Many people know a bit about pancreatic cancer since the actor Patrick Swayze died from it in 2009 at the age of 57. Many know that it is an extremely aggressive cancer and that its survival statistics are dismal. However, there is one other cancer this virulent that many people don't know about...a brain cancer called glioblastoma multiforme, often shortened to "GBM".
The median survival time for a newly diagnosed GBM patient is about a year. Yet, there are those patients who have defied the odds to survive over ten years. One of these remarkable people is Tom Sadowski. For the approaching month of May--Brain Cancer Awareness month--Donna McCart contacted Tom for an interview, so we could share with you his inspirational story. Here Tom tells you a little about himself, and then answers some questions from Donna.
About me
Tom Sadowski, 59. I was diagnosed in 1999 at 47 years young. I had the good fortune to have a primary care doc who acted quickly based on my symptoms that did not obviously suggest brain tumor. They were all visual like missing words when reading, bumping into things on my left side, etc.
The symptoms occurred on a spring break trip with my family. I called my doc at home on Sunday when I returned. He scheduled a scan for Wednesday, I saw the neurologist and neurosurgeon Thursday and had surgery the following Tuesday. My tumor was in the upper right parietal lobe.
It still amuses me that I was diagnosed April 1. I still don’t know who fooled who.
My first surgery was at Ellis Fischel Cancer Center in Columbia, MO (Ted Colapinto was the neurosurgeon and Clay Anderson was the oncologist). Dr. Colapinto said the tumor was still encapsulated and he was able to get it all.
After surgery, I was first treated off-trial, with stereotactic radiation and chemo (BCNU, which I don’t think is used anymore). I also had a six week regimen of radiation. Since I couldn’t drive and my wife was working I often asked others to drive me. Sometimes these were people I knew but not that well, such as the son of a good friend and the provost where I worked, the University of Missouri. We had good chats. I also become friends with the techs. The steroids did help with my energy through all of this.
On my recurrence (same location as before) in 2001, I was treated at University Hospital in Columbia (John Oro was the neurosurgeon). As part of the surgery, Gliadel wafers were implanted.
In 2002 there was a suspected recurrence and for this I went out of network to University of California, San Francisco (UCSF). Their tumor board agreed another surgery was warranted. Dr. Mitch Berger did the surgery and, needless to say, I am a huge fan. Dr. Michael Prados was the oncologist. The good news was it was only scar tissue and radiation necrosis.
I live in Jefferson City, MO. I am retired from a career in auditing, accounting and administration, having served as a Director of State Audits for the Missouri State Auditor and as a Director of Accounting for both the University of Missouri and the State of Missouri.
I am now engaged in some volunteer activities, among other things serving as treasurer of our Boys and Girls Club.
My most treasured time, though, is communicating with GBM survivors and caregivers. I am listed as a resource with several organizations and people know I am willing to talk to others about this. It is how I “pay it forward” for the blessings I have received as a long-term survivor.
I am married to Jatha and together we have three children – Grant, Cale and Kaitlyn. We had a terrier-Chihuahua mix that lived to 17 years. King truly was a part of our family (the only one in our family picture who was good on every take) and I don’t see us replacing him. While I was home for a month after the first surgery I would often lay with him in front of the stereo listening to music. He would also be with me for naps.
Regarding the kids, we told them what was going on from the start and they handled it pretty well. I think it was because we were open and honest with them, neither overly optimistic nor pessimistic. Now, years later, what they told us is they watched how we were dealing with it. Kids can just tell when you aren’t being straight with them. They take their cues from you.
Donna: Were you part of any clinical trials, or were you told about any at all?
Tom: I did one treatment as off trial. Yes, I was told about trials but there was never a need to pursue one.
Donna: What part about all this was the toughest? What were the biggest challenges you faced in the early days post diagnosis? Did you ever feel like you “hit bottom emotionally”? What got you through it? How do you get the support you need?
Tom: I really have no memory of anything being tough and I never “hit bottom”. One of my priests told me I must really be angry and I told him no. Why should I be angry and at whom?
One of my mantras was “Que sera, sera – what will be, will be.” No amount of worrying will change the outcome. Did I think about it? Sure. As I like to say, I visited the future but I didn’t stay there. You need to know what is possible so you will recognize things when they occur and prepare for them. I always wanted to know what might happen and what the options were so we weren’t caught by surprise. As my wife often said to the docs, “There is nothing you can tell us that is worse than we can imagine.”
One thing that is tricky is symptoms. Your first thought is recurrence. You see everything through the prism of GBM. Is it back? Going for a scan I rarely worried as much as my wife and it took me a while to realize that. I feel in many ways GBM is hardest on the family because of the emotional toll.
This prism is the new normal. You can’t go back. Will there ever be a day that you don’t think about GBM? Maybe. It took a while but one day I realized I didn’t think about it yesterday. Oh, I still knew, but not front and center. You adjust and don’t let it be your life. One day as we were leaving the hospital I told my wife this – I don’t want to live my life thinking I have some finite time left and then later look back with regret when I realize I had more time and wasted it. You don’t have to change your life or become someone else. Just be more mindful to do what is right for you.
Regarding symptoms, there are so many causes – medical, emotional, physical, spiritual. It may be easier to understand what is happening than why and what you can do.
One other observation - the docs don’t have the experience of the patient. As good as mine were they sometimes didn’t relate or tell me something I needed. This is why having connections with other survivors can be so helpful – sharing what the path is like. Giving a heads-up not just on what might happen, but its significance.
Receiving support was an emotional and humbling experience. Why do these people care about me, even people I barely know. You may find, as I did, that you are loved and lovable. Not an easy thing to accept, at least for me
Donna: Did you have health insurance? Was it adequate to cover your treatments? If not, have you had financial hardship and how have you handled that?
Tom: Yes, I had health insurance and it covered my treatments, including going out of network.
Donna: Did you make lifestyle changes after diagnosis (food, exercise, other?) Do you do any "alternative" treatments along with western meds?
Tom: I did not make any lifestyle changes after diagnosis, though more recently I got back to eating better and walking regularly.
Donna: Do you live with deficits from having brain tumors and treatments? Have you learned how to compensate and overcome the deficits you live with?
Tom: My only deficit is minor loss of peripheral vision.
Donna: What gave you hope that you can beat the statistics? Was there a moment or point in time (and what were you doing) that you realized you might defy those statistics? Did you start our pretty much hopeless and then realize things weren’t turning out that way after all, or did you always know you were going to beat your cancer?
Tom: I don’t know that I ever thought about beating the odds. I still don’t think that way, even though I have been tumor free since 2001. I do know how fortunate I have been.
I never felt hopeless and part of that was my faith. It is easy to have faith until you are tested. That is when you find out what your faith is made of.
Two things about my daughter, who was not yet eleven. First, I remember seeing her in our yard and thinking I might never get to walk her down the aisle. After a while these thoughts went away. The second was my wife telling me that my daughter said, “My dad’s going to be OK”. That was a comfort to me. Yes, maybe I’ll be OK.
Two things I did not understand about the statistics were that they are a median –half are above and half below and they are based on five year old data. A lot can change in five years.
Donna: What was the most important advice you were given throughout this journey?
Tom: Nothing sticks out at this point.
Donna: Any good tips you can give newly diagnosed patients that will help them through the standard treatments—surgery, radiation, and chemo?
Tom: Start with three words – Comfort. Healing. Hope. Put yourself at peace as much as you can amidst the turmoil. Take a breath. OK, take another breath. You might not be cured but you can be healed. A brain tumor is something you have, not something you are. Your biggest challenges are not medical or physical. Your brain holds who you are. If you have emotional or spiritual issues, resolving them can make you whole as a person, regardless of the medical side. Finally, there is always hope. Certainly there is hope medically, with new treatments, trials and research. But your biggest hope is living as who you are.
Don’t try this alone. No matter how smart or strong you are, let others in to help, on all levels.
Put someone in charge of communicating and being a central point of contact. We used a close friend who would email people to keep them informed.
Decide how open you want to be and how and how much you want to interact with others. I was very willing to share and I enjoyed people visiting.
Make sure you get enough rest and don’t overdo.
When we met the neurosurgeon the first time, my wife asked a lot of questions. At least twice he said, “Nobody asked me that before”. That’s who you want with you, someone who can pick up the nuance and pull out what you need to know that the doctor may not think about.
Even when my wife is emotionally engaged she can think clearly, see what needs to be done, and act. You want this with you, too, when dealing with a GBM.
Donna: Tom, Thank you for taking the time to share your experiences and offer insight to others on this journey. Your ability to keep perspective with the challenges thrown at you shows a real strength of character. I wish you many more years of continued happiness with your family.
Tom: Cancer, whether GBM or something else, is a fact of life, but it does not define us. All of us caring for others helps make the best possible life for each of us. Thank you for doing this.
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Chocolate Box contributor Donna McCart is the loving wife of Raymond, who was diagnosed with GBM in April 2011 and just recently passed away of his disease. Donna and Ray have one daughter, Lauren, in her early 20s, and share their life with Yoshi, an Akita, and Ace, a chocolate Lab, in the suburbs of Philadelphia.
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Just stopping in to thank Donna and Tom for this interview!
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