Last week I returned from a ten-day trip to the East Coast. I spent a few days in Philadelphia attending the LBBC Metastatic Breast Cancer Conference (More about that later.) and then my 16-year-old daughter flew out to spend a week in New York City. I did this trip last year with my 13-year-old son and really looked forward to repeating it with my daughter.
Unfortunately, I am not the same woman I was last year. I was sick the entire time I was on the east coast and it was so much harder for me to get around. I don't have the same level of energy I used to have and going up and down those stairs to subway stations was very difficult at times. The difficulty wasn't in pain, but in simply not having the muscle strength I used to have.
I've been back a week and I've spent most of the week resting in bed whenever possible. I'm exhausted. Fortunately, my scans revealed that the cancer is mostly stable, with some improvement in my liver and nothing is showing up in my lungs. My bloods are fine, but I'm constantly short of breath, so we we're working on that.
In light of having a low-key week, I decided to go back in time. When I was first diagnosed in January 2012, I read everything I could about breast cancer. I read early stage material, I read metastatic material, I read conventional treatments, I read alternative approaches. I scoured every website I could find. I took a crash course in breast cancer (which is now why I advise people to not do that ... it can be quite overwhelming) and finally, at some point, I said, "Enough. I know enough for now." I went through another flurry of crash learning in 2013 when I was definitively known to be metastatic.
Last week, I decided to follow up on several of the people I remembered from that time. Being chronically fatigued means your mind doesn't work right and I was wandering through all those alternative suggestions again. In spite of my staunch support in evidence-based medicine, the idea of something as simple as diet and supplements started to grab hold of something in my brain.
"What if they are right? What if it really is that simple?"
I went back to the threads I had devoured and found that every single one of the women who only pursued alternative approaches had died. Every one. These are the women who rejected all conventional treatments ... no surgery, no chemo, no radiation ... just diet, exercise, supplements, expensive trips to Mexico to clinics ... all dead.
I had followed two women who used only medicinal marijuana and they both died. Their last posts were literally insane ... the paranoia they exhibited was so extreme that it made me scared for the friends I know who are currently using marijuana for curative purposes.
I checked in on the cancer wannabes. I've never been able to figure these women out, but there's one in the BCO forums who had cysts in 2013 who self-determined that she had breast cancer and gave out alternative advice left and right. She's still doing that. I didn't bother to read too much more of her story as it brought on too much anger (She's one who believes that those who die of this disease bring death upon themselves. Don't get me started.)
I checked on one young woman who claimed to have three cancers (not metastatic, but three different cancers ... breast, liver and intestines) and who claimed was on a waiting list for a liver transplant because her own liver had only 10% functionality. I had challenged her on that one ... and she looped her lie around to "Oh, I'm so sorry, but my doctor lied to me ... I'm not really on a list." She now claims that she only has breast cancer and that natural treatments got rid of the cancer in her liver and the cancer in her intestines.
A third woman still has me blocked, but her claim of metastatic disease was challenged because her firm declaration that she was diagnosed without ever having a biopsy (due to medical phobias) and that the doctor was going to do a bilateral mastectomy, followed by chemo, radiation and five years letrozole. Exactly what an early stage diagnosis would be recommended, not a metastatic diagnosis.
A fourth woman sucked me into making donations. I don't mind that I did so ... when I give money, I do so with the full knowledge that I may be being taken advantage of. However, this woman claimed to have metastatic disease, was stopping treatments in order to enter a clinical trial, but supposedly had a severe stroke which prevented her from entering the trial and supposedly had nurses typing for her to communicate her needs. Eighteen months later, she's still here, showing no signs of a catastrophic stroke, no signs of metastatic breast cancer and still asking people for money.
Another woman claimed to have breast cancer in both breasts (which is possible); therefore, that made her Stage IV. In her case, the claim seems to be made out of ignorance rather than deliberately trying to mislead people. She finally changed her status to Stage II. She seems to be doing okay.
The last woman was misdiagnosed Stage IV and when she finally had a liver biopsy done, she found out she didn't have metastatic disease. She swore she would never forget those six months of hell she went through and that she would always be an ally for those with advanced breast cancer, but her voice is strangely distant and silent regarding metastatic breast cancer. Her official story on her website doesn't even mention her misdiagnosis and all proceeds from events she holds goes to "awareness and education."
Last week, I checked in on women who were diagnosed with metastatic breast cancer around the same time as I had. Many of them are dead, but many of them are holding steady.
And then, I checked on women who were diagnosed metastatic after me. So many of them are gone. While it is encouraging to see so many living longer with metastatic disease, it's also so incredibly scary to see those who are living only that average 24 - 35 months.
Jody Schoger is one of those women. Diagnosed with metastatic breast cancer in spring 2013, a full 15-years AFTER her primary diagnosis, Jody made the decision to enter hospice care this week. I don't know Jody personally. She and I have never personally talked/emailed ... perhaps we've shared a comment or two on our posts, but I know who she is. She is a voice for metastatic breast cancer ... and was a voice BEFORE she had the disease herself. She helped start up the popular Monday night Twitter chat #bcsm, something that many people have benefited from.
Jody wrote, "The only ‘good’ way of coping is the way that provides you and your family with the best possible life.” As I look at all the decisions that all these women have made ... conventional, alternative, marijuana, nothing at all ... they've done just that. They've made decisions they felt were best for them. (Except for the absolute fakers. No sympathy from me for them. They are fraudsters.)
The photo of Elmo was taken in Times Square in NYC. You'd think that Elmo was looking directly at me, but he wasn't. The person inside the costume had taken the head off and twisted it to the side in order to take a break. (Gosh, how traumatic for a child to have seen that!) As soon as I saw him standing there, I couldn't help but think that Elmo was saying, "I've had enough of this."
And I have. I've had enough. I'm sick and I'm tired. I'm exhausted beyond description. I never feel rested and I never feel well.
I'm emotionally drained. Besides Jody's decision to enter hospice, a local friend is making the same decision. I know that she will die very quickly ... she won't be one of those outliers who hang around for a long period of time. I'm so unhappy on her behalf ... I know she is miserable ... and I long for her to be free, but damnit, it hurts. It hurts so much.
I want to be able to take my head of and position it to look another way. Maybe that way, I don't have to acknowledge the pain.
Unfortunately, I am not the same woman I was last year. I was sick the entire time I was on the east coast and it was so much harder for me to get around. I don't have the same level of energy I used to have and going up and down those stairs to subway stations was very difficult at times. The difficulty wasn't in pain, but in simply not having the muscle strength I used to have.
I've been back a week and I've spent most of the week resting in bed whenever possible. I'm exhausted. Fortunately, my scans revealed that the cancer is mostly stable, with some improvement in my liver and nothing is showing up in my lungs. My bloods are fine, but I'm constantly short of breath, so we we're working on that.
In light of having a low-key week, I decided to go back in time. When I was first diagnosed in January 2012, I read everything I could about breast cancer. I read early stage material, I read metastatic material, I read conventional treatments, I read alternative approaches. I scoured every website I could find. I took a crash course in breast cancer (which is now why I advise people to not do that ... it can be quite overwhelming) and finally, at some point, I said, "Enough. I know enough for now." I went through another flurry of crash learning in 2013 when I was definitively known to be metastatic.
Last week, I decided to follow up on several of the people I remembered from that time. Being chronically fatigued means your mind doesn't work right and I was wandering through all those alternative suggestions again. In spite of my staunch support in evidence-based medicine, the idea of something as simple as diet and supplements started to grab hold of something in my brain.
"What if they are right? What if it really is that simple?"
I went back to the threads I had devoured and found that every single one of the women who only pursued alternative approaches had died. Every one. These are the women who rejected all conventional treatments ... no surgery, no chemo, no radiation ... just diet, exercise, supplements, expensive trips to Mexico to clinics ... all dead.
I had followed two women who used only medicinal marijuana and they both died. Their last posts were literally insane ... the paranoia they exhibited was so extreme that it made me scared for the friends I know who are currently using marijuana for curative purposes.
I checked in on the cancer wannabes. I've never been able to figure these women out, but there's one in the BCO forums who had cysts in 2013 who self-determined that she had breast cancer and gave out alternative advice left and right. She's still doing that. I didn't bother to read too much more of her story as it brought on too much anger (She's one who believes that those who die of this disease bring death upon themselves. Don't get me started.)
I checked on one young woman who claimed to have three cancers (not metastatic, but three different cancers ... breast, liver and intestines) and who claimed was on a waiting list for a liver transplant because her own liver had only 10% functionality. I had challenged her on that one ... and she looped her lie around to "Oh, I'm so sorry, but my doctor lied to me ... I'm not really on a list." She now claims that she only has breast cancer and that natural treatments got rid of the cancer in her liver and the cancer in her intestines.
A third woman still has me blocked, but her claim of metastatic disease was challenged because her firm declaration that she was diagnosed without ever having a biopsy (due to medical phobias) and that the doctor was going to do a bilateral mastectomy, followed by chemo, radiation and five years letrozole. Exactly what an early stage diagnosis would be recommended, not a metastatic diagnosis.
A fourth woman sucked me into making donations. I don't mind that I did so ... when I give money, I do so with the full knowledge that I may be being taken advantage of. However, this woman claimed to have metastatic disease, was stopping treatments in order to enter a clinical trial, but supposedly had a severe stroke which prevented her from entering the trial and supposedly had nurses typing for her to communicate her needs. Eighteen months later, she's still here, showing no signs of a catastrophic stroke, no signs of metastatic breast cancer and still asking people for money.
Another woman claimed to have breast cancer in both breasts (which is possible); therefore, that made her Stage IV. In her case, the claim seems to be made out of ignorance rather than deliberately trying to mislead people. She finally changed her status to Stage II. She seems to be doing okay.
The last woman was misdiagnosed Stage IV and when she finally had a liver biopsy done, she found out she didn't have metastatic disease. She swore she would never forget those six months of hell she went through and that she would always be an ally for those with advanced breast cancer, but her voice is strangely distant and silent regarding metastatic breast cancer. Her official story on her website doesn't even mention her misdiagnosis and all proceeds from events she holds goes to "awareness and education."
Last week, I checked in on women who were diagnosed with metastatic breast cancer around the same time as I had. Many of them are dead, but many of them are holding steady.
And then, I checked on women who were diagnosed metastatic after me. So many of them are gone. While it is encouraging to see so many living longer with metastatic disease, it's also so incredibly scary to see those who are living only that average 24 - 35 months.
Jody Schoger is one of those women. Diagnosed with metastatic breast cancer in spring 2013, a full 15-years AFTER her primary diagnosis, Jody made the decision to enter hospice care this week. I don't know Jody personally. She and I have never personally talked/emailed ... perhaps we've shared a comment or two on our posts, but I know who she is. She is a voice for metastatic breast cancer ... and was a voice BEFORE she had the disease herself. She helped start up the popular Monday night Twitter chat #bcsm, something that many people have benefited from.
Jody wrote, "The only ‘good’ way of coping is the way that provides you and your family with the best possible life.” As I look at all the decisions that all these women have made ... conventional, alternative, marijuana, nothing at all ... they've done just that. They've made decisions they felt were best for them. (Except for the absolute fakers. No sympathy from me for them. They are fraudsters.)
The photo of Elmo was taken in Times Square in NYC. You'd think that Elmo was looking directly at me, but he wasn't. The person inside the costume had taken the head off and twisted it to the side in order to take a break. (Gosh, how traumatic for a child to have seen that!) As soon as I saw him standing there, I couldn't help but think that Elmo was saying, "I've had enough of this."
And I have. I've had enough. I'm sick and I'm tired. I'm exhausted beyond description. I never feel rested and I never feel well.
I'm emotionally drained. Besides Jody's decision to enter hospice, a local friend is making the same decision. I know that she will die very quickly ... she won't be one of those outliers who hang around for a long period of time. I'm so unhappy on her behalf ... I know she is miserable ... and I long for her to be free, but damnit, it hurts. It hurts so much.
I want to be able to take my head of and position it to look another way. Maybe that way, I don't have to acknowledge the pain.
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