My Story, as of January 2018
I have quite a few new readers of this blog, so I thought I would make an entry with a summary of my story to date.
I was diagnosed at age 50 with Stage IV breast cancer. Stage IV means that it has moved from the spot of origin to other organs. Mine is in my left lung. It's not lung cancer; it's breast cancer in my lung. I had the misconception that I would have chemo, maybe radiation, maybe surgery, then get back to normal. Boy, was I wrong. I had seven rounds of chemo, the last one of which put me in the hospital for about four days. That's when my oncologist and my surgeon made the decision that surgery was the best option at that point. My first CT scan after surgery showed No Evidence of Active Disease. This means that whatever they can see in my lung, they're not sure what it is. It could be scar tissue, it could be cancer, it could be really anything. So, I have CT scans once every three months to monitor. They can not say that I am cancer free. They'll never be able to say that. The cancer is there, just laying dormant at the moment.
My current course of treatment, to keep the cancer at bay, is as follows: Every three weeks, I have infusions (medicine administered via IV) of Herceptin and Perjeta. If you're interested, you can find out more out these medications and what they do here: Herceptin; Perjeta. I also take an oral medication daily, Tamoxifen. These medications cause a myriad of side effects. You may have seen me use a walker, a cane, or a wheelchair. Perjeta is causing balance issues. I lose my balance very easily. I also tire quickly, thanks to Tamoxifen. Herceptin is known to cause heart problems, which is why I have echocardiograms once every three months. There are other side effects that I deal with, but some things I think you don't want to know about. 😏
Cancer affects more than just the body. Look through the archives here and read the "The Cost of Cancer" entry. It's not just a monetary cost. Cancer takes a toll ... on the person who has it, and the people who are close to that person.
You may think I'm being morbid, or insensitive, or [insert your word of choice here], saying it like this, but I think it best to be honest. The truth is, I will always have cancer. I will be in treatment for the rest of my life. This is not something I will "bounce back from". My condition will continue to deteriorate; it will not get better. My oncologist has me on the best treatment plan for my type of breast cancer. Yes, there is more than one. There are three receptors that they look at. Mine are all positive. Knowing if the receptors are positive or negative helps the oncologist decide on an appropriate treatment plan.
This all might be a bit much to digest all at one time. I've have almost three years to learn about it, and learn to deal with it. Please, if you have any questions, ask. I am open about my illness. With my openness, I hope to spread real cancer awareness, not the "pink ribbon; cancer exists" awareness. With this blog, I hope to help you to understand what it's like to live with a terminal illness, to help you to be a better caregiver to your loved one with cancer, or any illness for that matter.
A very important thing I've learned through all of this: everybody has something they are dealing with that we may know nothing about. Be kind, always.
I was diagnosed at age 50 with Stage IV breast cancer. Stage IV means that it has moved from the spot of origin to other organs. Mine is in my left lung. It's not lung cancer; it's breast cancer in my lung. I had the misconception that I would have chemo, maybe radiation, maybe surgery, then get back to normal. Boy, was I wrong. I had seven rounds of chemo, the last one of which put me in the hospital for about four days. That's when my oncologist and my surgeon made the decision that surgery was the best option at that point. My first CT scan after surgery showed No Evidence of Active Disease. This means that whatever they can see in my lung, they're not sure what it is. It could be scar tissue, it could be cancer, it could be really anything. So, I have CT scans once every three months to monitor. They can not say that I am cancer free. They'll never be able to say that. The cancer is there, just laying dormant at the moment.
My current course of treatment, to keep the cancer at bay, is as follows: Every three weeks, I have infusions (medicine administered via IV) of Herceptin and Perjeta. If you're interested, you can find out more out these medications and what they do here: Herceptin; Perjeta. I also take an oral medication daily, Tamoxifen. These medications cause a myriad of side effects. You may have seen me use a walker, a cane, or a wheelchair. Perjeta is causing balance issues. I lose my balance very easily. I also tire quickly, thanks to Tamoxifen. Herceptin is known to cause heart problems, which is why I have echocardiograms once every three months. There are other side effects that I deal with, but some things I think you don't want to know about. 😏
Cancer affects more than just the body. Look through the archives here and read the "The Cost of Cancer" entry. It's not just a monetary cost. Cancer takes a toll ... on the person who has it, and the people who are close to that person.
A little more about Stage IV cancer:
Stage IV is also known as metastatic, is also known as terminal. To be blunt, it will kill me. Please don't respond to that statement with "but you could walk outside and be hit by a bus...." Yes, that is true, but chances are greater that cancer, or complications from cancer, will kill me. To go with the bus analogy, the bus has already hit me ... it's now dragging me down the street, hitting every bump it can."But you look so good!"
"I thought you were done with treatment."
"I thought you beat cancer."
No, I'll never beat cancer. It's not a fight I can win. But when I die, please don't say that I "lost my battle" against cancer. It's not a fair fight, and saying I lost the battle implies that I had a choice in the fight. I have a team of doctors on my side, but eventually the treatment options will run out ... and I will die. The median life span of a metastatic breast cancer patient is three years. I was diagnosed in March of 2015, and we don't know how long I had it before I was diagnosed. You do the math.You may think I'm being morbid, or insensitive, or [insert your word of choice here], saying it like this, but I think it best to be honest. The truth is, I will always have cancer. I will be in treatment for the rest of my life. This is not something I will "bounce back from". My condition will continue to deteriorate; it will not get better. My oncologist has me on the best treatment plan for my type of breast cancer. Yes, there is more than one. There are three receptors that they look at. Mine are all positive. Knowing if the receptors are positive or negative helps the oncologist decide on an appropriate treatment plan.
This all might be a bit much to digest all at one time. I've have almost three years to learn about it, and learn to deal with it. Please, if you have any questions, ask. I am open about my illness. With my openness, I hope to spread real cancer awareness, not the "pink ribbon; cancer exists" awareness. With this blog, I hope to help you to understand what it's like to live with a terminal illness, to help you to be a better caregiver to your loved one with cancer, or any illness for that matter.
A very important thing I've learned through all of this: everybody has something they are dealing with that we may know nothing about. Be kind, always.
The bus has already hit me and is dragging me down the street over every bump....never thought of it that way and it made me chuckle! I was diagnosed with Stage IV breast cancer in September 2015 so I can relate to so much of this! I love the post of eveything from start to finish. What a hard journey this is that we are on. Thanks for helping to educate!
ReplyDelete