Dear Family, Friends, & Colleagues:

I'm writing you this letter today to give you some very unfortunate news!  This is the single most difficult letter I've ever written my entire life!

Some of my doctors have told me I am dying from Radiation Necrosis.   (Cell Death) Patient's who get radiation necrosis, do not survive, and there's very little research.  There is no treatment.  My medical condition is so complicated and complex even the best brain surgeons can not figure out what is happening...  What I personally know is my complicated and extremely painful symptoms have begun again.  As far as I am concerned it’s really not much different this time than in 2007-2009.  The first time doctors told me I was not going to dye and 2 years later I was...  At this point as we approach the end of 2012 I do not trust doctors after they have made so many mistakes in my overall medical care since 2009.  Frankly, I believe my brain is so complicated it’s clear doctors are just guessing! Hints the term, “Practicing Medicine”.  My symptoms continue to progress over time and it is all I can do to stay on top of it daily.  I spend much of my time in bed so when I feel well enough I want to focus only on my quality of life and having a blast, despite my severely overloading pain levels.  I feel strongly in loving life and enjoying the quality of life so I push myself! And push harder to enjoy each moment.

I have already lost a lot of brain functions i.e.; motor functions, balance, memory and peripheral vision lose, and coordination just to list a few.  It just seems to be getting worse fast.  I get worse each day!  To make matters worse I am having serious and major seizures.  Some seizures have lasted up to 20 minutes and have stopped my breathing.  December 2011-present I have been rushed to ER several times because of these seizures.  Right now, doctors would like to brain surgery again, however, due to my past brain surgery complications it's to harmful to do the same surgery they preform on other patients. Therefore, my doctors are in the process of attempting to control them using seizure mediations. 

I am in a tremendous amount of never ending pain and having major seizures. and I am doing my best to communicate, walk, talk, eye movements, and so much more...  I have a extremely complex medical condition, my body feels like it’s dying again, and I can feel it.  I refuse to go out easily and I hope doctors will find something to prolong my life and end my suffering!  I have already died in 2009, doctors brought me back to earth.  Until then I plan to have as much fun as I am able and to keep doing whatever it takes to be here on the planet!  Life is an amazing thing people take for granted and I have a unique prospective after already dying before.

Medical Update & Background

{All Updates will be posted regularly

http://www.carepages.com/carepages/angelraich}

On 3/12/2012 - I was going to UCSF Medical Center until the Hospital Kicked Me Out for possessing my medical cannabis! 

Doctors had pre-approved & inspected my vaporizer prior to putting in my IV & wiring my entire head with EEG wires.  Then about 1 1/2 hours later they were threatened to have me arrested by the feds!  I felt like Rosa Parks, who refused to move to the back of the bus, only I refused to get off the bed or leave the hospital! 

Doctors, Nurses, Security, and two UCSF Police officers physically kicked me out!  Here’s a small timeline: I was admitted into the hospital at 12 noon and put out my first call for help at 5:09 pm, and kicked out shortly after 6pm.  

I was in a California University Hospital.  I have the right to the same medical treatment and care as every other patient in the United States!  I also have the right to use my medical cannabis!  Even the US Supreme Court & the Federal Government never contest my facts in the Gonzales v. Raich case! 

This kind of treatment is uncompassionate, heartless, cruel, and a complete injustice!  Doctors no longer comply with their Oath to do no harm!  There are many details surrounding this case.  Since the incident UCSF Medical Center’s has been out of control trying to CYA, including getting the admitting neurologist Tina Shih, MD is now saying she changed my epilepsy seizure diagnosis, which is an attempt to discredit me.  She originally said on February 7th, 2012, the only way to figure out what kind of seizures I was having was to preform the EEG since I have a couple different type of seizures. (I also had seizures 1 1/12 years before my brain surgery and stopped after surgery!) The EEG was not done because I was kicked out, so therefore, it’s crazy to change it without the EEG!  Seems like quackery medicine or a cover-up to me!  Next thing you know they will attempt to take away the Radiation Necrosis away too!  However, that will not stop the pain in my head or stop me from dying... Because I can feel it happening inside my brain!

I no longer can trust UCSF Medical Center at all!  There’s really only one UCSF doctor I am hoping just stays out of the fight and that’s my brain surgeon, who diagnosis me with radiation necrosis because I still might need his help before I pass away.  Yesterday, his office just said come back in a year and will no longer fill out my hospice paperwork...  I was not happy about it but it’s better than him treating me like the other doctors at UCSF Medical Center did.  In the next week I am preparing to move to Sonoma County where my friends will be there to help me through the end of my life...  Many people still can’t believe or don’t want to believe I am dying... I wish it was not true, however, I can feel it happening in my body and at this point I am powerless to stop it!  Being denied medical care is not helping me at all!  I plan to find a new doctor as I get settled in.  I am not be going back to UCSF Medical Center!

I was suppose to have brain MRI's every 2 months.  My body has already begun to shut down, it's decent!  All three Specialist at UCSF have told me I am dying and there’s nothing they can do!  So now I am preparing for end-of-life (for caregiving at the end-of-life), which is all very important to me!  It may take a couple months to determine the rate of growth.  Signs of Dying with Suggested Cares.

On 1/24/2012 - I had an extra long MRI at USCF

with deeper imaging than previously at Stanford.  While in the tub I almost had seizures several times.  If I had a seizure they would have to start the MRI all over from beginning...

On 1/24/2012 - I saw my new brain surgeon Dr. Parsa at USCF after my MRI appointment.  Dr. Parsa said, "if it were anyone other patient we would be doing brain surgery again right now." The tumor and radiation necrosis is pushing on the temporal lobe and he thinks that's why I am having seizures.  Because of my past complications it's to risky to do surgery on my brain, instead the doctors will do their best to try to control the seizures as best they can with medication, providing my body does not reject the drugs like it always does.  It's extremely important they control the seizures because some of my seizures do stop my breathing.

We talked about me dying, the failing of my brain functions, and he does not have a timeline yet but he's building a medical team to manage join him in managing my care. 

We had a long discussion about end-of-life it's time for me to start making those plans. 

He said, it's not quite time for palliative care & hospice but it's time to start making arrangements and know where I will be going before it's time to enter palliative care.

Dr. Parsa has me scheduled to see the UCSF Epilepsy Center on Feb. 7.

Dr. Parsa has also referred me to another brain surgeon colleague of his who specializes in brain tumors, epilepsy, and the areas of brain where my radiation necrosis, brain tumor, in and surrounding areas.

Dr. Parsa's office is in the process of scheduling me for another MRI and doctor visits for two months from now, which will be sometime in March 2012.

I am in tremendous pain and the seizures are kicking my butt.  I seem to be having lots of seizures from small to major...  The seizures are really scary and help keep me isolated from the world at large.

I am in a tremendous amount of pain every single second!!  I always do my best to hide the high levels of pain I can't escape but I always try to find something to laugh about... even if it's laughing at myself...  I am doing my best to stay strong but I find it hard at times because I seem to be consoling everyone but not many are really consoling me...  I am starting to feel my emotions and the lose...  I love you all please help me though this...  I need you and I don't want to do this all alone!  xo

January 3, 2012 - My first appointment with Dr. Andrew Parsa at UCSF Medical Center -Department of Neurological Surgery and Neuro-oncology Clinic. Immediately upon entering the room Dr. Parsa said, wow, you've really been through a lot, your surgery was so complicated, and you had so many complications during surgery it was amazing that you survived.  Dr. Parsa discuss all my medical records that he reviewed, all 300+ pages including MRI’s.

Dr. Parsa said, He wasn't as concerned about the brain tumor itself.  The tumor itself looked pretty stable for the most part outside of the fact that they couldn't see the whole backside of the tumor on the MRI.  Parsa wanted to do another MRI using UCSF MRI machine using different views.  Parsa said, he was more concerned about the damage to my brain from the radiation treatment given back in 2007.

Dr. Parsa's report said, he had the opportunity to see Angel in the neurosurgery clinic and she’s a woman with very complicated medical history starting with the diagnosis of the trigeminal schwanomma (brain tumor), requiring postoperative management with Coumadin (blood thinner) because of thrombosis (brain blood clot) of one of her venous sinuses (venous sinuses are venous channels found between the layers of dura mater in the brain.  They receive blood from the internal and external veins of the brain, receive cerebrospinal fluid (CSF) from the subarachnoid space, and ultimately empty into the internal jugular vein.), which is a large vein or channel for the circulation of venous blood.  She has multiple complaints related to pain syndrome and also has developed a very wide base gate, and difficulty walking. 

Her MRI scan is concerning for radiation necrosis in and around the temporal lobe on the left, and in proximity to decide if previous treatment and surgical resection. (The in & surrounding areas are the brainstem, pons, cerebellum, and cranial nerves, in and around the area of the brain tumor, the radiosurgery (radiation treatment), brain surgery, and the brain blood clot.)  Well in my office we discussed her pathology and I was checking her extraocular motions, she sustained what appeared to be a focal seizure that compressed her speech this resulted its own after about one or 2 min.  Accordingly, I recommend that should be evaluated by one of our neurologist here, and I'm recommending a repeat MRI scan every 2 to 3 months.  He was recommending that we initiate an increase of my anticoagulant medication.  “She is a very complicated patient, with multiple medical problems and I do recommend that we continue to follow her closely, because of the potential radiation treatment effects impacting her left temporal lobe.

November 22, 2011 - MRI at Stanford Hospital & I saw my old doctors at Stanford. Dr. Steven Chang at Stanford told me that my tumor didn't have to be growing for me to end up in the same place.  I looked at Dr. Chang straight in the eyes and I said, no wait a minute…  If the tumor grows, it means I'm dying again!  So if you're telling me my tumor doesn't have to grow for me to end up in the same place… Does that mean that I'm dying right now???  What in the world is that exactly supposed to mean? He changed the subject giving me a bunch of "I don't know's", which is the moment I knew he was not educated enough to handle the complexity of my condition. So I took all my medical records to UCSF Medical Center.

In the past two years 2009 to 2011 - I have been struggling to survive my extremely painful brain tumor, brain surgery, brain blood clot, stroke, and even death. I did my best to attempt to get back on my feet in all aspects of my life. However, 4 months ago things begun to get worse!  

When your body begins to dye it goes through many different changes.  I will never forget what it’s felt like in 2008-09 or the journey between life & death.   You would never mistake it for anything else, ever!  The death process is indescribable.  The way the body, mind, and spirit transcend as you see everything throughout your life’s journey here on earth, all the while your life on earth fades as my physical body laid dying.  Fortunately right now, I know exactly where I am at in the process of death, and only hope & pray doctors can caught up fast enough to help be in a safe place so I may have a “good death” while I pass.  I have been in tune with my body for many years and what worries me is it’s happening fast, and I believe it will be faster than we all expect including the doctors.  I really do not want to die, but no matter how hard I try to prevent myself from dying I can feel my body shutting down and I am scared things will not be in place in time. All I want is comfortable in my own room, with some of my things!

Learn More About Radiation Necrosis of the brain.  Click Here...

{Note: There is not much information on radiation necrosis because people do not survive it. The one experimental medication only I am not able to take it.}

Thank you! 

I love and will miss you all!

Angel McClary Raich

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