For a long time, I ignored a variety of symptoms, and
I was making and canceling numerous doctor's
appointments, much to the annoyance of my family,
friends, and colleagues.
I know for a fact that I had symptoms as far back as 1996, when I began experiencing extreme nausea and throwing up for no apparent reason. I went to an MD for it in 1996, but he said it was stress and prescribed Paxil. I didn't take the Paxil and I never told the MD that the nausea continued. Another symptom I had once was extreme heart palpitations, to the point where my chest was sore the next day. I did go to the MD for it, and he said it was too much caffeine. The "hour of reckoning" came when, during the spring of 2000, the severe headaches began. I went to the MD 7 or 8 times with headaches, begging to be treated for what I was sure was a bad sinus infection that would not clear up. At one point, he asked me to compare my headaches with the pain I'd experienced during childbirth, on a scale of 1 to 10, with 10 being the worst. I replied, "About a 9.9..." He shot me a very sharp stare, and mentioned an MRI, to which I scoffed. I told him to give me some more sinus medicine and antibiotics and I would be just fine. You see, I had a long history of telling doctors what I thought was wrong with me and insisting on being treated accordingly.
On June 27, 2000, my whole world as I had known it to be came crumbling down. I'd gone back to the MD for more sinus medicine, when an astute family nurse practitioner, who was standing in for the MD, watched me walking toward the consultation room. She followed me in and asked me in a very stern tone, "What are you on, Susan?" I was offended, as I knew she meant some form of illegal drugs or alcohol, and I knew better, so I quickly told her so. She then insisted on me having blood drawn, just to make sure. After the blood work, she returned with another doctor from the practice, whom she wanted to examine me also. She explained, "I saw something very odd in your gait, your speech sounds slurred, and your blood is clean. You have to have an MRI at once." By 4p.m. that afternoon, a neurosurgeon told me that I had a massive brain tumor which had completely filled my left temporal lobe, and that it looked like an octopus with tentacles and it was pressing on my brain stem. He said that I had to have surgery at once or I would surely die, possibly within weeks, but the surgery might leave me deaf, dumb, blind, and mentally deficient. As I left the neurosurgeon's office, my 10-year-old son, Stuart, who had been with me to all the appointments on this awful day, read the shock and fear in my face. He grabbed me and said, "You have a brain tumor, don't you Mom? Please promise me you won't die." I was devastated, and I replied, "Son, I cannot promise you I won't die, but I will promise you that I'll do everything I can to stay alive."
So, on July 3, 2000, Scott R. Gibbs, M.D. spent 15 hours debulking 60% of the mass (7.5 X 7 cm) and was able to successfully remove the tumor from my brain stem. I spent nearly two weeks in the hospital, where I learned that neuro nurses are the best, except that one of them and my brother gave my tumor the name Oscar the Octopus. Our full attention became focused on killing Oscar. The pathology report concluded that Oscar was an Astrocytoma Grade I. On August 16, my MRI still showed a bunch of tumor located in my speech and long-term memory centers.
At this juncture, I must pause to make a comment on the deviousness of brain tumors and how well they can outwit even the most brilliant of neurosurgeons. My tumor was clearly located in what SHOULD HAVE BEEN my dominant hemisphere, and certainly seemed too dangerous even to the most gifted of neurosurgeons. So, Dr. Gibbs, a man who I will always thank for saving my life, encouraged me to seek second opinions for radiation or other treatment options. I went to the local radiologist, the only one in the city where I live; he told me that all low-grade astrocytomas died and I had 3-5 Years. I looked at that man through my tear-filled eyes and told him that he didn't understand. He was looking at the miracle child. He shrugged his shoulders and said that he saw one Astrocytoma per year and they were all dead. The nurse gave me a box of Kleenex for the road.
On September 11, 2000 I flew to the University of Texas M.D.Anderson Cancer Center in Houston where I met with Charles Conrad, M.D., my neuro-oncologist. After telling him my whole story, when I reached the ending with the words of the awful radiologist, he said, "We don't agree. We will treat this very aggressively, we will resect the rest and we will get it all." I was jubilant, but soon after this, I learned the path report performed by MD Anderson revealed my tumor to be an Anaplastic Astrocytoma Grade 3. I was very afraid, because I had studied brain tumors, and I knew this was a bad one. Yet Dr. Conrad never treated me like a dying person, he had a way of making me feel like I was a person with something very bad in my head that needed to be gotten rid of and that he and his colleagues were just the people to help me. So, he put me on Temodar and Accutane, and I stayed on it for 6 months. I thought it didn't work very well--we'd only seen a little shrinkage after the first round. But my tumor remained stable with no growth, I felt great, I was working full-time, taking care of my boys (aged 10 and 13), exercising regularly, eating healthy foods; basically I was blissful and full of joy to be alive. So I thought I'd stay on it forever. Not so. In early spring of 2001, an MRI showed a spot that my doctors didn't like, and I think the spot, in conjunction with my first seizure that I'd suffered at Christmas (I could write a separate story altogether about the awfulness of seizures...), these two factors caused him to make up his mind-it was "Show Time." He said it was time for me to have surgery. I cried like a baby. I wanted to keep doing what I was doing, but he said my tumor was too large, and it was showing signs of acting up.
Fred Lang M.D., was the neurosurgeon assigned to my case. Several members of M. D. Anderson's Tumor Board thought that my tumor was in a very dangerous location, and was very risky, possibly even inoperable (as if I hadn't heard that before). But, Dr. Conrad and Dr. Lang both felt that somehow the surgery could be done. I was summoned to Houston for a battery of tests, including a Functional MRI, and a WADA. For those who don't know, a WADA test anesthetizes one hemisphere of your brain at a time, thus you can test functionality of ONE hemisphere alone. And, Dr. Lang's hunch proved correct. My speech and long-term memory had indeed shifted to my right side, i.e., my brain had literally rewired itself to accommodate the tumor. He said, "I've never seen anything like it." He then speculated that I may have been born with this tumor, or at least developed it a LONG time ago. So, Dr. Lang scheduled surgery for March 22, 2001. He used all the latest technology, (tools unavailable to my first neurosurgeon), such as, Functional Image-Guided surgery and Awake Craniotomy. Then came the Good News, and the Better News: Dr. Lang resected the entire tumor and left me deficit free, and the lab results showed that the Temodar/Accutane really had worked and had morphed my anaplastic astrocytoma Grade 3 to an ungraded Oligodendroglioma.
I am now on an MRI Surveillance schedule at MDA, and am not using any radiation or chemotherapy. As Dr. Conrad said, "We have the whole arsenal of M.D. Anderson waiting for you should any problem develop in the future, which we don't expect."
That is where I am in the Ordeal of a Lifetime. I feel so good now, I sometimes, upon awakening, think it was all just a bad dream-that none of this really happened to me. But it did, and I will share the tools I used to wage the war against a Brain Tumor-and WAR it is. My tools were:
Prayer-Every morning I would pray to God and read to Him Hebrews 10:23,
"Let us hold fast to the confession of our hopes without wavering, for He who promises is faithful." And I would verbally confess my hope to God, without wavering. I did it every single morning. I wrestled with fear, and I know the awful bone-chilling fear this disease can cause…where I would awaken in the middle of the night completely enveloped in fear. But, my mantra of FAITH, HOPE, and NO-SURRENDER would come to mind, and I would pray, and the fear would dissolve. Also, our loving and merciful Father in Heaven had a way of comforting me and letting me know that He was real and listening to my pleas.
Other People: I would also ask anyone, friends, loved ones, and strangers, to pray for me as well. Also, I learned to accept lots of help and support from people. I have many loving, supportive friends with whom I share great times floating, biking, walking, or just being together. These were the friends who endured my constant need to talk about the tumor, patiently listening to me tell the same story again and again. I have been completely humbled by the outpouring of love, kindness, and generosity that has been bestowed upon me during this illness. The people where I work at Southeast Missouri State University even collected money for me to offset the expenses of commuting to Houston for my treatment. My brother took me on an all-expense paid trip to London and Paris-I was a French major in college, so that was a REAL dream come true! And all the friends, loved ones, church members, and University people who prayed for me, brought me food and flowers, drove me around, and helped me with my boys. They even stayed with me after my first brain surgery, because my Neurosurgeon would not let me leave the hospital unless a grown up stayed at my house to make sure I was OK. I've really witnessed the love of God in these people
Laughter-my maternal grandmother raised me with the ditty, "Laugh and the World Laughs with you, Weep and you Weep Alone." As a result, I've always tended to laugh, even in the face of disaster. That trait was a Godsend to be sure.
One Day at a Time: There were days when I would have to preach to my self that I could endure anything for one day, and really, Today is all any of us really have.
Healthcare: I sought out and used the best medical care available on the face of the earth….OK, I'm biased, I'll admit. I learned to trust my doctors completely. I attribute my life being spared to brilliant doctors whom God used liberally.
Today, I am working full-time as a University librarian, and my ability to concentrate and stay focused is better than it has been in years. I'm a busy mom who can drive my boys to the municipal pool on my lunch hour and pick them up after work. I enjoy my children immensely-I can come home from work and actually want to do something with them instead of going straight to bed with a headache and a trash can, in case I need to throw-up.
I am truly humbled to be included with all these survivors on this awe-inspiring Survivors page. I derived so much strength and hope from this page when I was at the height of my illness and very unsure exactly where this disease would actually take me. I tend to be a very competitive person, and all these survivors certainly awakened the side of me that says, "If A B or C beat it, then I can too!"
Update: 1/21/02 - Had a scan at MD Anderson, and it came back clean!
Update: 8/8/02 -
I had an MR Spectroscopy and MRI in April and July,
2002. Dr. Conrad wanted to thoroughly examine my
tumor bed--he's a vigilant man. All four of the scans
revealed no evidence of tumor, although there had been
a suspicious area, it still appears to be nothing
developing.
I then met with Dr. Moshe Maor, (Radiology) and
Dr. Conrad, who me that neither one recommended
radiation based upon: a) the clean scans; and b) my
age! I'm 42, but to "Brain Tumor docs," that's young!
Dr. Conrad explained that the tendency for regrowth is
less in a "younger" person; and c)radiation can be
dangerous business and it can hurt me. They would
rather save it for the day that I absolutely have to
have it because I have a tumor....a day which may
NEVER come! He didn't recommend using radiation as
preventive medicine on my brain. I'm still on an every
3-month check-up.
March 1, 2003 Update:
During my January checkup at MD Anderson, a small re-growth was spotted. It was a tumor about the size of a thumb nail. Dr. Conrad, my neuro-oncologist, wanted me to see Dr. Maor, my radiation-oncologist at once. Both the doctors studied my scans carefully, in comparison with my last 4 or 5 scans, and everyone unanimously agreed it was time to treat. On 14 March, I will complete 30 rounds of 3D conformal external beam radiation. Dr. Conrad added 80mg. Bid of Tamoxifen, (which he told me is an unusually high dose, btw) to my treatment. He explained to me that the research has shown that High dose oral tamoxifen is very effective when used with radiation. So, I'm back in the trenches, for awhile, and very pleasantly not sick at all. Keep praying for a CURE, and thank you for reading my story! Love, Susan
11/7/03 Update:
Since finishing radiation, here’s what’s happened. Firstly, I was too stubborn for decadron, so I left Houston with nothing but my anti-seizure meds, and returned to work. I kept sleeping more and more, acting more and more strangely, but I had nothing to say! I was “Just fine!!!’ I’ve always heard. God takes care of Drunks and Babies…..I’m going to include brain tumor’s in that! When I returned to Houston in May for my MRI, my brain was so swollen from radiation and I was so non-functional, I lost my suit-case, and the flight-attendants used a wheelchair to get me off the plane. I knew my brain was severely damaged and that I would never be the same….or so I thought….Thank God I was wrong.
Immediately, I was placed on an IV of decadron in the hospital, and then onto surgery for a biopsy. It was there that it was discovered that I had leptomenengeal metasteses and malignant cells in my CSF.
I was asked to participate in a test for Topotecan, which of course I did. It required an Ommaya reservoir on top of my head, which has really been nice, even after I finished the Topotecan. It doesn’t hurt to use it, and all it requires is shaving the hair back a bit ;)
Then, I took PCV (The most common chemo available, so I won’t elaborate); but I still had the malignant cells in my brain stem and CSF. So, it was time for another Trial, I 131.
It’s actually in my son’s chemistry textbook for thyroid cancer, but in cancer research, they wanted to try someone like me; i.e., with leptomenengeal…..;
I had to drink something that tasted like iodine to protect my thyroid gland from the nuclear radiation and it appears to have worked. I now don’t have any evidence of malignant cells in my CSF or lining of my brain, although I still have 2 small (acorn or smaller) tumors on the left hemi (the original) surgery site.
At one time, I had grown a puppy in my good brain, and we all know I have no where to go, So I was pretty scaird….But…..I always ask for help and for people to pray for me…the prayers of the faithful will heal the sick, I’d keep saying to myself!
Then, I thought I was going home, but my doctor decided to call the team back in to try one more assault on those small acorns on my surgery side. I had Stereotactic radiosurgery (Dr. Lang came back;) and Dr. Maor led his team in planning the assault with their beams, which are very exact, and there is no movement of the head!
Now I’m back home, with an Oncologist who’s spoken with Dr. Conrad so I can finish my PCV here(4 rounds) and be with my boys, who are now 13 and 16. I remain grateful for life, and generally feel good. I don’t work any longer; I take ritalyn for fatigue; I’d recommend that to all of you with brain tumors….Fatigue is the name of the game!
Thanks for sharing with me! {Pray often and never, ever give up hope! I haven’t
Susan
