I’m Not Dead Yet (I.N.D.Y.)

When I was first diagnosed with pancreatic cancer, I spent an inordinate amount of time thinking and worrying about my own death.  I knew that upon diagnosis, I had a 5% chance of living for another 5 years.  When I became one of the 20% of pancreatic cancer patients who were even eligible for surgery and I had the Whipple procedure, I spent an inordinate amount of time (though less than before) again worrying if I would be one of the 4 in 5 people who have the surgery, but have a recurrence in the first 24 months. 

Whenever I would have conversations about how I was doing and I would talk about the statistics (because, yes, I’m part of the nerd herd),  people would inevitably point out that none of us know when we’ll die (reminding me that any day, anyone could step outside and get hit by a bus).  Great!  Now I have to worry about dying from cancer AND getting hit by some motor vehicle.

In recent weeks, I have been “struck” by 3 such buses.  Over the next several posts, I will describe each of the different stories (yes, I’m spreading it out over time because people still tell me I’m not blogging enough — there’s nothing wrong with milking a productive blog idea).

The first “bus” hit during the 4th of July weekend.  While my family and I were at the reunion, I found out that a good friend of the family had been diagnosed with a brain tumor and had had surgery.  While I probably met him before then, I first recall meeting David when I was a new Cub Scout leader (my boys joined the same pack that David’s son was in).  Being an Eagle Scout, David seemed to know everything about being a scout leader; now that may have been out of proportion to reality, as I knew NOTHING about being a scout leader, so a damp sponge new more about it than I did.

David was one of the first people to really get me excited about Dutch oven cooking.  When his son “crossed over” to Boy Scouts, I took up the mantle (or should that be ladle) of being the pack Dutch Oven expert.  David and I continued our friendship over the years as we seemed to meet up at various scouting events and working together at various training events.  Every time I would see him, David always had a smile on his face and a cheerful word to share (even when we were trying to put together a Dutch Oven cooking demonstration in the pouring rain). 

When I was diagnosed with pancreatic cancer 2 years ago, David and his wife were always willing to help provide support (food, transportation, etc.) when we needed it.  I want to say that I am glad that MaryBeth and I have the opportunity to return the favor, but that sounds too close to saying “I’m glad David has brain cancer.”  Let me just say that I am glad that I am healthy enough that I can provide as much support to David and his family as they provided mine.

As I mentioned, David has had surgery to remove the tumor and is currently undergoing rehab.  MaryBeth and I visited with him one evening last week and he recognized us and we had a pleasant (if not labored) discussion.  David told us he gets tired at night and that by 7p his brain is just not firing on all cylinders (okay, he didn’t use that metaphor, but that’s the gist of what he said).  He had some speech production difficulty, but I am uncertain whether that was from being tired because of rehab, damage done during the surgery, a combination of the two, or some other reason.

As far as I know, there were no warning signs that David had a brain tumor.  As with my diagnosis, out of nowhere David’s life and the lives of his family have been changed forever.  I do not know what his prognosis is:  he may be able to fully recover from the surgery.  It may be that they will have to adjust to a “new normal” (a phrase bandied about at the Advocacy Days event — cancer patients want their lives to be “normal” again and what some need to do is accept that what is or is not normal has changed for them as a result of their cancer).  He may not survive. 

David was stepped off of the curb and most certainly was hit by a metaphorical bus.  F-ing buses!

For those of you interested in how I am doing — I’m (still) not dead yet!  I am under some stress at the moment (that’s a bus for a different day), but physically, I am generally okay (just the normal aches and pains of an out of warranty 44 year old).

More later!

Merle

Tags: Cancer News, Main, On my honor, I will try, Theology/Philosophy by Merle
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I hope folks had a great 4th of July holiday.  My family and I traveled to Mason, OH for a reunion of MaryBeth’s side of the family.  Ignoring the 9+ hours in the car there and back, the reunion was a lot of fun.  One of the things that I really like about MaryBeth’s family is that when they get together, they tend to do things TOGETHER.  There was breakfast and dinner together; playing cards, going to the pool, doing some other activity together; at dinner there were skits and stories or slide shows together.  It was an immersion into her side of the family (out to 2nd cousins).  As I said, it was fun, but I got home on Monday thinking I needed a vacation to recover from my vacation.  Just check out this crowd:

So about the title, the other day I was cruising along the Internet and I decided I’d go check out the Johns Hopkins Pancreatic Cancer discussion board.  I remember that going to the discussion board when I was more actively dealing with my cancer was less helpful than I would prefer because most of the stories I saw were negative.  People were dying.  People were responding badly to treatment.  People were despondent because there was nothing to do. 

I know that all of these response are thoroughly valid.  The only known possible cure (surgery) is only available to 15-20% of the patients.  For the others, there just really isn’t any proven treatment (which is largely why I have become an advocate for PC research and education).  That’s why I thought I would take a moment to post what I thought was a hopeful message that people can survive PC.

Well, most people were very supportive about my post and providing congratulations and prayers for my continued success.  The second post I read, though, was from someone who was not particularly pleasant.  Essentially, the poster pointed out that the majority of people with PC cannot have surgery and where was the hope for them and then said my post seemed to be critical of people who cannot have surgery (something like, “You’re saying that people who cannot have surgery are not trying hard enough.”)

I get that the poster likely has or know someone who has PC and is not a candidate for surgery.  As I said earlier, I understand the anger and frustration.  I just wasn’t ready for someone to so completely misunderstand my post (one of the challenges of electronic communication).  But if I have learned one thing during my journey it has been the importance of LIVING life. 

For a long time, I was letting the cancer define who I was.  I spent a lot of time thinking about what I would miss in the future and not a lot of time thinking about what I could be doing now.  That’s a natural reaction.  The challenge is moving through those steps of grieving quickly enough that one doesn’t miss the opportunities and experiences they have now.  If my cancer comes back, my family and I will deal with it then.   We will not, however, spend too much time worrying about it and certainly not to the extent that it interferes with other activities.  I go to work everyday, I continue to teach karate, I am getting more active in the Boy Scouts.  The fact that I am a cancer survivor is just one facet of who I am (and a facet that is largely irrelevant to my daily life, except that I have to take enzymes at meal time).

Well, this is much more wordy that I expected.  Thanks for bearing with this blathering.  More later.

Merle

Tags: Cancer News, Family, Main, On my honor, I will try, The Martial Arts, Theology/Philosophy by Merle
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