George - Diagnosed 1967 with Oligodendroglioma III
George Plym is the founder and president of WNC Brain Tumor Support in Asheville, North Carolina. He is also an eleven-time brain tumor survivor and has gone through ten procedures to try to eliminate those tumors! Plym has written a booklet entitled "What!...Again?" The booklet contains an account of his struggle to die of old age, not from a brain tumor! Here is a part of his story.
by George S. Plym
It all started in 1967. I like to think that I was a typical boy. I enjoyed fishing, hiking, and hunting. But my favorite of all, was baseball. As a matter of fact, it was on a baseball field when my journey started. A journey that took me to a place that no one should go on.
I remember it was a hot, muggy, typical Midwest summer evening, and I was playing baseball for the Spring Valley Little League All-Star team. Early in the game, a routine pop-up fly ball came to me. I was somewhat startled. As I looked up into the soft, fading light, there were two balls coming down to me! I missed the ball. In the next inning, a ground ball game to me, and again, I saw two balls coming to me on the ground. Again, I missed the ball. Something was drastically wrong. The double vision that had appeared that night was just the beginning of a lifetime nightmare. The next day, I was taken to the doctor. It didn't take him too long to figure out that the double vision was caused by pressure building up in the optic nerve. The tremendous headaches and Nausea were a clue also. The doctor went out in the hall to speak to my parents. Even though I was having vision problems, there was nothing wrong with my ears. I heard the doctor tell my parents, "I'm sorry, but your son has a brain tumor." Those words are devastating words to a parent and a 12 year old boy. Those words still haunt me and my parents today.
The tumor was removed through the skilled hands of Dr. Elwood . (Methodist Medical Center, Peoria, Ill) To kill any stray cells from the tumor, cobalt beam radiation bombarded my brain. The pathologist said that the tumor was an astrocytoma the size of an orange. It was then when we were told that I had a year, maybe two years to live. That was over 36 years ago! I'll call it number one, and that was in 1967. (Later we found that it was a oligodendroglima grade III)
The next five were similar, so lets go to the number seven. This is where is gets hairy.
Number seven (2000) just about killed me. After years of conventional surgery, the Gama Knife Surgery was used at Wake Forest Medical Center in Winston-Salem. While traditional surgery may deliver more immediate results, the Gamma Knife's long-term Prognosis is often comparable or better. In most cases, gamma knife radiosurgery immediately stops the growth of tumors, which shrink or disappear over a period of time. "Gamma knife surgery offers some patients the ability to maintain or improve Quality of life," says neurosurgeon Charles Branch, M.D. "People with lesions that were considered Inoperable or with health issues that made them poor candidates for open surgery are good candidates for this procedure. It is especially useful when conventional surgical techniques would pose a high risk, such as in the presence of other illnesses or when a patient's age prohibits standard surgery." (Wake Forest Medical Center in Winston-Salem)
So I was excited about the chance of removing this tumor without actually being cut on. You see, the Gamma Knife is not really a knife, but uses radiation with pinpoint accuracy to destroy tumors.
I went through the procedure in the first week of the new century, Jan. 4, 2000. I was somewhat excited because I knew that given enough time, eventually, there would be a procedure that would eliminate the need for open surgery. That time had finally arrived. Everything went well, and I was able to go home the same day that I had the Gamma Knife procedure. I didn't feel any different, but I thought that all of my troubles were finally over. Well...
Three days later, I had a major Seizure requiring hospitalization. The doctors felt that it was caused from swelling in the brain. I was put on steroids to alleviate the swelling. I was still having problems with seizures and I was in a lot of pain. The tumor was dying inside my head, but the dying tissue could not be absorbed by my body fast, enough causing pain, pressure on the brain, and seizures. The doctors tried several spinal taps to remove the pressure in my brain. A spinal drain was put in. The screams could be heard down the hall. I couldn't help it. That hurt more than the spinal taps, and they were no picnic either! Anyway, it caused more seizures.
Then a lower lumbar shunt was implanted. A lumbar shunt is placed in the lower back, and is threaded into the abdominal cavity. The lumbar shunt is safer if the surgeon feels that infection is a risk, and I was at risk for infection. I felt fair, and I went home.
Two weeks later, I started to feel bad again. By this time, I was very weak and very sick. And now, I was beginning to throw up and the seizures were more frequent. My wife, Diane, called Dr. Shaw, and he said to come the hospital, now! We drove (Diane did) to Winston-Salem from Asheville, a two and a half hour drive. I was in the back seat eating Vicodin and puking in a bucket!
A new MRI showed that I had now chemical meningitis. Dr. Branch didn't want to operate. He felt that he had "pushed the envelope" and was concerned about infection. Every time you get cut on, your lose your ability to fight infection in that area. Infection in the brain is worse than the tumor itself is. However, he had no choice but to operate to remove all the "junk" in my brain that had accumulated in my brain cavity. (Wake Forest Medical Center in Winston-Salem)
I made it through the surgery. When I was in the recovery room, I remember waking and talking to the nurse like nothing had happened. But when I was in ICU, the pain became unbearable. I screamed at the nurse to give me something for the pain. He said that I was maxed out on morphine, and could not have anymore. I have never, ever been in so much pain my life. I prayed to God, "Lord, You said that You would not give me more than I could handle. Well, I can't handle this pain. Please, make the pain tolerable, or let me die". In less than three minutes, the pain subsided and I was resting comfortably. Praise the Lord!
Two and a half weeks later I went home. I was weak and still nauseated. But it wasn't over...yet. The shunt was working well and I felt very alert with no pain in my head. For the first time in 30 plus years, I didn't have major headaches everyday, my head was clear, and the seizures had ceased! But the shunt, located on my right side, was killing me! Every step, every move, every breath hurt like I was being stabbed in the side with a dagger. The only way I could eliminate the pain in my side was to curl up in a fetal position and stay there. I kept thinking that if I didn't move, it would heal up and I would be O.K.... Wrong!!
One morning I got up to use the bathroom. As I got up, my legs would not hold me. I thought that maybe I over did it the day before (I was starting to walk to the living room from the bedroom) so I laid back down and used the urinal that I kept from the hospital. The next day it was the same or worse. I hobbled with my cane and sat in my easy chair, watching the birds. I had on the usual clothes, T-shirt and jogging shorts. That's when I noticed my right leg was swollen. Not just a little, but double in size. I was scared! I had remembered that the doctor said that if I had a loss of breath, or got swelling in the legs, go to the emergency room. My wife was at work and I could not drive myself, so I called 911.
The ambulance came and took me to the E.R. where they did an ultra-sound. They found a D.V.T. ( Deep venous thrombosis), or blood clot. The swelling was so bad that skin on my right foot broke and was bleeding. My upper thigh was so swollen, it pushed on parts of my body that should not been pushed on! (ouch)!
It felt like I was kicked, but the pain was constant. I was on IVs to devolve the clot, and then I was put on blood thinners (Coumadin). After more testing, Dr. Pekal ( Cancer Care of WNC) found that I had a rare blood disorder called "factor 5 Leiden mutation". It is a blood disorder in which the blood clots at a rate 60% faster than the normal person. Thus, I am much, much more Prone to thrombosis. After eleven days, I was released, although the swelling had not subsided much. It took six months before the leg was back to normal, or close to it, and will be on blood thinners for the rest of my life. So now instead of worrying about a brain tumor or a blood clot, I have to worry about bleeding to death if I have a cut!
I was still having a lot of pain on my side from the shunt. I was in a no-win situation. If I moved or walked, my side hurt. If I didn't move around, there was a chance I could get another blood clot...but my head felt great! I went back to Dr. Branch to talk about the shunt. He said that sometimes a shunt needs to be revised, or repositioned. We decided to just take it out. It did its job, and there was no need to have it if it was causing problems. So after the surgery for the shunt removal, I started to feel better immediately, although with the shunt gone, the headaches returned. I can put up with a headache, but I could not put up with the pain the shunt was causing! So after a slow, painful recovery, I felt well enough to "carry on" and function fairly well in society.
Even though people with brain tumors function fairly normal, there are thousands who have major deficits. The thought of a recurrence has become a reality for me. I was diagnosed with a brain tumor for the eighth time. (2002) Again, the Gamma Knife surgery was in order. This time, everything has worked out so far.
It may not sound like it, but I have had a great life! I have a terrific Mom and Dad. I have best sister in the world, Nancy, and a very supportive wife, Diane. I also have been privileged to have a wonderful step-daughter, Laura, and a son-in-law, Eric, whom have blessed us with a granddaughter, Elizabeth. She is sooo special! And now, another granddaughter, Anna is on the way! I love them all.
This is not a fare-well send off, by any means! I have a few goal to achieve yet. Some of them are to see Elizabeth in her prom dress, to be brain tumor free, and to die of old age!
I don't know what the future holds, none of us do. David M. Bailey sums it up in his song, "Live Forever" where he writes, " If there's 1 chance in 500, someone's gotta be the one." Well, I am one of the "1," and as sure as the sun comes up, I will continue to fight until this beast called, "brain tumor" is no longer!
Oh Oh. I spoke to soon. Your not going to believe this...I need to write another chapter. Yes, its back. On November 11, 03, another tumor was spotted on during my six month MRI. Again, its GK time(gamma knife). On December 2, 03 I had another MRI in conjunction with the GK. More tumors. All of those areas were nuked with the GK. I will under go chemo in the middle of January.
You know, as we read this article, I wonder, are there stray tumor cells in my brain still multiplying?... or at rest?...or dying? Those are questions that are asked by all brain tumor survivors. Our brain tumors always are on our minds. We can never rid the thought that we have a brain tumor (or had), and we get a real tense feeling when we get close to our MRI appointments. Nevertheless, I am thankful for the great technology and I still believe we are getting closer to a breakthrough! Hang tough!
In the last update, I had reported that I had a recurrence and had Gamma Knife surgery. What I did not write at that time, was that when I was dx in Noveber of 03, I told my doctor something that I never thought I would ever say. I told Dr. Shaw, "OK. It wins. The tumor wins. I am tired of fighing. Keep me comfortable and let me die." I couldn't belive what I was saying. But that is how I felt. Thankfully, my brain tumor group friends picked me up and got me ready to fightâ€¦again.
It has been six months since my update. Great things are happening! The tumor that appeared last November is slowly dissipating. The most recent MRI last week (7/04) shows that the Gamma Knife surgery in last December has killed the tumor. The outline of the tumor is still visible, but has taken a different look in color. A dark shade of gray much different than the contrast that eerily glowed as we viewed it six months ago. And just in case that there are some unseen abnormal cells that may cause a recurrence, Dr. Lesser and Dr. Shaw at Wake Forest Comprehensive Cancer Center in Winston-Salem has started chemo. Temodar 440mg a day for five days, blood work two weeks after, and start all over in two more weeks. It is a real roller coaster ride! But if it works, I am all for it.
People ask me what can they expect on Temodar. I can't answer that. But I can say how it has affected me. The first night I took it, I was nervous. I didn't know to expect. The next morning, I thought I would be sick. I wasn't. Nor did I the second day. A little queasy the third and fourth days, and a lot queasy on th fifth and sixth days! The anti-emetic, Zofran really helps. The Zofran had an unpleasant side effect for me though. Constipation! Stool softener helped. I also have noticed that pills don't go down as easily as they use to. It is like my throat says, "What are you trying to put down into my stomach? This stuff is toxic!" So I talk to my throat and stomach and tell them, "Open up! Got some good vitamins for you. Mmmâ€¦this is sooo I pray that all of you brain tumor survivors and caregivers to muster all of the strength and courage needed to fight the fight and win the battle. "The only time you lose, is when you quit trying." (Ditka)
Time for a new update! It has been six months since my last update. Obvious, I'm still kicking, but not quite as high! I have good news and bad news. The good news is that the tumor that was found about 14 monthsâ€¦ ago is dead! There is no doubt that the gamma knife surgery has again saved my life. The Leksell gamma knife has stopped three tumors dead in its tracks, allowing me to enjoy life which I so cherish. I am also very thankful for the Temodar which seems to stop any renegade cells that may have been lurking outside of the perimeter of the gamma knife target area. I still have two more chemo cycles. Part of me says "I sure will be glad this chemo is over," but in other part of me says, "I am afraid that stopping the chemo will invite a recurrence." That's is when I remind myself that I have turned these brain tumors to the Lord a long time ago, and that I need to continue trusting Him.
Now for the bad news...Although the area of the original site and subsequent tumors have been cut, radiated, nuked, chemically altered, prayed on (and cursed as well), a new tumor has appeared in a new location. It is not an oligo-astrocytoma as the original tumor. This time, it is a meningioma. It seems that the radiation that was so effective so long ago, has caused this new tumor. Dammedâ€¦I can't catch me break! OK, I will not get upset about things that I cannot control. I learned that a long time ago. I preach it at my brain tumor support group, WNC Brain Tumor Support here in Asheville, NC. I guess if I am going to have another brain tumor, I think that it is better to have a meningioma, because it is is slower growing tumor than instead of an oligodendroglioma or an astrocytoma. But none of the less, it is a growing tumor and must be taken care of. As soon as I finish my Chemotherapy in April, again will go to Wake Forest University Baptist Hospital in Winston-Salem, North Carolina for yet another gamma knife surgery. I am absolutely blessed to have the opportunity to be treated non-invasively. This is my only option, and it is a great option â€¦
A lot of the people all over the world continue to check out one of the premier web sites for information about brain tumors, virtualtrials.com. It is at that web site where I first posted my brain tumor survivor story. I have gotten mail all over the world because of my longevity being a brain tumor survivor. I said many times that I refuse to die from a brain tumor. I may have been a little bit prophetic in saying that, but I really believed that. I still do. This may be coming to an end. On April 15th, 2005 I was diagnosed with cancer. The cancer is not brain cancer! I had a small lump on my left side temple, right in the middle of where all of my surgery had been done. I noticed the lump close to four years ago. It felt like a BB under my scalp. I was assured that it was nothing to be concerned about. It grew very slowly and is now the size of a small peanut. A biopsy was done to figure out what this new growth is. The results of the biopsy:
"...the skin biopsy shows cancer, specifically adenocarcinoma, which is a type of glandular cancer usually found in the lung or colon. We're going to need to do some tests to try and find the primary source. This will involve a CT scan of the chest, abdomen and pelvis, a colonoscopy, and a PET scan. This will take 2-3 days to complete. It is possible that we won't find the primary source ..."
I had a small Lesion on my left temporal areaâ€¦I was told that it is nothing to worry about even though it kept growingâ€¦. Finally after nnearly four years, a biopsy was done and it was then that I was told that it was cancerâ€¦.I had just had a Gamma Knife surgery for my 11th tumor, this time, it was a meningioma and not the dreaded Gliomaâ€¦.And then....BAM!â€¦ I am being told that I have cancer not related to thee brain cancerâ€¦.
Whoever said "life is not fair," was right. But I think about all of the brain tumor "non-survivors" who died fighting just as hard as I have. That was not to fair to them while I lead a fairly normal life with not many major deficits. As a matter of fact, I have had a great quality of life despite all of the brain tumors. I thank the Lord for that. He has sustained me. And no, I don't deserve it, but I am sure thankful for His grace!
This week, I will undergo a battery of tests to locate the primary source of the cancer. From thereâ€¦well, I will just have to see what is in store for me.
Quite a few of you have been e-mailing wanting to know how I am doing. As you remember, I had gamma knife surgery on April 14th and also had a biopsy for a lesion on a left side of my scalp. It came back positive for cancer... Not brain cancer, but it was called, "adenoma carcinoma" and was believed to be a secondary cancer. Now after all of the testing, including MRI, x-rays, PET scan, CT scans, colonoscopy, thyroid testing and testing of the sinus, the doctors and technicians have not been able to find the primary cancer. That does not mean that I don't have a cancer, it is just not to visible using all of the testing. It is now though that even though the biopsy shows an adenoma carcinoma, Dr. Shaw feels that the cancer is more likely to be a skin cancer from old radiation 38 years later. He called it "radiation induced cancer." The treatment 38 years ago is now causing cancer now. Most of the time, I have been told the brain patient dies before all of the radiation affects finally hits you. So I guess my reward for being a longtime survivor is... Cancer?
Yes, I am bummed out, but I am not going to lay down! My life has been nothing but a struggle to survive. I have almost gotten to the point that I am looking for another challenge. I said almost! The plan now is to go through radiation again and see what happens. I know you are probably thinking, "more radiation?" That's what I thought too. The radiation kills or slows down the cancer and then later down the road, it causes cancer... And now will be treated with... RADIATION? Go figure!
Also, I have had some major problems with the head also. The area were all of the surgery has been performed has caused a major battle. It has started to swell (the brain) and caused unbelievable pain in my head. For the first time in five years I really needed to use narcotics to ease the pain. The cause is still unknown, but it seems that and infection has causing the problem. I have started antibiotics and it seems that the swelling is going down. It has been the most excruciating pain since 2000. I have not been able to pick up thing heavier than a cup of coffee and even that hurts! The infection may have been from the Gamma Knife surgery, but maybe not. The final diagnosis was chemical meningitis. The dead tissue from the gamma knife surgery could not get out of the brain causing swelling and the pain. I was in the hospital for five days, but the effected are still linger to this day.
I forgot to mention that I had my thyroid removed on June. Blame it that on the radiation too. It is common for thyroid not to work properly after whole brain radiation. I was told that the mass in my neck/throat was the size of a fist and a part of it was Malignant. It was causing pressure on the sternum and swelling in the throat as well. The surgery went well and hardly any pain.
Then about less then two weeks after that, I started the radiation. Not for the thyroid, but for the adenoma carcinoma/cancer they found with the biopsy in mid-April. (It is now mid July!) Last week, two more â€œspotsâ€ of cancer were found in the same area where all of the originally area was irradiate. So, what do you think the fix is? Of courseâ€¦MORE RADIATION AND A BIGGER DOSE!!
I havenâ€™t gotten this far without Gods big shoulders around mine, leading and guiding the way. I will continue to trust. Please pray for me to have a bit of a break before I start another challenge! Thank you all of your support and emails!
I hesitate just a little bit about updating my survivor story. It seems like after I do an update, things start growing in my brain again and I have to update my updates! As you know if you have been following my little venture over the years, I was diagnosed with another brain tumor a year and a half ago (a meningioma and not a glioma) along with two new cancers (thyroid and skin). Again, I had gamma knife surgery, radiation, and surgery for the removal of the thyroid. The rumor was that I had finally died. Well, I am here to tell you that I am alive and well! (Praises!)
I finished my radiation treatments on my 53rd birthday while I was checked in at the Comprehensive Cancer Center at Wake Forest University Baptist Medical Center in Winston-Salem, North Carolina. Not only did they have a little birthday party for me, they presented me with a certificate that said that I attended and completed the rigors of radiation. For some reason, when they handed me that certificate, I got very emotional and cried...It was like the culmination of three months of fear, anxiety, and worry. This may sound silly, but I felt like my security blanket was gone. Then I realized that my security blanket will always be with me in the Lord!
From August to February, I didn't do well. I was in a lot of pain and couldâ€™nt think straight. Picking up a coffee cup gave me a headache. Between the Gamma knife and the radiation, I have a lot of swelling in my brain and every step I took resulted in pain. Then on February 9, I started having seizures. They weren't the "kickin' chicken" variety, but more of the partial variety. It would start in my right finger and then travel to the rest of my fingers and then up to my arm and shoulder.
I would lose the ability to speak. I would have two or three a day. I could almost count on it 45 minutes after I finished eating. I found out that chewing up the food irritated the jaw and side of my head causing swelling and the seizures. I started taking smaller bites, softer food, and took an Advil one hour prior to supper. That stopped the seizures after supper, but I was still having them at different times of the day, especially when I lay down at night.
Every seizure is scary. You'd never know if it will stop at the wrist or arm or if it will continue up to the shoulder and become a Grand Mal. I learned a little trick with the partial seizures. The brain cannot have two signals going to the same place. An example of that is why you rub your arm when you hit a chair accidentally. The first thing you do is rub it. The rubbing action on the arm cancels out the pain signal and it doesn't hurt as much. Therefore, with that fact, when I started to have a seizure, I would get a bristle brush and rub it on my hand where I was starting to have the seizure activity. Around 75 to 80% of the time, it stopped the seizure. That is not scientific by any means. I just know it worked! Come to find out, the seizures were caused by a medication that is supposed to stop seizures. For some reason after 35 years, the Dilantin started causing seizures! On February 24 my Dilantin was cut down and was replaced with Keppra 500 mg. I have not had one seizure since then! (Thank you Lord!)
I was feeling well through the summer until September when I start to have more consistent headaches I just knew that it was back. I would wake up in the middle of the night and my whole body would be jerking, vibrating. My heart would be racing and it felt like I just drank 5 cups of coffee chased down with a Mountain Dew! This would go on almost once or twice a night. Ativan seemed to help a lot.
In October I had another MRI and a PET scan. No sign of cancer, the tumor has shrunk, and Dr. Shaw was very pleased with the results. It was believed that the pain in my head was due to stress and the trembling and vibration in my body was caused by anxiety. ME? I am the most laid-back person that I know! Anxiety? I told Dr. Shaw that I can control anxiety. He replied that I can't control it when I am sleeping, and that is when I start to have the problem. So he started me on a medication, Zoloft, that is used for post trauma disorder. It is also used as an antidepressant. Well, if you thought I was laid back before, you should see me now!
I coached baseball for nearly 30 years but finally had to retire. I couldn't give it 100% anymore. How can I expect my baseball players to give 100% when I as a coach canâ€™t give 100%? So now my hobby is repairing acoustic guitars and building dulcimers. I cannot do the things that I used to, physically. But my mind is working well and I really feel that I am almost normal despite having 11 brain tumors over the years. I can walk, carry on a conversation, facilitate our brain tumor support group, (WNC Brain Tumor Support), and most important, show that there is always hope!
I wish you all a joyous Christmas and a very healthy New Year. â€œProsperousâ€ New Year would be okay, but I'll take healthy over prosperous any day!
Well, it has been one year and three months since I have updated my survivor story. I am now going on to my 41st year as a brain tumor survivor after having a total of 11 brain tumors! There really isn't anything exciting to tell you about as far as my health. I'm doing very well. Last August, I had a scare. There was some enhancement in my MRI. Dr. Shaw wisely decided to wait three months and recheck again. The next MRI was clear!
I have been having some problems with memory and some Cognitive issues. The doctors feel that most of those issues are caused from all of the radiation from years past. So, after the beginning of January â€˜08, I have been taking Aricept, a drug that is marketed to treat Alzheimer's disease also improves cognitive function, mood and quality of life in brain tumor patients following radiation therapy, according to a research team at Wake Forest University Baptist Medical Center.
To my knowledge, this is the first study of an AChE inhibitor or any other drug administered to long-term survivors on partial or whole brain radiation therapy in an attempt to reduce the symptoms associated with a brain tumor and its treatments. Dr. Shaw also said that the pretreatment assessment of thinking, memory, mood and energy level revealed symptoms that clearly affected quality of life. I can tell a big difference since I have been taking it. Except that I have hard time going to go sleep! That is one if the side effect of the drug.
My role as president and founder of Western North Carolina Brain Tumor Support is still a big part of my life. I have taken on additional challenges as well. I'm now a member of the Wake Forest University Comprehensive Cancer Center Community Advisory Board. I am not letting grass grow beneath my feet! I am sooo appreciative of life! I am blessed to be alive (still)!! I really appreciate all of the e-mails that I have gotten from the virtualtrials.com site and www.wncbraintumor.org site too.
Hearing from other people that have also been through some of the things that I have gone through has been a rewarding experience. Especially when they say that I have given them some hope and inspiration. I hope so. God bless them allâ€¦.
In January, I had a routine MRI at Wake Forest University Comprehensive Cancer Center. The MRI showed that there was a new growth in a different area of the brain this time. It is believed to be a meningioma and not a oligo/astrocytoma. Ain't I lucky!? Seriously... if you are going to have a brain tumor, used rather have it be a meningioma other than a glioma!
There are no good brain tumors, but as far as treatment and prognosis, I would rather take my chances with a meningioma. The doctors feel the meningioma has been caused by all of the radiation that has bombarded my brain. They are called "radiation induced lesions." I call it something else! Right now, we are in a holding pattern. We will not do anything at this time except watch it and see how fast it grows, it it grows at all. I was a little bit bummed out about it when I got the news. But just like only other times, I have put my self into that "I will not die from a brain tumor" mode! It is time to fight again. Fighting makes you stronger. I highly recommend it to all of my brain tumor buddies!
George Plym, President
WNC Brain Tumor Support
www.wncbraintumor.org [NOTE: NEW WEBSITE 8/1/2004]
WNC Brain Tumor Support