Sometimes We Stumble…
My Story May 25th, 2008
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I think I typically keep things pretty well in perspective considering what I have happening in my life. I’m speaking of just my health, prognosis and these aspects of my life. I had some pretty dark days and nights in the beginning but I came to accept my circumstances and I really try to use this trial in my life in positive ways – as a testimony to others that we can get through anything, even if we are facing a prognosis as what most view as bleak as a malignant brain tumor. I volunteer through the NBTF, am active with the NABTC and of course field a significant amount of email through my site here. I think it’s important to channel all of this into positive energy – there is a plan behind all of this. However, it’s easy to get caught up in flawed thinking.
I found myself doing exactly that over the past few days – dwelling on yesterday and worrying about tomorrow. Anytime I’m not in today, I know I’m on a slippery slope. I have posts on this blog about how I cope, about how I avoid this! But how did I learn how not to do this? By finding myself in this rut and getting myself out of it, over and over – mostly at the onset of this journey. I think what triggered a lot of this over the past days certainly was Senator Kennedy’s diagnosis. I know better. The press just lays everything out in the bleakest of terms and they are so uneducated (to no fault of their own) regarding brain tumors and other subjects that are suddenly thrust into the spotlight. The story comes out of nowhere and they start boning up on the subject, contacting experts, interviewing everyone. Immediately, he’s facing a death sentence and gliomas are all grade 4 tumors! In all fairness, it wasn’t quite this bad but it pretty much was the press painting a picture of “you have malignant brain tumor, you will die in a few years tops”. I will say that with Senator Kennedy, I could pretty much ascertain that he was facing a GBM (glioblastoma multiforme or grade 4 glioma) when I heard certain statements such as “extremely aggressive” and other give aways. A grade 4 is much different than what I have, a grade 3 although some will certainly argue that all grade 3 tumors will eventually evolve into a grade 4. Who really knows! However, all of this stirred the pot for me and I started throwing all of the thoughts I have had, factual but water under the bridge, about my case back on to my shoulders all over again.
I have a grade 3 – a craniotomy was performed and 0% was resected because of location. I have not had any shrinkage – stable is good but no shrinkage. 3-5 years median survival rate. What about my wife, my kids. Are the assets I have built over time enough – life insurance, pension plans I have, equity in our property and other assets – what if I have to stop working? Disability? My health insurance – conversion to COBRA – then what? And the list goes on. I hammered myself again! I have been through this. And then, I came back down to earth and said, “Mark, you have been through this and not only that, you have a binder in your firesafe that goes through all of this – it covers every scenario from active treatment to advanced illness, walking away from work to my death and what my family would do – it lays out steps – it has a “document locator” that spells out where where everything is”. I reminded myself that my financial advisor has a copy of all of this in his possession. I have a will. I have an advance health care directive. I also have the entire world of statistics in perspective, thus my post some time ago about the amazing piece called The Median Isn’t The Message. I have all of the other legal snafus tied up. And most of all, I have God. I have my maker who is in FULL control of what happens to me. This is not my fight, this is his but I need to stand and deliver.
So here I am, back down to earth and back to where I typically am – living in today, not yesterday or tomorrow and enjoying my family and my life. You see, as I have posted before, if I am not here today and I am mired in the mess above, I am missing out on everything – and I am missing out on what I believe God wants me to enjoy while I am here! Will I do this again – find myself wandering? I am sure I will! However, I have learned how unproductive this is. I also know we are all human – and I know that anyone facing a terminal illness – who has had a “number” waved in front of their face (which I have chosen to ignore!) will have times of dispair. It’s up to us to fight back, to realize that all any of have is today, right now, this moment. My brain tumor may not even be the cause of my demise. Any of us could walk out the front door today and have any number of circumstances alter our lives forever. That is why it’s important to live every moment to the fullest.
Yesterday? It’s gone. Tomorrow – it’ll come but today is what we have. I will enjoy it and if I fall into this thinking, I know what I need to do – and each time it does happen, I learn a little bit more about myself and I get a little bit better at avoiding it.
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Mark,
I came accross your blog from your posting at braintumor.org. I have been a frequent poster there after my physician wife of 23 years was diagnosed with an Anaplastic Astrocytoma in January of 2008. All your words are like an echo of things I have told my wife and children. The hardest part for me is the recovery of my wife post surgery. She was paralyzed on the left side. We have been doing intense physical therapy but she is still unsteady on her feet and her left arm is minimally functional. Also the personality change is heart breaking. The woman I married 23 years ago is gone. Every once in awhile I see a minute flash of her old self but that is all. Her memory is intact both short and long term but she acts and talks strangely. Her treatment was at U.C.S.F. where they did a “gross total resection” followed by 6 weeks of radiation and Temodar with Accutane. Her most recent MRI was “clean” and she is currently on a second cycle of Temodar. I was just not prepared for the degree to which the surgery altered her both mentally and physically.