Last update 6/19/16
Oligodendroglioma - 2003
I was first diagnosed with my brain tumor in 2003. It all began on a beautiful sunny day, while I was working at our place of business. My husband and I own a restaurant and Inn in the beautiful Adirondack Mountains of upstate NY. I happened to be bartending this day and the restaurant was extremely busy. Three nice gentlemen walked into the bar and asked if they could have lunch on our outside deck overlooking the lake. So I proceeded to take care of them since every one else was busy. I managed to serve them their lunch and headed back to the bar. And then it happened. A strange sensation in my head had me confused and scared. I could not shake it off. I ran to the lady's room and kept staring at myself in the mirror. I was able to walk, but everything started to shut down in my brain. I was in control of the waitress checks but I could not work the cash register. I just stood there, unable to speak or perform any simple tasks. Finally someone noticed my distress and called my husband out from the kitchen. He asked me if I was okay. I could not answer him. I just stood there staring at all of the money that needed to be rung up. I can't remember if I was frightened, but I don't think I was. My brain was shutting down and I succumbed to the feeling. Then everything went black. When I finally woke up I was staring at bright fluorescent lights above my head. My husband was at my side. The doctor arrived and there were a million questions. What's your name, what is your husband's name, do you have children, etc, etc, etc. At first I got the answers wrong, but in time I became more cogent. I was in the hospital for three days undergoing numerous tests and they decided that I had had a stroke which triggered my seizure. But there was absolutely no neurological damage. In fact I felt great. I was put on seizure medication and was told to change my lifestyle. I was not allowed to drive so I walked to our place of business every day. Luckily it never rained. I felt lucky to have survived a stroke. During this time I developed a serious rash and my neurologist decided to stop my seizure med. He said I was allergic to it and since I had a stroke I would probably not have a seizure again. But my luck ran out or maybe in the long run it didn't. You'll see why I feel that way. Okayâ€¦.so eight weeks later to the day of my seizure, the rain was pouring down and the thought of walking to work was bothersome. So I took it upon myself to drive the short mile to work. As I pulled into the parking lot, I could feel that strange sensation in my head again. I knew what was coming and this time I was really frightened. I was able to put the car in park but could not figure out how to shut it off. I got out and ran into our business, pushed open the kitchen door and yelled for somebody to help me. My husband was frantic. The ambulance was called once again. We live 50 miles from the nearest hospital. Halfway down to the hospital I had another grand mal seizure and this time I cardiac arrested. The paramedic brought me back to life in the ambulance. I owe my life to him and eventually got the chance to thank him. So here I was againâ€¦..under the bright white lights but this time in ICU. Lots and lots of doctors, and more and more tests. As I lay there, I could hear the doctor in the hallway speaking to my husband. I 'm pretty sure she has a brain tumor. I couldn't believe my ears. A brain tumor. How the hell did I get that? To this day I still don't know but it was true. Now they wanted to make sure it was the primary tumor and hadn't started somewhere else. Heart doctors, lung doctors, gynecologists all came to see me. Pet scans, MRI's, cat scans finally determined the tumor was all by itself. My neurologist came to see me and he was extremely upset. He felt it was all his fault for taking me off the seizure med. I told him not to worry because if I hadn't had the 2nd seizure the doctors would never have found my brain tumor. He felt a little better after we spoke.
Since the hospital I was in was not equipped to handle my condition, I was medivaced to another hospital in Albany and stayed for one night. The next morning I was told there was nothing they could do for me and suggested I be in a University setting, such as NYU or Columbia Presbyterian. Easier said than done. But God was on my side. My husband (Neil) knew a top radiologist who was able to get me an appointment right away with a Dr. Patrick Kelley; one of the world's top neurosurgeons. I was to see him in three days. Since we live five hours away we needed to get a hotel room and stay overnight. This was not an easy task since we have a seriously handicapped son. But I made the necessary arrangements for my son and we were on our way. My visit with Dr. Kelley went well. He spoke about doing a biopsy the next Monday. He explained a brain mapping procedure and what I would need to go through. Quite honestly, I did not hear a word he said. Thank goodness Neil was with me. All I could think of was lying on a beach in the Caribbean looking at the palm trees swaying in the breeze. We left his office and that is when I asked Neil what Dr. Kelley said. I needed to be back to NYC in six days and have these procedures done. I was nervous, and quite honestly had no idea what I was in for. If I had fully comprehended what was going to happen I might have chickened out. Everything was happening so fast. I suppose there was no time to waste. We arrived on Sunday night and I could not sleep. At 5am we woke up and walked to NYU in the darkness. NYU is a massive labyrinth of hallways, but luckily Neil knew where to go. I was ushered into a room after they called my name and was quickly sedated. When I woke up I could feel a tremendous pain in my head. They had put 4 screws into my skull to secure some sort of halo on my head to prevent me from moving my head. This started to become the worst day of my life. As I sit here writing, I can still vividly remember that awful pain. It was like someone was driving nails into my skull with a pounding hammer. First was the MRI. God I hate them. Then the cat scan. That was the worst. Trying to lift my head just to get on the table was absolute torture. I asked for pain medication but none was to be had. I started to cry. The nurse was not very empathetic. She told me that if this hurts wait until you have the angiogram. I almost started to panic. I kept begging for pain relief but was told I needed to be completely lucid for my last test. The angiogram was actually the most comfortable I had been. They cut an artery in my leg and inserted a tube up into my brain. The doctors were so nice. Then a dye was shot up into my brain and I was told to shut my eyes and no matter what do not open them. It was incredible. A major light show behind my eyes seemed to light up everything in my brain. I found it fascinating. They did this twice and it was over. This was the most important part of the brain mapping. Next they had to compress the wound in my leg. That took 20 minutes and was vey painful as this young handsome, sympathetic nurse apologized for hurting me. I told him it didn't even compare to the horrific pain in my head. When he was done, I asked if I could get this halo off of my head. Unfortunately, Dr. Kelley was called into emergency surgery and I had to wait for him to be done, because he was the one to remove the halo. So I was wheeled into another room and suffered in silence. I was supposed to only have the halo on for 2 hours but I did not t have it removed until 7pm and it had been screwed into my head at 6am. Like I saidâ€¦â€¦.I will never forget that pain. Finally someone came to get me and wheeled me downstairs towards the OR. Dr Kelley arrived and apologized for the length of time I suffered. But he seemed excited. He told me that after the brain mapping, he felt he could get the tumor and would like to perform a craniotomy instead of a biopsy. He just needed my permission. I told him that was fine as long as he could get me some drugs. Right away a male nurse arrived calling himself Dr. Feel Good and that is all I remember until I woke up.
I remained in the hospital for 5 days and Neil was by my side the whole time. I never even had a headache. It was time to go home, but I had to be back in 10 days to have the staples removed and find out the pathology report. I remained on steroids to reduce brain swelling. We went home. My head was wrapped tightly in a pressure bandage. I was tired. I had a caregiver to help me with my son. I was not permitted to lift anything heavy. Being home was a welcome sight for me, but I knew I had to go back to NY the following week. I kept praying that my tumor was not malignant. We made the trip once again and as I sat in the doctor's office waiting to hear my name called, I kept thinking of better days. Neil and I have had many wonderful trips together and I was praying there would be more to come. My name was called. We entered Dr. Kelley's office and he seemed to have a smile on his face. He proceeded to remove the staples from my head but then hit me with the bad news. My tumor was malignant............an anaplastic (grade III) oligodendroglioma. Oh my God, I am going to die is all I could think. I asked him if I was going to die soon. He said no, but I would need to do the protocol that Dr. Gruber would set for me. Dr. Kelley said I could survive another 20 years if I followed Dr. Gruber's orders. Dr. Gruber was an oncologist at NYU and Dr. Kelley was sending me upstairs to confer with him. Neil and I went upstairs to see my new oncologist. Dr. Gruber told me that if I did what he said, I might be okay. He said I could do this regimen where I lived but the doctors there had to stay with what he told them. I was to receive chemo once a month for 6 months. The only problem was that it was a very high dose of carboplatin. He had done clinical trials with this and had good success. He told me the doctors would be uncomfortable with this high dose, but I had to insist that they give it to me. Then when that was done I would receive brain radiation every day for 7 weeks. I felt deflated but was determined to fight for my life. And fight I did!!!! I suffered immensely through the chemo. Even though it was once a month I would be sick for days. But like everything else it final ended. Then the brain radiation. Not painful, but exhausting as I am sure you all know. I was so happy to have that over with.
Life resumed but not like it used to be. I now have terrible anxiety every time I need to go to the doctor. I know I am just beginning to have side effects from brain radiation. I hate MRI's. I hate cancer! But I have survived for nine years now and most of the time I enjoy my days. I do not work anymore and the funny thing isâ€¦â€¦..most people do not understand why. They have quickly forgotten the traumatic experience I had and the fact that I live with the fear of it returning. Even my husband forgets at times and then I remind him. But he does see the problems I am facing now and how hard I fight to keep my life normal. I am happy to be alive! I am going to see a new neurologist next week and I am sure another MRI will be ordered. So my fear returns. Hopefully next time I write I will have good news.
Anyone who is interested can read my book. I wrote it while I was trying to heal myself. The title is The Winter of MY Repose by Linda McGovern. You can find it on amazon.com. God bless all of us and remember what Maya Angelou saidâ€¦â€¦.."I can be changed by what happens to me, but I refuse to be reduced by it."
I am a survivor for 10 years and just hope I continue with my life. Yes, my life has changed but not significantly. In fact, my oncologist released me from his care last year. The one thing I do is pray that the tumor never comes back. And, because of that fact, I do have tremendous anxiety. But I am learning to live with it. I am one of the few lucky ones and I thank God every day for giving me more time. No one knows what the future holds so I take each day with a renewed outlook on life. It is not always easy to not plan the future, but having a severely disabled child has taught me to appreciate the little things that life has to offer. I do have residual side effects from my brain radiation and I do not like it. I have developed something they call essential tremors but medication has helped. I am sick of taking pills for seizures and the essential tremors, but I realize that is a small price to pay for surviving a brain tumor. I am turning 60 this month and keep on hoping that I will survive long enough to watch my grandchildren grow up. Meanwhile, I enjoy every moment with them. But the biggest love of my life is my disabled son Kevin. I swear he keeps me going. He is the light of my life and I think everyone needs to have that kind of love in their life. I am truly blessed and I believe hope and love are the best cures for everyone. So that is my update and now Spring has sprung up here in the Adirondack Mountains and brings a new feeling of life beginning again. We should all be thankful for life's small pleasures.
This past month has been a nightmare for me. It has nothing to do with my brain tumor but, nonetheless, has been very trying. My 41 year old son had to have open heart surgery due to an infection that attacked his heart. He is finally recuperating at home with us and the journey will be long. Still taking IV antibiotic drugs intravenously and I am nursing him back to health. I just pray that his recovery will be good. As for me, I have nothing new in my life as far as my brain tumor is concerned. I am still a survivor for 11 years and so happy to be here. The only thing that is new is that I have been diagnosed with essential tremors which affects my handwriting and at times makes my head shake. I hate it but can live with it. I truly believe it is a side effect of brain radiation, but if that is the worst thing I have I feel very lucky. Not too many people get a second chance at life and I keep telling my son that. We all need to hold on to hope. Life is good. Thank you for keeping me on this site. I have received emails from people who have read my story and really enjoy that they feel they still have hope.
I have nothing new to report. It has been 11 years as a survivor and I thank God every day that I am still here. I wish the same good fortune for everyone else. I am truly blessed. Life can be good. I have no idea why I was chosen to survive this dreaded disease and my heart goes out to all who are suffering. I keep praying every day for a cure. But as for now I am truly thankful for my good fortune.
I'm not sure what I can contribute to my story. Things are happening to me
but I won't know more until I see my neurologist in March. My primary care
doctor informed me that I have been diagnosed with
chemically induced peripheral neuropathy. Something to do with my nerves. I am
confused about this but will know more in March. Suffice it to say I am having
trouble walking and accomplishing small tasks that most people take for granted.
My legs hurt all of the time. He said it was due to the high dose of carboplatin
I received 11 years ago. This disturbs me, but I must admit that I am happy that
I have been given these past 11 years. I am still surviving but I am not the
woman I used to be. Yes it is sad, but I am still here and enjoy every moment
with my family even though I find it difficult to go anywhere. My husband is my
savior. He does all of the shopping and helps me maneuver the stairs whenever we
do go somewhere. I am very self conscious about my walking. I feel like people
must think I am drunk, but I'm not. I am considering getting a cane. I know I am
62 but that is not old and yet I feel like an old lady. I often wish I could go
back in time to when I traveled and had a lot of fun. But those days are over. I
will continue to try and find a cure for this, but I don't think there is one
and that's okay. Just know that anyone who gets chemotherapy should really
consider what it can do to you. Catch 22 is what I think. Do it and give
yourself more time, but suffer the consequences. That is my story for now. I'm
sure I will have more to offer after my doctor visit.
This July, I found out my tumor is back and I have been going through a series of CAT scans and MRI's. Today I am waiting to hear from my neurosurgeon to find out what the protocol will be. Could be a craniotomy along with chemo and radiation, but I won't know until tomorrow. Suffice it to say I am devastated but trying to remain positive.
My brain tumor is back. In November, I had my second crainiotomy and fared very well. I was home in two days. I have been doing chemo since December. I just finished my 6th round of Temodar and I hate it. Makes me very nauseous and tired. I am due for another MRI in July. But my biggest challenge is how this tumor has affected me. It is on my motor strip and walking and keeping my balance is a serious issue for me. The surgeon was unable to resect the whole tumor which I have come to find out is not unusual. Having it come back is very common. But I can't complain since I was given 12 tumor free years. Well that is not actually true because the tumor never leaves. I guess it just stayed dormant for awhile. I knew something was wrong over a year ago but my neurologist didn't seem concerned. Not his fault. I was having tremors on my right side and he diagnosed me with essential tremors. He gave me medicine but they got worse. So an MRI was ordered and there it was. That little bugger was back and had caused some damage to my brain. They are hoping the damage will reverse but my oncologist doesn't think it will. Her main goal is to try and stop it from getting worse. I am still able to walk but with quite a bit of difficulty. My whole right side is affected. Kind of like having a stroke so I work at building up my strength. So far nothing has really helped. But I won't give up. You have no idea how long it took me to type this. I don't know what the next step is other than my MRI in July. I'm hoping to get a break from chemo for a few months. Just thinking about chemo makes me sick. So that is my story for now.