Basic update about our current and upcoming results for treatment.
Showing posts with label treatment. Show all posts
Showing posts with label treatment. Show all posts
10.20.2016
7.15.2016
In All The B's
*Written somewhere over the midwest, as I flew home from NYC late last night.*
I never anticipated growing up. I mean, who does, or we would choose to wear sunscreen at age 4, and I've never seen a child apply SPF by choice. When you get this crazy diagnosis it's like living in an alternative universe; you're instantly catapulted into the raw threads of life. You're 29 and 99, all at once, wondering where your life went.
My favorite part of cancer is that there's people whom I've fallen in love with. They're kind, they're gracious, they're real, and explosively smart. They're honest, we quip, tease, and I can't believe that somehow my life collided with theirs. I know that I would have crossed paths with other people in my sliding doors life, and they would have been deep, and knowing, encompassing, challenging, hilarious, so I know you don't have to be a cancer patient, or caregiver, to be "enlightened" - yuck, I don't even like that word in the context. I'm swirled with people of all backgrounds, different histories, and the longer I live, the happier I am - if that's possible. Who would pick cancer? Not me. And I'm not convinced that I needed to get cancer to meet these souls. We could have met when we were in a shared taxi, at a resort, on a hiking trail, in a public bathroom. I mean, come on, you guys know me - a person is just a friend I haven't met yet.
I'm expected to do another brain surgery in Oct, and that was put off from May. I kinda want to point out what a bad girl I am, but it's not that simple. I needed proof to make sure that when they saw into my skull again, for the 4th time, it's necessary. I now know 7 different patients who had brain surgeries for recurrence, and it was in fact necrosis, inflammation, or slowly growing scar tissue. Crazy!! No spank you. (Granted, over the past several years, I've probably talked to hundreds of patients and caregivers - so it's not exactly common.)
I should have already gone under the knife, and I know from experience that I should be panicked; I could have already lost my crap. But you know what, we will die when we die. Ya, sure, duh, if you love those around you, you don't want to let go, and I don't know what has changed, why I'm chill, but who cares, all I know is that I will live my life not in fear. And more than ever, I'm not focusing on what I do not have. We are out of treatment money, yet I have never been more at peace. How weird! I'm not going to look a gift horse in the mouth. Maybe I won't even look at any horses.
I'm literally flying home from NYC as I type, no treatment rendered. A risk from international treatment issues. My point is that I was listening to a couple (just a few) survivors complaining about the fact that we did not get our most recent treatment on time. Not all, but several, were pissed because they had vacations scheduled. Weeks off. Do they not see the projects we drive by on our way to the clinic? Every time I blow through South Jamaica, Queens, on my way to and from treatment, I think about all those apartments, those high rises. Statistically, there are people in the projects that I pass and I doubt they're getting any cancer care, in fact any medical care, and when I hear those complaints I'm floored. It's not my role to teach people, to change others, but man is it eye opening. Fuck you guys, seriously, what does it take for people to realize how gifted we are? I'm not saying we can't complain about circumstances in life, but know your audience. Put things in perspective.
We are the privileged. Yes, my treatment was delayed by several days. No I wasn't able to stay or come back. Everything is a give and take.
Am I scared? Bheh. No. Yes. Sure, but not really. My fear is to leave Danny. I'm convinced that if I die before him, I'll haunt him in the bees, the butterflies, the bats, the butterscotch candy he sucks on. In the burkenstocks the person next to him is wearing. He will see me in the laminate countertop on the ferries as he heads back to our home island. In the whip of the wind against his face as he gets into his truck for work in the morning. He'll see a red summer dress and think about my silliness. Is silliness even enough to accurately describe? He'll see a goober dancing so ridiculously in the grocery store that I hope he'll dance with them to not leave them hanging.
But worse would be if he left me. That would be unbearable.
See, I have it easy. :)
A photo from my First Descents kayaking & camping trip earlier this week. No need for a filter, life is stunning as is. |
Terms:
brain surgery,
cancer,
NYC,
south Jamaica queens,
treatment
6.13.2016
Abbreviated 18f-DOPA PET Results
It's a long story, and I'm pretty pooped, but here's a basic overview. The "scan was concerning for active disease". It really isn't the biggest deal, it could have quadrupled in size. There's still questions surrounding imaging possibly being effected by treatments - not likely, but I won't rule it out, I'm always hopeful. We're trying to decide what our next step is (stopping treatment, skipping treatment, adding treatment, etc.). I'm surprisingly pleased with the results. It's not the best news. As our neurosurgeon says, "It's trending toward recurrence"(there are two "nodules" they're watching). She wanted surgery, but we asked for a little more time. I'm not ready for the risk. I'm too scared. If the area is worse in October, we will revisit our options which include the usual suspects: surgery, radiation, chemo, or a combination.
Apparently even my happy kitty socks couldn't save the day, but they made me and my TSA pat down lady happy, so there's that. Sorry that I won't be letting people know individually, but as you can imagine, it's overwhelming to reach out to all you lovely friends, I'd be on my phone for hours. I'm hoping to give a better explanation about the situation in the coming days.
Terms:
18f-DOPA PET scan,
brain cancer,
brain tumor,
chemo,
imaging,
MRI scan,
neurosurgeon,
nodule,
radiation,
recurrence,
surgery,
treatment,
TSA
8.21.2015
Germany Again? Excellent!
I'm home; I am resting after flying out to NYC for treatment (yep, what a week). I was able to get my immunotherapy shot, but was also informed that I am dangerously low on my dendritic cells (the part of the white blood cells that boost the immune system and that they use for my treatment). That means I need to head to Germany to engage in an another leukaphresis where they separate my white and red blood cells for harvest. I emailed the clinic just to verify, hoping I could squeak out a few more months before travel, but was graciously informed that it's best to head to Germany ASAP. So, although Dan took off some time for filming, and a few other random days this month, we are hoping that he can take off more time in the next couple of weeks so that he can accompany me for treatment. I kind of see it like a super sexy medical honeymoon. Because there's nothing sexier than life, am I right!?
I'm still on cloud nine from the surprise wedding, and the whirl of my awkward self, filming to share our story. A couple of people have thought I was crazy for being filmed, but I see it as an honor. Our journey has been loud (if you read the blog anyway). It has been hard, and fun, and beautiful, and unexpected, but most of all, it has been an example of following our hearts, of being strong, and true. When we were approached for filming I was hesitant for a little bit, then I thought of the good we could do by sharing what we've gone through. When you get diagnosed with cancer it's like being thrown into a burning ring of fire, and sometimes you can find a way out of the dangerous maze, and sometimes you can't. And it's terrifying. If I wouldn't have explored more than my original option of the neurosurgeon in Wenatchee ("We will put you to sleep and scoop it out."), it is probable that I'd be dead right now - because of the blood clot and dura mater hardening, not to mention the infiltrating nature of the tumor that grew fingers throughout my healthy brain. So much of my healthy brain would be missing - like the controls for my language, and the controls for my physical body. If we wouldn't have researched, and been strategic, and worked tirelessly, it's probable that I wouldn't be alive, or I would be a fraction of the woman I am now.
Why am I alive right now? Why am I not paralyzed any longer on my right side? Why can I read and write and walk and run and research, when originally I couldn't? Why have I been able to overcome so much? Because I am meant to help. I am meant to be a friend to others, to help people navigate and do their best to survive. It is not easy; it's heart breaking. I just received a text today from a brain tumor friend who just found out he is dealing with his second recurrence in less than two years. I want to fix it, but I can't. What I can do is provide solace, and information, and support, and I'm happy to do it. If only I had more power. But the power that I DO have is a voice, and I will broadcast that voice as much as I can to provide information (research, treatments, hope). This cancer life has been a gift of opening my world to amazing people. To immeasurable love and kindness, and at the same time it rips my heart in half. It's bloody and painful, and heart wrenching.
I share my story with the hope that people realize we have choices. That they listen to their hearts, to their intuitions. I hope that people see that in so many things in life we are placed in boxes, on assembly lines (be it treatments, or work, or relationships) but we also have control. That it may be hard, but we can break molds, and surprise ourselves with our own strength.
Terms:
blood clot,
brain,
cancer,
dura mater,
Germany,
leukaphresis,
neurosurgeon,
New York City,
research,
treatment,
Wenatchee
3.16.2015
Moving Up The MRI
Oh man, my face has broken out into blisters. Good grief, I am a ball of stress. This always seems to happen in the days/weeks before an MRI. Seriously, sometimes I feel like I'm a woman trapped in a neurotic miniature chihuahua's anxiety problems. Between the seizure and my skin, I am getting some major warning signs that I need to get this MRI over with. I'm scared, like usual, and no matter what I do (nap, meditate, walk, garden, clean, work) things do not seem to be getting better. Last night I was texting back and forth with my bro, and I sent him this quick pic to make him laugh (and illustrate the blisters).
What is it with skin; when you have skin problems it cuts you to the core. And hell, it isn't even necessarily the vanity, these suckers hurt. To try and abate the issue, I just called University of Washington to push up the scan schedule. I should be getting a call back within 24-48 hours to see if I can just get it over with on Saturday (it was supposed to be April 4th). That would give preliminary results on Monday. As you guys know, I get my brain scans here in Seattle, then I mail the disk to UCLA and they usually submit to the tumor board. I tend to get their results in a few weeks, but since the scan takes place at UW, I can head to the UW medical records department and get a copy of the radiology report. That would give me the results I need. Good or bad. Scary or not. I could have answers by Monday. Monday. Wow. That just made me lightheaded.
Isn't it weird how scary it is to get an MRI when the truth of the matter is that it's just a snapshot. It's a peek into whatever is already happening in my brain. The MRI won't change anything. It's only a fancy internal camera.
Do I feel any worse? Do I have special symptoms? No, not really. I'm always tired, but I think that's pretty standard since the first brain surgery. What will I do if I have a second recurrence? Jeez. I don't really know. I have a file in my email account that's labeled "possible treatments" and I'll need to review that information this coming week. Worse yet, what if all of these off labels drugs, and different treatments have encouraged a more aggressive tumor? What a nauseating thought. Well, if I do have tumor growing back, and it's uptaking contrast dye, that usually means that it would be a higher grade. And if that's the case, then eff bomb. I guess we'll scramble for a new path, or stay on the same path but pack on additional treatments.
What a weird life I live. I'm constantly in troubleshoot mode, always scheming for backup plans, always preparing for surprises so that I can be ready. I never want to walk this earth, with this diagnosis, unprepared. It's interesting, I read an article earlier today about a woman who was diagnosed with GMB (glioblastoma multiforme - stage 4 brain cancer) who went to Duke for an immunotherapy over 9 years ago. She was quoted saying that her father (or maybe it was her grandfather) beat cancer twice in his life and lived to almost a century. His trick was to go back to living life, and so that's what she did. Man that sounds nice. I wish I could do that. I wish I could get out of my head, but I can't. What a beautiful choice to make. Of course, if we all just went back to living our lives after cancer treatment, and just did what we wanted, we might not have as much research. We might not see as many advancements. If we don't drive demand and share information, and keep this momentum, then what? I guess it would work if cancer care was more effective. But the truth is that most brain cancer patients die, and if we all just went back home and enjoyed ourselves, most of us wouldn't be here.
That woman was a part of an amazing clinical trial. Lucky for her she was in the treating group, the placebo group patients are all long dead. And the majority of the others in the treating group are also dead. So maybe she just got lucky? There's always a small sample that responds to treatment, at least for a portion of time. And for the record, I don't mean "lucky" in a snarky way. I am relieved that her treatment worked. Does everyone have to become an advocate? No. That would be crazy for me to say. People have complicated lives, different stories and responsibilities. As my mom would say, "Do what speaks to you." We all have different causes that we believe in, and just because you get diagnosed with brain cancer doesn't mean that it has to become your cause. But, man we can move mountains together. What if she started spreading the word about how well her treatment worked? What if she mobilized funding to run a second clinical trial to create more survivors? Of course this is all easy for me to say, I mean, what have I really done? But the truth is that I've been using morphing cocktail approaches which means I can't pinpoint just one thing on my protocol that has produced my stability. If I could specifically credit one treatment for my success, you'd better believe I would be trying to figure out a way to get it to the masses. Instead, all I can give people is critical thinking, hope, friendship, and resources.
There is no wrong way to handle your life, your cancer. I hope I'm not coming off judge-y. I guess the perfect fix for me would be a little less cancer cancer cancer, and more just live my life. It's a balance, a very important balance (says the girl with blisters on her face), but my mantra, or more appropriately mission statement, is, "An advancement for one patient is a benefit to all patients." It's actually a statement that I made to a caregiver in an email recently. And it's exactly how I feel. Even though I'm not great about correspondence (if I was to respond to all emails, calls, texts, comments, I would be stuck on the computer or my phone all the time), I work very hard to help connect patients with the information and resources that they need. If I end up having a clean/stable MRI next week it will be just shy of five years from diagnosis. It would also be 2.5 years of being stable. Oh man as I write this I can taste the desire for a good result. I can viscerally feel it. Anyway, I have worked very hard to help people, and I will continue to do so. You all have helped me so much, and continue to help, and my gift is to give back. One of my favorite wonders is the humanity that we share. That we can do so much more together as pairs, as teams, as groups. We're better together.
What is it with skin; when you have skin problems it cuts you to the core. And hell, it isn't even necessarily the vanity, these suckers hurt. To try and abate the issue, I just called University of Washington to push up the scan schedule. I should be getting a call back within 24-48 hours to see if I can just get it over with on Saturday (it was supposed to be April 4th). That would give preliminary results on Monday. As you guys know, I get my brain scans here in Seattle, then I mail the disk to UCLA and they usually submit to the tumor board. I tend to get their results in a few weeks, but since the scan takes place at UW, I can head to the UW medical records department and get a copy of the radiology report. That would give me the results I need. Good or bad. Scary or not. I could have answers by Monday. Monday. Wow. That just made me lightheaded.
Isn't it weird how scary it is to get an MRI when the truth of the matter is that it's just a snapshot. It's a peek into whatever is already happening in my brain. The MRI won't change anything. It's only a fancy internal camera.
Do I feel any worse? Do I have special symptoms? No, not really. I'm always tired, but I think that's pretty standard since the first brain surgery. What will I do if I have a second recurrence? Jeez. I don't really know. I have a file in my email account that's labeled "possible treatments" and I'll need to review that information this coming week. Worse yet, what if all of these off labels drugs, and different treatments have encouraged a more aggressive tumor? What a nauseating thought. Well, if I do have tumor growing back, and it's uptaking contrast dye, that usually means that it would be a higher grade. And if that's the case, then eff bomb. I guess we'll scramble for a new path, or stay on the same path but pack on additional treatments.
What a weird life I live. I'm constantly in troubleshoot mode, always scheming for backup plans, always preparing for surprises so that I can be ready. I never want to walk this earth, with this diagnosis, unprepared. It's interesting, I read an article earlier today about a woman who was diagnosed with GMB (glioblastoma multiforme - stage 4 brain cancer) who went to Duke for an immunotherapy over 9 years ago. She was quoted saying that her father (or maybe it was her grandfather) beat cancer twice in his life and lived to almost a century. His trick was to go back to living life, and so that's what she did. Man that sounds nice. I wish I could do that. I wish I could get out of my head, but I can't. What a beautiful choice to make. Of course, if we all just went back to living our lives after cancer treatment, and just did what we wanted, we might not have as much research. We might not see as many advancements. If we don't drive demand and share information, and keep this momentum, then what? I guess it would work if cancer care was more effective. But the truth is that most brain cancer patients die, and if we all just went back home and enjoyed ourselves, most of us wouldn't be here.
That woman was a part of an amazing clinical trial. Lucky for her she was in the treating group, the placebo group patients are all long dead. And the majority of the others in the treating group are also dead. So maybe she just got lucky? There's always a small sample that responds to treatment, at least for a portion of time. And for the record, I don't mean "lucky" in a snarky way. I am relieved that her treatment worked. Does everyone have to become an advocate? No. That would be crazy for me to say. People have complicated lives, different stories and responsibilities. As my mom would say, "Do what speaks to you." We all have different causes that we believe in, and just because you get diagnosed with brain cancer doesn't mean that it has to become your cause. But, man we can move mountains together. What if she started spreading the word about how well her treatment worked? What if she mobilized funding to run a second clinical trial to create more survivors? Of course this is all easy for me to say, I mean, what have I really done? But the truth is that I've been using morphing cocktail approaches which means I can't pinpoint just one thing on my protocol that has produced my stability. If I could specifically credit one treatment for my success, you'd better believe I would be trying to figure out a way to get it to the masses. Instead, all I can give people is critical thinking, hope, friendship, and resources.
There is no wrong way to handle your life, your cancer. I hope I'm not coming off judge-y. I guess the perfect fix for me would be a little less cancer cancer cancer, and more just live my life. It's a balance, a very important balance (says the girl with blisters on her face), but my mantra, or more appropriately mission statement, is, "An advancement for one patient is a benefit to all patients." It's actually a statement that I made to a caregiver in an email recently. And it's exactly how I feel. Even though I'm not great about correspondence (if I was to respond to all emails, calls, texts, comments, I would be stuck on the computer or my phone all the time), I work very hard to help connect patients with the information and resources that they need. If I end up having a clean/stable MRI next week it will be just shy of five years from diagnosis. It would also be 2.5 years of being stable. Oh man as I write this I can taste the desire for a good result. I can viscerally feel it. Anyway, I have worked very hard to help people, and I will continue to do so. You all have helped me so much, and continue to help, and my gift is to give back. One of my favorite wonders is the humanity that we share. That we can do so much more together as pairs, as teams, as groups. We're better together.
Terms:
brain cancer,
DUKE,
glioblastoma multiform,
MRI,
stable,
treatment,
tumor,
UCLA,
university of washington
1.02.2015
We're Not Just Standard
I love this man, this doctor, Patrick Soon-Shiong. Granted, I don't really know anything about him other than this video, but I love what he's doing. I love his brain. I love his basic statement of question your treatment. Question the standard. Don't just do what your doctor tells you, ask questions. Double check the research. Is that a lot of work? Of course it is, but what is the price of your life? You deserve the best. You deserve to live. When you get diagnosed with cancer it's overwhelming, and exhausting, and everything happens at once, but things level out (usually), you just have to push through and give all of your energy to figuring out the best path - then maintain. It seems crazy to have to research what your doctors are recommending, but man is it worth it. Doctors often have different opinions about dosing, about treatments, about what is best. Also, in my experience, and in talking with cancer friends, they downplay short and long term side effects. Anyway, I'd better hop off my soapbox or you'll end up being turned off of the video and that would be a serious tragedy. This man is incredibly exciting. I am so grateful for private cancer businesses. Heaven forbid we have to rely on the government to save us; we all know how bogged down it is.
You guys, cancer is a multi-billion dollar industry. What we don't realize is that we're customers, that we can drive demand. We have power if we start speaking up with our pocket books. Yes there's the issue of insurance, and that makes it tricky, but this is and isn't about money. It's intrinsically intertwined, but it's more than that. We have to stand up and get off the assembly line, and analyze the big picture. If we're going to endure treatments, and everything that goes with cancer, let's make sure it's going to work. Let's make sure it's cutting edge, that it's the best. One of the worst words, one that gives me a visceral reaction, is "standard". Who ever wants to be "standard" in any area of life. I don't. Don't settle for it either. (Click the image for the video or click HERE.)
You guys, cancer is a multi-billion dollar industry. What we don't realize is that we're customers, that we can drive demand. We have power if we start speaking up with our pocket books. Yes there's the issue of insurance, and that makes it tricky, but this is and isn't about money. It's intrinsically intertwined, but it's more than that. We have to stand up and get off the assembly line, and analyze the big picture. If we're going to endure treatments, and everything that goes with cancer, let's make sure it's going to work. Let's make sure it's cutting edge, that it's the best. One of the worst words, one that gives me a visceral reaction, is "standard". Who ever wants to be "standard" in any area of life. I don't. Don't settle for it either. (Click the image for the video or click HERE.)
5.30.2014
Working With A Governor
You know what's crazy? You get diagnosed, you go through surgery, you recover, then the real test comes in living your life knowing that you have tumor cells in your brain, that the tumor (always) comes back (according to your doctors) then you start over again. Each time they dig in your brain you hope you wont die. You hope that the majority of your brain, the stuff that makes you you, will remain after they fiddle. That you won't be too damaged. You know before hand that you'll never be the same, no one ever is, but all you can do is hope that it's a minor shift. You go home, you fight, you research, you add treatments, you change your diet, you work incredibly hard. And at the same time, even though your whole life has been derailed, all of your dreams put on hold, except for a twinge of sadness here or there, you're just thrilled to be alive. You live your life revolving around scans and treatment, knowing each scan could be all it takes to devastate, that each treatment may not be enough. You battle fatigue, you battle the horror of seizures. And all the while, through it all, you're just happy to be capable of reading, and writing, and walking, and running, and laughing, and recognizing the beauty of each moment, of everything around you and most of all that you're able to fight. Cancer has a way of stopping the world from spinning. Everything happens at once, then not at all.
Tomorrow morning at 8:00 am is the MRI scan. Again they poke, jerking that needle into my vein, readying my body for the contrast dye that will tell all of my brain's dark secrets. Each MRI, each scan, is the biggest test of my life. Essentially, I live each day studying for this moment, for each exam. I remember my parents telling me when I was in my 20's, with admiration, that I was the consummate student - that it was my lifelong passion. We just never knew that I would be attending my own university, earning my own solitary degree. A degree in my body, my health, my survival. I love learning about the facets of tumors, of tumor life, how to outsmart them, to jump the hurdles. Sometimes it's scary. Sometimes it makes me viscerally ill. Regardless, I continue. My only wish is that I would have more energy, that my brain wouldn't shut down. Since the first brain surgery my body has a governor, and there is nothing I can do to change it. I work within specific boundaries that my body dictates. You guys know I fight it, pushing too hard at times. I keep hoping that just like with a muscle, all my mind needs is exercise to gain endurance. Doesn't seem to work that way though.
Sorry for the delay in my email responses, I'll probably be backed up for the next week - I'm still having to take daily naps to catch up after all that research. Please send a second email if you have an urgent question and I'll do my best to get back to you. For now, Dan's sneaking me off to hit golf balls (a close second to my favorite - the batting range) to de-stress.
As ever, but profoundly obvious, my fate is in the hands of the universe. Let's hope I've done enough to keep that parasite at bay.
Tomorrow morning at 8:00 am is the MRI scan. Again they poke, jerking that needle into my vein, readying my body for the contrast dye that will tell all of my brain's dark secrets. Each MRI, each scan, is the biggest test of my life. Essentially, I live each day studying for this moment, for each exam. I remember my parents telling me when I was in my 20's, with admiration, that I was the consummate student - that it was my lifelong passion. We just never knew that I would be attending my own university, earning my own solitary degree. A degree in my body, my health, my survival. I love learning about the facets of tumors, of tumor life, how to outsmart them, to jump the hurdles. Sometimes it's scary. Sometimes it makes me viscerally ill. Regardless, I continue. My only wish is that I would have more energy, that my brain wouldn't shut down. Since the first brain surgery my body has a governor, and there is nothing I can do to change it. I work within specific boundaries that my body dictates. You guys know I fight it, pushing too hard at times. I keep hoping that just like with a muscle, all my mind needs is exercise to gain endurance. Doesn't seem to work that way though.
Sorry for the delay in my email responses, I'll probably be backed up for the next week - I'm still having to take daily naps to catch up after all that research. Please send a second email if you have an urgent question and I'll do my best to get back to you. For now, Dan's sneaking me off to hit golf balls (a close second to my favorite - the batting range) to de-stress.
As ever, but profoundly obvious, my fate is in the hands of the universe. Let's hope I've done enough to keep that parasite at bay.
Terms:
brain fatigue,
brain tumor,
cancer,
MRI with contrast,
reading,
research,
scans,
seizures,
treatment,
writing
6.11.2012
Just The Facts
Sorry I've been MIA (I love you SoCal - I'll call soon!). Between the IVs, the homemade sulforaphane pills 6-8 times a day, researching the top experts on high dose IVs and dendritic cell therapy clinics, trying to keep up with exercise, corresponding with clinicians, and experts - like my friends who have beaten their brain cancer, etc., my head ends up spinning, and by the end of the day I fall into bed late at night, exhausted. Some days, like Thursday, I'll lose the fight with discomfort after hours of restless sleep, run to the bathroom and lose the homemade sulforaphane pills from both orifices. Yep, I know, it's disgusting, but sometimes it happens. The amount of pills that I'm ingesting, are very tough on my body.
I have a lot to say, and wish I had the energy and time to do a post every day, but I keep finding myself needing to research my current protocols to verify that I'm getting the proper treatment. I have to double check the reputations of my doctors, and the validity of their recommendations. I don't trust other people to have my best interest at heart - medical professionals anyway. I've been burned already, and I have to make sure that I'm getting the treatments that I'm paying for. Long story.
I am completely overwhelmed trying to verify things that I'm using in my protocol. For example, there is an internet article stating that high dose vitamin C can spread astrocytomas. I can't find the research to back it up though. In fact, I've found a researcher from Kansas University Medical Center who seems to be the leading expert on the subject and has the complete opposite opinion - with facts to back it up. She uses high dose vitamin C on all of her cancer patients, even when they're going through chemo or radiation. She has the research and facts to prove that it causes hydrogen peroxide, a pro-oxidant as apposed to an antioxidant which occurs in a low dose of vitamin C. Hydrogen peroxide in the brain alkalizes the tissues making the environment inhospitable - cancer hates oxygen, that's why exercise, meditation, and deep breathing are so beneficial). Anyway, everything is incredibly complicated, and I've learned quite a lot, but I still have so much to learn. The more that I find, the more that I have to research. For example, it's not good enough to just take 75 grams of high dose vitamin C, you also have to figure out what's being mixed in the solution, you need to know how long it takes to administer (you want it to take a certain amount of time, the faster it goes in the higher the dose it becomes or something like that - it's all about the number of drips per second). Anyway, it's incredibly over my head and I need to figure it out to make sure that I'm following the protocol that Dr Drisko uses. She's the KU genius curing cancers with this stuff. I want what the genius recommends. Duh :)
As for my curcumin IV, according to some friends who understand how to calculate body weight, and the amount in my IV bag, my brain is only getting 1 micromole. For this therapy to be effective I need to be getting much more than that, like ideally, 25 micromoles. So, now I need to talk to my doctor and see what the deal is. Are they trying to administer enough to get a good kill rate (as in, killing the cancer)? Are they being scientific or are they going by trial and error. It's frustrating. I have to double check all of their work. Sorry if I sound like a brat. I don't want to be a brat. I don't want to be difficult, and truthfully, I'm always nice to the doctors, but behind their backs I get exhausted and frustrated. I realize that they're all human and that they're doing what they think is best, but the problem is that they don't seem to be following proven science. They're going more by intuition, which I realize has a place in medicine, but I need facts. I want to copy people who have already beaten their cancer. If it takes 25 micromoles to effectively kill astrocytomas in my brain, I want 25 micromoles. It would be horrible if I was paying an arm and a leg, and then my knees and teeth, thinking that my treatment is killing little Hermie, when actually he is thriving. We have to be relentless about every aspect of these treatments, and research the crap out of them.
On a much more fun note, check out the card that my blog buddy Ann sent. Totally awesome!! Thank you Ann, for the card, thank you for purchasing Hope, and for giving ME hope. I appreciate it so very much!!
Fighting cancer is incredibly exhausting, mentally, emotionally, physically and spiritually. Although I'm pretty pooped, I believe that the energy that I'm expending is giving me great results. I have to pick between various things, it's a balance, because I can't do everything. I can't accomplish it all, but I know I'm headed in the right direction.
I have a lot to say, and wish I had the energy and time to do a post every day, but I keep finding myself needing to research my current protocols to verify that I'm getting the proper treatment. I have to double check the reputations of my doctors, and the validity of their recommendations. I don't trust other people to have my best interest at heart - medical professionals anyway. I've been burned already, and I have to make sure that I'm getting the treatments that I'm paying for. Long story.
I am completely overwhelmed trying to verify things that I'm using in my protocol. For example, there is an internet article stating that high dose vitamin C can spread astrocytomas. I can't find the research to back it up though. In fact, I've found a researcher from Kansas University Medical Center who seems to be the leading expert on the subject and has the complete opposite opinion - with facts to back it up. She uses high dose vitamin C on all of her cancer patients, even when they're going through chemo or radiation. She has the research and facts to prove that it causes hydrogen peroxide, a pro-oxidant as apposed to an antioxidant which occurs in a low dose of vitamin C. Hydrogen peroxide in the brain alkalizes the tissues making the environment inhospitable - cancer hates oxygen, that's why exercise, meditation, and deep breathing are so beneficial). Anyway, everything is incredibly complicated, and I've learned quite a lot, but I still have so much to learn. The more that I find, the more that I have to research. For example, it's not good enough to just take 75 grams of high dose vitamin C, you also have to figure out what's being mixed in the solution, you need to know how long it takes to administer (you want it to take a certain amount of time, the faster it goes in the higher the dose it becomes or something like that - it's all about the number of drips per second). Anyway, it's incredibly over my head and I need to figure it out to make sure that I'm following the protocol that Dr Drisko uses. She's the KU genius curing cancers with this stuff. I want what the genius recommends. Duh :)
As for my curcumin IV, according to some friends who understand how to calculate body weight, and the amount in my IV bag, my brain is only getting 1 micromole. For this therapy to be effective I need to be getting much more than that, like ideally, 25 micromoles. So, now I need to talk to my doctor and see what the deal is. Are they trying to administer enough to get a good kill rate (as in, killing the cancer)? Are they being scientific or are they going by trial and error. It's frustrating. I have to double check all of their work. Sorry if I sound like a brat. I don't want to be a brat. I don't want to be difficult, and truthfully, I'm always nice to the doctors, but behind their backs I get exhausted and frustrated. I realize that they're all human and that they're doing what they think is best, but the problem is that they don't seem to be following proven science. They're going more by intuition, which I realize has a place in medicine, but I need facts. I want to copy people who have already beaten their cancer. If it takes 25 micromoles to effectively kill astrocytomas in my brain, I want 25 micromoles. It would be horrible if I was paying an arm and a leg, and then my knees and teeth, thinking that my treatment is killing little Hermie, when actually he is thriving. We have to be relentless about every aspect of these treatments, and research the crap out of them.
On a much more fun note, check out the card that my blog buddy Ann sent. Totally awesome!! Thank you Ann, for the card, thank you for purchasing Hope, and for giving ME hope. I appreciate it so very much!!
Fighting cancer is incredibly exhausting, mentally, emotionally, physically and spiritually. Although I'm pretty pooped, I believe that the energy that I'm expending is giving me great results. I have to pick between various things, it's a balance, because I can't do everything. I can't accomplish it all, but I know I'm headed in the right direction.
5.29.2012
Chemo Concoction
Danny and I took off for the Memorial Day weekend. We packed up Emma and Bingie; Emma in her crate in the back of the truck, and Bingie wandering the cab, finally settling onto my lap. We braved the crazy traffic, and headed east over the mountains. My parents gave us their house so that we could get out of town, knowing that we need a kitchen in order to function with our crazy chemo phase. It was so much fun getting away from the routine of our life. We needed a break, a change of pace, a different view, new scenery, and a mild adventure.
Above are photos of the chemo process. On Saturday night, Danny and I made two batches. These new little gadgets are making things so easy! After the drink had cooked for three hours at 100 degrees, I hunkered down. It took me an hour to ingest an entire glass, five large sips every 20 minutes, which is pretty typical. I can't drink it fast or it causes almost instant projectile vomiting. After my last sip, I was able to hold the drink down for one hour, then, after gently pacing, and doing some deep breathing, I had a wave of nausea so severe that there was nothing I could do. Neither my desire nor thinking of warm beaches, butterflies and bunnies did it either, I went to say something and vomit shot out of my mouth. It was seriously like something you'd see in a horror movie. The worst part about vomiting, other than the fact that I need my body to absorb the sulforaphane, is that one drink costs about $40. So, it's practically liquid gold. I don't care about the cost, as long as it gets into my body. I'd pay anything to heal myself, but if the money is going down the drain, quite literally, it's frustrating.
Danny cleaned up all of the mess, which was incredibly sweet. I wish that there was something I could do - I feel like I'm literally allergic to this stuff. The worst part is that this chemo drink that we created on Saturday night was half the dose of the normal drink. I honestly don't think I can drink it, not even a little bit. It always causes me to be sick.
Fortunately, there's a way to slow cook the drink, and as it dries up, you can roll the film into pills. Since we recognized my issue with the chemo drink in the past, as a precaution, we had already enlisted my parent's help in creating chemo pills. So, thankfully, when we saw my parents, after the long weekend, they handed me a bag of their homemade pills. Not wanting to waste any time, last night, I started with five pills which is 245.5 mg. I'm starting slow, trying to find my tolerance. Five pills caused heartburn, and some discomfort, but that's fine - no big deal. I can handle pain, and discomfort. In fact, I can handle all of the horrible side effects, but somehow I can't manage to keep it down for good. There has to be a point, though, the threshold where I can get the maximum effect and not vomit. The way that my body rids itself of the chemo drink is shocking. It's like I'm possessed - it's unreal. I just need to keep this stuff in my system long enough to get the effects. And happily, at least now, I have a few pills to slowly assess things. The pills are lot of work, but with my parents and Danny and I, all working like two sweatshop factories, we should be able to keep a good amount in production. I have to do whatever I can to heal my body. This treatment works, we already know that, but, first things first, I have to find a way to keep it in my system.
Terms:
chemo drink,
chemo pills,
recipe,
sulforaphane,
treatment
3.12.2012
Not Mutually Exclusive
Good morning world. I'm feeling wonderful after two consecutive days of napping. Yesterday I even napped twice. Today, apparently, I was still pretty pooped, I slept in until 10:00 am. That is a straight up miracle since I had been waking up in the six o'clock hour all week.
Danny and I have been hitting the weights pretty hard, keeping up with the running, and it's causing a delicious exhaustion of my body. It's a great feeling. It makes me feel so alive! Last Wednesday I did 90 squats with the weight bar bearing 5 lbs on each side. I don't know exactly how heavy that is, but it felt punishing. I probably sound weird, but it's thrilling to push my body. While exercising, I often flash back to the days in the ICU, and then the weeks, and months when I couldn't run or lift weights.
At the time when you're unable to push yourself for fears of seizures, or just flat out pressure on your brain, you feel like you may never get better, that you might not recover. Each time I get to push myself, each time I sprint in the final strides around Green Lake, I end up panting with deep breaths, elated, almost giddy at my abilities. I tell myself, as I wind down into a slow walk, "You just kicked ass!" There's something about really pushing your limits, and I think it's okay to fluff you own feathers. When you get off your butt and challenge your body, you should be proud! There's no shame in that.
It's Monday, so I'm back on my high doses of pills. Today, I thought I'd share exactly the brands that I use, and exactly the what the doses look like. It's 4 pills from each bottle, taken with a cup of whole organic milk. It's important to take the pills with whole milk because the pills are fat soluble.
I am writing this blog to share my experiences throughout my brain cancer journey, including my various treatments. My hope is to have step by step information to share with others who may find themselves in a similar position. I hope my new friend won't mind, but I'm very excited to share that I was contacted by the brother of a gentleman fighting a glioblastoma. He found my blog while trying to exhaust alternative treatments as he has already endured a brain surgery, radiation, chemotherapy, a second brain surgery and the placement of chemo wafers in the tumor cavity. His brother is a total badass cancer fighter. I shared with him more information about the past several months and what I've been doing. I realize that my blog isn't exactly easy to navigate, so I was ecstatic that he emailed with questions! I am so hopeful that my information might be helpful. This is my dream, to be contacted and help share what I've learned. It's FANTASTIC. I truly believe that we can beat these cancers, it's just a matter of varying the doses as we find what works best, and each body is different.
This treatment directly targets cancer cells while leaving healthy cells intact and unharmed. It's amazing! It's everything we've ever looked for, it's everything we've been dreaming of. To anyone out there, please, never hesitate to contact me with questions. I want to help. I want to share everything that I know. Yes, diet is very important, as is with exercise, and reducing stress. But, diet and life changes alone will not cure you of brain cancer. That's what I believe anyway, and statistics seem to concur. We have to be proactive in our treatment. I mean, think about it, if this treatment of mine doesn't cause any damage to healthy cells, why not try it? What do you have to lose? We've already shown that it worked from Oct - Jan between my MRI scans. No. New. Growth. None. Zero. On slides from the two MRI scans, comparing the exact slices, little Hermie appears to maybe even have shrunk just a tid. He definitely lessened in intensity. It's scary to go outside the bounds of our doctor's advice, but it's already been stated by the same doctors that they can't cure brain cancer. So, essentially, they don't have a solution for me. I'm on my own, except for my teammates in the artemisinin cancer fighting world. Thank God for them. I've always been a sucker for answers, and I have never been good at following statements like, "Because I said so." That just doesn't work for me. Sorry, doctors, you'll have to give me a better reason not to try other options.
I realize the doctors are just trying to be cautious and they don't want me to have any other complications, but when there are so few (effectively none) treatments that cure brain cancer, I would be a fool to follow their advice and avoid alternative options. Just because there isn't a clinical trial proving the validity of artemisinin, doesn't mean it isn't effective. The two are not mutually exclusive.
Danny and I have been hitting the weights pretty hard, keeping up with the running, and it's causing a delicious exhaustion of my body. It's a great feeling. It makes me feel so alive! Last Wednesday I did 90 squats with the weight bar bearing 5 lbs on each side. I don't know exactly how heavy that is, but it felt punishing. I probably sound weird, but it's thrilling to push my body. While exercising, I often flash back to the days in the ICU, and then the weeks, and months when I couldn't run or lift weights.
At the time when you're unable to push yourself for fears of seizures, or just flat out pressure on your brain, you feel like you may never get better, that you might not recover. Each time I get to push myself, each time I sprint in the final strides around Green Lake, I end up panting with deep breaths, elated, almost giddy at my abilities. I tell myself, as I wind down into a slow walk, "You just kicked ass!" There's something about really pushing your limits, and I think it's okay to fluff you own feathers. When you get off your butt and challenge your body, you should be proud! There's no shame in that.
It's Monday, so I'm back on my high doses of pills. Today, I thought I'd share exactly the brands that I use, and exactly the what the doses look like. It's 4 pills from each bottle, taken with a cup of whole organic milk. It's important to take the pills with whole milk because the pills are fat soluble.
I am writing this blog to share my experiences throughout my brain cancer journey, including my various treatments. My hope is to have step by step information to share with others who may find themselves in a similar position. I hope my new friend won't mind, but I'm very excited to share that I was contacted by the brother of a gentleman fighting a glioblastoma. He found my blog while trying to exhaust alternative treatments as he has already endured a brain surgery, radiation, chemotherapy, a second brain surgery and the placement of chemo wafers in the tumor cavity. His brother is a total badass cancer fighter. I shared with him more information about the past several months and what I've been doing. I realize that my blog isn't exactly easy to navigate, so I was ecstatic that he emailed with questions! I am so hopeful that my information might be helpful. This is my dream, to be contacted and help share what I've learned. It's FANTASTIC. I truly believe that we can beat these cancers, it's just a matter of varying the doses as we find what works best, and each body is different.
This treatment directly targets cancer cells while leaving healthy cells intact and unharmed. It's amazing! It's everything we've ever looked for, it's everything we've been dreaming of. To anyone out there, please, never hesitate to contact me with questions. I want to help. I want to share everything that I know. Yes, diet is very important, as is with exercise, and reducing stress. But, diet and life changes alone will not cure you of brain cancer. That's what I believe anyway, and statistics seem to concur. We have to be proactive in our treatment. I mean, think about it, if this treatment of mine doesn't cause any damage to healthy cells, why not try it? What do you have to lose? We've already shown that it worked from Oct - Jan between my MRI scans. No. New. Growth. None. Zero. On slides from the two MRI scans, comparing the exact slices, little Hermie appears to maybe even have shrunk just a tid. He definitely lessened in intensity. It's scary to go outside the bounds of our doctor's advice, but it's already been stated by the same doctors that they can't cure brain cancer. So, essentially, they don't have a solution for me. I'm on my own, except for my teammates in the artemisinin cancer fighting world. Thank God for them. I've always been a sucker for answers, and I have never been good at following statements like, "Because I said so." That just doesn't work for me. Sorry, doctors, you'll have to give me a better reason not to try other options.
I realize the doctors are just trying to be cautious and they don't want me to have any other complications, but when there are so few (effectively none) treatments that cure brain cancer, I would be a fool to follow their advice and avoid alternative options. Just because there isn't a clinical trial proving the validity of artemisinin, doesn't mean it isn't effective. The two are not mutually exclusive.
Subscribe to:
Posts (Atom)