September 12, 1998 is the day where my life as I knew it stopped. All before this date is now considered "before brain tumor" as this day began a new life for me. I may have expirenced symptoms but neglected to notice them. I was tired much of the time, however, having a toddler and 4 year old and working on a masters degree I thought there were reasons to be exhausted. On this day, a grande mal seizure could not be ignored.
A tumor was discovered after being admitted to a local hospital. My husband says I expressed no emotion when I was told. It was all too surreal. A brain tumor? I was put on anti- seizure meds which made me foggy. There were friends and family who came the next day who I don't remember being there. It was all like a horrible dream; a sea of dark clouds unfolding what was about to become a new normal.
After being told by two doctors that my tumor looked malignant and inoperable, (the tumor was close to the motor strip) we decided that we needed to search for someone who gave us a surgery option. Finding a highly recommended surgeon to do an "awake craniotomy" using a technique called brain mapping we felt that this was the best and only real option.This procedure would allow the surgeon to talk to me while doing the resection, thus making it easier to stay away from critical tissue. In addition, a biopsy revealed that this was an aggressive grade 4 glioblastoma multiforme tumor, one of the most serious types we learned. A week after my 30th birthday I went to the hospital. It was uncanny how calm I felt on the ride in to the hospital. Something took hold of me and made my mind be centered before this surgery. (I believe it was God working here.) It was the hardest "event" I've ever signed up for and I had sleepless nights leading up to surgery day, September 26, 1998 and many nights after.
Being awake for the craniotomy was another surreal expirence. Nothing hurt, just discomfort of staying locked in position for hours, and the noises of a busy operating room can be scary. To get through it I tried to joke about the bad music they were playing. I think it was classical, but it was not soothing to me. I was blessed to have an anethesiologist Dr. M. Dr. M. was kind and told me all about his rock climbing daughter as well as asked me to move certain parts of my left side. I started to have a motor seizure during the operation which they controlled quickly and this was a telling sign to stop cutting in that area.
I believe being awake was key to my successful surgery. Ultimitly, my tumor was said to be 100% resected without many physical deficits. Those deficits would later heal almost entirely as time went on. The pathology came back as a glioblastoma mulitforme, just as the biopsy told us. Then, two additional Pathogy reoports came back and once again confirmed the poor diagnosis. I was told in a round about way that I may have a good year or two. I later learned that being stable does not mean cured and this would always be the case since these tumors "always" grow again. This fact blew me away.
On to a year of treatment which consisted of six weeks of radiation, which went smoothly then PCV chemo, the standard treatment given at this time. This early treatment time was emotional. Since having two small children at home we needed help. My parents gave their time unconditionally to us and eventually moved in during the week for a long while. Kind friends arranged meals weekly for months. Our church brought groceries and some took our children as needed. It was heart warming seeing this out pouring of kindness and compassion. It was hard to accept all this help however, I realized by accepting the help they so wanted to give I was doing the best for my family.
I suffered for months with on going partial focal seizures so no driving was in order for as it turned out nearly two years. Quite frankly, I didn't feel like driving anywhere or going anywhere, at first so it was not a problem. I lost a part of me, the fun part, for a while... Many medications. It took months to figure out which seizure drugs would work for me. Then on to Chemo.... According to my pathogy I could not take part in a study that was offered initially so I went on the standard offered at the time, PCV. Three drugs, Procarbazine, Vincrstine and CCNU. Two taken orally and one injection. All the time during chemo I was still taking the steroid decadron for the swelling in my brain that was not changing, most likely causing the partial focal seizures. Decadron made me swell in the face, belly and neck over the year to the point where some people did not recognize me if they hadn't seen me in a while. Although, ego shattering it marked the beginning to a perspective that I hadn't considered yet; "How can I use this expirence to better something?" I began to wonder. It would not be for sometime until this became more clear.
I stopped the PCV short on my decision for I could not handle it any longer. My blood countswere low. I wanted to play with my girls and have quality even if it meant giving up quantity of life. Little did I know that I would be stable for another 3.5 years! What a gift of time! This was not in the cards but I'm taking it!
Feeling tentive about resuming my life as it was and adjusting medications, for the next few years I went through cycles of those similar with loss and grief. I had wonderful help through this with my children and support through my loving husband, parents, friends and our church, however, I felt isolated and lonely for a time. Felt upset by those that would not even mention my brain tumor even though they "knew", and never asked me directly "how" I was doing or didn't drop in to visit. I now realize many do not know what to say or do with friends or family that have an illness, and strive to work on those areas in my own life. I've started working with Hospice as a volunteer. I am looking forward to giving out my time. Time that I thought wouldn't be here now. I'm caring for my family, investing in friends, interests and living not just MRI to MRI anymore.
As I regained strength I have been able to ride in the RIDE FOR RESEARCH for two years now. This is a fundraising event put on by THE BRAIN TUMOR SOCIETY (www.tbts.org). My husband Dan, and many family and friends have ridden every year and to date and we have proudly raised over 50K for funding for a cure. The ride is inspirational and being able to ride in it myself has been miraculous. Seeing the shirt backs of riders in front of me while riding " in memory of......" is touching and also serves as a true reminder of the gravness of this illness and fuels my passion to work towards a cure.. Through this journy, I've known of many who have passed on and it breaks my heart thinking about the families left behind and lives cut short..
As I write, I just passed my 4.5 year survivorship mark and I am blessed, and soon to be gearing up for a 3rd RIDE FOR RESEARCH! As one friend who is in Heavan would say, as she always said, "Praise the Lord!" And that is what I do. All my best, and blessings of joy to all of you.
Update 1/28/16
Long overdue Update: January 2016.
How can I explain the last 17 years in a few paragraphs? Recently I discovered that my original 2003 survivor story about my 1998 diagnosis was no longer on virtual trials. A while back my email changed and I forgot to let the organizer of the website know. Understandably, I was taken off the site.
Here I am resurfacing again to give a proper account of my survivorship.
In 1998 I was diagnosed with GBM 4 at the age of 30. Honestly, now at 47 years old it seems like a lifetime ago as I have been blessed and allowed to have had a such positive recovery. After an awake craniotomy, radiation and chemotherapy (PVC) I was left feeling hopeless at times as I learned more about brain tumors and in particular my GBM diagnosis. I was a young mother of two daughters ages 2 and 4 and didn't see how I would live to see then go to kindergarten, let alone High School and College! At the time disheartening to say the least.
I am writing today with humble gratitude that I have witnessed them graduate high school and even move on to college! I am thankful every day for my good health and my husband and daughters. I am so proud of them. Shame on the resident doctor that once said to me " you will probably have a good year or two" as he was taking some staples out of my head. They MUST teach a compassion course as a prerequisite for med school. Seriously.
After an awake craniotomy by my fantastic neurosurgeon who was the only one who said he could operate, I had the standard six week radiation treatment. Then started chemotherapy PVC . (Temodar was not approved yet). I decided to stop a few cycles early than planned. I asked the question to my doctors if they knew that six cycles was going to be better than four and they said they couldn't tell me either way. I decided to stop with PVC as it was really doing a number on me. I decided I'd rather have quality of time than quantity - if stopping would mean this. Literally, I felt as though the medicine was killing me, not only in body, but in mind and spirit.
I wanted to get back to mothering my little girls and the business if living. And so I did.
During the beginning of all this, I was fortunate to have a mentor contact whom I met through a friend of a friend. Sheila was a godsend to us. Although she didn't have a GBM she had a rare brain tumor and had a wealth of knowledge to offer along with always telling me I would get through this. I began over time to believe in this and slowly Hope and Faith became my medicine of choice. Today I mentor newly diagnosed people with brain tumors to offer support to them and their families through an organization called Imerman Angels. I find this a deeply rewarding experience as I remember how Sheila helped me so much.
The radiation and surgery caused some minor weakness in my left side. My golf ball size tumor was on the right near my motor strip area causing my fine motor skills of my left hand to be challenged. Today I don't have the use of my left hand nearly at all. My Left leg/ foot presents with some weakness too. Small price to pay for surviving this indeed. Currently I am still taking seizure medicine, but would like to find out if I can try to wean off without any complications, but am really nervous about this. Maybe it's possible, I did manage to wean off the steroid decadron finally after 18 months post surgery when I was told I may ever be able to. Thank goodness. Taken for long periods it is pretty harsh to the body.
For a while it seemed as though I was living MRI to MRI. Waiting for the ONE that would cause the other shoe to drop. There were scares of results showing a scar tissue area (which is still there) that they weren't sure about. However since this area looked the same, they never felt like I had a recurrence. Praise God!
(I don't remember what I wrote exactly or have copy of my original survivor story. I think I'd rather not rehash some of the memories unless I'm asked for information. So I'm skipping a ton of my back story.....) Onward and Upward!
Along with a few alternative treatments like acupuncture, Yoga became a healing way for me to get myself back to myself, if you will. I had always been into running just about every day but with my left leg weak and me tripping over my left foot I had to try something new. I love yoga so much. I even completed a teacher training a few years ago. Yoga has saved me, calming my anxious mind and strengthening my body. Along with a list of other benefits. I can't live without it. I now teach Seniors yoga at the local COA's, and love doing this.
I will say that some of doctors I encounter indicate that "there must have been a mistake" in my diagnosis and "just maybe it was not a GBM." I have often wondered this too. I also wonder, Do they think this about the other long term GBM survivors that I know of? Maybe there aren't tons of us but we DO exist. I feel like I own this diagnosis now so the suggestion that it may have been wrong waivers on being joyous and a sliver hurtful, if that makes sense.
Last year January 2015, I underwent my only other brain surgery. My left side weakness started to increase over the prior two years. There was no signs of recurrence on my scans so I was advised to seek occupational therapy for my worsening hand/arm weakness and physical therapy for my leg. I went for a while but felt as if I was going backwards - in other woods getting worse. Scary thoughts invade ones mind and finally, it was discovered that there was fluid - a cyst the size of an egg in the space where my original tumor had been. This had been missed in My MRI for who knows how long. Hooray! I am not going crazy with my weakness and fatigue. Long story short...A drain called an Ommaya Reservoir was implanted in my head during surgery and some of the fluid was removed. Pathology: Not cancer! The cyst like fluid returns and builds up in an ongoing pattern.( I've been told in only so many words that they don't really understand what is happening in there). It is suspected that I am having some late side effects of radiation damage as to why the fluid is there. However no one will say for sure. I'm a mystery. Of course that which saved me has to have some effect right?
This past year I have had my "brain drained" about 4 times. About every 8 to 12 weeks. It's not as bad as it may sounds. Really. I'm just glad there is a way of dealing with it! Amazing medical wonders and skilled doctors to whom I am most grateful. As well to my husband Dan, my number one supporter, daughters and very caring friends and family. I am hopeful about the direction that cancer treatments and possible cures are headed. We have to BELIEVE it possible. Please don't hesitate to contact me for questions or support. Sorry that my first post from 2003 is missing. This one is more hopeful anyway! Moving forward I will be in better contact.
Blessings! Sending hope out to all, Lisa
