Writer’s note: I’ve been on a brief hiatus since before Labor Day. You’ll see several posts today and tomorrow as I play catch-up.
Back to School
The end of August brought another change to our household. Emily, our oldest, went back to school to start her sophomore year at the
University of Maryland. For those of you who follow me on Facebook, I posted a few pictures of Emily’s new dorm. While moving Emily back in was almost a non-event, for me, being on a college campus – once again – brought back memories that were both good and, unfortunately, somewhat sad.
College Memories – Dorm Life
I have always enjoyed being on a college campus. It doesn’t matter if I attended the university, or not. Or even if I’m just visiting a school for a tour. There is something about college life – the energy or the vibe that campus life radiates – which I feed off of and makes me feel a bit younger at the same time. I certainly felt that energy, initially, when we got reacquainted with Maryland and its beautiful campus.
The campus is spread out, but still very walkable, and I love the architecture of its buildings. As I said in my Facebook post, Emily is now living in one of the newest dorms on the north side of the school’s campus. On each floor or her new dorm is a laundry room, four separate lounges, and several study rooms. Best of all, this dorm has central AC.
Emily’s new dorm is nice. Very nice. Reflecting on our dorm experiences, Vicki and I were jealous.
College Memories – Arrogance of Youth
My energy level faded a bit as our visit wore on. Maybe it was the heat (mid 90s with no breeze) or the medicine (Gleevec causes fatigue) or a combination of the two. Perhaps, however, it was the sight – in the student union just outside the main bookstore – of all those college kids in their prime, beginning another year of school. I remember those days: the arrogance, the cockiness, the insecurities, the hope, the craving to find out who you really are. And none of it with any thought about how your present actions may impact your long term future. At that age, you’re going to live forever!
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| The “arrogance” of youth? |
Then I saw it. Right outside a meeting room where they were selling wall posters. Posters that would go in dorm rooms all over campus. A poster just sitting there, labelled “Timeless Classic,” propped up next to other wall posters with more current themes: Breaking Bad, Dr. Who, The Avengers, even Kim Kardashian (whatever?). An “old school” poster with the message, “Who cares about the future? I’m living for right now!”
College Memories – Back to the Future
I couldn’t believe that in 2013 the “Animal House” mentality so many of
old timers emulated back in the day is still alive and well on many college campuses. It brought back those college memories – good times and bad times. The sadness, I mentioned earlier, also began to envelope me.
My life may soon be over!
Sitting by myself (Emily was in the bookstore getting her text books), I watched all the action around me. It was as if I wasn’t even there. I wanted to shout out, “I’m sick, I have cancer! My life may soon be over. Think about what you’re doing now. Make smart choices. Be safe and be a good person. Listen to me…I’ve made thousands of mistakes. I know it sounds crazy, but you’ve got to do more with your life. Don’t waste it on being wasted!”
What you do with your life is the hard part.
Then I realized…You only learn by trial and error. And the only way you experience life is by doing, not just sitting on the sidelines watching. Hopefully, you’ll make good choices at every point in your journey, but sometimes you’ll make the wrong decision – which is better than making no decision at all. We’ve all just got to live, and – we hope – live a long and productive life. (Or, as Mr. Spock would say, “Live long and prosper.”)
I think there’s a quote that goes, “Living is easy, it’s what you do with your life that’s the hard part.”
And so the journey continues…..
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Tuesday, August 27, 2013
Week One
As of today, it has been one week since I started my medication, Gleevec. Also known as Imatinib, Gleevec is called a protein inhibitor. It was originally created to fight certain forms of leukemia (CML) and gastrointestinal tumors (GIST). The reason I take Gleevec is that through genetic testing, my doctors found that my tumors have a certain mutation, known as a c-KIT or KIT gene. According to some studies published in 2011, melanoma with the c-Kit mutation has responded well to drug therapy using Gleevec.
I will be on Gleevec for the next 60 days to see how my tumors respond to the drug. After 60 days, I will have another PET scan to see how well the drug is working. Depending on the results of the scan, I may stay on Gleevec, move to another drug or treatment, or begin a clinical trial.
So, for now, it’s just wait and see.
Oral Chemotherapy Drug
Gleevec is a pretty normal looking pill. It’s taken orally with water and on a full stomach. There are some possible side-effects such as nausea, body aches, fatigue, and – possibly – swelling. I’ve had a few of these symptoms, but nothing major. All of this sounds fairly standard, but, as with other aspects of this journey, there’s nothing “normal” or standard about a drug treatment.
Health Insurance Blues
I had my eyes opened when I began dealing with the insurance company about getting my prescription. First, Gleevec can only be dispensed from a pharmacy certified to handle cancer drugs. My prescription was actually overnighted from Indiana via UPS using dry ice cold packs.
Second, these types of drugs are not typically covered by the standard pharmacy benefit, so you have to meet your medical deductibles and/or co-pays before the insurance company covers anything.
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| Gleevec – hopefully a wonder pill.
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Third, this medicine is EXPENSIVE! When the woman on the other end of the phone told me the covered cost, I nearly passed out. When I asked what the retail price for a 30-day supply would be, and she told me that price, I actually said, “You’ve gotta be kidding?”
No Generic Options, Yet
The company that makes Gleevec, Novartis, owns the patent, which won’t expire until 2015. If some of this sounds familiar, it’s because Novartis got dinged a few years ago in the media for not lowering the price of Gleevec and some other cancer medicines. (According to some business websites, Novartis has made back the development cost of Gleevec several times over since it was approved in 2001.)
Anyway, as I said above, this has been an “eye opener.” Thanks for listening.
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