It started with small things, mostly visual. In March, 1999, I traveled to Washington DC for a meeting, then on to Ft. Lauderdale to meet my family for spring break.
On the trip to DC I could not find my boarding pass shortly before boarding. When I left DC the same thing happened. I just thought I was getting very careless and gave it no more thought.
In Ft. Lauderdale more visual symptoms cropped up.
At a spring training game the scoreboard did not match the action on the field. When I cam back from taking my daughter to the bathroom I had a hard time finding my family. When we drove back to my brother's house I stopped and had him drive because something did not seem right. Other things cropped up. I type with two fingers while looking at the keyboard. Instead of the "a" key I kept hitting Caps lock and realized I was "shouting". When reading I realized I was missing words. My wife thought I had had a stroke.
When I returned home, I called my doctor at home on a Sunday (yes, he is that kind of doctor). He had a scan set for Wednesday, my wife and I saw the neurologist and neurosurgeon on Thursday and the surgery was Tuesday. I had radiation and chemo (BCNU) as well as stereotactic radiation. I was very fortunate to be at University of Missouri Hospital, a teaching hospital. Other doctors might not have been so responsive to my symptoms.
I had a recurrence in 2001 with successful resection during which they implanted Gliadel wafers.
In 2002, they thought I had another recurrence but it was only scar tissue and radiation necrosis. I went out of network to UCSF for that.
My only issues since then have been medications and a small seizure in addition to a minor impairment to my left side peripheral vision. I continue to work full time, now at the State of Missouri. I know how blessed I have been and I try to help others who are impacted by GBM and other brain tumors.
When I turned 50 I told people there was a time in my life I never wanted to turn 50 and now I couldn't be happier turning 50. I have learned a lot of things from my experiences and these are just a few of them:
You learn quickly who is not comfortable with their mortality.
Have someone with you to listen, ask questions and remember. A couple of times the neurosurgeon responded to my wife that no one had asked him that before.
Don't fear knowledge. As my wife said many times," There is nothing you can tell us that is worse than we can imagine".
My shorthand for it is that I visit the future but I don't stay there.
God does not do these things to us. He gave us the gift of life which brings uncertainty and good and bad things. When tough times hit, He can comfort us much as we can comfort each other.
I remain actively engaged in the brain tumor community, primarily working with brain tumor patients and their families Besides VirtualTrials, I am in a Facebook group that has grown to over 300 people in just a few months and just found the http://www.cancercompass.com/ site which is somewhat similar to the VirtualTrials on-line support group. It does have a brain tumor group and uses threaded conversations. Also, you can search the site on a topic and find related conversations.
I am also very active in our Boys and Girls Club.
My medical status is unchanged - tumor-free since 2001. I receive an annual scan and follow-up with my neurosurgeon. My health is good. I started walking in January with an initial goal of an average of 10,000 steps per day during the week. I was up near 20,000/day and since dropped to 15,000/day. Between January and July I lost 22 pounds. I also was more careful watching what I eat and in moderation.
By the way, I'm often asked whether I had any special diets or alternative treatments during my regular treatments and the answer is no. I have no idea whether anything else helps or not but I would take the advice for physicians - first do no harm.
Nothing has changed since the last update. I did start being involved with Cancer Hope Network. As always, I am gratified I have the chance to reach out to brain tumor survivors and family. I just wish those chances were fewer and farther between.
Things remain pretty much status quo medically. I had an annual scan and visit with my neurosurgeon in April - no sign of tumor and no other changes. I receive two or three referrals a month from Virtual Trials, Cancer Hope Network and Immerman Angels. Very little of the conversation is about the treatments themselves. Most of it is about what people hear from their medical team, what meds they are on, how they or their loved one are doing and other issues they are dealing with. It is clear to me the need for this is immense. I am surprised at how often patients are not given support and encouragement from their medical team and even family and friends. I believe some of this is because brain cancer is different......it is about who you are and where your tumor is and what treatments you have had that can change that, sometimes dramatically, at least to the observer. And the patient is experiencing the new normal, which can be so far removed from the old normal. It is good to have survivors as a resource but more should come from the medical community. My prayers for all brain tumor patients and those who love and care for them.
On the GBM front, I continue tumor free with no changes in mental or physical health, just a very mild case of the flu during the holidays despite a flu shot. Who knows how bad it would have been otherwise.
As a 15-year survivor, I do think back over this long journey and what my feelings were at different stages. I have thought about, and continue to think about, my brain and what the long term impact is of surgery and treatments. The encouraging thing is that there has been a lot of work and research to help those facing these issues. As with everything else about these disease, there is always hope.
We have a friend who worked with my wife and retired several months ago looking forward to everything she planned in retirement with her husband. Unfortunately, he was diagnosed with GBM a week later so I have watched him deal with this and her provide for his care. Unfortunately, his path has been much harder than mine but I do have hope he comes through OK but the chemo has been hard.
One unfortunate thing I hear too often is the message conveyed to patients when mention is made of survival statistics. Are they good? No. But they are much better than when I was diagnosed 15 years ago. Long-term survival was like the unicorn - a mythical creature. Just looking at survivor stories tells a tale. When people mention the stats, I remind them that the stats are from five years ago because that is the nature of these. And they are the median, so half live longer and half less. I choose to be in the better half. And being aggressive in seeking treatments and solutions can only help. And take care of your physical and mental health - give your body the strength to fight this disease with all it possesses. Stay informed and no site is better than this one for that.
Finally, manage your docs and your care. If you are not sure you are getting the best, don't settle. Go find it wherever and with whomever it might be.
I continue tumor free and in generally good health. I also regularly communicate with persons with GBM or their caregivers, offering them information and hope. I always refer them to the Virtual Trials site as the best, most comprehensive resource. I also have been blessed to become a grandparent for the first time and there truly is nothing like it in the world.
Things continue to go well medically with very few changes since the last update. Family remains central to my life, especially Peyton, our ten month old grandson. He is special and something I never could have imagined 15 years ago when I was diagnosed. Volunteering is something I find great satisfaction in, especially our Boys and Girls Club, where I get to see us make life better for so many kids in Jefferson City. After all the love and support I have had over the years it feels good to give back and make a difference for future generations. I am truly blessed.
My health remains essentially unchanged from the last update. I remain in awe of all those who deal with brain tumors. One can only be encouraged by all that has transpired over the last few years. I feel there is more cause for help than there has ever been.
The biggest change in my life has been my grandson, now 20 months old. Just about the best thing about being a long term (16+ years) survivor. Family is what it is all about for me.
On April 1, I reached 17 years as a brain tumor survivor. I have been blessed to be tumor free since my second surgery in 2001.I did have Gliadel implanted then and that may be a big part of the reason for my long survival. One thing I have learned is that often what works for one person does not work for another. But it is important to talk to your doctors about whether something is an option for you.
The biggest change I have noted over the years is that we know so much more about brain tumors and how they work. The related points are that treatment may need to be more tailored to the individual and that a combination of treatments may work best.
On my annual visit with my neurosurgeon we discussed why he recently decided to retest my tumor. He told me did just to confirm it was GBM since it was so unusual to have such a long term survivor. Interestingly, many years ago the relative of a friend of mine who works at UCSD insisted to her that my tumor could not be GBM because I had lived so long.
I also recently saw my neuro-ophthalmologist. I see him annually because there is a possibility of damage to my optic nerve due to the treatments I had, primarily radiation. There were no changes from last year.
He also checked my peripheral vision which was mildly impaired by the second surgery. It has created some minor issues on my left side and looking down meaning I take extra care when walking. No changes there, either. If you have ever had a visual field test you know it is a bit like a video game but with real world implications.
He also showed me the scan from the MRI which we viewed electronically. It is amazing to see it on the screen in such clarity. I could clearly see the hole or vacant area where the tumor was. It is always weird to see my scan and realize it is a picture of MY brain. Even after 17 years this is all a bit surreal. I often tell people you could almost get me to believe this never happened until I felt the scars on the upper right back of my head.
One issue that comes up every year during the scan is when they do the contrast. Because of the intravenous chemo I did after the first surgery my veins like to play hide and seek and it often takes two or more times to find and keep a vein. I really do not mind all the sticks but I feel bad for the techs. My record for one try is four. This is even when I try to stay hydrated and use a trick a nurse friend taught me to let one arm dangle much lower than the other.
Over the years I have donated to a variety of groups for brain tumor causes.
In April I was involved in my first fundraiser.
Head for the Cure held a 5k in Columbia, Missouri. A person I knew from my years in Missouri state government used to work for the CEO of HFTC and was helping coordinate the event. So it turned out to be a small world when he asked my neurosurgeon at Ellis Fischel Cancer Center to suggest a volunteer and he asked me if I wanted to get involved.
At the event it was so gratifying to see so many people engaged in doing their part to help and to hear so many encouraging stories.
I was asked to say a few words. My message to them was simple. There is hope. There is always hope.
On April 1, it will be 18 years since my diagnosis of GBM. The good news is I remain tumor free. For me now the whole experience feels a bit surreal, like it happened to someone else. You might almost convince me I dreamed (or nightmared, if that is a word) it all. Of course I only have to touch the upper, right back of my head to know the scar and the small indentation means it really happened.
There really is nothing much to update on the medical front. I have a few side effects from some of the treatments. I have some peripheral vision issues from the second surgery and some neuropathy in my right foot from long ago intravenous chemo with BCNU. All of this combined with aging has created some issues going up or down stairs with no handrails and walking on uneven surfaces. But nothing that prevents me from doing most of what I like or living a normal life.
I hit Medicare age this month but I have been on it once I qualified for it after going on disability.
I continue to enjoy my family, especially my three year old grandson.
April 1 marked 19 years since my diagnosis and treatment for GBM. I have become involved with Head for the Cure based in Kansas City Missouri. They sponsor 5k races to bring attention to brain tumors and raise money, a portion of which stays local (30% of the proceeds went to Ellis Fischel Cancer). In May I attended the race in Columbia MO. I did promotion for the event , including this video - http://www.komu.com/news/head-for-the-cure-hosts-19-year-brain-tumor-survivor
My initial treatment was at the old Ellis Fischel which was replaced several years ago by a state of the art facility attached to University Hospital. This month I had my annual scan, which was clear though there is some fluid in the tumor cavity, but this was unchanged from last year.
I also saw my neurosurgeon who confirmed things are as normal as you can expect for a 19-year survivor. There are not enough of us to have any expectation.
I also turned 66 this year which complicates determining what might be age related and what is tumor related.
I continue to deal with four issues â€“ some loss of peripheral vision, neuropathy in my right foot, balance issues and hypopnea which is treated with a CPAP.
Most important to me are the conversations I have with brain tumor survivors and their caregivers. I probably talk to two or three on average in a given month.
I always point them to the Virtual Trials site as the best resource for all things brain tumor. I do not give medical advice, but I answer questions as best I can. What I hear quite often is the hope they feel that someone has survived this long. I make sure they know there are many long-term survivors and there is hope given new treatments and research.
People often want to know what I did and I tell them my experience is unique except for having Gliadel on my recurrence in 2001. I also make sure they know about Optune.
I remain very involved in our Boys and Girls Club where I am Treasurer. It is gratifying to see the difference we make in the lives of local youth.
I continue to enjoy life with my wife, Jatha, and our three adult children, the oldest of whom got married in May. And, of course, there are my two grandchildren, ages four and nine months.
For me, family makes survival special and life sweet.
Last April 1 was the twentieth anniversary of my diagnosis and I celebrated with my family and many of my friends.
As I write this, I realize I never thought I would still be so blessed to still be providing updates thirteen or more years after my first post for Al's Survivor Stories.
Life continues great with so much to be thankful for, especially our newest grandson, born last September.
I still have the usual issues arising from the brain tumor and its treatments as well as what being 67 brings you.
On the brain tumor front, I have the mixed blessing of being a resource for those newly diagnosed with GBM or their family. I say mixed because I believe I help make a positive difference for those I talk to, if no other reason it helps to know someone they can just talk to, who has been through much of what they are going through, especially emotional part, someone who just listens without giving advice.
The mixed part is that I wish the need was not there, but as we al know, new cases arise every day.
I see the work that Al and his team is doing to help advance research and patient support and that is so gratifying.
As a new board member for Head for the Cure, I see another organization raising money for research and helping support the medical providers who do so much for patients.
I am also learning more about an organization HFTC supports, the Brain Tumor Trials Collaborative, whose mission is to develop and perform state-of-the-art clinical trials in a collaborative and collegial environment, advancing treatments for patients with brain tumors, merging good scientific method with concern for patient well-being and outcome.
I am much blessed and as I have said before, family makes survival special and life sweet.