I’m Not Dead Yet (I.N.D.Y.)

I am sad to write that Dr. Randy Pausch passed away today (July 25, 2008) due to complications to his pancreas cancer. As many of you know, Dr. Pausch’s battle with cancer has been a source of inspiration to me. I wish I had had the opportunity to meet or talk with Dr. Pausch; to have experienced first hand his zeal life.

Dr. Pausch, in many ways, beat the odds of this pernicious form of cancer. Most people diagnosed with pancreas cancer are not eligible for surgery; Dr. Pausch was able to get the Whipple procedure (something only 20% of patients with pancreas cancer are able to do). Unfortunately, they found out later that the cancer had metastisized. He continued to fight the disease, seeking out various chemo and radiation therapies (some of which were particularly toxic). In August of 2007, Dr. Pausch was given 3-6 months of “good health” left. In September, 2007, Dr. Pausch delivered his “Last Lecture.” In the end, Dr. Pausch defied the doctor’s predictions living almost 11 months.

I have already been contacted by friends who were concerned that I would be terribly upset by this news. While I am saddened by Dr. Pausch’s passing, it was not unexpected. I had chatted with friends who had noticed, as had I, that Dr. Pausch had not updated his blog in almost a month. I had, in fact, searched for news of his passing just last week.

I was reminded today of two very important facts: (a) The ending to Dr. Pausch’s battle is NOT (necessarily) predictive of my outcome; and (b) The odds of me beating this disease remain ‘0′ or ‘1′.

I can only hope that whatever news I get next Monday, I can live my life as fully as Dr. Pausch did these past 2 years. He did not hide from his illness, but used as a motivation to embrace his life and squeeze out every last moment of the time he had left. Rest in peace, Dr. Pausch.

Merle

Tags: Family, Main, Miscellaneous, Theology/Philosophy by Merle
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For those of you who don’t know, in the “Hitchhiker’s Guide to the Galaxy Triology” a super computer was constructed to answer the question: “What is the meaning of life, the universe, and everything?” As it turns out, the answer was 42. Which, as Aunt Catherine (MaryBeth’s sister) pointed out is also my birthday. I am not sure I agree that I am part of the answer to life, the universe, and everything…but who am I to argue with such reasoned logic??

Rhonda asked, in response to my post about the levels of various biomarkers, about my CA19-9 (carbohydrate antigen 19-9) levels. The CA19-9 test is a blood test from the tumor marker category. Unfortunately for me, the CA19-9 is not a very good measure for identifying pancreas cancer because those of us with this type of cancer have a deficiency of fucosyltransferase that is needed to produce CA19-9. With all that as background, through the 8+ months leading up to my cancer diagnosis my CA19-9 levels were in generally in the 40s (normal levels are 37 and lower). Rhonda, in answer to your question, the oncologist only ran the CA19-9 once since he’s seen me; when he ran it, my level was 58. (One does not get terribly upset until this biomarker is 200+ or more.)

As Cathy mentioned, a friend had ordered me an “I’m Not Dead Yet!” t-shirt from Zazzle. Here is a link to the Zazzle page with that t-shirt. I am partial to the ‘Ringer T-shirt’ (the one with the colored neckline and sleeve bands). While not necessary, please feel free to order your own today. Who knows, perhaps they’ll be worth something some day!

I know I have said this before, but I wanted to again say how lucky I feel to have so many people pulling for and supporting me. Whether it’s just reading my blog and leaving positive thoughts / comments or doing something else, I really want you to know how meaningful your love and caring are to me. From the bottom of my heart, thank you!

Last thing, MaryBeth and I spent some time with an LCSW on Monday to discuss how my cancer is affecting our relationship, as well as the impact it has on our kids and our relationships with the kids. Jean, the LCSW, sent us a flyer yesterday for a program I wanted to let you all know about. The Jack and Jill Foundation for Late Stage Cancer is dedicated to provide memorable experiences for families with young children whose parents have late stage cancer. The foundation is based here in Atlanta and I have volunteered to provide photographic services for families on these WOW experiences. I think this is a great organization and I encourage you all to do what you can. I am not currently eligible for the foundation’s services, so in the meantime, I’ll provide those who are with whatever support I am able.

Until next time…

Merle

Tags: Merle, Miscellaneous, Score Box by Merle
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So, I’m still feeling tired, but the nausea has passed. As such, I hereby offer the Top 5 things I’d rather folks not say to me. As with the first 5, please keep in mind that you all have a “Pass” if you have said any these things to me previously. I hope this list is helpful for you moving forward.

5) “What’s your prognosis?” As with #9, in reality, my doctors cannot say what my prognosis is! As I have remarked in other posts, outcome data for my form of cancer are not great. If you could clone me 99 times, the data suggest that anywhere from 4-20 of these 100 Merle’s will survive to 5 years. Without knowing if I (the ‘real’ Merle) would be among these survivors, spending time wondering about what may be is something I chose not to do. In addition, I’m trying to stay present and asking me about my future is counterproductive to that activity. If you feel like finding out about my prognosis, do a Google search for “pancreas cancer, prognosis” and you’ll get more than enough information, but please do not ask me.

4) Some version of the “We all are going to die of something!” or the “You could step off the curb and get hit by a bus!” It’s absolutely true that we are all going to die (as Clive James has said, “Nobody gets out of this world alive.“) and absolutely unhelpful. As Lori Hope wrote in her book, “Oh great! Now, in addition to possibly dieing from cancer, I have to worry about possibly being hit by a bus!” As a friend from church pointed out to me, we all have to deal with our own mortality, it’s just I’m lucky enough to be reminded about it every day (’cause I have doctors appointments every day). Think of it this way, it’s the difference between knowing that you MAY be hit by a bus someday and seeing a bus hurtling toward you and wondering if you have enough time to jump out of the way before it hits you.

3) Anything that involves cancer war stories. When I first publicly announced my cancer at my church, a woman at church stood up and told a story about her son who had one form of cancer or the other and how hard his treatment was, but that he survived. I don’t need / want to hear about how difficult my treatments will be. I know! The last couple of days have been hard enough that I really do not want to have to worry about it getting worse (though, I’m sure it will). Similarly, my wife had found a website that was written very humorously (at least the first half was). The 2nd half (which she admittedly did not read) described the difficulties the author had with complications from her Whipple procedure (e.g., on 2 separate occasions she woke up covered in blood). I appreciate people wanting to raise my spirits with humorous stories and stories of successfully battling cancer; I just don’t need them if these stories include pain and suffering. The take home message here is: tell me positive stories of cancer (not scary stories) about people who have had pancreas cancer. I need hope, and horror stories don’t accomplish that.

2) “It happens for a reason” or that my cancer is “God’s will.” I can appreciate that some people need to believe in pre-destination. I am not sure I believe in it, but what I do believe is that there is not a higher power that is actively involved with my life. As I have said elsewhere in this blog, my theology is influenced by the book When Bad things happen to Good People by Rabbi Harold Kushner. As Rabbi Kushner argues, God created the world with a set of natural laws. Upon completion, this God no longer takes an active role in the events that happen (instead God gave humans free will to guide their actions). I refuse to believe that (if there is a God) he or she would arbitrarily give someone cancer. Your mileage may vary. (BTW, if there is a God that is responsible for my cancer…well, let’s just say I really cannot in good conscience write what I’d really LIKE to say! That God can go to hell — though as a Unitarian, I’m not sure if that place exists either! My wife, the resident theologian and seminary student, suggests that the Book of Job expresses similar sentiments!)

1) Nothing. I realize that one potential by-product of this kind of list is that people are afraid of saying anything to me for fear of saying or doing the wrong thing. I want to encourage you not to be so afraid of saying the wrong thing or making a mistake that you avoid contact with me. Your support and contact is what is most important to me. I would rather have you say the wrong thing than to avoid me. If you absolutely cannot think of anything to ask me here are some suggestions: (a) What is the meaning of life, the universe, and everything? (b) What is your name? Your quest? Your favorite color? or (c) How ’bout them braves? The weather? The new episode of Law and Order: SVU? In the end, I need you if I’m going to successfully battle this cancer. Stick with me, y’all

Cheers,

Merle

Tags: Miscellaneous by Merle
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