Showing posts with label glioma. Show all posts
Showing posts with label glioma. Show all posts
10.21.2016
7.28.2016
We All Need A Wizard
Dang it, why are there so many cool people out there? I just finished an interview with Refinery29, about the TV show, My Last Days. Yes, that is the horrible name chosen to document six different people diagnosed with a terminal illness, one of which is my story. It makes my body retch to even type it. I physically hate the title, with a palpable rancor, but I understand they're trying to gain the biggest viewing potential, and that potential could help people. It's all about pulling people in, about shock value. It's the world we live in. I just don't believe I'm in my last days. I don't describe myself as terminal, although that's exactly what I've been told. That I will die of this. But I know so much more than I used to. I know that a cancer diagnosis is a hopscotch of jumps, just to find a new treatment to outlive each phase. There are no guarantees in life, and that means we don't know what our life has in store, for example, when we will die.
So, anyway, the production company set us up with a public relations agency that's helping us understand the marketing/promotion process which includes doing an interview or two. Back to my point, I was partnered with one of the PR peeps, and she is a true wizard - one of those spirits that you instantly connect with. The Refinery29 interview this morning held the typical questions, When were you diagnosed? How has this impacted your life? My wizard had addressed all of us subjects in a recent conference call and one specific point resonated with me. I started thinking about what I want my message to be. If I can sum up my goal in discussing my cancer journey, what is my ultimate point? And in a conversation with my wizard, I finally figured it out.
Some people have to talk things out to solve their problems, others need quiet solitude. I tend to need to write. And prompting really helps. So, in talking to my wizard, I evolved. And that is what's really cool about people. Those folks that encourage, and engage, and spur us to harness our passion. And after free writing the email below, errors and all, I realized, in the most concise form as of yet, my true goal.
Good morning [Wizard]! Sorry for the delay.
I would love your input on this interview. I'm excited for this opportunity, but it definitely has me thinking about what I want to get across. And it's not as simple as I thought it would be. The message on my blog is about people taking control of their health, that we as patients are so much more - we're medical consumers. That we have control over the doctors and medical centers that we choose and that we deserve respect. That doctors are not rated equal, that not all centers can offer the same treatments. That you have to protect yourself, and advocate for your rights. That no one has more of a vested interested in their health then you. To not let anyone dictate when you are out of options, when you're going to die. I have no idea how the show will be edited, what they will focus on after several days of filming, my fear is that it will be more about my husband and my love story, which is glorious and magical, and unique, but I want to help people protect themselves. In 1970 1 in 30 would be diagnosed with cancer in their lifetimes, now in 2012 it is 1 in 3 for women and 1 in 2 for men. And survival rates are still dismal for most cancers. We have to prepare ourselves to be independent thinkers. Sometimes we need to hear that it's okay to ask tough questions, demand the best care, to not be afraid to ask more of our doctors. I'm not as interested in my own story, but maybe that's just because I'm so used to it.
Just writing this has helped me find my own direction, what I'm really passionate about. God, the things I've learned. I wish I could help people more. Just even the fact that when I don't understand test results, and my doctor's explanation isn't enough (as they are not trained in medical readings of scans), I will cyber-stalk the name on the report of a scan and cold contact them to get more answers on my scans. And the medical readers are always incredibly gracious, and I get better explanations of what's going on in my body. Or I'll research a new treatment, and again find the email address of the head researcher and cold contact them with questions about dosing, or side effects. Most of the time I get responses and enter in wonderful conversations. I then gain more resources as the researchers become colleagues, I can ask them further questions about related research. Sometimes I never hear back, and that's okay too - but I figure, what will it hurt? Might as well give it a shot.
I dream of a day when patients are treated with respect, not pitted, not talked down to, that we start to get treated like customers, because we are. We are paying customers with our medical, whether it's out of pocket, or paid for by our insurance. We should have more control.
Okay, that was one hell of a diatribe, and that was me trying to be minimal. Sometimes patients just need to hear that it's okay to question, to demand more, to realize that we're getting shoved into boxes with antiquated treatments. That we deserver personalized care based on our specific pathology. Nothing will change until we demand it.
Jess
In talking with others, those souls who provide a safe haven, a pure understanding and curiosity of another's plight, we are able to open further. To share the seed of our truth. And if you're really lucky, they not only nurture what's been planted, they rejoice as you flourish. My hope is that by sharing my experiences, the things that I've learned and continue to learn, it will help others find their truth. To not be afraid of the answers, of going out on a limb to find their best health.
I continue to be blessed by people that pop into my life, making everything I do more fun, more authentic, and I cherish them.
I feel more connected to others every day, and in that, I feel more alive.
So, anyway, the production company set us up with a public relations agency that's helping us understand the marketing/promotion process which includes doing an interview or two. Back to my point, I was partnered with one of the PR peeps, and she is a true wizard - one of those spirits that you instantly connect with. The Refinery29 interview this morning held the typical questions, When were you diagnosed? How has this impacted your life? My wizard had addressed all of us subjects in a recent conference call and one specific point resonated with me. I started thinking about what I want my message to be. If I can sum up my goal in discussing my cancer journey, what is my ultimate point? And in a conversation with my wizard, I finally figured it out.
Some people have to talk things out to solve their problems, others need quiet solitude. I tend to need to write. And prompting really helps. So, in talking to my wizard, I evolved. And that is what's really cool about people. Those folks that encourage, and engage, and spur us to harness our passion. And after free writing the email below, errors and all, I realized, in the most concise form as of yet, my true goal.
Good morning [Wizard]! Sorry for the delay.
I would love your input on this interview. I'm excited for this opportunity, but it definitely has me thinking about what I want to get across. And it's not as simple as I thought it would be. The message on my blog is about people taking control of their health, that we as patients are so much more - we're medical consumers. That we have control over the doctors and medical centers that we choose and that we deserve respect. That doctors are not rated equal, that not all centers can offer the same treatments. That you have to protect yourself, and advocate for your rights. That no one has more of a vested interested in their health then you. To not let anyone dictate when you are out of options, when you're going to die. I have no idea how the show will be edited, what they will focus on after several days of filming, my fear is that it will be more about my husband and my love story, which is glorious and magical, and unique, but I want to help people protect themselves. In 1970 1 in 30 would be diagnosed with cancer in their lifetimes, now in 2012 it is 1 in 3 for women and 1 in 2 for men. And survival rates are still dismal for most cancers. We have to prepare ourselves to be independent thinkers. Sometimes we need to hear that it's okay to ask tough questions, demand the best care, to not be afraid to ask more of our doctors. I'm not as interested in my own story, but maybe that's just because I'm so used to it.
Just writing this has helped me find my own direction, what I'm really passionate about. God, the things I've learned. I wish I could help people more. Just even the fact that when I don't understand test results, and my doctor's explanation isn't enough (as they are not trained in medical readings of scans), I will cyber-stalk the name on the report of a scan and cold contact them to get more answers on my scans. And the medical readers are always incredibly gracious, and I get better explanations of what's going on in my body. Or I'll research a new treatment, and again find the email address of the head researcher and cold contact them with questions about dosing, or side effects. Most of the time I get responses and enter in wonderful conversations. I then gain more resources as the researchers become colleagues, I can ask them further questions about related research. Sometimes I never hear back, and that's okay too - but I figure, what will it hurt? Might as well give it a shot.
I dream of a day when patients are treated with respect, not pitted, not talked down to, that we start to get treated like customers, because we are. We are paying customers with our medical, whether it's out of pocket, or paid for by our insurance. We should have more control.
Okay, that was one hell of a diatribe, and that was me trying to be minimal. Sometimes patients just need to hear that it's okay to question, to demand more, to realize that we're getting shoved into boxes with antiquated treatments. That we deserver personalized care based on our specific pathology. Nothing will change until we demand it.
Jess
In talking with others, those souls who provide a safe haven, a pure understanding and curiosity of another's plight, we are able to open further. To share the seed of our truth. And if you're really lucky, they not only nurture what's been planted, they rejoice as you flourish. My hope is that by sharing my experiences, the things that I've learned and continue to learn, it will help others find their truth. To not be afraid of the answers, of going out on a limb to find their best health.
I continue to be blessed by people that pop into my life, making everything I do more fun, more authentic, and I cherish them.
I feel more connected to others every day, and in that, I feel more alive.
 |
| From our episode on My Last Days |
2.12.2016
Brain Tumor Movie: Volunteers
Many of you get the Musella Foundation newsletter in your email inbox, but for those of you who aren't familiar you'll find a link on my resources page with an explanation. (Or use the link here: http://www.virtualtrials.com)
In the most recent blast, there was a film group looking for newly diagnosed brain tumor patients who would be willing to be filmed for a year or two to document their journey. They're also looking for "survivors" (I'm so sick of that term), that can help share their tricks, and experiences, to provide hope, and perhaps even direction.
I'm not going to apply, I'm already overwhelmed with all of the tumor patients that I help on a daily basis. I realized the other day, I've been trying to help everyone else, putting myself last. I love helping people, I want to make life easier for them, I want to save them. I want to make it so that their diagnosis never happened. But it is at the expense of my health. I stop doing things to make myself healthy, to make myself feel good. I get depressed by all of these serious, heartbreaking stories. I'm not cut out to handle all of this sadness, all of this stress. It's caused me to emotionally eat, I've gained weight, I'm not focusing on what's best for my body - barely exercising. There's too much stress. Imagine, that not only are you dealing with your own diagnosis, but you handle tens of others. And people don't come to me when things are good, they come to me at their worst (their mom, their daughter, their son, their father, their wife, their husband) are just diagnosed, or they're in the midst of a recurrence. They're terrified, and confused. I handle around 20-50 emails from patients a day, not including many texts, and phone calls. And as you know, the subject matter is heavy as shit. (Not literally - that's gross.)
People never realize how many patients I work with because the job is invisible. And that's fine, but when people reach out to me with questions that they can answer themselves with a quick Google search, it really piles up, and more so, it irritates me. I'm realizing that my time is valuable. That it's okay to redirect people to go do their own research, but it's hard to turn people away. I never feel right about it, but people have to be able to help themselves.
I wake up in the middle of the night thinking about patient cases - both the people I redirect, and the others that I work with as peers. There are many who work with me troubleshooting their cases and we learn together. And those relationships are healing and exciting, but those cases are quite rare. As patients we have to turn on our critical thinking. We need to find our True North. I can't provide that to you. The problem is that I'm scared for everybody, and I'm overwhelmed. I never anticipated that this blog would be such a widely used resource. It's an honor, and I'm flattered, but I didn't factor the issue of growth. I can not take on more patients, but I'm happy to answer questions about my doctors, and some of the treatments, I just need people to do their homework first. Please don't come to me with things that you could easily figure out yourself. Because of that issue, I removed my email address from the blog. If you need to get in contact with me, please comment anywhere on the blog, any post, any page. I added a tab up at the top to help people utilize my blog, how to search it for the information they're looking for (Contact Me). I'm in the process of seriously updating my Resources tab so that it's easy to understand, with images, explanations, and links. I want to do it all, help everyone, but I am hurting myself. I handle tumor correspondence from the time I wake up to the time I go to bed. I handle patient problems all weekend, it's non-stop. There are so many problems with that, but mostly, it's not fair to Dan. He never complains, but I love him so much and for the past several years, he has not come first, the brain tumor patients have.
I'm sorry I can't do more. I feel horrible about this.
In the most recent blast, there was a film group looking for newly diagnosed brain tumor patients who would be willing to be filmed for a year or two to document their journey. They're also looking for "survivors" (I'm so sick of that term), that can help share their tricks, and experiences, to provide hope, and perhaps even direction.
I'm not going to apply, I'm already overwhelmed with all of the tumor patients that I help on a daily basis. I realized the other day, I've been trying to help everyone else, putting myself last. I love helping people, I want to make life easier for them, I want to save them. I want to make it so that their diagnosis never happened. But it is at the expense of my health. I stop doing things to make myself healthy, to make myself feel good. I get depressed by all of these serious, heartbreaking stories. I'm not cut out to handle all of this sadness, all of this stress. It's caused me to emotionally eat, I've gained weight, I'm not focusing on what's best for my body - barely exercising. There's too much stress. Imagine, that not only are you dealing with your own diagnosis, but you handle tens of others. And people don't come to me when things are good, they come to me at their worst (their mom, their daughter, their son, their father, their wife, their husband) are just diagnosed, or they're in the midst of a recurrence. They're terrified, and confused. I handle around 20-50 emails from patients a day, not including many texts, and phone calls. And as you know, the subject matter is heavy as shit. (Not literally - that's gross.)
People never realize how many patients I work with because the job is invisible. And that's fine, but when people reach out to me with questions that they can answer themselves with a quick Google search, it really piles up, and more so, it irritates me. I'm realizing that my time is valuable. That it's okay to redirect people to go do their own research, but it's hard to turn people away. I never feel right about it, but people have to be able to help themselves.
I wake up in the middle of the night thinking about patient cases - both the people I redirect, and the others that I work with as peers. There are many who work with me troubleshooting their cases and we learn together. And those relationships are healing and exciting, but those cases are quite rare. As patients we have to turn on our critical thinking. We need to find our True North. I can't provide that to you. The problem is that I'm scared for everybody, and I'm overwhelmed. I never anticipated that this blog would be such a widely used resource. It's an honor, and I'm flattered, but I didn't factor the issue of growth. I can not take on more patients, but I'm happy to answer questions about my doctors, and some of the treatments, I just need people to do their homework first. Please don't come to me with things that you could easily figure out yourself. Because of that issue, I removed my email address from the blog. If you need to get in contact with me, please comment anywhere on the blog, any post, any page. I added a tab up at the top to help people utilize my blog, how to search it for the information they're looking for (Contact Me). I'm in the process of seriously updating my Resources tab so that it's easy to understand, with images, explanations, and links. I want to do it all, help everyone, but I am hurting myself. I handle tumor correspondence from the time I wake up to the time I go to bed. I handle patient problems all weekend, it's non-stop. There are so many problems with that, but mostly, it's not fair to Dan. He never complains, but I love him so much and for the past several years, he has not come first, the brain tumor patients have.
I'm sorry I can't do more. I feel horrible about this.
11.23.2015
Don't Fear Germs
I'm miserable. But I'm excited.
I've had a temperature for a few days. At first, I just thought it was weird how much my body was hurting. My bones, every single bone in my body was full of needles, and I joked with Dan that maybe I had contracted meningitis. (I love to throw out the impossible and laugh.)
Looking back I had been noticing for the past few weeks a pain in my lungs. A burning, hot, achey sensation that I'm not used to. On Saturday, after I had written my last blog post about my lack of exercise, I became inspired and went to the gym, punched 5k in on the treadmill, and went to town. My goal was to finish the one person race in under 30 minutes. It was a little hard with the burning in my lungs, but I was able to complete it in 29:17 so I felt amazing. I did it!! Then I proceed to hack a lung. The weird part is that the stuff in my lungs isn't getting loose so the coughing didn't last.
The weird thing is that I've been feeling hot for the last week, and achy. But I always find a way to reason it out.
This brings me to yesterday. Finally, so miserable that I couldn't move, so miserable that it was hard to walk, it occurred to me that I should check my temperature. And sure enough, 104 was hitting heavy. When I saw that I had a fever I was thrilled. I leaned over and high fived Dan. Weird right?! But it isn't weird. I had read a few months ago that when you get a fever it stimulates your immune system, including the production and release of t-cells which also happen to love to eat cancer cells.
There are several cases documented of people who get fevers and it causes a regression of their cancers.
Once I learned the fever thing, several months ago, I have been trying to catch germs when people are sick. A long time ago I read a retrospective study about people with glioma. It showed that those who get diagnosed with glioma were described as people who stated they never usually got sick or had broken bones. I thought that was interesting, and I easily fell into that group. So now, I'm trying to rectify it by purposefully enhancing my immune system by putting myself in positions where I can snag a fever. Lucky for me, my nephew is practically always sick and a few weeks ago the sweet little bugger was flaming hot, and coughing. I took deep breaths around him, and hoped for the best, even sipping on a drink he had. I did it discretely. Now, maybe I'm just crazy, but I literally never get sick. I haven't had fever since September of 2012. I specifically remember it because it was right before the most recent brain surgery and I was worried it would interfere with the procedure.
So here I am, chilling with a 100 degree temp, and although achy and physically pretty miserable, my mind is partying. I did it! I earned a temperature and as those pins and needles ravage my body, I imagine my t-cells and cytokines swimming around in my body looking for foreign invaders of bacteria, and viruses, and tumor cells! I will not take aspirin to lower my fever, I will just ride it out. And to explain my reasoning, I sent some articles to my parents and Dan so that they would understand where I'm coming from. When I talked to my mom this morning she was impressed and agreed that she would reevaluate how she handles a fever too.
A fever is a wonderful response, it's like a free housekeeper.
It looks like we've been trying to stop the fevers, when actually that is a detriment to our immune system. This is great to know! Especially if you have kids. There is a lot of information out there showing that people that grow up with fevers (as opposed to people like me who usually never get infected) have a much less probability of getting a malignancy later. Note to self - try to ride it out, but monitor any significant changes.
Anyway, I'm still a little delirious and I don't know what I'm leaving out on here, but hopefully you can get the picture and do a little research on your own.
It's miserable riding it out, I'll admit, but I'm excited about my immune response, so I'll smile through the pain.
Here's a great article from Nursing Times discussing the benefits of not giving patients paracetamo for fever. The next article is a few cases of spontaneous remission after fever. It's fascinating. There are also all kinds of research studies that you can look up online. If you're really curious, look into William Coley's treatments in the 1800's. I hope this random post helps people become less fearful of germs, and viruses and bacteria. Because there is so much that we don't know. Now, I may still be completely insane, and I may be completely off base to want germs, and to initiate fever, but heck - why would doctors try to imitate hyperthermia for cancer patients all over the world as a treatment? (It's a widely accepted form of treatment all over Asia and Europe.) There's something about this concept, and I just got my fever treatment for free! I do love a good deal. :)
Nursing Times (oh crap - they allowed me to read the article once but is now restricted to members)
http://www.nursingtimes.net/does-giving-paracetamol-to-lower-raised-temperature-interfere-with-the-bodys-natural-defence-response-to-infection/5010217.fullarticle
https://www.samueliinstitute.org/File%20Library/Knowledge%20Center/Publications/meuroimmunmod.pdf
Immunity over inability: The spontaneous regression of cancer
Fever Therapy Revisited
http://www.nature.com/bjc/journal/v92/n3/full/6602386a.html
I've had a temperature for a few days. At first, I just thought it was weird how much my body was hurting. My bones, every single bone in my body was full of needles, and I joked with Dan that maybe I had contracted meningitis. (I love to throw out the impossible and laugh.)
Looking back I had been noticing for the past few weeks a pain in my lungs. A burning, hot, achey sensation that I'm not used to. On Saturday, after I had written my last blog post about my lack of exercise, I became inspired and went to the gym, punched 5k in on the treadmill, and went to town. My goal was to finish the one person race in under 30 minutes. It was a little hard with the burning in my lungs, but I was able to complete it in 29:17 so I felt amazing. I did it!! Then I proceed to hack a lung. The weird part is that the stuff in my lungs isn't getting loose so the coughing didn't last.
The weird thing is that I've been feeling hot for the last week, and achy. But I always find a way to reason it out.
This brings me to yesterday. Finally, so miserable that I couldn't move, so miserable that it was hard to walk, it occurred to me that I should check my temperature. And sure enough, 104 was hitting heavy. When I saw that I had a fever I was thrilled. I leaned over and high fived Dan. Weird right?! But it isn't weird. I had read a few months ago that when you get a fever it stimulates your immune system, including the production and release of t-cells which also happen to love to eat cancer cells.
There are several cases documented of people who get fevers and it causes a regression of their cancers.
Once I learned the fever thing, several months ago, I have been trying to catch germs when people are sick. A long time ago I read a retrospective study about people with glioma. It showed that those who get diagnosed with glioma were described as people who stated they never usually got sick or had broken bones. I thought that was interesting, and I easily fell into that group. So now, I'm trying to rectify it by purposefully enhancing my immune system by putting myself in positions where I can snag a fever. Lucky for me, my nephew is practically always sick and a few weeks ago the sweet little bugger was flaming hot, and coughing. I took deep breaths around him, and hoped for the best, even sipping on a drink he had. I did it discretely. Now, maybe I'm just crazy, but I literally never get sick. I haven't had fever since September of 2012. I specifically remember it because it was right before the most recent brain surgery and I was worried it would interfere with the procedure.
So here I am, chilling with a 100 degree temp, and although achy and physically pretty miserable, my mind is partying. I did it! I earned a temperature and as those pins and needles ravage my body, I imagine my t-cells and cytokines swimming around in my body looking for foreign invaders of bacteria, and viruses, and tumor cells! I will not take aspirin to lower my fever, I will just ride it out. And to explain my reasoning, I sent some articles to my parents and Dan so that they would understand where I'm coming from. When I talked to my mom this morning she was impressed and agreed that she would reevaluate how she handles a fever too.
A fever is a wonderful response, it's like a free housekeeper.
It looks like we've been trying to stop the fevers, when actually that is a detriment to our immune system. This is great to know! Especially if you have kids. There is a lot of information out there showing that people that grow up with fevers (as opposed to people like me who usually never get infected) have a much less probability of getting a malignancy later. Note to self - try to ride it out, but monitor any significant changes.
Anyway, I'm still a little delirious and I don't know what I'm leaving out on here, but hopefully you can get the picture and do a little research on your own.
It's miserable riding it out, I'll admit, but I'm excited about my immune response, so I'll smile through the pain.
Here's a great article from Nursing Times discussing the benefits of not giving patients paracetamo for fever. The next article is a few cases of spontaneous remission after fever. It's fascinating. There are also all kinds of research studies that you can look up online. If you're really curious, look into William Coley's treatments in the 1800's. I hope this random post helps people become less fearful of germs, and viruses and bacteria. Because there is so much that we don't know. Now, I may still be completely insane, and I may be completely off base to want germs, and to initiate fever, but heck - why would doctors try to imitate hyperthermia for cancer patients all over the world as a treatment? (It's a widely accepted form of treatment all over Asia and Europe.) There's something about this concept, and I just got my fever treatment for free! I do love a good deal. :)
Nursing Times (oh crap - they allowed me to read the article once but is now restricted to members)
http://www.nursingtimes.net/does-giving-paracetamol-to-lower-raised-temperature-interfere-with-the-bodys-natural-defence-response-to-infection/5010217.fullarticle
Fever, Cancer Incidence and
Spontaneous Remissions
Immunity over inability: The spontaneous regression of cancer
Fever Therapy Revisited
http://www.nature.com/bjc/journal/v92/n3/full/6602386a.html
11.03.2015
Shit Shit Shit. Another Recurrence.
My my mind is all over the place. I don't quite know what to do.
Crap. CRAP. I just got off the phone with a representative from UCLA Neurosurgery. It looks like I have my third recurrence. I don't understand how University of Washington could have reviewed my most recent scan to past scans and felt there was no recurrence, yet UCLA is confident the tumor has grown.
I need more information. I've asked for copies of the notes from the UCLA tumor board, and their radiology review. I've asked for a callback from one of the doctors or physician's assistants, since Dr Liau is too busy to handle me personally anymore. I worry that this is going to turn into a thing. A frustrating thing where I will need more of their scientific reasoning, and proof that the tumor has grown. That I will need to see measurements, and assessments. What about a DOPA-PET scan. Remember that scan that I took in LA back in October of 2013? It's a special scan for low grade gliomas that will differentiate between tumor and scar tissue, clarifying the MRI images. Why didn't they ask for that? Do they think that my tumor has advanced in stage? (Uh-oh.)
I'm not surprised that the tumor has grown, it's what they do. But I'm not going to start a treatment program based on an office worker's forwarded information. I want to talk to the doctors, and the decision makers. I want to talk to people that can answer all of my questions. I am a patient, and I respect my doctors, but insurance, and our money goes to pay their bills. I deserve answers. Doctors are just contract workers. I think it's always important to treat them with respect, but I also believe that we should be treated like peers. If I want/need more information, I deserve to have it.
They would like me to start radiation, and possibly enter into the following clinical trial (clearly I'm going to need more information):
Crap. CRAP. I just got off the phone with a representative from UCLA Neurosurgery. It looks like I have my third recurrence. I don't understand how University of Washington could have reviewed my most recent scan to past scans and felt there was no recurrence, yet UCLA is confident the tumor has grown.
I need more information. I've asked for copies of the notes from the UCLA tumor board, and their radiology review. I've asked for a callback from one of the doctors or physician's assistants, since Dr Liau is too busy to handle me personally anymore. I worry that this is going to turn into a thing. A frustrating thing where I will need more of their scientific reasoning, and proof that the tumor has grown. That I will need to see measurements, and assessments. What about a DOPA-PET scan. Remember that scan that I took in LA back in October of 2013? It's a special scan for low grade gliomas that will differentiate between tumor and scar tissue, clarifying the MRI images. Why didn't they ask for that? Do they think that my tumor has advanced in stage? (Uh-oh.)
I'm not surprised that the tumor has grown, it's what they do. But I'm not going to start a treatment program based on an office worker's forwarded information. I want to talk to the doctors, and the decision makers. I want to talk to people that can answer all of my questions. I am a patient, and I respect my doctors, but insurance, and our money goes to pay their bills. I deserve answers. Doctors are just contract workers. I think it's always important to treat them with respect, but I also believe that we should be treated like peers. If I want/need more information, I deserve to have it.
They would like me to start radiation, and possibly enter into the following clinical trial (clearly I'm going to need more information):
Phase: Phase I
Type: Biomarker/Laboratory analysis, Treatment
Age: 18 and over
Trial IDs: AG120-C-002, NCI-2014-00868, NCT02073994
Type: Biomarker/Laboratory analysis, Treatment
Age: 18 and over
Trial IDs: AG120-C-002, NCI-2014-00868, NCT02073994
 |
| Here comes another cancer trial, with it, a new motto. |
2.10.2015
Pregnancy and Glioma Don't Mix
I want to share why this panel, this invitation to join the premier of Surviving Terminal Cancer, is coming at the perfect time. For the prior month I had been processing the loss of a perceived future. Let me explain. From the beginning of my treatments, Dan and I have always planned on having babies as soon as the treatments concluded. It was a goal, a reward, a carrot dangling to work toward. I have always wanted to be a mother. It has been a dream to fall in love, to create a life, to carry a baby, to birth a baby, to have a family. And I treated it like it was a given. I thought my only issue was to eradicate the cancer cells from my body, to have several years of clean scans, then I was good. But it turns out, after some research, that it isn't that simple. That cancer will never go away, even if my body seems clean and clear and strong and capable.
When I started looking into it I found out that pregnancy absolutely correlates with recurrence. Obviously it isn't a given, that it would cause me a third tumor, so we could risk it, but it's so scary! It's gambling with my life, I feel like our dream is crushed. So over the past two months - since we researched - we've been absorbing the information, and essentially I've been in a state of grieving. Like I said above, I'm grieving our perceived future, the life I thought we would be able to live. Because I have had this dream my whole life, since I was a very, very little girl, it will take a long time to process the reality that my life will not be what I want it to be - even if I'm healthy. Even if my brain tumors never come back. It's painful, and incredibly sad. I go back and forth between reluctant acceptance, and reminding myself that I am just lucky to be alive. But it's hard, because if I live a long life, and it's without children, what will it look like?
One of the main reasons why I hesitated, and saved this information, is because I didn't think I could handle the obvious statements that I was sure would come. Like the, "You could always adopt." Or "There's a lot of children than need happy homes." Or, "At least you have your life." Of course, those are all the thoughts that I tell myself people could think and say, and that's because I think them and I tell them to myself. And it doesn't change things, or make me feel any better. It actually makes me feel worse.
This panel is the perfect distraction for me. I need other things to think about, a bigger cause. I need to help others, and get out of my own story. Cancer is such a nasty, nasty thief. And just when you think it can take no more, it does.
Here are a couple of studies linking pregnancy with low grade glioma:
"Furthermore, on the basis of these four case reports and other reports from the literature, women with low grade tumors need to be counseled on the risks associated with pregnancy and, more specifically, the potentially increased risk of tumor progression and transformation."
Tumor progression and transformation of low-grade glial tumors associated with pregnancy
"The present case highlights, for the first time, the unfavorable evolution of DG during pregnancy in six of the eight reported cases. It thus suggests a possible negative interation between pregnancy and supratentenorial hemispheric DG." - Influence of pregnancy in the behavior of diffuse glioma: clinical cases of a French glioma study group (see below)
It was hard for me to write this post, but I felt that it was important for me to share the dangers of pregnancy regarding glioma. I only researched for my type of brain tumor, however in the studies that I read (I only posted two, but there are more if you chose to research further) it referred to other types of brain tumors and it seems as if there's a correlation across the board. Obviously, I'm not saying that brain tumor patients shouldn't get pregnant, however you deserve to know all of the information so that you can make an educated decision. This is, after all, our lives at stake - I mean, good grief, many of these women who became pregnant had evolved grade tumors. Some died within months of childbirth. Risky stuff. Now, I realize that these are all case studies, which make it difficult to assess, since it isn't a clinical trial with a control group. However, it's clear that a clinical trail would be unethical due to the high probability of recurrence and subsequent health risk.
Oh cancer, why do you take so much? You just take, and take, and take, and take. And all the while people look at me and think I'm doing so well, that things are back to normal. They don't see all of the complications, the things that we continue to go through. That it never ends. As if the fear of recurrence, of death, wasn't enough. Man, this life can be a real test in patience, in sanity, of loss, of strength. It's as if we're being asked, how bad do we want to live? Can we overcome all of the trials? Can we stay human, and happy, and functioning, and thriving even when cancer continues to bomb our village? I think I can, but sometimes it's okay to just mourn this life, too.
When I started looking into it I found out that pregnancy absolutely correlates with recurrence. Obviously it isn't a given, that it would cause me a third tumor, so we could risk it, but it's so scary! It's gambling with my life, I feel like our dream is crushed. So over the past two months - since we researched - we've been absorbing the information, and essentially I've been in a state of grieving. Like I said above, I'm grieving our perceived future, the life I thought we would be able to live. Because I have had this dream my whole life, since I was a very, very little girl, it will take a long time to process the reality that my life will not be what I want it to be - even if I'm healthy. Even if my brain tumors never come back. It's painful, and incredibly sad. I go back and forth between reluctant acceptance, and reminding myself that I am just lucky to be alive. But it's hard, because if I live a long life, and it's without children, what will it look like?
One of the main reasons why I hesitated, and saved this information, is because I didn't think I could handle the obvious statements that I was sure would come. Like the, "You could always adopt." Or "There's a lot of children than need happy homes." Or, "At least you have your life." Of course, those are all the thoughts that I tell myself people could think and say, and that's because I think them and I tell them to myself. And it doesn't change things, or make me feel any better. It actually makes me feel worse.
This panel is the perfect distraction for me. I need other things to think about, a bigger cause. I need to help others, and get out of my own story. Cancer is such a nasty, nasty thief. And just when you think it can take no more, it does.
Here are a couple of studies linking pregnancy with low grade glioma:
"Furthermore, on the basis of these four case reports and other reports from the literature, women with low grade tumors need to be counseled on the risks associated with pregnancy and, more specifically, the potentially increased risk of tumor progression and transformation."
Tumor progression and transformation of low-grade glial tumors associated with pregnancy
"The present case highlights, for the first time, the unfavorable evolution of DG during pregnancy in six of the eight reported cases. It thus suggests a possible negative interation between pregnancy and supratentenorial hemispheric DG." - Influence of pregnancy in the behavior of diffuse glioma: clinical cases of a French glioma study group (see below)
It was hard for me to write this post, but I felt that it was important for me to share the dangers of pregnancy regarding glioma. I only researched for my type of brain tumor, however in the studies that I read (I only posted two, but there are more if you chose to research further) it referred to other types of brain tumors and it seems as if there's a correlation across the board. Obviously, I'm not saying that brain tumor patients shouldn't get pregnant, however you deserve to know all of the information so that you can make an educated decision. This is, after all, our lives at stake - I mean, good grief, many of these women who became pregnant had evolved grade tumors. Some died within months of childbirth. Risky stuff. Now, I realize that these are all case studies, which make it difficult to assess, since it isn't a clinical trial with a control group. However, it's clear that a clinical trail would be unethical due to the high probability of recurrence and subsequent health risk.
Oh cancer, why do you take so much? You just take, and take, and take, and take. And all the while people look at me and think I'm doing so well, that things are back to normal. They don't see all of the complications, the things that we continue to go through. That it never ends. As if the fear of recurrence, of death, wasn't enough. Man, this life can be a real test in patience, in sanity, of loss, of strength. It's as if we're being asked, how bad do we want to live? Can we overcome all of the trials? Can we stay human, and happy, and functioning, and thriving even when cancer continues to bomb our village? I think I can, but sometimes it's okay to just mourn this life, too.
11.25.2014
Out of The Shadows
Ugh, the dread in my body in having/needing to write this post has been weighing on me for quite some time. Like months. How embarrassing! Why can't I be fearless? Why didn't I just start talking about it from the beginning? That way there wouldn't be a buildup. I avoided it because I didn't want to deal with people's opinions. I hate bringing up controversial subjects (unless it's face-to-face where there's an open dialog), and I hate to be judged - which is weird because I have been taking control of my health, no matter the cost, definitely to the chagrin and disapproval of several of my original doctors.
I've been dragging my feet because I don't know where to start. And there are so many details as to what helped me make my decision. I know that I can't include them all because it would be exhausting, and verbose, and complicated. I'm nervous because I feel like I'm not going to be able to really explain myself. Suffice to say that I have joined private groups, and read the research, and talked to, and met with, 40-50 cancer fighters who have shared their private stories about personal cures and cancer stabilization. What is it, you ask? It's hemp oil. Also known as Phoenix Tears, or Rick Simpson Oil. You can also just call it medical marijuana or marijuana extract processed into an oil. There's a lot of names out there, and they're not all exactly the same, but they're pretty similar. I have several cancer friends who are using it in very large doses (1-2 grams a day) with dramatic results, and I have other friends who take it in small amounts and they're still getting results.
Does it work for everyone? Unfortunately not. But, as a person who lives in a legal state, I figured (after researching, and talking to fighters who use it as treatment) I might as well add it to my protocol. You might think I'm crazy, or that it's overkill, since I have now gone two years without tumor growth, but I'm sure you've heard me mention the fact that tumors are crafty little fellas that weasel their way back even during treatments. It's almost as if you're never safe. The moment you think you're golden, it'll rear its' ugly head.
I'm sorry that I'm not going to thoroughly explain the facts of my decision, but I figured at least I would throw it out there and you can research for yourself to decide if it's a legitimate form of cancer treatment, or seizure treatment. Ultimately, I am embarrassed that I was hesitant to share. People are constantly telling me how surprised, and grateful they are about my willingness to open up, but everyone has their limits, including me. I would have been perfectly fine keeping this private. It would have kept me from being judged, which is incredibly appealing, but you know what? This isn't really about me. This is about an amazing seizure and cancer fighting treatment that I think everyone should have access to. (I mean, come on, why else would they be doing cancer clinical trials with it!? It's because there's something legitimate about the plant's properties.)
When I started, I was doing the Rick Simpson protocol. You start with a dose of the oil in the size of a grain of rice three times a day, for four days. Then you double the dosing for the next four days, then you double again and treat for four days, continuing the schedule of increased dosing until you hit a gram per day. I worked up to three grains of rice three times a day. It was awful. I hate feeling high. It made me unable to function. But, it was during the month before the MRI and I was really scared about the scan, so I tried to dose up as fast as I could. What I found was that, although I hated the "high" feeling, it was magic for my anxiety (duh), and stress (duh), and sleep (duh), and seizure activity, and skull pain which is invasive, and constant. I don't really complain about my pain because I feel like dwelling on it exasperates the issue. But it is real, and never used to go away, and the fact that medical marijuana mitigates those issues is amazing to me. It's not a miracle, and it shouldn't even be a surprise because there is tons of literature and research to sustain those claims. It's not just my word. As an aside, the day that I had my seizure, I missed two doses of oil because I wanted to be 100% with my wits about me as I was waiting for the results of my MRI. I wanted to be able to process the information in an objective way in case we needed to make major decisions.
I buy the oil from a co-op that rigorously tests their products, and it comes in a 2:1 ratio of CBD:THC. I currently work with a 48% CBD to 24% THC, but I want a second oil with a 0.3 % THC level because then I can take as much as I want throughout the day (don't forget that the CBD doesn't have psychoactive effects, and it's the major seizure stopper). That's the goal, to be able to dose all day long to prevent seizures. I have since stopped taking it during the day, instead I dose at night, a few hours before bed. Ingesting the oil orally takes three hours to get into my system, although for others it's different. I would still take the higher THC oil, I would just continue to ingest that specific oil before bed to avoid any unwanted side effects.
Here are two wonderful videos that I hope you will take the time to watch. They explain a lot:
I feel crazy saying what I'm saying about medical marijuana. I believed a lot of the negative hype about weed, but as a gardener, researcher, cancer fighter, epileptic, and take charge kind of woman, I have drastically changed my stance on marijuana. I am in awe of it. And I feel like people should have the right to grow and ingest a plant. I realize the complications of teens, and recreational use, and impairment while driving, etc. but I'm getting very sick of people telling cancer patients what they can and can not do with their bodies. We're forced into toxic treatments that don't have acceptable success rates. You guys know me, I follow the Hippocratic Oath of, "First do no harm." Some people debate on whether or not medical marijuana causes harm, but it is not deniable that radiation and chemo are much more destructive than hemp oil. No one has ever died from it. You can't overdose. An overdose of hemp oil is just sleep. That's it.
I have friends in states across the country who are fighting active stage four cancers and they deserve the right to try whatever they need to survive. Period. That is why I am sharing my story about my medical marijuana use. My friends don't deserve to die just because of where they live. They should get to have access to the same life saving treatments that I do. They should have the right to improve their quality of life, to abate their pain, and sleepless nights, and overwhelming anxiety.
I feel like I'm leaving out so much, and I'm very nervous to hit the "post" button. It's scary to put yourself out there to be judged, for people to have opinions about the choices you make in your life. But it is important for me to be an advocate, to step out from the shadows, and be honest about the incredibly wonderful effects that marijuana has had on my life. No one could be more surprised than me. I am exceedingly grateful that I continued my research and was able to keep an open mind so that I could benefit from this amazing plant.
Here are a few teasers, but please do your own research and decide what you think.
Multiple Cancers
"Cannabinoids could provide unquestionable advantages compared to current antitumoural therapies: (1) cannabinoids selectively affect tumour cells more than their nontransformed counterparts that might even be protected from cell death." - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1617062/
Breast Cancer
"Analyses of the tumors revealed that cannabinoids inhibit cancer cell proliferation, induce cancer cell apoptosis, and impair tumor angiogenesis." - http://www.molecular-cancer.com/content/9/1/196
Brain Cancer
"Results obtained by our group and others during the last decade have shown that THC, the main active component of marijuana, reduces the growth of different types of tumor xenografts including gliomas."- http://mct.aacrjournals.org/content/10/1/90.full
"Both cannabinoids (THC & CBD) can reduce cell numbers by inhibiting cell-cycle progression and cell growth as well as by triggering apoptosis and engaging autophagy (19), and are also antiangiogenic and antimigratory (15). The two compounds have also been combined in a preparation that is currently licensed to treat multiple sclerosis, which is now undergoing trials with glioma." - http://mct.aacrjournals.org/content/early/2014/11/12/1535-7163.MCT-14-0402.full.pdf+html?sid=c0dd7be7-3079-4308-96f2-3393d5e28e62
I've been dragging my feet because I don't know where to start. And there are so many details as to what helped me make my decision. I know that I can't include them all because it would be exhausting, and verbose, and complicated. I'm nervous because I feel like I'm not going to be able to really explain myself. Suffice to say that I have joined private groups, and read the research, and talked to, and met with, 40-50 cancer fighters who have shared their private stories about personal cures and cancer stabilization. What is it, you ask? It's hemp oil. Also known as Phoenix Tears, or Rick Simpson Oil. You can also just call it medical marijuana or marijuana extract processed into an oil. There's a lot of names out there, and they're not all exactly the same, but they're pretty similar. I have several cancer friends who are using it in very large doses (1-2 grams a day) with dramatic results, and I have other friends who take it in small amounts and they're still getting results.
Does it work for everyone? Unfortunately not. But, as a person who lives in a legal state, I figured (after researching, and talking to fighters who use it as treatment) I might as well add it to my protocol. You might think I'm crazy, or that it's overkill, since I have now gone two years without tumor growth, but I'm sure you've heard me mention the fact that tumors are crafty little fellas that weasel their way back even during treatments. It's almost as if you're never safe. The moment you think you're golden, it'll rear its' ugly head.
I'm sorry that I'm not going to thoroughly explain the facts of my decision, but I figured at least I would throw it out there and you can research for yourself to decide if it's a legitimate form of cancer treatment, or seizure treatment. Ultimately, I am embarrassed that I was hesitant to share. People are constantly telling me how surprised, and grateful they are about my willingness to open up, but everyone has their limits, including me. I would have been perfectly fine keeping this private. It would have kept me from being judged, which is incredibly appealing, but you know what? This isn't really about me. This is about an amazing seizure and cancer fighting treatment that I think everyone should have access to. (I mean, come on, why else would they be doing cancer clinical trials with it!? It's because there's something legitimate about the plant's properties.)
When I started, I was doing the Rick Simpson protocol. You start with a dose of the oil in the size of a grain of rice three times a day, for four days. Then you double the dosing for the next four days, then you double again and treat for four days, continuing the schedule of increased dosing until you hit a gram per day. I worked up to three grains of rice three times a day. It was awful. I hate feeling high. It made me unable to function. But, it was during the month before the MRI and I was really scared about the scan, so I tried to dose up as fast as I could. What I found was that, although I hated the "high" feeling, it was magic for my anxiety (duh), and stress (duh), and sleep (duh), and seizure activity, and skull pain which is invasive, and constant. I don't really complain about my pain because I feel like dwelling on it exasperates the issue. But it is real, and never used to go away, and the fact that medical marijuana mitigates those issues is amazing to me. It's not a miracle, and it shouldn't even be a surprise because there is tons of literature and research to sustain those claims. It's not just my word. As an aside, the day that I had my seizure, I missed two doses of oil because I wanted to be 100% with my wits about me as I was waiting for the results of my MRI. I wanted to be able to process the information in an objective way in case we needed to make major decisions.
I buy the oil from a co-op that rigorously tests their products, and it comes in a 2:1 ratio of CBD:THC. I currently work with a 48% CBD to 24% THC, but I want a second oil with a 0.3 % THC level because then I can take as much as I want throughout the day (don't forget that the CBD doesn't have psychoactive effects, and it's the major seizure stopper). That's the goal, to be able to dose all day long to prevent seizures. I have since stopped taking it during the day, instead I dose at night, a few hours before bed. Ingesting the oil orally takes three hours to get into my system, although for others it's different. I would still take the higher THC oil, I would just continue to ingest that specific oil before bed to avoid any unwanted side effects.
Here are two wonderful videos that I hope you will take the time to watch. They explain a lot:
I feel crazy saying what I'm saying about medical marijuana. I believed a lot of the negative hype about weed, but as a gardener, researcher, cancer fighter, epileptic, and take charge kind of woman, I have drastically changed my stance on marijuana. I am in awe of it. And I feel like people should have the right to grow and ingest a plant. I realize the complications of teens, and recreational use, and impairment while driving, etc. but I'm getting very sick of people telling cancer patients what they can and can not do with their bodies. We're forced into toxic treatments that don't have acceptable success rates. You guys know me, I follow the Hippocratic Oath of, "First do no harm." Some people debate on whether or not medical marijuana causes harm, but it is not deniable that radiation and chemo are much more destructive than hemp oil. No one has ever died from it. You can't overdose. An overdose of hemp oil is just sleep. That's it.
I have friends in states across the country who are fighting active stage four cancers and they deserve the right to try whatever they need to survive. Period. That is why I am sharing my story about my medical marijuana use. My friends don't deserve to die just because of where they live. They should get to have access to the same life saving treatments that I do. They should have the right to improve their quality of life, to abate their pain, and sleepless nights, and overwhelming anxiety.
I feel like I'm leaving out so much, and I'm very nervous to hit the "post" button. It's scary to put yourself out there to be judged, for people to have opinions about the choices you make in your life. But it is important for me to be an advocate, to step out from the shadows, and be honest about the incredibly wonderful effects that marijuana has had on my life. No one could be more surprised than me. I am exceedingly grateful that I continued my research and was able to keep an open mind so that I could benefit from this amazing plant.
Here are a few teasers, but please do your own research and decide what you think.
Multiple Cancers
"Cannabinoids could provide unquestionable advantages compared to current antitumoural therapies: (1) cannabinoids selectively affect tumour cells more than their nontransformed counterparts that might even be protected from cell death." - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1617062/
Breast Cancer
"Analyses of the tumors revealed that cannabinoids inhibit cancer cell proliferation, induce cancer cell apoptosis, and impair tumor angiogenesis." - http://www.molecular-cancer.com/content/9/1/196
Brain Cancer
"Results obtained by our group and others during the last decade have shown that THC, the main active component of marijuana, reduces the growth of different types of tumor xenografts including gliomas."- http://mct.aacrjournals.org/content/10/1/90.full
"Both cannabinoids (THC & CBD) can reduce cell numbers by inhibiting cell-cycle progression and cell growth as well as by triggering apoptosis and engaging autophagy (19), and are also antiangiogenic and antimigratory (15). The two compounds have also been combined in a preparation that is currently licensed to treat multiple sclerosis, which is now undergoing trials with glioma." - http://mct.aacrjournals.org/content/early/2014/11/12/1535-7163.MCT-14-0402.full.pdf+html?sid=c0dd7be7-3079-4308-96f2-3393d5e28e62
9.11.2014
Daily Routine Revamp
Thank you friends, for your patience; I finally updated my Daily Routine on the blog! People ask me, quite often, what my supplements are, what I dose, how often, the reasoning, the effects, etc. and it's such an exhaustive schedule that I've been working on this for a few weeks. Maybe even months, it blurs.
I've hesitated about naming labels, and giving all of this information because obviously, I'm not a doctor, or a nutritionist. I paid a lot for most of my information, for example my spendy nutritionist, and I feel bad bypassing professionals that I respect. I realize it may interfere with their livelihood. I also don't want to endorse a specific brand, and in the past, I felt that naming my brands in turn was endorsing. But whatever, I've done so much freaking research that I might as well share and save my tumor buddies the trouble. This brain tumor life is incredibly expensive. This isn't a hobby. This isn't a business. This is our lives - it's literally about surviving - and if I can help people, I'm going to do it.
Here's the exact page copied below, with the disclaimer and all. Please let me know if you have any questions, or comments. The scheduling is based directly around my chlorotoxin, that's why it's all timed out. Some of the pills are specifically dosed apart, and similarly, together for maximum efficacy. Others are taken in the morning or around noon because they induce energy, and have to work out of my system so I can sleep at night. Remember that many of these supplements are based on my regular blood work, so don't take it as a list of what you should personally do (although *wink wink* a lot of it is also great generic tumor fighting stuff). This information is just for you to see my schedule.
With that being said, I follow this protocol Monday-Friday. On weekends, or on travel days, I do a modified version since I'm often not home and won't have my blender, and can't carry all the refrigerated powders/pills etc. I figure that doing this protocol 71% of the time is pretty damn good. When you start scrolling down you might be overwhelmed, but it's actually a great routine. I'm used to it now, and the scheduling makes it easy to go about my day. It becomes automatic. Best of all, it's one helluva tumor killing concoction!
Please note that this schedule will change and adjust as new blood work is evaluated every three months.
7:00 am
7:30 am
8:00 am
8:30 am
9:00 am Breakfast
Breakfast Smoothie Recipe - To swollow pills with:
(Fat 27 g, Carb 14 g, Protein 13 g : Calories 297)
Breakfast Pills:
12:30 pm
1:00 pm Lunch
Lunch Smoothie Recipe - To swollow pills with:
(Fat 28 g, Carb 16 g, Protein 15 g : Calories 317)
Lunch Pills:
4:00 pm
4:30 pm
5:00 pm Dinner
Dinner Pills:
8:30 pm
9:00 pm Bedtime
Bedtime Pills:
.JPG) |
| In our house we have more supplements than food :) |
I've hesitated about naming labels, and giving all of this information because obviously, I'm not a doctor, or a nutritionist. I paid a lot for most of my information, for example my spendy nutritionist, and I feel bad bypassing professionals that I respect. I realize it may interfere with their livelihood. I also don't want to endorse a specific brand, and in the past, I felt that naming my brands in turn was endorsing. But whatever, I've done so much freaking research that I might as well share and save my tumor buddies the trouble. This brain tumor life is incredibly expensive. This isn't a hobby. This isn't a business. This is our lives - it's literally about surviving - and if I can help people, I'm going to do it.
Here's the exact page copied below, with the disclaimer and all. Please let me know if you have any questions, or comments. The scheduling is based directly around my chlorotoxin, that's why it's all timed out. Some of the pills are specifically dosed apart, and similarly, together for maximum efficacy. Others are taken in the morning or around noon because they induce energy, and have to work out of my system so I can sleep at night. Remember that many of these supplements are based on my regular blood work, so don't take it as a list of what you should personally do (although *wink wink* a lot of it is also great generic tumor fighting stuff). This information is just for you to see my schedule.
Daily Routine
I work directly with a nutritionist who monitors my blood levels which dictates the supplements on my list. I have added a couple, or upped my doses, in some cases, but I continue to work with accredited individuals to keep me safe and healthy. I do not recommend following my protocol because your body may be deficient or have excesses which are different than mine. You need to do a unique protocol based on your individual bodily needs. If you want to use my nutritionist, please see the tab titled: My Doctors.With that being said, I follow this protocol Monday-Friday. On weekends, or on travel days, I do a modified version since I'm often not home and won't have my blender, and can't carry all the refrigerated powders/pills etc. I figure that doing this protocol 71% of the time is pretty damn good. When you start scrolling down you might be overwhelmed, but it's actually a great routine. I'm used to it now, and the scheduling makes it easy to go about my day. It becomes automatic. Best of all, it's one helluva tumor killing concoction!
Please note that this schedule will change and adjust as new blood work is evaluated every three months.
7:00 am
- 2 Bromelain/4800 mg GDU with water on empty stomach (anti-inflammatory, reduces tumor invasion/migration, boosts immunity, blocks the production of PGE2, reduces radiation side effects) - Metabolic Maintenance Bromelain
7:30 am
- 5 Longvida Curcumin/2500 mg with water on empty stomach (anti-inflammatory, induces glioma apoptosis, anti-proliferative, arrests tumor cell cycle, promotes differentiation, sensitizes glioma cells to radiation & chemo) - ProHealth Optimized Curcumin Longvida
8:00 am
- 6 grams Ip-6 in water on empty stomach (promotes differentiation, inhibits angiogenesis, chelates excess copper & iron) - Source Naturals IP-6
- 30 drops samento/1.5 ml TOA free (boosts immune system, increased vitality, great for low grades - slowing tumor growth, protective agent against chemo & rad effects) - NutraMedix Samento
8:30 am
- Chlorotoxin
9:00 am Breakfast
Breakfast Smoothie Recipe - To swollow pills with:
(Fat 27 g, Carb 14 g, Protein 13 g : Calories 297)
- 1/4 aloe vera juice (aides in absorption/digestion of nutrients) - Lakewood Organic Cold Pressed Pure Aloe
- 3/4 filtered water
- 1 tsp vanilla pure rice protein (keeps blood glucose stable, facilitates new cell growth, prevents wasting) - NutriBiotic Raw Organic Rice Protein Vanilla
- 2/3 scoop antioxidant micro-greens (promotes gene stability, suppresses oncogenes, upregulates tumor suppressor genes) - AmaZing GrassGreen Superfood Goji & Aci
- 1 tbsp fish oil (anti-inflammatory, immune booster, inhibits proliferation, anti-glioma) - Carlson Norwegian Cod Liver Oil
- 2 tsp coconut oil (aids in absorption of amino acids, minerals, vitamins, great omega-3, promotes energy, boosts metabolism) - Nutiva Coconut Oil Virgin Organic
- 9 g/1 tbsp chlorella (chelates copper, heavy metals, pesticides, and toxins, alleviates fatigue, immune booster, supports liver function, adds a little protein) - Now Certified Organic Chlorella Pure Powder
- 1 tsp matcha - green tea powder (apoptosis, anti-proliferative, anti-angiogenesis, sensitizes glioma cells, potentiates radiation) - NuSci Green Tea Extract (100% Polyphenol, 51% EGCG)
- 1 tsp taurine (seizure control, anti-inflammatory, anti-glioma) - Life Extension L-Taurine Powder
- 2 inches of peeled ginger root (induces apoptosis in glioma cells, anti-inflammatory)
- juice of half a lemon & 2 inches lemon peel (stimulate liver, induces glioma differentiation, anti-invasive, apoptosis)
- 1/4 avocado (smooths texture, pantothenic acid - helps fats absorb, fiber, anti-inflammatory, spectrum of carotinoids, lowers cholesterol, regulates blood sugar)
Breakfast Pills:
- 1 metformin/500 mg (regulates blood glucose, sensitizes glioma cells, targets cancer stem cells) - by prescription
- 1 berberine/500 mg (glioma apoptosis, radiosensitizer, enhances chemo, lowers blood glucose, anti-inflammatory, blocks angiogenesis) - Leaner Living Glycosolve
- 4 boswellia/1027 mg boswelic acids (anti-inflammatory, reduces brain edema, induces apoptosis, cytotoxic to glioma, inhibits leukotrienes) - Tattva's Herbs Boswellia
- 1/2 tsp Poly-MVA (been shown to slow/stop glioma growth) - AMARC Enterprises
- 6 drops CoQ10 (lowers blood pressure, neuroprotective, reduces headaches, boosts immune system) - Q-Gel Li-Q-sorb Drops
- 4 ashwaganhda/60 mg withanolides (stress relieving, fights insomnia, fatigue, depression, memory loss, anxiety, lowers inflammation, radiosensitizer, raises WBC, WBC & platelet counts, increases hemoglobin, stimulates immune system) - NutriGold Ashwagandha
- 8 maitake D-fraction/576 mg active proteogucan (boosts immune function, complements chemo, induces apoptosis, sensitizes tumor cells) - Mushroom Wisdom Maitake D-Fraction Pro
- 2 green tea extract/656.5 EGCG 710 polyphenols (apoptosis, anti-proliferative, sensitizes glioma cells, anti-angiogenesis, potentiates radiation) - Life Extension Mega Green Tea Extract
- 2 resveratrol/500 mg Japanese knotweed (anti-inflammatory, apoptosis, anti-proliferative, anti-angiogenic, anti-mutagenic, protects platelets, cytotoxic to glioma, promotes differentiation, sensitizes glioma cells to chemo & rad, neuroprotective, reduces seizures) - Life Extension Optimized Resveratrol
- 10,000 IU vitamin D (promotes differentiation, detoxes, balances neurotransmitters, boosts immune response, cytotoxic to glioma, increases tumor suppressor genes, apoptosis, reduces oncogenes) - Thorne Research Liquid Vitamin D/K2
- 1 vascustatin/750 mg (anti-angiogenesis, boosts immunity) - Allergy Research VascuStatin
- 1 probiotic/42 billion cells (supports the immune system, aides in digestion, stimulates the production of butyrate - a potent anti-glioma compound, supports the creation & synthesis of vitamins, protect us from yeast) - Flora Super 8 Hi-Potency Probiotic
- 1 zinc/50 mg (competes with copper, boosts immunity, induces apoptosis in glioma, enhances chemo) - Now Zinc
12:30 pm
- Chlorotoxin
1:00 pm Lunch
Lunch Smoothie Recipe - To swollow pills with:
(Fat 28 g, Carb 16 g, Protein 15 g : Calories 317)
- 1/4 aloe vera juice (aides in absorption/digestion of nutrients) - Lakewood Organic Cold Pressed Pure Aloe
- 3/4 filtered water
- 1 tsp vanilla pure rice protein (keeps blood glucose stable, facilitates new cell growth, prevents wasting) - NutriBiotic Raw Organic Rice Protein Vanilla
- 2/3 scoop antioxidant micro-greens (promotes gene stability, suppresses oncogenes, upregulates tumor suppressor genes) - AmaZing GrassGreen Superfood Goji & Aci
- 1 tbsp fish oil (anti-inflammatory, immune booster, inhibits proliferation, anti-glioma) - Carlson Norwegian Cod Liver Oil
- 1 tsp coconut oil (aids in absorption of amino acids, minerals, vitamins, great omega-3, promotes energy, boosts metabolism) - Nutiva Coconut Oil Virgin Organic
- 9 g/1 tbsp chlorella (chelates copper, heavy metals, pesticides, and toxins, alleviates fatigue, immune booster, supports liver function, adds a little protein) - Now Certified Organic Chlorella Pure Powder
- 1 tsp matcha - green tea powder (apoptosis, anti-proliferative, anti-angiogenesis, sensitizes glioma cells, potentiates radiation) - NuSci Green Tea Extract (100% Polyphenol, 51% EGCG)
- 1 tsp taurine (seizure control, anti-inflammatory, anti-glioma) - Life Extension L-Taurine Powder
- 2 inches of peeled ginger root (induces apoptosis in glioma cells, anti-inflammatory)
- juice of half a lemon & 2 inches lemon peel (stimulate liver, induces glioma differentiation, anti-invasive, apoptosis)
- 1/4 avocado (smooths texture, pantothenic acid - helps fats absorb, fiber, anti-inflammatory, spectrum of carotinoids, lowers cholesterol, regulates blood sugar)
- 5 Brazil nuts/570 mcg selenium (boosts immune system, induces apoptosis, anti-angiogenesis, anti-proliferative, stimulates WBCs, increases lymphocytes & NK cells, reduces headaches & seizures)
Lunch Pills:
- 1 berberine/500 mg (glioma apoptosis, radiosensitizer, enhances chemo, lowers blood glucose, anti-inflammatory, blocks angiogenesis) - Leaner Living Glycosolve
- 4 boswellia/1027 mg boswelic acids (anti-inflammatory, reduces brain edema, induces apoptosis, cytotoxic to glioma, inhibits leukotrienes) - Tattva's Herbs Boswellia
- 4 ashwaganhda/60 mg withanolides (stress relieving, fights insomnia, fatigue, depression, memory loss, anxiety, lowers inflammation, radiosensitizer, raises WBC, WBC & platelet counts, increases hemoglobin, stimulates immune system) - NutriGold Ashwagandha
- 2 green tea extract/656.5 EGCG 710 polyphenols (apoptosis, anti-proliferative, sensitizes glioma cells, anti-angiogenesis, potentiates radiation) - Life Extension Mega Green Tea Extract
- 2 resveratrol/500 mg Japanese knotweed (anti-inflammatory, apoptosis, anti-proliferative, anti-angiogenic, anti-mutagenic, protects platelets, cytotoxic to glioma, promotes differentiation, sensitizes glioma cells to chemo & rad, neuroprotective, reduces seizures) - Life Extension Optimized Resveratrol
- 4 alkylglycerols/200 mg (inhibits glioma cells, improves delivery of chemo, raises platelets, slow tumor growth, immunostimulatory, anti-proloferative, anti-angiogenic) - Ecomer Shark Liver Oil
- 3 prolonged release vitamin C/3,000 mg (boosts immunity, increases NK production, inhibits glioma invasion, anti-angiogenic, regenerates collagen, inhibition of IGF-1, induces apoptosis, lowers cholesterol) - PCC Ultra Citro CEE 1000 mg Prolonged Release
- 1 probiotic/42 billion cells (supports the immune system, aides in digestion, stimulates the production of butyrate - a potent anti-glioma compound, supports the creation & synthesis of vitamins, protect us from yeast) - Flora Super 8 Hi-Potency Probiotic
- 1 zinc/50 mg (competes with copper, boosts immunity, induces apoptosis in glioma, enhances chemo) - Now Zinc
4:00 pm
- 30 drops samento/1.5 ml TOA free (boosts immune system, increased vitality, great for low grades - slowing tumor growth, protective agent against chemo & rad effects) - NutraMedix Samento
4:30 pm
- Chlorotoxin
5:00 pm Dinner
Dinner Pills:
- 1 metformin/500 mg (regulates blood glucose, sensitizes glioma cells, targets cancer stem cells) - Prescription
- 1 berberine/500 mg (glioma apoptosis, radiosensitizer, enhances chemo, lowers blood glucose, anti-inflammatory, blocks angiogenesis) - Leaner Living Glycosolve
- 4 boswellia/1027 mg boswelic acids (anti-inflammatory, reduces brain edema, induces apoptosis, cytotoxic to glioma, inhibits leukotrienes) - Tattva's Herbs Boswellia
- 2 green tea extract/656.5 EGCG 710 polyphenols (apoptosis, anti-proliferative, sensitizes glioma cells, anti-angiogenesis, potentiates radiation) - Life Extension Mega Green Tea Extract
- 2 resveratrol/500 mg Japanese knotweed (anti-inflammatory, apoptosis, anti-proliferative, anti-angiogenic, anti-mutagenic, protects platelets, cytotoxic to glioma, promotes differentiation, sensitizes glioma cells to chemo & rad, neuroprotective, reduces seizures) - Life Extension Optimized Resveratrol
- 1 vascustatin/750 mg (anti-angiogenesis, boosts immunity) - Allergy Research VascuStatin
- 4 alkylglycerols/200 mg (inhibits glioma cells, improves delivery of chemo, raises platelets, slow tumor growth, immunostimulatory, anti-proloferative, anti-angiogenic) - Ecomer Shark Liver Oil
- 3 prolonged release vitamin C/3,000 mg (boosts immunity, increases NK production, inhibits glioma invasion, anti-angiogenic, regenerates collagen, inhibition of IGF-1, induces apoptosis, lowers cholesterol) - PCC Ultra Citro CEE 1000 mg Prolonged Release
- 25,000 IU Vitamin A (anti-proliferative, promotes differentiation, boosts immune system, anti-glioma) - Vital Nutrients Vitamin A (from fish liver oil)
- 1 probiotic/42 billion cells (supports the immune system, aides in digestion, stimulates the production of butyrate - a potent anti-glioma compound, supports the creation & synthesis of vitamins, protect us from yeast) - Flora Super 8 Hi-Potency Probiotic
- 1 zinc/50 mg (competes with copper, boosts immunity, induces apoptosis in glioma, enhances chemo) - Now Zinc
8:30 pm
- Chlorotoxin
9:00 pm Bedtime
Bedtime Pills:
- 1 naltraxone/4.5 mg (apoptosis during glioma cell division, increases NK cell production) - by prescription
- 1 lg clove of garlic minced 15 minutes prior to ingestion (protentiates naltraxone, anti-glioma, anti-bacterial, boosts immune system)
- 2 melatonin/20 mg (inhibitory effect against glioma, improves chemo & radiation, boosts immune function, promotes sleep, boosts immunotherapies, reduces seizures) - Life Extension Melatonin
- 12 drops molybdenum/300 mcg (empty stomach: chelates copper, with food:inhibits absorption, inhibits angiogenesis) - BodyBio Molybdenum
- 2 Bromelain/4800 mg GDU with water on empty stomach (anti-inflammatory, reduces tumor invasion/migration, boosts immunity, blocks the production of PGE2, reduces radiation side effects) - Metabolic Maintenance Bromelain
- 5 thymus sprays (boosts immune function, inhibits glioma proliferation, boosts creation of T-cells) - Xtra-Cell Thymus nf Douglas Laboratories
7.21.2014
Medical Marijuana: Friend or Foe
Since I shared out loud, opening myself up to friends and strangers about my diagnosis, I have been inundated with suggestions about adding cannabis to my protocol. Sometimes it's been under the cloak of privacy, other times it has been aggressively splattered on my old Facebook page. It is a divisive subject with loyal believers of its' healing properties, conversely others remain afraid of the psychoactive effects, fearful that it deteriorates lives. The first time I ever smoked pot was in high school. I think I was 15. Growing up on San Juan Island, we were taught in our fifth grade drug class that Marijuana grew naturally in our environment. We were taught how to spot it, and that we were to find an adult to remove and destroy it. As a kid, I was fearful of drugs, but marijuana seemed different. I never grew a liking toward it, though I experimented, and throughout the years would still play around every several years with friends. The pot made me unable to do my favorite things, though, like talk a lot, be quick witted, or harness my boundless energy. I still have friends that are regular pot users (which seems like such a lame way to describe it), and they're great. They're brilliant, and hilarious, and successful in their careers, but for me, it was like a rolling haze throughout my brain, shutting doors along the hallway of Thought Process. It was a bad fit.
With that being said, when people shared anecdotal stories of shrinking tumors, the alleviation of pain, or of enhanced sleep, I listened (or read the emails) with the same skepticism I hold toward anti-seizure medications, or standard of care. I would analyze their words and feel my throat ache with the memory of my old cigarette smoking ways (gross - still can't believe I ever lit up). I thought, Man, maybe it could help but at what cost? Smoking causes cancer too, remember? So I tabled it. I have two brain tumor fighting friends who use cannabis as a treatment. One smokes a puff before bed, and the other uses a resin of 1:1 (THC:CBD) orally on a cracker at night. Until recently I had only seen said anecdotal accounts - no scientific evidence to verify cannabis as a viable glioma fighting tool. I shy from believing third, fourth or linearly further removed stories. But, Stephen of AO and I have been scouring, researching, reading, discussing, and we've found information to support the use of medical marijuana for glioma. There's a trick, though, a caveat; there are things to know.
Now, this is not an exhaustive post to teach you everything you need to know about medical marijuana, this is just a basic overview of why I think you should acknowledge the relevance of the treatment. And I'm including a few things you should know as a brain tumor fighter, or as a discerning individual who reads this blog for fun.
Marijuana/Cannabis
http://www.ncbi.nlm.nih.gov/pubmed/7413719
CBD & Childhood Epilepsy
http://www.gwpharm.com/Clinical%20Use.aspx
CBD & Sleep Inducing and Anti-Epileptic Activity
http://www.ncbi.nlm.nih.gov/pubmed/7028792
Like I mentioned, this is not intended to be exhaustive. I just wanted to give a starting point for others. This is merely a little introduction so that you can research for yourself and decide if it's something you may want to use in your cancer fighting. And for those who don't have cancer, I hope this helps open your eyes, and your mind to medicinal marijuana - it certainly did for me. The benefits, and merits of the plant are not debatable. It is proven. The sticky part (ha!) is that it gets a shady (double ha!) rap because of the recreational use which upsets many. Luckily, in my state, marijuana is legal. It's still cost prohibitive to get the doses I need, though. If I purchase the CBD it would cost $56 a day for me to cut seizures, stabilize my infamous sleep issues and copy the proven dosing to fight my glioma tumor cells. I can't afford that. It is frustrating to see something that could help me so much, but I can't attain it, not in the quantities I need. And all of those benefits without any psychotropic effects. Isn't that amazing? CBD could increase my quality of life 100 fold, let alone extend it.
I read, while doing research, that the Washington state House passed a bill (1888) in February to legalize the farming, processing, and sale of raw industrial hemp and related products. As far as I can tell the bill was stuck in the world of revisions and rereading in the state Senate, now WSU is conducting a feasibility study with an end point of January 2015. The point of argument in the Senate is whether the WSDA should be the sole source of seed or just certify the seed. Hopefully they can figure that out.
The most ironic part of this whole issue, this whole post, is that a major portion of my parents business has until recently been comprised of industrialized hemp imported from (at times Hungary, Romania, and Poland) other countries. It was in the form of hemp twine, cord, thread, even fabric. With sweaty brows, and dust covering my clothes, I have literally heaved shipping containers worth of the stuff, never knowing the amazing power hidden in my arms. I'm coming around, though. Things are changing. I hope this information helps you see the benefits we can harness from this amazing plant.
The Earth has so many secrets still. Lets keep our minds open.
With that being said, when people shared anecdotal stories of shrinking tumors, the alleviation of pain, or of enhanced sleep, I listened (or read the emails) with the same skepticism I hold toward anti-seizure medications, or standard of care. I would analyze their words and feel my throat ache with the memory of my old cigarette smoking ways (gross - still can't believe I ever lit up). I thought, Man, maybe it could help but at what cost? Smoking causes cancer too, remember? So I tabled it. I have two brain tumor fighting friends who use cannabis as a treatment. One smokes a puff before bed, and the other uses a resin of 1:1 (THC:CBD) orally on a cracker at night. Until recently I had only seen said anecdotal accounts - no scientific evidence to verify cannabis as a viable glioma fighting tool. I shy from believing third, fourth or linearly further removed stories. But, Stephen of AO and I have been scouring, researching, reading, discussing, and we've found information to support the use of medical marijuana for glioma. There's a trick, though, a caveat; there are things to know.
Now, this is not an exhaustive post to teach you everything you need to know about medical marijuana, this is just a basic overview of why I think you should acknowledge the relevance of the treatment. And I'm including a few things you should know as a brain tumor fighter, or as a discerning individual who reads this blog for fun.
Marijuana/Cannabis
- There are over 80 cannabinoids in each plant (THC is the most known, CBD is second most prominent)
- THC is known for its psychoactive effects
- CBD is not psychoactive
- CBD balances THC's psychoactive effects
- CBD has shown impressive results in alleviating seizures, insomnia, anxiety, and tumors
- There are plants that have been bred to have only trace amounts of THC (causing zero psychoactive effects) but up to 18% CBD (the good stuff)
- Industrial hemp which will not get you high, naturally contains a CBD of 3-4% which for a non-bred strain is considered high CBD.
- The way to ingest CBD is not by smoking. You need to take it as an oil, a resin, by juicing leaves or buds, or turning it into a smoothie.
- THC has been shown in studies to lower immune response (the extent of which is unknown)
http://www.ncbi.nlm.nih.gov/pubmed/7413719
CBD & Childhood Epilepsy
http://www.gwpharm.com/Clinical%20Use.aspx
CBD & Sleep Inducing and Anti-Epileptic Activity
http://www.ncbi.nlm.nih.gov/pubmed/7028792
Like I mentioned, this is not intended to be exhaustive. I just wanted to give a starting point for others. This is merely a little introduction so that you can research for yourself and decide if it's something you may want to use in your cancer fighting. And for those who don't have cancer, I hope this helps open your eyes, and your mind to medicinal marijuana - it certainly did for me. The benefits, and merits of the plant are not debatable. It is proven. The sticky part (ha!) is that it gets a shady (double ha!) rap because of the recreational use which upsets many. Luckily, in my state, marijuana is legal. It's still cost prohibitive to get the doses I need, though. If I purchase the CBD it would cost $56 a day for me to cut seizures, stabilize my infamous sleep issues and copy the proven dosing to fight my glioma tumor cells. I can't afford that. It is frustrating to see something that could help me so much, but I can't attain it, not in the quantities I need. And all of those benefits without any psychotropic effects. Isn't that amazing? CBD could increase my quality of life 100 fold, let alone extend it.
I read, while doing research, that the Washington state House passed a bill (1888) in February to legalize the farming, processing, and sale of raw industrial hemp and related products. As far as I can tell the bill was stuck in the world of revisions and rereading in the state Senate, now WSU is conducting a feasibility study with an end point of January 2015. The point of argument in the Senate is whether the WSDA should be the sole source of seed or just certify the seed. Hopefully they can figure that out.
The most ironic part of this whole issue, this whole post, is that a major portion of my parents business has until recently been comprised of industrialized hemp imported from (at times Hungary, Romania, and Poland) other countries. It was in the form of hemp twine, cord, thread, even fabric. With sweaty brows, and dust covering my clothes, I have literally heaved shipping containers worth of the stuff, never knowing the amazing power hidden in my arms. I'm coming around, though. Things are changing. I hope this information helps you see the benefits we can harness from this amazing plant.
The Earth has so many secrets still. Lets keep our minds open.
6.26.2014
Cherries Are A Superfood!
I'm home, and although I tried getting back to bed this morning (at Dan's request) I can't help it but hit the ground running. My parents will be here in a few hours to spend the night, as they're flying out to get more venom tomorrow morning (man three months goes by so quickly!). My dad brought us his truck (thanks Aaron for the canopy!) so that on Friday after work, Dan and I will drive over to Wenatchee and spend the night at my parent's house. Because - for the first time - I get to pick up cherries from Stemilt and deliver a batch to Kings and Market Place in Friday Harbor. I am so excited to put faces to names, and say thank you, and give some hugs. Usually my dad, or my dad and his buddy Ron deliver cherries. The whole delivery is really quick, picking up at 7:00 am, driving to the ferry in Anacortes, taking the first ferry we can and then unloading at both grocery stores and then we're back on the next ferry off the island so that we can make it home and rest. Isn't it crazy how everything always bottlenecks? NYC, venom, cherries.
Cherry season is my favorite. They're so delicious! And really fun to eat. I mean, maybe not if you're really proper, but I'm more of a goofy tomboy who enjoys spitting the seeds. My mom has always called me G.I. Joe Barbie because I want to do what the boys do, but I like to do it with a dress, or a skirt, and now that I'm a little older, makeup. I like to be in the competition, in the mix. Now cherry season has gained even more significance. I get so excited for this fundraiser (which sneaked up on me). This year, instead of one big drop, we've divided it into three deliveries to Kings and Market Place in Friday Harbor. So to all of our Friday Harbor friends, when you're walking through the produce isle next week, and you have a hankering for cherries please know that I appreciate your support so very much!
Just yesterday I had to write the check for my shot and with the Euro so strong against the dollar it was over $5700. The treatments are stupid expensive, but surviving seems pretty smart, so whatever it takes I'm willing to do it. Also while at the doctor in NYC I discussed the sodium phenylbutyrate again. He said that it not only helps reduce glutamine/glutamate absorbtion which would slow tumor feeding, but also, the drug is a gene modifier. The problem? The market price is currently over $6000 a month. That's the actual cost of the product used in clinical trials. There is also a chemist's reproduction (you have to find a chemist pharmacy) which is not exactly the same as the drug, but very similar, essentially it's a knockoff. And it comes in at around $1200 a month. The third option is the supplement Butyrex which I own and have taken from time to time. But it's degradingly weak in comparison to the drug. So much so that it's probably a joke for what we're drying to do. There is one health insurance in the United States that will cover sodium phenylbutyrate for malignant gliomas, Aetna (technically it's an off label drug for urea cycle disorders). I do not have Aetna, but since I lost my insurance due to the Obama health care act (long story) and they bounced me down to Medicare, there could be a way when I renew in December to opt into Aetna for prescriptions. It will take until December to find out, but at least there might be a chance. As an aside, a while ago I spoke to the mother of a young woman who has taken sodium phenylbutyrate for around a year (or maybe it's two years by now) and she didn't have any real symptoms. Now, you might think I'm crazy that I'm talking about adding more treatments, but these tumors are invasive, and they morph and outsmart even the best cocktails. I mean, when you get a promotion, you don't just sit on your ass, it sparks you to keep the momentum going! This tumor is my career; I get paid in time. I don't want Hermie to come back. I refuse to be complacent. And if the additional treatment has a low risk profile, I don't see why not. Especially when we already know that IDH1 tumors, like mine, love them some glutamine/glutamate.
This brings me to a another fun rabbit hole I fell into while traveling. Are you guys familiar with methionine? I wasn't until I read THIS STUDY on the airplane last night. For those who don't want to read through the article, it's about dietary changes that you can make to prevent, and mitigate gliomas. One of the points was to focus on methionine restriction, which is an amino acid that is found in the heaviest doses in animal products.
Of course, then this morning, I had to know more. I started searching "methionine glioma", "methionine seizures", "low methionine foods", "methionine longevity". Each search result gave me more information, and more avenues to explore. Again I see that a vegan diet is best, but if you can't go strictly vegan, it would behoove all of us - especially cancer fighters - to cut back on animal products. Even the research with the ketogenic diet shows that it's not healthy unless it's restricted. A purely ketogenic diet is horrible for you. It irks me when I see articles and news reports touting the benefits of the ketogenic diet because they're missing the key point which is the restriction. The diet is actually mostly fat. Like 80% fat. So, of course you're eliminating a lot of glutamate/glutamine, glucose, methionine, etc. Heck, the restricted ketogenic diet is actually more like an elimination diet. You remove a lot of allergens. Anyway, not my point. The reading from last night and this morning reaffirms my choice to go heavy veggies, with an emphasis on superfoods (it really should be a one word term).
See - I can't help it, I start doing tumor research even when I'm supposed to be focusing on my seizure issues. The seizure issues are incredibly complex, almost too complicated to figure out. And the research about seizures is either very inconclusive or correlative but not necessarily causal. There's just so little we know about what causes seizures, or how to prevent them. Another horribly complicated riddle. I actually enjoyed researching methionine since there was clear information I could absorb and use. But for now, I'd better give my brain a break before it short circuits again. Also, thanks for all of the recent comments lately, I'll go through them soon!
Cherry season is my favorite. They're so delicious! And really fun to eat. I mean, maybe not if you're really proper, but I'm more of a goofy tomboy who enjoys spitting the seeds. My mom has always called me G.I. Joe Barbie because I want to do what the boys do, but I like to do it with a dress, or a skirt, and now that I'm a little older, makeup. I like to be in the competition, in the mix. Now cherry season has gained even more significance. I get so excited for this fundraiser (which sneaked up on me). This year, instead of one big drop, we've divided it into three deliveries to Kings and Market Place in Friday Harbor. So to all of our Friday Harbor friends, when you're walking through the produce isle next week, and you have a hankering for cherries please know that I appreciate your support so very much!
Just yesterday I had to write the check for my shot and with the Euro so strong against the dollar it was over $5700. The treatments are stupid expensive, but surviving seems pretty smart, so whatever it takes I'm willing to do it. Also while at the doctor in NYC I discussed the sodium phenylbutyrate again. He said that it not only helps reduce glutamine/glutamate absorbtion which would slow tumor feeding, but also, the drug is a gene modifier. The problem? The market price is currently over $6000 a month. That's the actual cost of the product used in clinical trials. There is also a chemist's reproduction (you have to find a chemist pharmacy) which is not exactly the same as the drug, but very similar, essentially it's a knockoff. And it comes in at around $1200 a month. The third option is the supplement Butyrex which I own and have taken from time to time. But it's degradingly weak in comparison to the drug. So much so that it's probably a joke for what we're drying to do. There is one health insurance in the United States that will cover sodium phenylbutyrate for malignant gliomas, Aetna (technically it's an off label drug for urea cycle disorders). I do not have Aetna, but since I lost my insurance due to the Obama health care act (long story) and they bounced me down to Medicare, there could be a way when I renew in December to opt into Aetna for prescriptions. It will take until December to find out, but at least there might be a chance. As an aside, a while ago I spoke to the mother of a young woman who has taken sodium phenylbutyrate for around a year (or maybe it's two years by now) and she didn't have any real symptoms. Now, you might think I'm crazy that I'm talking about adding more treatments, but these tumors are invasive, and they morph and outsmart even the best cocktails. I mean, when you get a promotion, you don't just sit on your ass, it sparks you to keep the momentum going! This tumor is my career; I get paid in time. I don't want Hermie to come back. I refuse to be complacent. And if the additional treatment has a low risk profile, I don't see why not. Especially when we already know that IDH1 tumors, like mine, love them some glutamine/glutamate.
This brings me to a another fun rabbit hole I fell into while traveling. Are you guys familiar with methionine? I wasn't until I read THIS STUDY on the airplane last night. For those who don't want to read through the article, it's about dietary changes that you can make to prevent, and mitigate gliomas. One of the points was to focus on methionine restriction, which is an amino acid that is found in the heaviest doses in animal products.
Of course, then this morning, I had to know more. I started searching "methionine glioma", "methionine seizures", "low methionine foods", "methionine longevity". Each search result gave me more information, and more avenues to explore. Again I see that a vegan diet is best, but if you can't go strictly vegan, it would behoove all of us - especially cancer fighters - to cut back on animal products. Even the research with the ketogenic diet shows that it's not healthy unless it's restricted. A purely ketogenic diet is horrible for you. It irks me when I see articles and news reports touting the benefits of the ketogenic diet because they're missing the key point which is the restriction. The diet is actually mostly fat. Like 80% fat. So, of course you're eliminating a lot of glutamate/glutamine, glucose, methionine, etc. Heck, the restricted ketogenic diet is actually more like an elimination diet. You remove a lot of allergens. Anyway, not my point. The reading from last night and this morning reaffirms my choice to go heavy veggies, with an emphasis on superfoods (it really should be a one word term).
See - I can't help it, I start doing tumor research even when I'm supposed to be focusing on my seizure issues. The seizure issues are incredibly complex, almost too complicated to figure out. And the research about seizures is either very inconclusive or correlative but not necessarily causal. There's just so little we know about what causes seizures, or how to prevent them. Another horribly complicated riddle. I actually enjoyed researching methionine since there was clear information I could absorb and use. But for now, I'd better give my brain a break before it short circuits again. Also, thanks for all of the recent comments lately, I'll go through them soon!
5.21.2014
From The Darkest Place Comes Empowerment
Still trying to wrap my mind around glutamine vs glutamate. Boy, I didn't realize how easy I had it back in the days of the macronutrients of the restricted ketogenic diet. Thankfully, Stephen sent me a quick summation a few moments ago saving me from my dark rabbit hole of searching, "Glutamine is an amino acid that circulates in the blood at high levels, and glutamate is
derived from glutamine by one enzymatic step. See the attached diagram. The cell can take in either glutamine or glutamate. Glutamine can be
converted to glutamate, glutamate is converted to alpha-ketoglutarate, and the IDH1/IDH2 mutant enzyme converts alpha-ketoglutarate into 2-HG,
which accumulates to high levels and causes tumorigenesis. IDH-non mutated lower grade tumours might have different metabolic needs."
Do I understand it now? Kind of. I think I'll need to keep reading it and rereading it in order to cement things. So glutamate is not in foods, but glutamine is. In the body glutamine can convert into glutamate which converts into that alpha thingy and my IDH1 mutated tumor will change that alpha thingy into 2-HG which causes the tumor to generate more tumor cells. Bad. Okay. Next step, I need to memorize that alpha hyphenated word (shouldn't be too hard since it starts with keto and glutarate is pretty similar to glutamate just switch the m to an r...I think I'm onto something) and intimately understand what 2-HG is/does so that I can recognize them in research. (What about 2-HighGlutarate? Okay, just Googled, and instead of high, I'll use the legit term of hydroxy and slam glutarate (which was a good guess) on the end, which makes sense. Bam. Not too bad.) Is your brain spinning, too? That was very successful. I feel a little accomplished, as if I just traversed my own mental wormhole.
Now this is where pathology becomes paramount. If you're wanting to dabble in preventing your tumor from growing, you need to know what you're working with. Every single tumor's pathology is unique, which makes it difficult. However most all tumors are on the spectrum for various categories regarding mutations (yes/no), proliferation rates (%), GFAP (also a % I believe), etc. In rare cases, they may not even be that similar to other brain tumors, instead they may be more similar to a breast tumor or pancreatic tumor (just throwing those out there). You never know. We need to look outside the box for our treatments learning from like-pathology correlations. We really don't have much to lose since standard of care is essentially failing most of us. I remember when I looked into my pathology for the first time, it was terrifying. It was depressing. It was the darkest place I had ever looked. But I pushed on because I wanted answers. I don't want to waste my time, my energy, my resources, on things that will not aid in my survival. Reading the pathology from the second brain tumor was equally scary, but I'd grown tougher skin. As they do, things had changed. The proliferation rate was higher, among other things, which of course is sobering, but it doesn't mean that you give up - panic a little but never give up. I'm learning more than ever, and constantly feel like I can almost touch a cure, or at least stability. Guess we'll know more on that front in a few weeks. I can't believe the MRI is in ten days.
Here's a link to the AO page that discusses the glutamine quandary, I forgot to include it in the last post. Don't forget, it seems specific to IDH mutations, not wild-type.
Do I understand it now? Kind of. I think I'll need to keep reading it and rereading it in order to cement things. So glutamate is not in foods, but glutamine is. In the body glutamine can convert into glutamate which converts into that alpha thingy and my IDH1 mutated tumor will change that alpha thingy into 2-HG which causes the tumor to generate more tumor cells. Bad. Okay. Next step, I need to memorize that alpha hyphenated word (shouldn't be too hard since it starts with keto and glutarate is pretty similar to glutamate just switch the m to an r...I think I'm onto something) and intimately understand what 2-HG is/does so that I can recognize them in research. (What about 2-HighGlutarate? Okay, just Googled, and instead of high, I'll use the legit term of hydroxy and slam glutarate (which was a good guess) on the end, which makes sense. Bam. Not too bad.) Is your brain spinning, too? That was very successful. I feel a little accomplished, as if I just traversed my own mental wormhole.
Now this is where pathology becomes paramount. If you're wanting to dabble in preventing your tumor from growing, you need to know what you're working with. Every single tumor's pathology is unique, which makes it difficult. However most all tumors are on the spectrum for various categories regarding mutations (yes/no), proliferation rates (%), GFAP (also a % I believe), etc. In rare cases, they may not even be that similar to other brain tumors, instead they may be more similar to a breast tumor or pancreatic tumor (just throwing those out there). You never know. We need to look outside the box for our treatments learning from like-pathology correlations. We really don't have much to lose since standard of care is essentially failing most of us. I remember when I looked into my pathology for the first time, it was terrifying. It was depressing. It was the darkest place I had ever looked. But I pushed on because I wanted answers. I don't want to waste my time, my energy, my resources, on things that will not aid in my survival. Reading the pathology from the second brain tumor was equally scary, but I'd grown tougher skin. As they do, things had changed. The proliferation rate was higher, among other things, which of course is sobering, but it doesn't mean that you give up - panic a little but never give up. I'm learning more than ever, and constantly feel like I can almost touch a cure, or at least stability. Guess we'll know more on that front in a few weeks. I can't believe the MRI is in ten days.
Here's a link to the AO page that discusses the glutamine quandary, I forgot to include it in the last post. Don't forget, it seems specific to IDH mutations, not wild-type.
12.17.2012
On To Immunotherapy
Good morning friends! Here's a rundown of things....
1. Immediately after procuring my treatment appointment in Germany, I had the "fertility" talk with my NYC doctor. He said, "You haven't even started the treatment, and you have plenty of time. We can discuss this large issue when I see you next." So there it is. I didn't have time to do the egg harvesting anyway. For now I can take that issue out of my brain.
2. After a ping-pong of emails between two incredibly diligent and efficient doctors from opposite sides of the country, it was discovered that my tumor tissue is unusable for an individualized vaccine. The remaining tumor has been treated in formalin which has then been placed in wax blocks. However, before the surgery I wrote about an immunotherapy that uses your dendritic cells and a virus to prime your body's cancer defenses. I am now on track to begin treatment in Germany with the Newcastle virus. If interested, you can read more below (written by doctors from my clinic). Or, if you would like to read the entire paper, please click here. As for the cost, it is the same. I will still be doing the leukephresis and multiple shots, but this time it will be with my dendritic cells and the Newcastle virus.
2.1.3 Newcastle disease virus in treatment of GBM; a tool for improving DC therapy besides dendritic cell therapy cell therapy another promising approach for the treatment of malignant brain tumors is the treatment with replication-selective viruses, also called oncolystic viruses. This is based on the fact that most tumor cells are more or less unable of an effective virus defense. This approach is also known as virotherapy. The application of viruses for cancer treatment is based on reports since the beginning of the 20th century on temporary improvement of cancer following natural viral infections or vaccinations against viral diseases. (DePace 1912). Meanwhile several replication competent viruses (mainly herpes and adenoviruses) were tested in vitro, in animal models as well as in phase I/II clinical trials for treatment of malignant brain tumors (Shah et al., 2003; Rainoy & Ren 2003; Wollmann et al., 2005). However, the viruses have to be genetically modified in a way that makes sure that they selectively infect and replicate in tumor cells. Within the viruses tested for human anticancer treatment the Newcastle Disease Virus (NDV), an enveloped poultry virus with a single strained RNA as genetic material, seems to be one of the most promising candidates. NDV is not a pathogen for humans, and is absolutely harmless causing only mild flu-like symptoms or conjunctivitis in the worse of cases (Lorence et al., 2001; Reichard et al., 1992). NDV shows a natural distinct tropism for cancer cells. Cancer cells infected with NDV can be killed directly with the virus within a short time after injection, whereas normal infected cells are not lysed by NDV..
As described earlier, tumor cell lysate may be the better antigen source for priming of dendritic cells because it contains the whole antigen repertoire of the tumor. However, it has to be taken in mind that most of the antigens expressed in tumors are poor inducers of immune response and are often recognized by the immune system as poor self antigens (Vergati et al., 2010). Opposed to this adjuvant active specific immunization based on tumor cells modified with a low pathogenic strain of the NDV has been reported to achieve sustained immune responses in patients with advanced colonic cancer and kiver metastasis (Lehner et al., 1990; Schulze et al., 2009). NDV can have lytic activity on tumor cells directly as well as immune stimulating properties that affect both innate and adaptive immune responses. Infection of tumor cells with live NDV results in a potent up-regulation of cell adhesion molecules on the tumor cells surface (Lehner et al., 1990; Washburn et al., 2002). Expression of viral proteins on the tumor cel surface and presence of virus derived pathogen-associated molecular patterns (e.g. double -stranded RNA) result in breaking of host tolerance towards the tumor in vitro (Bai et al., 2002). The T cell stimulatory action of dendritic cells pulsed with lysates of NDV infected tumor cells as well as the antitumor cytotoxicity of macrophages and monocytes is increased (Schirrmacher et al., 2000; Washburn et al., 2003; Zeng et al., 2002). Finally, NDV induces an increased production of various cytokines, e.g. Interferon-a as well as chemokines, influencing the migration, the activation status and cytotoxic activity of various immune cells (Lokuta et al., 19996; Schirrmacher 2005, Schlag et al., 1992). Clinical phase 1 and II studies in various tumor entities have proven the safety of active specific immunization with NDV-modified tumor cells. A detailed description of the mechanisms of action of NDV modified tumor cell vaccines and results from other studies in cancer patients were reviewed by Schirrmacher (Schirrmacher, 2005).
In malignant brain tumors, case reports as well as clinical phase I/II studies have shown that treatment with intravenously applied NDV as well as with vaccines utilizing NDV modified tumor cells can induce a clinical anti-tumor response in malignant brain tumors with objective clinical responses as well as with a trend towards improvement of overall survival (Csatary & Bakacs, 1999, Csatary et al., 2004; Freeman et al., 2005; Scheider et al., 2001; Wagner et al., 2006). Recent results from our group have shown that a therapy with dendritic cells in combination with the NDV virotherapy may improve the clinical anti-tumor response in patients with GBM (NeBelhut et al., 2007, 2011). Patients were pre-treated with intravenously administration of NDV Dendritic cells were primed with NDV modified tumor cells or with NDV alone in patient with tumor recurrence. When tested in vitro, NVD primed MoDC of such treated patients induce the activation of autologous CD8+ T cells with release of IFN-y. This leads to the hypothesis that, if viral antigens are expressed on the tumor cell surface, a NDV specific dendritic cell therapy may lead to the induction of NDV specific CD8+T cells and thus to the induction of a specific immune response against the virus infected cancer cell (NeBelhut et al., 2011).
3. I now need to get blood work done within the next week and send it to Germany. It's a final check to make sure I'm healthy enough for treatment. I'm getting nervous and excited, there's a lot of medical stuff to do. Michelle, my sweet travel buddy has been researching the train system, hotels, etc. She's got her Germany travel guide and pocket German language book. As for the details of travel, MG has it all figured out, I don't have to think about a single thing :) She's the best!
When I found out that I don't have usable tumor tissue I freaked out. I completely panicked and I worried that I shouldn't spend the money on the Newcastle treatment (along with the hyperthermia). But then I started re-reading about the treatment and was reminded that it's most effective when the tumor burden is low. It's scary to spend the money, but I have to do whatever I can to aide my body's healing properties. I can't just pretend that the tumor won't grow. I have the responsibility to try every intelligent option, regardless of the cost or effort. I know in my soul that I've gotta do it or I'll become depressed. Deep down, if I don't go for it I'll know I'm not doing everything that I could, and that translates into me giving up. It's just not an option. I'm excited, and nervous, and thrilled at the opportunity. This tumor dictates our lives. It is a ticking bomb that must be dismantled.
Here's your laugh for the day. Dan sent me this photo from work on Saturday. I literally laughed out loud :)
1. Immediately after procuring my treatment appointment in Germany, I had the "fertility" talk with my NYC doctor. He said, "You haven't even started the treatment, and you have plenty of time. We can discuss this large issue when I see you next." So there it is. I didn't have time to do the egg harvesting anyway. For now I can take that issue out of my brain.
2. After a ping-pong of emails between two incredibly diligent and efficient doctors from opposite sides of the country, it was discovered that my tumor tissue is unusable for an individualized vaccine. The remaining tumor has been treated in formalin which has then been placed in wax blocks. However, before the surgery I wrote about an immunotherapy that uses your dendritic cells and a virus to prime your body's cancer defenses. I am now on track to begin treatment in Germany with the Newcastle virus. If interested, you can read more below (written by doctors from my clinic). Or, if you would like to read the entire paper, please click here. As for the cost, it is the same. I will still be doing the leukephresis and multiple shots, but this time it will be with my dendritic cells and the Newcastle virus.
2.1.3 Newcastle disease virus in treatment of GBM; a tool for improving DC therapy besides dendritic cell therapy cell therapy another promising approach for the treatment of malignant brain tumors is the treatment with replication-selective viruses, also called oncolystic viruses. This is based on the fact that most tumor cells are more or less unable of an effective virus defense. This approach is also known as virotherapy. The application of viruses for cancer treatment is based on reports since the beginning of the 20th century on temporary improvement of cancer following natural viral infections or vaccinations against viral diseases. (DePace 1912). Meanwhile several replication competent viruses (mainly herpes and adenoviruses) were tested in vitro, in animal models as well as in phase I/II clinical trials for treatment of malignant brain tumors (Shah et al., 2003; Rainoy & Ren 2003; Wollmann et al., 2005). However, the viruses have to be genetically modified in a way that makes sure that they selectively infect and replicate in tumor cells. Within the viruses tested for human anticancer treatment the Newcastle Disease Virus (NDV), an enveloped poultry virus with a single strained RNA as genetic material, seems to be one of the most promising candidates. NDV is not a pathogen for humans, and is absolutely harmless causing only mild flu-like symptoms or conjunctivitis in the worse of cases (Lorence et al., 2001; Reichard et al., 1992). NDV shows a natural distinct tropism for cancer cells. Cancer cells infected with NDV can be killed directly with the virus within a short time after injection, whereas normal infected cells are not lysed by NDV..
As described earlier, tumor cell lysate may be the better antigen source for priming of dendritic cells because it contains the whole antigen repertoire of the tumor. However, it has to be taken in mind that most of the antigens expressed in tumors are poor inducers of immune response and are often recognized by the immune system as poor self antigens (Vergati et al., 2010). Opposed to this adjuvant active specific immunization based on tumor cells modified with a low pathogenic strain of the NDV has been reported to achieve sustained immune responses in patients with advanced colonic cancer and kiver metastasis (Lehner et al., 1990; Schulze et al., 2009). NDV can have lytic activity on tumor cells directly as well as immune stimulating properties that affect both innate and adaptive immune responses. Infection of tumor cells with live NDV results in a potent up-regulation of cell adhesion molecules on the tumor cells surface (Lehner et al., 1990; Washburn et al., 2002). Expression of viral proteins on the tumor cel surface and presence of virus derived pathogen-associated molecular patterns (e.g. double -stranded RNA) result in breaking of host tolerance towards the tumor in vitro (Bai et al., 2002). The T cell stimulatory action of dendritic cells pulsed with lysates of NDV infected tumor cells as well as the antitumor cytotoxicity of macrophages and monocytes is increased (Schirrmacher et al., 2000; Washburn et al., 2003; Zeng et al., 2002). Finally, NDV induces an increased production of various cytokines, e.g. Interferon-a as well as chemokines, influencing the migration, the activation status and cytotoxic activity of various immune cells (Lokuta et al., 19996; Schirrmacher 2005, Schlag et al., 1992). Clinical phase 1 and II studies in various tumor entities have proven the safety of active specific immunization with NDV-modified tumor cells. A detailed description of the mechanisms of action of NDV modified tumor cell vaccines and results from other studies in cancer patients were reviewed by Schirrmacher (Schirrmacher, 2005).
In malignant brain tumors, case reports as well as clinical phase I/II studies have shown that treatment with intravenously applied NDV as well as with vaccines utilizing NDV modified tumor cells can induce a clinical anti-tumor response in malignant brain tumors with objective clinical responses as well as with a trend towards improvement of overall survival (Csatary & Bakacs, 1999, Csatary et al., 2004; Freeman et al., 2005; Scheider et al., 2001; Wagner et al., 2006). Recent results from our group have shown that a therapy with dendritic cells in combination with the NDV virotherapy may improve the clinical anti-tumor response in patients with GBM (NeBelhut et al., 2007, 2011). Patients were pre-treated with intravenously administration of NDV Dendritic cells were primed with NDV modified tumor cells or with NDV alone in patient with tumor recurrence. When tested in vitro, NVD primed MoDC of such treated patients induce the activation of autologous CD8+ T cells with release of IFN-y. This leads to the hypothesis that, if viral antigens are expressed on the tumor cell surface, a NDV specific dendritic cell therapy may lead to the induction of NDV specific CD8+T cells and thus to the induction of a specific immune response against the virus infected cancer cell (NeBelhut et al., 2011).
3. I now need to get blood work done within the next week and send it to Germany. It's a final check to make sure I'm healthy enough for treatment. I'm getting nervous and excited, there's a lot of medical stuff to do. Michelle, my sweet travel buddy has been researching the train system, hotels, etc. She's got her Germany travel guide and pocket German language book. As for the details of travel, MG has it all figured out, I don't have to think about a single thing :) She's the best!
When I found out that I don't have usable tumor tissue I freaked out. I completely panicked and I worried that I shouldn't spend the money on the Newcastle treatment (along with the hyperthermia). But then I started re-reading about the treatment and was reminded that it's most effective when the tumor burden is low. It's scary to spend the money, but I have to do whatever I can to aide my body's healing properties. I can't just pretend that the tumor won't grow. I have the responsibility to try every intelligent option, regardless of the cost or effort. I know in my soul that I've gotta do it or I'll become depressed. Deep down, if I don't go for it I'll know I'm not doing everything that I could, and that translates into me giving up. It's just not an option. I'm excited, and nervous, and thrilled at the opportunity. This tumor dictates our lives. It is a ticking bomb that must be dismantled.
Here's your laugh for the day. Dan sent me this photo from work on Saturday. I literally laughed out loud :)
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