Around and around and around she goes.....
The last time I blogged was December. It is now April. Where the hell did the time go?!?!
To say I've been dealing with a big bag of shit is an understatement. I'm going to take a big deep breathe, and then try and type out a (hopefully) concise update.....
December was a really hard month, I was in the hospital for stomach virus (everything is more dramatic when you have cancer), put my doggy down, and then went to see family for the holidays. I came back to my house ready for 2017 to start, and a new chapter to begin. On December 31st I drove to San Diego where I adopted my new doggy, Teddy. He is my little buddy and a doggy angel! I was gearing up for some transitions to be happen in my home and was really ready to attack things full speed!
January then got pretty rough, but I thought "oh I'm just tired" "It's just allergies, compounded by treatments." etc, etc, etc......
End of January I got a PETscan and it didn't exactly go as I planned. I'm beginning to understand why that old saying "You make plans and God laughs" exists....
My cancer had spread, and not just by a little bit. The belief that the small sprinkling of cancer in my left lung could dissipate in a matter of months became a mere memory. One that I wished I could return to, because the cancer spread like wildfire. Creeping into my bones, setting up camp in my spine, sneaking it's way into my brain, and finally deciding that my liver needed to join in on the fun too.
FUCK.
What do I do now?
I didn't know. I just kept moving. You truly want to believe that you are going to get sick and go to the doctor and if you do EVERYTHING they say, you'll be fine. If you behave properly, if you're nice to all the doctors and nurses then everyone will help and care. Because you have CANCER you could be dead in months. You'll take all the drugs they give you, because you're a damn fool not to. You stress yourself getting in contact with them, or wondering if you're annoying or disturbing them with your questions. Because they have the knowledge, they are THE END ALL BE ALL of health and cancer.
CANCER DOESN'T CARE
All I knew/know is my body isn't behaving the right way and I want to know why. If after all these treatments I still have cancer and I'm doing everything they told me, why?
Why doesn't the standard of care work for me? There could be SO MANY reasons. But my health was informing me things weren't right. I have been getting pituitary gland MRI's, seeing rheumatologists, endocrinologists, integrative doctors, advanced lung disease specialists, an ENT specialist, 3 different oncologists, spent COUNTLESS hours reading information, looking over old medical paperwork, asking questions about things my doctors have ignored, yelling at pharmacists, yelling at schedulers, begging, crying. I have been asking anyone to care enough to treat my body like there was a human soul living inside of it.
And I've found mostly bureaucracy and red tape. I have been scheduled for things like chemo and radiation a day apart (not supposed to happen-could cause serious damage), been made to drive out to hospitals to get shots and minor surgeries on days I should be recovering from chemotherapy because of mistakes MY DOCTORS have made, not me. It's exhausting and if I'm being 100% honest the western medicine merry go round has made me want to quit treatments more than once. And not in a "I'm so natural, I don't believe in medicine way." I'm talking quit everything and just let what is going to happen happen type of quit. Do I believe in holistic and integrative health? ONE THOUSAND PERCENT, but I believe with widespread metastatic cancer you have to do a whole lot to rid yourself of it. I don't know exactly what it is you have to do, and I promise that just because you read an article about the benefits of Spirulina, you don't either. My oncologist doesn't know for sure either. It's all educated guessing.
All I know for sure is that I can trust my intuition. I can listen to my body and it will tell me if something is wrong or not. We have gotten so far away from listening to ourselves and our own intuition, and I am thankful that I finally started listening to mine.
And it was more than intuition that told me it was time to take charge of my health. I was now the boss. I was the conductor in charge of MY train (my nephew really has a thing with trains, just go with it) I changed hospitals, oncologists, and treatment plans. Took another look at what I was doing holistically and made changes there too. On the western medicine front I was doing the standard for my "particular type of MBC" (ER+PR+HER2-) which is a Lupron shot, followed by daily pills of Letrozole and Ibrance. Two hormone blockers and a chemotherapy pill I took from the time I came out of surgery until the end of January. My oncologist said and I almost quote "this will work until it doesn't, then there will be a new one that should work by then, and we will put you on that and just keep rotating meds until they stop working."
So super easy guys, I don't know why anyone even freaks out about cancer.
Imagine my surprise when it had spread all over my body. The standard of care didn't work for me. so I switched hospital. I met my new doctor through a friend who also has MBC (the power of social media connecting us all, thank you Annie). Off to the City of Hope, full of hope I went! Back to IV chemotherapy I also went. Much to my dismay.
So far I've had 2 half rounds of Carboplatin and Gemzar. You are supposed to have two doses a round and I've only had one dose each round because my immune system wasn't happy about it. Today may be the first time I receive a second dose in a round. I don't know for sure it's working but tumor markers have dropped slightly and I feel better than I did in January. Also I got some radiation on my brain, so there's that. My next scan will tell me more and I am anxious to get to it and also just don't even want it at the same time.
There are a bajillion more details to share but like I said off to chemo I go....
My intention is to blog and share more about my journey. I believe social media can paint a picture of what a persons life looks like, but there's always more. Maybe today just take a moment and be thankful for your health, as there are so many of us struggling to get back to it. And I ask that you keep this in mind when looking at an MBC woman (or anyone really). I don't post pictures when I am vomiting or when I am crying because I can't eat anything because treatment has me too sick, we have to be strong and brave!! These days my definition of strong and brave have changed, they no longer include big strong muscles and plastering a smile on my face even when facing danger. My strength comes from allowing people to help me, allowing myself to be vulnerable and allowing people to see that. I'll try and update after chemo with how I'm feeling....
Ideas?
Subjects?
Questions?
Please ask because I get sick of my own ideas really fast! ;)
XOXO,
Jenny
To say I've been dealing with a big bag of shit is an understatement. I'm going to take a big deep breathe, and then try and type out a (hopefully) concise update.....
December was a really hard month, I was in the hospital for stomach virus (everything is more dramatic when you have cancer), put my doggy down, and then went to see family for the holidays. I came back to my house ready for 2017 to start, and a new chapter to begin. On December 31st I drove to San Diego where I adopted my new doggy, Teddy. He is my little buddy and a doggy angel! I was gearing up for some transitions to be happen in my home and was really ready to attack things full speed!
January then got pretty rough, but I thought "oh I'm just tired" "It's just allergies, compounded by treatments." etc, etc, etc......
End of January I got a PETscan and it didn't exactly go as I planned. I'm beginning to understand why that old saying "You make plans and God laughs" exists....
My cancer had spread, and not just by a little bit. The belief that the small sprinkling of cancer in my left lung could dissipate in a matter of months became a mere memory. One that I wished I could return to, because the cancer spread like wildfire. Creeping into my bones, setting up camp in my spine, sneaking it's way into my brain, and finally deciding that my liver needed to join in on the fun too.
FUCK.
What do I do now?
I didn't know. I just kept moving. You truly want to believe that you are going to get sick and go to the doctor and if you do EVERYTHING they say, you'll be fine. If you behave properly, if you're nice to all the doctors and nurses then everyone will help and care. Because you have CANCER you could be dead in months. You'll take all the drugs they give you, because you're a damn fool not to. You stress yourself getting in contact with them, or wondering if you're annoying or disturbing them with your questions. Because they have the knowledge, they are THE END ALL BE ALL of health and cancer.
CANCER DOESN'T CARE
All I knew/know is my body isn't behaving the right way and I want to know why. If after all these treatments I still have cancer and I'm doing everything they told me, why?
Why doesn't the standard of care work for me? There could be SO MANY reasons. But my health was informing me things weren't right. I have been getting pituitary gland MRI's, seeing rheumatologists, endocrinologists, integrative doctors, advanced lung disease specialists, an ENT specialist, 3 different oncologists, spent COUNTLESS hours reading information, looking over old medical paperwork, asking questions about things my doctors have ignored, yelling at pharmacists, yelling at schedulers, begging, crying. I have been asking anyone to care enough to treat my body like there was a human soul living inside of it.
And I've found mostly bureaucracy and red tape. I have been scheduled for things like chemo and radiation a day apart (not supposed to happen-could cause serious damage), been made to drive out to hospitals to get shots and minor surgeries on days I should be recovering from chemotherapy because of mistakes MY DOCTORS have made, not me. It's exhausting and if I'm being 100% honest the western medicine merry go round has made me want to quit treatments more than once. And not in a "I'm so natural, I don't believe in medicine way." I'm talking quit everything and just let what is going to happen happen type of quit. Do I believe in holistic and integrative health? ONE THOUSAND PERCENT, but I believe with widespread metastatic cancer you have to do a whole lot to rid yourself of it. I don't know exactly what it is you have to do, and I promise that just because you read an article about the benefits of Spirulina, you don't either. My oncologist doesn't know for sure either. It's all educated guessing.
All I know for sure is that I can trust my intuition. I can listen to my body and it will tell me if something is wrong or not. We have gotten so far away from listening to ourselves and our own intuition, and I am thankful that I finally started listening to mine.
And it was more than intuition that told me it was time to take charge of my health. I was now the boss. I was the conductor in charge of MY train (my nephew really has a thing with trains, just go with it) I changed hospitals, oncologists, and treatment plans. Took another look at what I was doing holistically and made changes there too. On the western medicine front I was doing the standard for my "particular type of MBC" (ER+PR+HER2-) which is a Lupron shot, followed by daily pills of Letrozole and Ibrance. Two hormone blockers and a chemotherapy pill I took from the time I came out of surgery until the end of January. My oncologist said and I almost quote "this will work until it doesn't, then there will be a new one that should work by then, and we will put you on that and just keep rotating meds until they stop working."
So super easy guys, I don't know why anyone even freaks out about cancer.
Imagine my surprise when it had spread all over my body. The standard of care didn't work for me. so I switched hospital. I met my new doctor through a friend who also has MBC (the power of social media connecting us all, thank you Annie). Off to the City of Hope, full of hope I went! Back to IV chemotherapy I also went. Much to my dismay.
So far I've had 2 half rounds of Carboplatin and Gemzar. You are supposed to have two doses a round and I've only had one dose each round because my immune system wasn't happy about it. Today may be the first time I receive a second dose in a round. I don't know for sure it's working but tumor markers have dropped slightly and I feel better than I did in January. Also I got some radiation on my brain, so there's that. My next scan will tell me more and I am anxious to get to it and also just don't even want it at the same time.
There are a bajillion more details to share but like I said off to chemo I go....
My intention is to blog and share more about my journey. I believe social media can paint a picture of what a persons life looks like, but there's always more. Maybe today just take a moment and be thankful for your health, as there are so many of us struggling to get back to it. And I ask that you keep this in mind when looking at an MBC woman (or anyone really). I don't post pictures when I am vomiting or when I am crying because I can't eat anything because treatment has me too sick, we have to be strong and brave!! These days my definition of strong and brave have changed, they no longer include big strong muscles and plastering a smile on my face even when facing danger. My strength comes from allowing people to help me, allowing myself to be vulnerable and allowing people to see that. I'll try and update after chemo with how I'm feeling....
Ideas?
Subjects?
Questions?
Please ask because I get sick of my own ideas really fast! ;)
XOXO,
Jenny
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