Jamie Frey's Medical Fund
Donation protected
My Story
***Pictures are at the bottom
I need help...(and a miracle)
My name is Jamie Lee Frey. I am from Bethlehem, PA. I graduated from Bethlehem Catholic High School, Class of '99. I attended St. Anne Catholic School, grades 5-8. Prior to that, I attended Thomas Jefferson Elementary School. Bethlehem, PA will always be home. I currently reside in Phoenix, Arizona and have lived here since 2007. I attended Pace University, NY from 2000-2004. I am 35 today and I was diagnosed with what some refer to as the "good" cancer (thyroid cancer) in 1999, 2 weeks after I graduated high school heading off to play basketball for Pace University, NY on a full-athletic scholarship.
I have had 6 neck surgeries (Total Thyroidectomy, Modified Radical Neck Dissection, Bilateral Neck Dissection, Excisions, etc)., 4 recurrences, a metastatic spread to my cervical lymph nodes at diagnosis and recurrences on both sides - even a decade later despite having active disease that went undetected while in "remission" or NED (No Evidence of Disease) because my WBS (Whole Body Scans) were unable to pick up active disease due to being radioactive iodine resistant. I have reached the lifetime max for radioactive iodine (RAI), and have lived for nearly half of my life with cancer off and on. Radioactive Iodine (a form of radiation) is the standard treatment protocol for thyroid cancer. There is a small percentage of thyroid cancer patients who are resistant, meaning incapable of absorbing RAI. This treatment is administered to kill remaining thyroid cancer tissue. It also harms healthy tissue and what I once was before all of this - in my prime...a healthy young woman.
Additionally, cancer is expensive. I would like to earn a consistent 12 month income without going on medical leave and on disability. I would like to work full-time, have a spouse, a family, and not step another foot into another operating room or inside of that machine under the mask again. See below for visual images. I was bolted to a table that fed me into a machine as the radiation (external beam) was administered, That treatment may have saved my life, but it came at a high cost. I can get new teeth (full mouth reconstruction) if I can obtain the help, which is why I am asking. I am lost, in pain and need a solution.
What's important is when we go, we don't take any of this with us, no money - no debt - no teeth - none of that...money may be the root of all evil for some, but if there is one thing I will leave behind that matters more than anything - it is this legacy:
Thyroid Cancer is NOT the 'GOOD' Cancer.
It is a GOOD fight and the stigma needs to be smashed.
Write it on my headstone along with asking the world for help to fund a porcelain grill. Please.
My prognosis is currently in 'good' standing, however my case is unique and hard to follow without the help of imaging in conjunction with RAI resistance and my history of persistent recurrence. I have a persisent and recurrent, localized radioactive iodine resistant form of DTC (Differentiated Thyroid Carcinoma). Meaning, I have Papillary and Follicular variants. Simply - it's mixed, there are several types of thryoid cancer, some being more aggressive than others. They call it the good cancer because the survival rate for the most common - Papillary has a very high survival rate versus other more aggressive types.
Cancer changes a person's life. Just because it may not be life-threatening or metastatic, it does not mean it is any less damaging and people should understand the secondary health problems that accompany the good cancer and the physical, mental, emotional, and financial toll this does to a person. I am a person. And a patient second. I would like that to be true in real life and that may come true once I have a quality of life. Right now I am struggling every minute of every day. What's important is I am not the only one struggling. There are many others who need help. And understanding. I hope this sheds light on a type of cancer that is treated differently, minimized and completely misunderstood by the medical field, healthcare, our loved ones and the general public. We need assistance. This is much, much bigger than me. And we need support. And RESPECT. This is a real cancer, Dr. Oz. It is NOT a "glitch" as you previously aired misrepresenting thyroid cancer. My life and present reality is NOT a glitch. I say this respectfully, but I did want to correct you kindly.
The good cancer reference is neither here nor there, I am in the 1-3% of Papillary Thyroid patients who are resistant to their own treatment. I cannot absorb the treatment that is the standard protocol for the type of cancer I have had 5 times. That's the short version.
Why External Beam Radiation?
As a result, I underwent external beam radiation since that was the next step according to NCCN guidelines based on my history of persistent recurrences and RAI resistancy. Preceding radiation - all treatment options were unsuccessful and had been exhaused up to that point in 2014 at the time of my 5th bout with the 'good' cancer. I agreed to beam radiation and we (my care team) concluded a more aggressive approach was warranted since it kept coming back. My case was debated on Tumor Board for 10 months prior to cracking my case off of a Fine-Needle Aspirated biopsy on a whim. That needle in a haystack was the proof in the pudding. Radiation followed. I would not wish any of this on my worst enemy. Not in a million years. In hindsight, I don't know what's worse, cancer or treatment. It's a double-edged sword.
I am a current patient at Cancer Treatment Centers of America in Tulsa, Oklahoma. I completed 28 rounds of external beam radiation in October of 2014. I celebrated my second consecutive birthday living in a cancer hospital, my 34th birthday undergoing major treatment, yet somehow medical insurance denied multiple claims for dental work I desperately need. This isn't a few cavities, it's major!! It was cancer!! And for the record, I had 3 cavities prior! 3!
I was that kid who brushed morning, noon, and night and rarely ate chocolate and sweets. My teeth meant so much to me and they are ruined. But my heart is still beating. That's the silver lining. I am grateful, doesn't mean I have to like my reality, I simply need to find a way to improve my reality and fix what's broken in my mouth. (My heart can wait, but that's been broken since I was younger - a lot of what I am still going through plays a large role). I want to move on! I'm over it!
My dental issues are a direct result from medical treatments necessary to preserve my life. So what about my quality of life after the treatment administered to save my life makes life that much harder? Do not get me started on our healthcare system. The daily complications I am experiencing are painful, permanent, and life-altering. This is a direct result of radiation (medical) and US Healthcare presently at its finest. Deny. Deny. Deny. (I should just move to Canada).
I need help in a big way and do not have the immediate and upfront means out of pocket to come up with a $15,000 down payment (that is needed to begin) towards my full-mouth reconstruction which is absolutely needed as soon as possible totaling roughly $32, 000, maybe more.
My teeth are breaking daily, the enamel was stripped from radiation, my salivary glands were radiated and there is a lot more to my complications than this. I will update this site with a letter (currently in the works) from my dentist with his clinical explanation. My surgeon agrees with him. Dentures are not an option. Care Credit is not an option. I do not have a co-signer and my credit has been negatively affected due to the astronomical costs that accompany a patient with cancer. I am doing my best to settle all outstanding accounts and making payments. I cannot snap my fingers and improve my credit score and come up with $30K overnight.
I was out of work on disability and FMLA multiple times from 2012-2015. Fighting cancer inside of the ring is one part. I am lucky I lived to see 35. And stepping outside of the ring when treatment is over does not mean it's over. The fight does not stop. I am a 5 time survivor and will never stop fighting because being a patient, cancer fighter and advocate is what I know how to do better than anything. I am a fighter. I will not stop.
But just because I stepped out of the ring, well - I am fighting to get my life back, or at least have a relatively stable, pain-free one at best. I need help and my case status is ongoing. I am currently under close surveillance. I just want to be able to eat again. And sleep at night without being in so much pain. I want to be able to function without taking the daily max Ibuprofen every 4 hours becasue it is not helping much anymore. The migranes and headaches will not stop coming. The nerves are exposed. I have an incredibly high pain tolerance. I mean this when I say it - I have had enough and I cannot tolerate any further pain. It is unbearable. That is why I am asking for help.
My Day-to-Day:
I cannot chew on the right side top and bottom. One of my lower front teeth broke earlier this evening. I am desperate for help and out of options. There's a lot more to this,
Why Did I Go Public?:
I openly began sharing my journey through my Facebook page in 2013 and shortly therafter, I launched a blog to raise awarenes for thyroid cancer, it is called 'The Dog on Prozac' and the link to my story is above.
If you are willing and in a position to help, I am in great need and wiping tears off my face as I write on my own behalf asking for help publicly. This is not easy for me to do, but I do not have a choice at this point. I am exhausted. I am tired. Doesn't mean I am throwing in the towel, but I cannot do this on my own anymore.
I am always positive and find the silver lining in all things, I am a survivor. I simply need a solution and every way I have tried to find a one leaves me with no answer and teeth that are literally breaking one by one daily. I do not even know how to publicly post this and ask for help, but I know in my heart this is what I need to do, and I have no other options.
I am in a great deal of pain presently and my tolerance is no longer present. I have reached my pain threshold and need to begin treatment for my mouth and teeth immediately.
What's interesting is my medical insurance denied it on the basis of it "not being medically necessary"
I would not need a full mouth resconstruction if I didn't (1) have cancer for the 5th time in my life, and (2) radiation would not have ruined my teeth if I hadn't had cancer. Cancer and radiation fall under medical. And so is this mess of an aftermath I am trying to work through but they will not help me. And this is not just my story - dental coverage NEEDS to be incorporated into the standard protocol under MEDICAL for all thyroid cancer patients and any patient who undergoes head and neck radiation. FACT!!!
The help I am asking for is necessary for the quality of life I am presently fighting to regain. Any help would be greatly appreciated. I am struggling through many tears typing this trying to articulate how badly I need the help, but I guess this is the first step...Asking.
I would dedicate my life to helping other patients if I had the means. This is my purpose. I need the help I want to someday give others the same thing I am asking for. My teeth are ruined and I am in pain. Can you please help me?
Thank you for your support and love. My heart is broken at the present time and I have faith it will heal in time, but first things first - I need to fix my teeth and cannot do it alone. Thank you for reading.
Sincerely,
Jamie Lee Frey
***Pictures are at the bottom
I need help...(and a miracle)
My name is Jamie Lee Frey. I am from Bethlehem, PA. I graduated from Bethlehem Catholic High School, Class of '99. I attended St. Anne Catholic School, grades 5-8. Prior to that, I attended Thomas Jefferson Elementary School. Bethlehem, PA will always be home. I currently reside in Phoenix, Arizona and have lived here since 2007. I attended Pace University, NY from 2000-2004. I am 35 today and I was diagnosed with what some refer to as the "good" cancer (thyroid cancer) in 1999, 2 weeks after I graduated high school heading off to play basketball for Pace University, NY on a full-athletic scholarship.
I have had 6 neck surgeries (Total Thyroidectomy, Modified Radical Neck Dissection, Bilateral Neck Dissection, Excisions, etc)., 4 recurrences, a metastatic spread to my cervical lymph nodes at diagnosis and recurrences on both sides - even a decade later despite having active disease that went undetected while in "remission" or NED (No Evidence of Disease) because my WBS (Whole Body Scans) were unable to pick up active disease due to being radioactive iodine resistant. I have reached the lifetime max for radioactive iodine (RAI), and have lived for nearly half of my life with cancer off and on. Radioactive Iodine (a form of radiation) is the standard treatment protocol for thyroid cancer. There is a small percentage of thyroid cancer patients who are resistant, meaning incapable of absorbing RAI. This treatment is administered to kill remaining thyroid cancer tissue. It also harms healthy tissue and what I once was before all of this - in my prime...a healthy young woman.
Additionally, cancer is expensive. I would like to earn a consistent 12 month income without going on medical leave and on disability. I would like to work full-time, have a spouse, a family, and not step another foot into another operating room or inside of that machine under the mask again. See below for visual images. I was bolted to a table that fed me into a machine as the radiation (external beam) was administered, That treatment may have saved my life, but it came at a high cost. I can get new teeth (full mouth reconstruction) if I can obtain the help, which is why I am asking. I am lost, in pain and need a solution.
What's important is when we go, we don't take any of this with us, no money - no debt - no teeth - none of that...money may be the root of all evil for some, but if there is one thing I will leave behind that matters more than anything - it is this legacy:
Thyroid Cancer is NOT the 'GOOD' Cancer.
It is a GOOD fight and the stigma needs to be smashed.
Write it on my headstone along with asking the world for help to fund a porcelain grill. Please.
My prognosis is currently in 'good' standing, however my case is unique and hard to follow without the help of imaging in conjunction with RAI resistance and my history of persistent recurrence. I have a persisent and recurrent, localized radioactive iodine resistant form of DTC (Differentiated Thyroid Carcinoma). Meaning, I have Papillary and Follicular variants. Simply - it's mixed, there are several types of thryoid cancer, some being more aggressive than others. They call it the good cancer because the survival rate for the most common - Papillary has a very high survival rate versus other more aggressive types.
Cancer changes a person's life. Just because it may not be life-threatening or metastatic, it does not mean it is any less damaging and people should understand the secondary health problems that accompany the good cancer and the physical, mental, emotional, and financial toll this does to a person. I am a person. And a patient second. I would like that to be true in real life and that may come true once I have a quality of life. Right now I am struggling every minute of every day. What's important is I am not the only one struggling. There are many others who need help. And understanding. I hope this sheds light on a type of cancer that is treated differently, minimized and completely misunderstood by the medical field, healthcare, our loved ones and the general public. We need assistance. This is much, much bigger than me. And we need support. And RESPECT. This is a real cancer, Dr. Oz. It is NOT a "glitch" as you previously aired misrepresenting thyroid cancer. My life and present reality is NOT a glitch. I say this respectfully, but I did want to correct you kindly.
The good cancer reference is neither here nor there, I am in the 1-3% of Papillary Thyroid patients who are resistant to their own treatment. I cannot absorb the treatment that is the standard protocol for the type of cancer I have had 5 times. That's the short version.
Why External Beam Radiation?
As a result, I underwent external beam radiation since that was the next step according to NCCN guidelines based on my history of persistent recurrences and RAI resistancy. Preceding radiation - all treatment options were unsuccessful and had been exhaused up to that point in 2014 at the time of my 5th bout with the 'good' cancer. I agreed to beam radiation and we (my care team) concluded a more aggressive approach was warranted since it kept coming back. My case was debated on Tumor Board for 10 months prior to cracking my case off of a Fine-Needle Aspirated biopsy on a whim. That needle in a haystack was the proof in the pudding. Radiation followed. I would not wish any of this on my worst enemy. Not in a million years. In hindsight, I don't know what's worse, cancer or treatment. It's a double-edged sword.
I am a current patient at Cancer Treatment Centers of America in Tulsa, Oklahoma. I completed 28 rounds of external beam radiation in October of 2014. I celebrated my second consecutive birthday living in a cancer hospital, my 34th birthday undergoing major treatment, yet somehow medical insurance denied multiple claims for dental work I desperately need. This isn't a few cavities, it's major!! It was cancer!! And for the record, I had 3 cavities prior! 3!
I was that kid who brushed morning, noon, and night and rarely ate chocolate and sweets. My teeth meant so much to me and they are ruined. But my heart is still beating. That's the silver lining. I am grateful, doesn't mean I have to like my reality, I simply need to find a way to improve my reality and fix what's broken in my mouth. (My heart can wait, but that's been broken since I was younger - a lot of what I am still going through plays a large role). I want to move on! I'm over it!
My dental issues are a direct result from medical treatments necessary to preserve my life. So what about my quality of life after the treatment administered to save my life makes life that much harder? Do not get me started on our healthcare system. The daily complications I am experiencing are painful, permanent, and life-altering. This is a direct result of radiation (medical) and US Healthcare presently at its finest. Deny. Deny. Deny. (I should just move to Canada).
I need help in a big way and do not have the immediate and upfront means out of pocket to come up with a $15,000 down payment (that is needed to begin) towards my full-mouth reconstruction which is absolutely needed as soon as possible totaling roughly $32, 000, maybe more.
My teeth are breaking daily, the enamel was stripped from radiation, my salivary glands were radiated and there is a lot more to my complications than this. I will update this site with a letter (currently in the works) from my dentist with his clinical explanation. My surgeon agrees with him. Dentures are not an option. Care Credit is not an option. I do not have a co-signer and my credit has been negatively affected due to the astronomical costs that accompany a patient with cancer. I am doing my best to settle all outstanding accounts and making payments. I cannot snap my fingers and improve my credit score and come up with $30K overnight.
I was out of work on disability and FMLA multiple times from 2012-2015. Fighting cancer inside of the ring is one part. I am lucky I lived to see 35. And stepping outside of the ring when treatment is over does not mean it's over. The fight does not stop. I am a 5 time survivor and will never stop fighting because being a patient, cancer fighter and advocate is what I know how to do better than anything. I am a fighter. I will not stop.
But just because I stepped out of the ring, well - I am fighting to get my life back, or at least have a relatively stable, pain-free one at best. I need help and my case status is ongoing. I am currently under close surveillance. I just want to be able to eat again. And sleep at night without being in so much pain. I want to be able to function without taking the daily max Ibuprofen every 4 hours becasue it is not helping much anymore. The migranes and headaches will not stop coming. The nerves are exposed. I have an incredibly high pain tolerance. I mean this when I say it - I have had enough and I cannot tolerate any further pain. It is unbearable. That is why I am asking for help.
My Day-to-Day:
I cannot chew on the right side top and bottom. One of my lower front teeth broke earlier this evening. I am desperate for help and out of options. There's a lot more to this,
Why Did I Go Public?:
I openly began sharing my journey through my Facebook page in 2013 and shortly therafter, I launched a blog to raise awarenes for thyroid cancer, it is called 'The Dog on Prozac' and the link to my story is above.
If you are willing and in a position to help, I am in great need and wiping tears off my face as I write on my own behalf asking for help publicly. This is not easy for me to do, but I do not have a choice at this point. I am exhausted. I am tired. Doesn't mean I am throwing in the towel, but I cannot do this on my own anymore.
I am always positive and find the silver lining in all things, I am a survivor. I simply need a solution and every way I have tried to find a one leaves me with no answer and teeth that are literally breaking one by one daily. I do not even know how to publicly post this and ask for help, but I know in my heart this is what I need to do, and I have no other options.
I am in a great deal of pain presently and my tolerance is no longer present. I have reached my pain threshold and need to begin treatment for my mouth and teeth immediately.
What's interesting is my medical insurance denied it on the basis of it "not being medically necessary"
I would not need a full mouth resconstruction if I didn't (1) have cancer for the 5th time in my life, and (2) radiation would not have ruined my teeth if I hadn't had cancer. Cancer and radiation fall under medical. And so is this mess of an aftermath I am trying to work through but they will not help me. And this is not just my story - dental coverage NEEDS to be incorporated into the standard protocol under MEDICAL for all thyroid cancer patients and any patient who undergoes head and neck radiation. FACT!!!
The help I am asking for is necessary for the quality of life I am presently fighting to regain. Any help would be greatly appreciated. I am struggling through many tears typing this trying to articulate how badly I need the help, but I guess this is the first step...Asking.
I would dedicate my life to helping other patients if I had the means. This is my purpose. I need the help I want to someday give others the same thing I am asking for. My teeth are ruined and I am in pain. Can you please help me?
Thank you for your support and love. My heart is broken at the present time and I have faith it will heal in time, but first things first - I need to fix my teeth and cannot do it alone. Thank you for reading.
Sincerely,
Jamie Lee Frey
Organizer
Jamie Lee
Organizer
Phoenix, AZ
