tag:blogger.com,1999:blog-70760742011-08-31T08:07:18.889-07:00My journey through a diagnosis of low-grade glioma brain tumor--mythoughts, feelings, experiences, wants and desires, and fears/terror. I received this diagnosis on May 21, 2004. On October 7, 2004 I received a change of diagnosis--it's unlikely to be a brain tumor. I want to share this journey with you.Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.comBlogger331100tag:blogger.com,1999:blog-7076074.post-1097349412666409922004-10-10T13:12:00.000-07:002004-11-24T18:05:08.786-08:00

Take your time. Even if you are in the emergency room -- find out if surgery is essential to keep you alive right now. If it is, have brain surgery. If not, take the time to visit at least two neurooncologists and two surgeons from different institutions. Even if you have to travel. I have been amazed at the difference in focus and recommendations. What you learn could dramatically improve your

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com12tag:blogger.com,1999:blog-7076074.post-1097351497929299002004-10-09T13:36:00.000-07:002004-10-09T14:02:58.946-07:00

Low Grade Glioma-- shall I have surgery? Some thoughts and ideas I encountered along the way: Are you sure it is a tumor? Doctors can differ. MR Spectroscopy is not real reliable yet at distinguishing between non-tumors and tumors.Is it possible to remove 100 percent of the tumor? (Not 100 percent of tumor cells -- they're always some cells that leave the tumor and travel to other parts of the

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com2tag:blogger.com,1999:blog-7076074.post-1097353038470173632004-10-09T13:00:00.000-07:002004-10-09T14:03:59.046-07:00

I was really scared on October 7, 2004, the day I went for a second opinion from a second neurooncologist. I awoke at 4 AM and stayed awake for three hours. Did you know that Coach is on at 5 AM? I think I found West Wing on at 6 AM as well. I was sure surgery would be the recommendation and I was both okay with that and terrified. A finally fell back to sleep for 2.5 hours. At midday, my friend

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com2tag:blogger.com,1999:blog-7076074.post-1097347006668607782004-10-09T11:09:00.001-07:002004-10-09T12:17:51.650-07:00

Being told I had a brain tumor was the scariest thing that ever happened to me in my life. The first doctor I saw advised brain surgery. The second was opposed, strongly opposed. And I was totally confused. And I kept asking -- what will be the impact of removing a tumor in the right front alone? Will it affect my feelings? My ability to relate to others? I was told there would be no impact,

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1094011793041277922004-08-31T20:49:00.000-07:002004-08-31T21:09:53.040-07:00

I don't want to let fear decide my course of treatment for my low-grade glioma. As a child I did not receive the support I needed when I was in pain or encountered problems. As an adult I get triggered when I am trying to receive support from another adult and they don't see my pain, my hurt (especially when I am feeling scared and vulnerable). This happened last week when I went to see a

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com2tag:blogger.com,1999:blog-7076074.post-1094012198578693812004-08-06T21:10:00.000-07:002004-08-31T21:16:38.576-07:00

I got the results from the Tumor Board today. Given that my tumor has not grown in nine months it is highly likely that it is a low-grade glioma. The results of the MR Spectroscopy strongly suggest that it is a tumor (I was hoping it was a non-tumor, i.e. something else and not life-threatening). I asked my doctor what the chances are that the tumor could be a grade III. He said that nine

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1090597762306139012004-07-23T08:45:00.000-07:002004-07-23T08:49:22.306-07:00

I went to a wonderful conference called "Cancer As a Turning Point."  It was about healing.  Healing journeys presented the conference, and it was free to all participants :-).  I gained a sense of hope and strength from being in a large auditorium with many other cancer patients and survivors and learned about new ways to think about an approach cancer.  They did not say "you caused the cancer."

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com1tag:blogger.com,1999:blog-7076074.post-1090597526966321962004-07-23T08:41:00.000-07:002004-07-23T08:45:26.966-07:00

I've just been off work for three days, recovering from the stomach flu.  After the initial "events" it was really wonderful.  The first day all I can do with sleep -- not do anything, not think about anything.  The second day I watched TV and slept.  The third day I was up in about more and feeling stronger.  Today I go back to work.  What a blessed break from thinking about the cancer, from

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1087750337135361942004-06-20T09:45:00.000-07:002004-06-20T09:52:17.136-07:00

I'm not having surgery. Based on what I know now that is my decision. What a relief. The combination of the neurosurgeon's opinion and the sense of urgency I sensed from him stimulated fear and confusion in me and the thought "wait a minute, what is going on, this is so different from the other doctor." I was thrown for a loop. The fear and confusion I felt motivated me to learn a lot and

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com1tag:blogger.com,1999:blog-7076074.post-1087749945072304702004-06-20T09:35:00.000-07:002004-06-20T09:45:45.073-07:00

Later yesterday evening I remembered something else the neurooncologist said -- three doctors have recommended that you don't have surgery. And he repeated that. Last night I was sensing it was a hint-- that the doctor did not feel the freedom to disagree with the neurosurgeon so he gave me a hint. Now I'm wondering, with something so important would he really take such an indirect route? I'm

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1087699659999811512004-06-19T19:34:00.000-07:002004-06-19T19:47:40.000-07:00

So here's my summary. If I magically knew my tumor grade -- 1. Non-tumor (learn from test): no surgery 2. Grade I: no surgery 3. Grade II: no surgery 4. Grade II with III (or III): surgery If it is a tumor, here's what I have learned: 1. Not relevant 2. Grade I -- less likely given my age 3. Grade I or II -- 70%-85% likelihood 4. Grade II mixed with III (or III) -- 15% likelihood, could

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1087698889603397272004-06-19T19:30:00.000-07:002004-06-19T19:34:49.603-07:00

What if I magically knew it was a grade I tumor? I would wait and watch without a doubt. The tumor-related risks are small since my tumor is not close to important parts of the brain. And if it were to start to grow it generally would be slow and I could have it taken out when needed, if that ever happened. What if I magically knew it was a mixed grade II with III cells? Then I would have it

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1087698602632933572004-06-19T19:15:00.000-07:002004-06-19T19:30:02.633-07:00

Controversy surrounds treatment of grade II tumors. If I magically knew that I had a grade II tumor, with no III cells in it, what would I do? I know that they can transform into grade III tumors. I asked to the doctor I saw on Wednesday -- does it matter, in terms of long-term survival, whether I have such a tumor out now or later when it starts to change? His answer -- "we don't know." He

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1087697694438600302004-06-19T19:06:00.000-07:002004-06-19T19:15:08.613-07:00

Wednesday I saw the neurooncologist at the Cancer Center. I'm going to make him my new doctor for the brain tumor -- he was empathetic, knowledgeable, thorough, and caring. He did not push like the surgeon did. He answered my questions. I am being scheduled for a Magnetic Resonance Spectroscopy -- a fancy MRI that can distinguish between tumor and non-tumor. I have been confused about benign

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com6tag:blogger.com,1999:blog-7076074.post-1087697181337529522004-06-19T19:02:00.000-07:002004-06-19T19:06:21.336-07:00

I never thought I would walk into a Cancer Center in my life. Then Wednesday I noticed that was exactly what I was doing when I went to see the neurooncologist at the Medical Center. I do not know if I have cancer or not, but taking those steps into that Cancer Center felt like a demarcation in my life.

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1087696915012784472004-06-19T18:51:00.000-07:002004-06-19T19:01:55.013-07:00

I am feeling sad and afraid. I have this tumor in my head and I don't want it there. I want someone to help me figure out what to do. And I so wish that the literature had more clarity on what to do. I feel overwhelmed. I looked all day today on the Internet for answers. They aren't there. I did learn a few more things. And found a doctor whose name appeared fairly often on articles about

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com1tag:blogger.com,1999:blog-7076074.post-1086467581867815752004-06-05T13:26:00.000-07:002004-06-05T14:02:27.660-07:00

Wow. What a week. Last night and early this morning my brain and body was running, running very fast. Then I talked to a friend who listened deeply to the pain I feel because I want to be safe and healthy and I want clarity around the best course of action to take to achieve this. So now I've slowed down a bit. Walking, walking. I got to a place of believing that my need for clarity around

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com3tag:blogger.com,1999:blog-7076074.post-1086471024257163092004-06-05T11:29:00.000-07:002004-06-05T14:56:16.406-07:00

As I am seeing it, doctor one and doctor two have different beliefs, based on their view of the research and their assessment of risks, resulting in different recommendations. Referring primarily to grade II tumors (and mine could be less serious) here is my summary: Survival Rate: -- Doctor one believes that surgery plus radiation improves survival rates over waiting and watching(1, explained

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1086470579552040022004-06-05T10:09:00.000-07:002004-06-05T14:32:31.113-07:00

More confusion. I saw the first doctor (the doctor I saw May 21st who recommended surgery) on Friday armed with questions about choice of treatment. He was more difficult to talk to then the third opinion doctor. And he is extremely knowledgeable which I really like. When I would start with a question such as, "if it's a glioma II then" he would interrupt me and say -- what type of glioma II,

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1086469748881313942004-06-02T14:02:00.000-07:002004-06-05T14:09:08.880-07:00

Today I got a third opinion. With my new information about the controversy in hand, I was able to ask more questions. I liked the doctor, he was easy to talk with. Unfortunately, he could only read the MRI I had six months ago. I'll be returning to him to have him read the newer MRI as well, I think. He said that if this tumor was in his head he would not remove it now. He thought it likely

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1086467949707745652004-05-31T13:34:00.000-07:002004-06-05T14:59:10.760-07:00

After feeling really up on Friday -- this is probably nothing to worry about and just get yearly scans -- I began to wonder how could two excellent doctors, both chiefs of surgery, come up with such different opinions? I felt like this person hanging in mid-air not knowing what she was going to fall down on when whatever was holding her up disappeared. I felt overwhelmed and scared and

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1085776101068446872004-05-28T13:13:00.000-07:002004-05-28T13:28:21.066-07:00

I am relieved. And mad. I believe I can now get on with my life. I really got scared when the first doctor told me I had received the wrong diagnoses the first time. And that I needed surgery. And some of that fear is still with me. I am breathing a big sigh of relief. At the same time, I don't think I will be really settled on this until I go back and talk to the first doctor and find out

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com2tag:blogger.com,1999:blog-7076074.post-1085774898404834782004-05-28T13:03:00.000-07:002004-05-28T13:08:18.403-07:00

This doctor recommended that I get an MRI annually for the next three or four years. If no change is seen then it's not a glioma and I don't have to get any more brain scans. I have a 10-20 year period of possible transformation of a low-grade glioma to a higher grade. If I do have a low-grade glioma we'd see a change in two to three years.

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1085774593564603732004-05-28T12:53:00.000-07:002004-05-28T13:11:36.456-07:00

The doctor I talked to today said that surgery is not a cure. Surgery provides a definitive diagnosis and "debulks" (makes smaller) the tumor. It is believed, but not proven, that fewer cancer cells are easier to treat with radiation and chemotherapy. If I do have a stage I or II glioma surgery does not remove all of the glioma cells. Some cells will be remaining. And if they're going to

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1085773998859114712004-05-28T12:45:00.000-07:002004-05-28T13:12:54.106-07:00

I saw the senior doctor at a neurosurgery practice associated with the largest private hospital in my area. His opinion was completely DIFFERENT than the first doctor. Amazing. Like the other doctor he said the only way to be sure what the tumor is is to operate. Unlike the other doctor he said that the MRI gives us a lot of good information and, from it, he can tell that the tumor is not

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1085586090041856332004-05-26T08:32:00.000-07:002004-05-26T08:41:30.043-07:00

Tuesday, May 25. I stayed home from work today because I felt awful. I made phone calls and lists and that felt really good. I contacted the Brain Tumor Society. They have a social worker you can talk to and a volunteer program that matches people who have been through brain tumor treatment with those who are starting out (or wishing support at any stage). I asked about getting second

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1085585560873331882004-05-26T08:22:00.000-07:002004-05-26T08:44:09.296-07:00

This calmness emanates from listening to and comforting my inner child, and from telling a friend that I am really mad about all of the us. A couple of days ago I went inside and saw that my inner child was sitting there, blood red all over, and SHOUTING AT ME. "You are supposed to keep me safe. You didn't do that. I am furious at you. I hate you." I tried to touch her and she would not let

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1085584930381130982004-05-26T08:19:00.000-07:002004-05-26T08:22:10.380-07:00

Thank goodness, I slept last night. And my sore throat is nearly gone. And my body is nearly relaxed. Ahh...

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1085339019544962892004-05-23T11:32:00.000-07:002004-05-23T12:06:59.740-07:00

I've been sitting at my computer and listening to Prairie Home Companion and crying when hearing the soft gentle singing of Celtic songs. My body is sad all over. It's a sadness without specifics, without specific thoughts going with it. I have fibromyalgia resulting in me being weak, fatigue (I need 12 hours of sleep a night), and minor injuries such as sprains and tennis elbow that take

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com1tag:blogger.com,1999:blog-7076074.post-1085255821016722802004-05-22T12:51:00.000-07:002004-05-22T12:57:01.016-07:00

I wrote down all the dates of my nieces and nephews performances -- it's the end of the school year... I want to make as many as I can. This family is very dear to me. I'm throwing out the window my usual conservative approach to life -- going out very few weeknights. The surgery will probably go great, and hopefully it won't be cancer, but if the worst happens I want to live life as fully as

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1085252585585750922004-05-22T11:58:00.000-07:002004-05-22T12:51:34.286-07:00

At 9 AM I wrote -- So what do I do today? Part of me wants to go to the Nonviolent Communication training on love and intimacy. Part of me wants to stay home and write and let the feelings bubble up and be with myself. And make phone calls. This is the pits. It's now noon and I am writing my blog. I have chosen to stay home for the morning. It feels good. I got a call from Gina, my mom's

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1085252289573598712004-05-22T11:55:00.000-07:002004-05-22T11:58:09.573-07:00

Last night I called my mom. She was great. After I told her she asked me whether I wanted to be alone. I responded -- what are you doing tonight? I knew I didn't want to be alone. She said, well, I was going to dance but I need to do that. How about I come to your house? And bring dinner? She called back a couple minutes later to say that my nieces were in a concert -- way out in the

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com0tag:blogger.com,1999:blog-7076074.post-1085243170313915862004-05-22T09:04:00.000-07:002004-05-22T11:55:11.500-07:00

I sat down at my computer this morning to look up the Brain Tumor Society web page and thought -- this isn't fair. Why has this come into my life 3 weeks after my dad died from a Glioblastoma Multiform IV brain tumor...? My father worried about everything. I realized as I got out of bed that whether I worry about the outcome of the surgery or not the outcome will be the same. I'm afraid of a

Mariehttp://www.blogger.com/profile/18011725103254652700noreply@blogger.com2