My Brain Tumor Specialist's Name is: John R. Adler, Jr. for those of you interested in knowing about my doctor. I have been his patient since I found out about my brain tumor back in 1999. He will be doing my brain tumor surgery at Stanford Hospital, I will post the date as soon as I know it! Dr. John Adler is an amazing doctor! His curriculum vitae is available on line... Chick here. Each link is diferent on Dr. Adler. I am glad I have a great doctor.
My brain tumor surgery will be on the morning of October 28, 2009,five days before my 44th birthday (which is November 2). I am not sure of the time for the surgery yet and will let you know as soon as it is set.
My pre-operative appointment is scheduled for October 20th, 2009, at 11am.
Surgery will be performed at Stanford University Medical Center, Surgical Department: 300 Pasteur Drive, Stanford, CA 94305, in the Palo Alto Area. Friends and family can wait in the waiting room located on the 2nd floor.
I need to have an MRI between 11am and 2pm on the day before the surgery.
The doctor wants me to stay in a hotel in Stanford/Palo Alto the night before since the surgery is so early and I live so far away. Fortunately, Stanford gets a discount on the rooms.
After surgery I will be taken to the recovery room for 2-3 hours, and then taken to my assigned room in the Intensive Care Unit or B3 depending on the complexity of the procedure.
They will have me in a private room due to my cannabis use in the hospital.
One thing is for sure I am scared to death! I don't remember ever being this scared!
What to Expect During Surgery?
The surgery will take about three hours, then two to three hours in the recovery room. This brain tumor surgery is very risky in many ways. I will do my best to explain some of it.
The growing tumor and the cysts are very deep in my brain. The tumor is wrapped around the 5th cranial nerve and putting pressure on the other cranial nerves. The tumor is doing things it should not be doing. My specialist, John Adler, Jr., MD, is one of the best brain surgeons in the USA. He has never seen this type of tumor do what mine is doing. Unfortunately, he says I do not fall within any statistics.
This type of brain surgery is ordinarily very risky. The tumor was considered to be non-operable because of the fact it's so deep in the brain and the risk factors are too high for surgery, plus the tumor is wrapped around that nerve. That is why we did radiation first, but radiation failed. I would not need brain surgery right now if I hadn't had the radiation treatment. The tumor would have simply grown slowly over time, killing the nerve as it grew.
Something that makes the whole thing even more risky and very complicated is that my body does not tolerate synthetic drugs. I am allergic to narcotics and opiates. Yet, they have to treat the pain from this type of surgery or my body will go in shock, which is very serious. This is brain surgery not some other surgeries. I plan to survive this, however the reality is I could die while in surgery or even while in recovery.
It is very important I am ready, have the things I need, and minimize stress, fear, anxiety, and the other stressors prior to surgery as best I can. Ok, I realize I am extremely scared of this surgery. Wouldn't you be? I am doing my best to be as positive as I can be. Wow, it's easier said than done, believe me!
I do have things in place in case I die. I have a will, a dual power of attorney, and an advance health care directive. It's all laid out. (OH, MY GOD! That was hard.)
When you face these sorts of medical issues, risks and complications, everything in your life becomes more clear: what you want and what you don't want in your life, who you care about and whom you don't, what's important and what is not. I have decided to keep all negative people out of my inter circle until after surgery, after I have been able to heal some. I need to keep negative influences away now to help me cope and prepare for my upcoming surgery. I am so freaked out over what is happening to me I am barely able to handle it, and at times I am just really not handling it at all. It's very hard when I spend so much time alone. It's easy for people to tell me what to do, but it's not them so they can't possibly know what I am going through or how hard this is for me to go at this alone. I don't have a mate living with me helping me cope, holding me when I cry, helping me think my way through these extremely difficult decisions. I am not saying my friends are not here, but I am alone most of the time.
I felt I could not make the decision because I did not have the things I needed in place to win this battle. I needed to sleep and rest before I could commit to making a decision to go ahead with the surgery since I found out I could die if I don't. The deciding factor for me was the fact I have kids who still need me here on earth. That's why I decided to just bite the bullet. (Gayle calls me BB for Bullet Biter!)
I will not know more until my pre-operative evaluation, October 20, 2009. I will send out an update at that time…
What to Expect During Recovery?
They will let me use cannabis in the hospital to help with recovery. I will not know until my pre-operative evaluation, October 20, 2009, or after the surgery is preformed when they know the prognosis. I will send an out an update.
I have not been good at letting everyone know I *do* need help and what I need in the upcoming months. I am still trying to figure it all out… My lack of organization is making it harder, too.
How I Am Feeling, How I Feel About It All, and What Is Happening To Me
Angel's Journal (RAW)
Lately it has been very hard for me to communicate my feelings, my severe pain, my fears, weakness, vulnerability, frustration, how hard this current brain tumor complication is for me, and most of all what my needs are. It's hard to utter the words as my world crumbles around my feet. My whole body is in a major crisis and my health is failing. It's embarrassing! I struggle to stay strong, looking back on my life as if I am standing on the edge of the abyss, the unknown, looking over my life. Wondering what my future holds, why have I been made to suffer all my life when my compassion runs so deep, my desire to "live" so strong, and my desire to make all medical cannabis patients safe.
In August of 2009, I started to approach this like the activist I am, as I did when I sued the DEA and the Attorney General of the United States in 2002. I studied my enemy, carefully made a plan, gathered the tools I needed, assembled the army, finding the best captians and generals I could find at the time, waited for the right time to strike, and then took the step forward. All the while doing my best to be one step ahead. Working towards ending injustice, even at my own risk. Only I realized extremely quickly that I could not attack this situation in this manner. Sometimes reality sucks!
I am used to being a very strong person with the ability to face any given challenge no matter how hard it appears to be. I took the steps needed to move forward. Now and since July 21, 2009, I have been at the most vulnerable and sensitive point I have been in many years. I find it hard to make decisions, wondering if it's right or not. It's a big challenge for me. I am really not sure how to deal with all this. I will do my best to explain how this plagues me. I feel like I am falling over myself in a big struggle to admit - to myself, not only all of you - that I can't seem to do the simplest tasks including organize for myself during this phase of my health crisis.
It's extremely difficult for me to ask for your help. Many of you are used to me doing it all even when I am not well, you have seen me plow through obstacles making it look easy. When you saw that, you never really knew how hard those efforts were for me because I hid it. Those of you on the front line with me saw my tireless efforts and it worked like a charm, many of you forgot how my conditions affected me because I held my poise.
I am sure you do not realize that this time is different for me. This time I am not able to be my own advocate this time, I am not able to plan, prepare, or execute a fundraiser or benefit to help me raise the funds I need to hold me afloat in the months to come. I spend most of my time in bed because my tumor is choking everything below it. My body is in so much pain, every single muscle hurts all the time. My other medical conditions are being triggered by the tumor and the symptoms caused by the tumor. It's all I can do to sleep, eat, cope, de-stress, be present, work through my pain, and loneliness. There are times I can't do any of these things. When I have a burst of energy it's a great thing but very short lived. Plus, I am alone, no boyfriend and no husband to help me, to hold and comfort me. During my reflection I realized the one thing I have longed for in my life is real love! It's not something you look for. I believe true love just is.
In the past couple of months, I have been at my weakest state of mind, body, my spirit is unsettled, and my light is not as bright these days. It's still there but just not as bright, with glimmers of bursting light. My light has helped serve me well to create a mark in history. It's a place I find comfort when I am lost. It helped me get my message out across the media of the world. It helped me change the hearts and minds of America regarding medical cannabis so now most of the USA now has heard about the medical cannabis issue. Even when I am very weak it shines through me. I have been very grateful for my over bright light. I use my light to hide my pain, suffering, my everything, but this tumor and its new cysts are making my light dim right now, as is the negativity some of my family and friends have put upon me in recent months. I am a fighter, I will beat this...without your conflict, please!
My conditions keep getting worse. At the beginning of August the tumor and cysts had grown, damaging the nerve to the point I can no longer chew. I have to blend all my food. My diet for the past few weeks has consisted of the same blended soup every meal. One gallon of ice cream per day blended in a milk shake with a little creatine monohydrate, used to build muscle. I am also eating Ensure, pudding, applesauce, and mushy fruit. It does not leave room for much else. You would be surprised how gross it is to eat the same soup for two weeks. I gag it down after about 3-4 days. I am dropping weight pretty fast. This has me very concerned as I have a life-threatening wasting syndrome and don't get hungry nor do I hold my weight, that's why I am so thin. That's one reason I need cannabis.
For the past two years, when anyone asked me how I was feeling I always avoided their question. I did the same thing I do when I am in a media interview: I control the spin. Never really answering the question, then telling the story I wanted people to hear, so I simply said I was hanging in there. It worked every time and the person moved away from that topic all together. I spun my brain tumor for three reasons: First, it was because I felt so sick from the tumor and the radiation side effects that were kicking my butt... Second, it was my way of hiding my pain from everyone, even myself when needed. And third, it was a way to live my statement after radiation which was, "I am living every day as if it where my last." My way of coping: have fun, not sweating the small stuff, and not thinking of how much pain I was in. I was too busy living my life to stop and look at my life clock. Besides, the old boring tick tock is not the beat of *my* clock. Plus, it was an attempt to live a more normal life.
If you think a negative thought like oh, my god, I have been in so much pain every day for years, you become that pain. The problem is that now I am in so much pain I can't handle it. It is at the point that I can't bear it anymore. I understand this is not always easy and sometimes I down right fail to hide it and to stay positive.
When I collapsed on July 23, 2009, in front of 70 friends at the Woodstock planning committee, I thought it scared some people so I decided to come out of hiding and tell everyone how sick I am. I knew I would need some help in the months to come.
What are Episodes and What Happens During an Episode?
In July 2009, I started having complications: my eyes roll back in my head, my face droops like a stroke, my speech slurs, and other things. One day I tried to chew and my jaw locked shut with food between my teeth, staying that way until the muscles in my jaw released so I could open my mouth. I couldn't even force it open. This has slowly been getting worse in the last 6 months, and has taken away my ability to chew. Now, these episodes are getting worse, happening more often, and lasting longer. Each episode is different and sometimes the episodes are triggered for instance by me trying to chew, drinking, or even look to the left. Sometimes it just happens without a trigger and without warning! When I go for a period of time without them when I do have one they hit much harder.
Here's what happens during a typical episode: Sometimes my jaw locks and sometimes it does not. My eyes roll back in my head so I can't see. The left side of my face droops and spasms, my jaw shifts to the left, my speech slurs, sometimes my jaw locks shut and I can't open it no matter how hard I try. Sometimes my neck drops back so I can't lift it, sometimes I have difficulty breathing or I choke on my tongue. Sometimes I have a hard time walking and moving when people try to help me to a safe place, sometimes my body gets weak, affecting my motor skills, and it's painful! Sometimes all these things happen at the same time, lasting longer than an hour. It does a few other things too. I am having many symptoms going all the way down my neck to my shoulder. The problem with the growth of these tumors is that it's putting pressure on other cranial nerves and other parts of my brain, which is a big concern. I have a constant never-ending extremely painful headache with tons of pressure from brain swelling, tumor growth, and the cysts' growth. The whole left side of my head hurts so bad it's hard to touch that side of my head around the tumor area.
Brain Tumor Background
In June of 2007, I had radiation treatment. For the past two years I have had an extremely difficult time dealing with the pain and all the side effects, plus the complications which started last summer. These made me cancel a trip to Jamaica with a friend ‑ well at least I have a passport now. The headaches are so intense I can't explain how painful they are but they make a migraine look like nothing. I am an expert at handling heavy overloads of high pain levels! I would as normal hibernate during the 6-8 weeks of side effects then pop up ready to go dancing…
The funny thing about a brain tumor is you can't see it, so out of sight, out of mind. Many people say, "Angel does not look sick!" Which is the same thing the feds say when they see younger people going in a dispensary. What does illness really look like? I am trying to get a photo of my tumor so you can see it. I stopped even telling my daughter, who had always been there to help, when she moved to Southern California. Later she told me it was a clue to her something else was wrong with me.
I collapsed July 5, 2009. For two weeks I could not stop running to the bathroom to get sick, I was so very ill. I just kept getting worse and worse. By this point I knew something was very wrong! I kept saying to myself, "what the hell is wrong with me?" On July 11, I went to my daughter's bridal shower and had a bad episode right in front of everyone. That took me out of hiding. I had been trying to keep it from her because I wanted the focus to be on her and her beautiful wedding day. I wanted to wait until after my daughter's wedding on August 8th to go see my specialist to find out what was wrong with me. My daughter however insisted that I go see the doctor as soon as possible because she noticed my episodes had gotten worse than in the past. Darn, the jig was up.
On July 21, 2009, my world was rocked and came unhinged when I went to see my brain tumor specialist Dr. John Adler, Jr. at Stanford University Hospital. I found out the radiation treatment from June 2007 had failed! I am the first person to fail radiation treatment by the Cyberknife. Doctor Alder created the Cyberknife, which is being used all over the world. He is one of the best brain tumor specialists in the US, possibly the world. I was utterly shocked to find out my tumor was growing. I now had several cysts growing around it. Tears rolled down my face as I silently cried. While talking to my doctor, I started singing, Doctor, Doctor, Give me some news, I got a bad case of headache blues. My doctor looked at me like and you're trying to be funny? I just could not comprehend what he just told me, and my friend was in shock too. All I could think about was I want to go dance. Can't deal with it, just go dance. Read more about the histroy on the Cyberknife and Dr. John Adler. Read about Stanford's Cyberknife patient care.
Feel free to view my brain tumor MRI if you're interested if not its ok too!
