going! 🥰🫶🙌
Awww, Joan, thank you for your sweet words! I admire you, as well. Medical conditions are no fun, but all we can do is continue to take care of ourselves the best way we know how. A diagnosis doesn't mean that all is over. Good for you for being active! Keep on keeping on.
Thank you, Julia, for sharing my and others' stories regularly in your publication. I appreciate your highlighting my struggles and how I prepared for daunting medical events. There is way too much suffering at the hands of the medical system. Anything we patients can do to put us more at an advantage is a good thing.
The ONLY thing this article states is that two friends of mine eat a carnivore diet. Nothing more, nothing less. It works for them. If you Google what's written about similar diets you'll likely see every kind of inane claim about its magical properties, but then if you also read Maria Cross' nutritional work you'll find her underscoring the importance of eating red meat. If you read "Lies I Taught In Medical School," you'll find plenty of research-based information about the value of a carnivore diet. But nothing in this or any of the rest of m writing would make that claim, Frances, not only do I not have the credentials, my intention was only to state that this is what Jim and his wife are doing. It apparently works for many, doesn't work for everyone, and like every other "diet" if we approach a way of eating as a diet we miss the boat. It's the lifestyle that needs to shift so that we are doing better for our bodies.
Thanks for responding. I think when you name a diet & follow that with a statement that you “know” their mindful eating helped, then you do actually endorse said specific diet (which may or may not have “worked for them”: they may have done well despite their chosen diet, we’ll never know). You’re quite right both in that overall lifestyle matters more than any specific pattern of eating and that the internet is full of inane claims. Nutritional research is notoriously difficult to do well and for every study demonstrating the importance of red meat you’ll find several more demonstrating the benefits of plant-based diets. As usual the truth is likely somewhere in between.
Full disclosure I’m a physician with an interest in metabolic health and nutrition, though not in the US. So far I’m pleased to report that what I was taught in medical school, though limited, was never, actually, “lies”.
I get your points and I have a real problem with your statements, Frances. Since I know both of these people, I do indeed know that their choice of dietary change and habits made a huge difference. @Jim the Geek does his research, he tracks his numbers, and he has committed himself in his later years to watching how diet affects his wife and his health. So while you say it may or may not have worked for them, it did. Just as tweaking my diet recently brought some key numbers down, such as my BUN and my uric acid and others.
So yes we DO know that changing their diet worked.
To say that “they might have done well despite their chosen diet” disregards considerable research about how diet affects health. It also disregards the amount of work both Jim and I have put into improving and tweaking diet. I dumped 85 lbs thirty six years ago and have kept it off. I stay on top of my numbers and tweak accordingly. Personally I’m not on a carnivore diet; it’s not right for my body. But apparently it does work for many. NIH is still doing plenty of research around this.
Kindly do not read into my work what isn’t there. You can interpret however you like. But I did not state nor imply that I endorse carnivore. There are eight billion people on this planet and eight billion different ways to ingest food. Many of us are horrifically sick, obese, and riddled with metabolic illness. The books I read, one of which I recommended to you, address those metabolic issues. For some, carnivore helps. That doesn’t mean I think it’s for all of us.
Julia, I have been touched by Beth's wisdom, kindness and creativity many times and I'm so glad that you featured her story here. It's a story of inspiration, wisdom and determination, for sure, but it's also about birthing art from the kind of mud that creates a Lotus.
And your own story about challenge, suffering and survival and how you learned to advocate for yourself is one that all woman could take to heart. I appreciate you and your writing so much. Sending big hugs.
Awww, thank you Stephanie! I love your publication and find your words soothing, kind, gentle, and inspirational. I am so glad our paths crossed. I appreciate your saying I have wisdom. Oftentimes, the older I get, the less I know! LOL
Julia, what an important and valuable post! Beth’s journey illustrates the importance of self advocacy. 11 ya my wife exhibited signs of breast cancer in a follow up diagnostic mammogram. Her mother had died that same spring of bladder cancer, so she struggled to make sense of what to do. I was her advocate and immediately requested the results from the mammogram: lobular carcinoma in situ with atypical ductal hyperplasia. She was immediately referred to a thoracic surgeon! Without having seen a cancer specialist. When we met with the surgeon I immediately stated we’d not seen a cancer specialist so why were we here? As she stammered over her words I stated we were leaving.
Next, the cancer Dx specialist. We were seated in her office and when she entered a bit later she screamed at Beth, “You have cancer. You should have addressed this already. You’re gonna die!” Of course Beth was in tears. I asked if she could explain the difference between cancer markers and actual tumors? Blank stare. At that point I indicated we would be leaving, but asked, “Do you read the NYT?” “Yes, why?” was her reply. I asked if she had read the front page article summarizing the findings of the bi-annual meeting of cancer specialists from all over the US. Their conclusion was simply stated, “We over diagnose and over treat ‘cancer’ at an alarming rate.” Her arrogant reply was, “If it had been there I would have seen it!” I replied, “Look again.” Looking at Beth I said, “We’re leaving now.”
We found the doctor we were looking for nearly 200 miles away. At the first appointment we were greeted with a kind smile, he hugged Beth, then proceeded to say, “This is very early stage cancer so we’re in no hurry to take immediate action. We will work as a team and together determine the course of action that is best for you. I classify these biopsy results as an ‘indolent lesion’.” Beth opted for a bi-lateral mastectomy with harvesting of the sentinel node plus one upstream from it. I became her home health care support in every capacity, including seeing signs of infection after the reconstruction/implants. I took several photos and sent same to the reconstructive surgeon then immediately drove to see the doctor the same day. The implant was removed & replaced two days after the initial debreeding and restitching steps.
This instance of two Beths having the same message shows the importance of self advocacy. If that’s difficult for some instances, please find a strong willed advocate to enlist as an advocate by proxy. Question the “specialists” and seek at least one other doctor’s opinion. Find and develop a support network. Crying is a great release of tension and worry. Don’t feel reluctant!
Julia, sorry to have gone on so long. Knowledge is power. Thanks for your championing tough causes and leading by example.
I'd like to repost this, Gary. Let me know if that's all right.
You have my permission, Julia. Thanks for asking.
Good stuff, I read your response twice. I wish there was a Love button in addition to the Like button.
Hi Gary, first of all, I'm glad the prognosis for your wife was good and I am wishing you both good health for years to come.
What your wife went through with that nasty oncologist is something I can relate to. One oncologist I saw kept telling me I would die. I left the appointment sobbing. Luckily, I found a wonderful oncologist, who was humane and treated me like a member of his family, not only a patient. I had chemotherapy, radiation, and several surgeries -- and he treated me with respect for the 23 years I was his patient. He recently retired, but I will always remember his kindness and competence.
I love Beth's medical self advocacy and believe we should all be like her. Ten years ago I fired 9 gynecologists who all suggested a hysterectomy for my gigantic fibroids. I listened to myself and insisted on keeping my uterus. Finally, after 5 years I found a stellar surgeon who did a wonderful job removing my fibroids and keeping my uterus. During those five years, I trained like a professional ballet dancer and ate the best diet for my body type. My recovery was swift and I came back strong. This was a lesson in trusting my own body's ability to heal while doing the work to facilitate the healing.
I appreciate your reminder for your readers to take responsibility for our own health!
Great story and no surprise coming from you! You are a warrior!
Many thanks, Julia!
Lily, good for you! I am so glad things worked out for you, and your medical self-advocacy was key and I love that you were able to make medical decisions. I'm so glad you found a wonderful surgeon, and I'm sure the athletic training helped you with your health and recovery.
Thank you, Beth! Wishing you good health and vitality!
Julie, I am so inspired by both of your stories! Beth's statements about firing the wrong doctors stood out for me. I'm about to advocate for getting a medication I need that my doctor has been hesitant to prescribe because it's compounded. It's commonly used for mast cell disorders, so she shouldn't have a problem, but she just doesn't have enough training in this area—most doctors don't. I can't fire my specialist in this case because there isn't another where I live to replace her. Wishing me luck with my advocacy.
Those distant cheers you hear are ours.
Sandra, keep being the squeaky wheel. Persistence can pay off. For doctors I couldn't fire, I kept telling them my needs over and over again and pushing for what I needed. Good luck getting the medication.
Beth, Thanks for the encouragement!
I agree with all you say. I also used to agree with people saying get three quotes from different builders for getting work done. I couldn’t get three quotes and it’s very hard here in New Zealand to find a doctor, any doctor. So I’m going to take your advice and train so I don’t need one.
I'd love to be able to train so I don't need one, but for my body that's impossible. New Zealand is so small and the population so tiny that choices are hard. I totally get it. Training will surely limit what you have to deal with especially if you eat carefully. With NZ ice cream (JAFFA!!!) that is hard to accomplish.
Training is a good idea to try and achieve good health. However, finding a doctor is important, too. Hoping you are able to find one even though I know it's so difficult. Hugs.
Thank you for this. I couldn’t agree more. Trusting our own bodies to heal is wild. Stay wild.
Truth, Michelle! We need to follow our gut instincts.
Yes!
Great article. I could tell you stories...
But perhaps more useful is my essay on dealing systematically with MDs.
https://stellafosse.com/3-steps-to-push-back-on-medical-ageism/
Hi Stella,
I LOVED your post. I left a comment. Thank you for providing such useful information. You are spot-on when you discuss medical ageism. In my case, I experienced it because I was "too young" for breast cancer in my 30s. Thanks to my perseverence, they finally took me seriously. That, and the malignant tumor in my breast.
Very inspirational, Julia. In one of your pieces, I’d love to hear how someone who ONLY walked and occasionally (when near a pool) swims and now HAS to do the recommended PT motivates herself. In theory, it’s a no-brainer because I got West Nile disease that affected the Mylin in my left leg and “training” is the only way to get it back. But in reality I struggle. The pain of West Nile is gone replaced by sore muscles which want me to stop exercising! I’ve been told to think of post exercise pain in a different light but it’s difficult
Thanks Melinda. I wouldn't want to address something I neither understand nor that I have experience with, and so far I've not seen comments or a story that is similar. That said I promise that if I do I will most assuredly put something together. I'm limited by what I've experienced and by what I find in others, and this is a new one for me. Since I can't offer anything that smacks of medical advice, I'm limited. That said, I agree with Beth. Every one of us has to find our own way back to a body that gets work, and responds to the invitation. We're going to be sore, most likely, and the challenge so often is to move past that soreness. I have no idea if that's going to happen for your particular body but I believe it's worth the effort.
Melinda, I'm so sorry that you suffer from the effects of this horrible disease. It's hard when one wants to exercise, but it's a physical struggle to exercise. All I can say is be gentle with yourself emotionally. Also, have you tried gentle yoga? There might be other activities you can do. Sending you gentle hugs.
Thanks. Yes gentle yoga sounds good. Although I never stuck with it , I know yoga well and am doing poses to stretch between isometrics and other crunch movement!
Wonderful piece! Beth is a sweetheart and I admire her so much! You’ve wrapped her…and your experiences …into the most important message of all…advocate and be active! COPD was a shock to me… but “because you’re active, Joan, you’ll be fine. Keep up the good work”… something to they affect. I intend to continue all my exercise classes and pickleball, it’s what I love; now it’s what I need to keep breathing! Thanks for this, Beth and Julia! I need this reassurance to keep going! 🥰🫶🙌
Thanks so much Joan. Other people's stories support me too!
Awww, Joan, thank you for your sweet words! I admire you, as well. Medical conditions are no fun, but all we can do is continue to take care of ourselves the best way we know how. A diagnosis doesn't mean that all is over. Good for you for being active! Keep on keeping on.
Thank you, Julia, for sharing my and others' stories regularly in your publication. I appreciate your highlighting my struggles and how I prepared for daunting medical events. There is way too much suffering at the hands of the medical system. Anything we patients can do to put us more at an advantage is a good thing.
You are so welcome and I’m pleased it was okay that I shared it. You’re an inspiration to so many.
Thank you! You are also an inspiration to many, including me!
Did you mean to imply that a carnivore diet is a therapeutic one?
The ONLY thing this article states is that two friends of mine eat a carnivore diet. Nothing more, nothing less. It works for them. If you Google what's written about similar diets you'll likely see every kind of inane claim about its magical properties, but then if you also read Maria Cross' nutritional work you'll find her underscoring the importance of eating red meat. If you read "Lies I Taught In Medical School," you'll find plenty of research-based information about the value of a carnivore diet. But nothing in this or any of the rest of m writing would make that claim, Frances, not only do I not have the credentials, my intention was only to state that this is what Jim and his wife are doing. It apparently works for many, doesn't work for everyone, and like every other "diet" if we approach a way of eating as a diet we miss the boat. It's the lifestyle that needs to shift so that we are doing better for our bodies.
Thanks for responding. I think when you name a diet & follow that with a statement that you “know” their mindful eating helped, then you do actually endorse said specific diet (which may or may not have “worked for them”: they may have done well despite their chosen diet, we’ll never know). You’re quite right both in that overall lifestyle matters more than any specific pattern of eating and that the internet is full of inane claims. Nutritional research is notoriously difficult to do well and for every study demonstrating the importance of red meat you’ll find several more demonstrating the benefits of plant-based diets. As usual the truth is likely somewhere in between.
Full disclosure I’m a physician with an interest in metabolic health and nutrition, though not in the US. So far I’m pleased to report that what I was taught in medical school, though limited, was never, actually, “lies”.
I get your points and I have a real problem with your statements, Frances. Since I know both of these people, I do indeed know that their choice of dietary change and habits made a huge difference. @Jim the Geek does his research, he tracks his numbers, and he has committed himself in his later years to watching how diet affects his wife and his health. So while you say it may or may not have worked for them, it did. Just as tweaking my diet recently brought some key numbers down, such as my BUN and my uric acid and others.
So yes we DO know that changing their diet worked.
To say that “they might have done well despite their chosen diet” disregards considerable research about how diet affects health. It also disregards the amount of work both Jim and I have put into improving and tweaking diet. I dumped 85 lbs thirty six years ago and have kept it off. I stay on top of my numbers and tweak accordingly. Personally I’m not on a carnivore diet; it’s not right for my body. But apparently it does work for many. NIH is still doing plenty of research around this.
Kindly do not read into my work what isn’t there. You can interpret however you like. But I did not state nor imply that I endorse carnivore. There are eight billion people on this planet and eight billion different ways to ingest food. Many of us are horrifically sick, obese, and riddled with metabolic illness. The books I read, one of which I recommended to you, address those metabolic issues. For some, carnivore helps. That doesn’t mean I think it’s for all of us.
I wish you the best.
What a brilliant read. Thank you. 🌳
thank you Lila.
Julia, I have been touched by Beth's wisdom, kindness and creativity many times and I'm so glad that you featured her story here. It's a story of inspiration, wisdom and determination, for sure, but it's also about birthing art from the kind of mud that creates a Lotus.
And your own story about challenge, suffering and survival and how you learned to advocate for yourself is one that all woman could take to heart. I appreciate you and your writing so much. Sending big hugs.
Awww, thank you Stephanie! I love your publication and find your words soothing, kind, gentle, and inspirational. I am so glad our paths crossed. I appreciate your saying I have wisdom. Oftentimes, the older I get, the less I know! LOL
Beth I'm so glad that I get to be in your orbit. Sending loving hugs.
The feeling is mutual 🙂