I’m Not Dead Yet (I.N.D.Y.)

Hello from the National Science Center (Fort Discovery) in Augusta, GA (yup, in true GEEK fashion, I am blogging while the cub scouts traipse around the science center on a scavenger hunt).  As per most of my weekends, this has been a busy couple of days.  Yesterday evening, I made my way up to Gainesville, GA for an evening (and following day) of Wood Badge Staff training.  I am very honored to have been asked to participate as part of this year’s staff.  My time in the program last year was helpful on many different levels — helping me to be a better scouter as well as helping me deal with being diagnosed with pancreas cancer.  The folks last year were incredibly supportive and they continue to be similarly supportive now.

In fact, there have been times in which I have wanted to tell the leadership of SR981 (that’s Southern Region, course #981) that I am not as fragile as they sometimes seem to think I am.  Of course, as one friend pointed out to me, if I didn’t have people telling me (over and over) to take care of myself, I may, possibly, perhaps, over do it.

Case in point, after finishing up at Gainesville earlier this afternoon, I hopped into my car and drove to Augusta (3+ hours away).  Not to say that I am over doing the scout thing (um….I went to a boy scout meeting on Monday, ran a cub scout meeting on Tuesday, participated in a boy scout swim test on Wednesday, went to a boy scout leader’s meeting on Thursday, and Wood Badge training Friday and Saturday, and the cub scout trip this evening and tomorrow).  Other than that, I have not done anything with scouts this week.

Anywho, I had an interesting conversation with a friend the other day in which she asked whether I considered myself a cancer patient, a cancer survivor, or some other designation.  I thought that was an interesting question.  I remember when I first talked to the therapist at the cancer institute early on in my journey, she referred to me as a cancer survivor (even though I had not even begun treatment).  Rachel (about whom I wrote a couple of posts ago) feels as though her cancer is gone and she is done with cancer.  I often think of myself as a cancer patient (’cause I continue to be treated for cancer).

So which is correct?  Is there a correct answer?  My friend told me that she thinks of the term “survivor” in terms of an accident — that someone ‘survives’ a plane or car crash or the like.  She said it seems odd to apply that term to having cancer (because there isn’t that similar devastating moment.  Does someone survive the flu or some other infection? 

I use the terms interchangeably.  Indeed, I tend to use the term survivor moreso because that is the language of the disease.  It puts the cancer in a positive light — right now, I’m suriving the cancer.  For me, however, the terms will not mean anything appreciably different until I make it to April 23, 2013 — after I have gotten to my 5-year anniversary of being diagnosed; THEN I will truly feel as though I have survived this disease.

In the meantime, I continue to fight.  I will battle cancer for all I’m worth.  I may be a cancer patient, but I refuse to be patient with the cancer.

Sometime soon, I want to talk about an article a friend forwarded to me from a NY Times writer about his experiences with cancer — in it, he talks about needing o adjust to CST (cancer standard time).

Until then…

Thank you for reading.

Merle

Tags: Main, On my honor, I will try by Merle
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I guess first, I should say that I am…feeling okay, if not a little tired.  Chemo this week made me feel really nauseous on Wednesday, but today, I was mostly just tired.  I kept trying to do work and would almost fall asleep at the keyboard. (That might have something to do with going and helping at the karate school and then going to do the Boy Scouts of America swim test in the evening, after chemo?!??)

Let’s see…what else?  I am…almost finished with chemo!  (Merle’s doing the almost happy dance!)  Yesterday was my second to last chemo treatment in this cycle.  Hopefully, my last treatment ever, but certainly the last treatment until my condition changes (right now, my scans are clean)!

I am….going to have my last treatment next week.  Now, you might be saying, “But Merle; you told us your body was not happy getting chemo every week!  Why on Earth would you have chemo next week?” Well, it’s because…

I am…going to Disney World next Friday for a week of fun and frivolity with the family (and immediately upon my return, I turn around and head to Denver for a business trip).  Thus, if I were to wait until I get back, it would be almost 4 weeks in between treatments and Dr. Kauh didn’t want to wait that long.  Sure, it might put a damper on the first couple of days at Disney, but then again, maybe not.

Why Disney?  I cannot recall if I had blogged about this, but when I was first diagnosed, I was sure, as probably many newly diagnosed cancer patients, that I was all but dead (almost a year later and I’m not Dead Yet!).  I vividly remember sitting on my couch, lying in my wife’s arms, crying because I would not get to see my daughter (then 4) get to visit with the Disney Princesses.  (My wife and I talked about taking the kids to Disney, but wanted them to be a bit older.)

Shortly thereafter, we decided that we should just do it and take the kids.  We were initially scheduled to go in August, but then we decided that perhaps it was more important for me to have my surgery (hmmm…Surgery?  Disney?  Surgery? Disney?  What a choice)!  Thus, several months and a federal tax return later, my family is set to head out for 7 fun filled days at Disney World.  We’ve got the tickets; we’ve got the parking pass; we’ve got the HUGE Unofficial Guide to Disney World; we’ve looked through all the websites.  on Friday, we head down.  I think I’m more excited than the kids (well, at least the boys, who are seemingly playing it cool, as if they are not excited)!

Anyway, this is not the direction I had expected this blog post to go (that’s what you get when you do “stream of consciousness blogging”).  Originally, I wanted to blog about a discussion I had with a friend about whether I am cancer “patient” or “survivor” and the implications of each.  Unfortunately, I won’t be able to blog about that until Sunday at the earliest.  Tomorrow, I head up to Gainesville, GA for a boy scout leader training event (Friday night and Saturday), then I drive from Gainesville back home (to pick up my friend Luis) and then drive to Augusta, GA (a total of about 160 miles, one-way) for our pack’s cub scout winter trip.  We come home on Sunday and I have hours to rest before I have to go to church and teach the human sexuality class (my last one, though); other than that, I don’t have anything going on this weekend.

Before I go, please send some healing thoughts, prayers, whatever, to my Mom, who had hip surgery today.  From all accounts, things went wonderfully (she said she didn’t feel any pain, but I’m guessing that’s because they got her on some good drugs), but every little bit helps!

Thanks for continuing to check in despite my delinquent blogging tendencies!

Merle

Tags: Bibbity Bobbity Boo, Main, On my honor, I will try, The Martial Arts by Merle
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There is a meeting on the first Thursday of every month for the Pancreatic Cancer support group.  As far as we know (including the facilitator of the group, who is an LCSW at Winship Cancer Institute), ours is the ONLY pancreatic cancer support group in the state of Georgia, yet only a handful of folks attend; however, we all are quickly getting to know each other well and at least I have enjoyed going.

All of the members at the meeting this past Thursday have had the Whipple operation within the last couple of years.  The discussion on Thursday, at one point, turned to how we all think of our cancer (meaning, we’ve all had the surgery, do we still think about our cancer?).  One of the participants, Rachel, who had her surgery last March (we talked about her celebrating her 1-year anniversary next week) talked about how she had cancer, but didn’t currently.  For her, the surgery ended her battle with cancer.  Another participant, Del Rica, says that after the first 4-5 months, he has stopped thinking about his cancer.  If it comes back, he and his family will deal with it, but for now, he really doesn’t really think about it.

I am envious of people like Rachel and Del Rica.  I spend a great deal of time thinking (and worrying) about my cancer.  I mean, I can honestly say that I am feeling (generally) okay at the moment.  I have been going to the gym and have been pushing myself more and more to re-develop my stamina to run.  (Before the surgery, I was able to run a 5k with relative ease, if not speed; now, I can hardly run for 3 minutes without getting winded.  I know that I just need to build up my stamina, but I have little patience during the process.)  I continue to live my life as close to the way I did before I was diagnosed, but I do spend a good bit of time wondering about when the cancer will rear its ugly head again.

When people ask me how I’m doing, I can say I’m doing well and that I feel fine, but I feel compelled to add the piece about my angst; to qualify how I’m doing by saying that who knows how I will be feeling tomorrow.  Now before you say it, rest assured that several of my friends have told me (on multiple occassions), don’t worry about tomorrow; enjoy today.  Luckily for me, I can do both — I can enjoy today AND worry about tomorrow; I know, it’s a talent (a talent I’m trying to unlearn).

As always, thank you for checking in on me (even though I have not been blogging nearly as often as I had in the beginning).  I would like to ask you all to consider taking the PANCAN Seven Week challenge.  The challenge includes different easy activities (e.g., sending Emails) that people can do to raise awareness of pancreatic cancer.  Thanks for doing this.

Merle

Tags: Main, PanCan by Merle
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…are highly exaggerated.  I feel badly that I haven’t blogged in so long; this time it’s not even that I didn’t have anything to say.  Instead, my lack of writing has been more about just ending up spending more time with my wife (after the kids were in bed) that I didn’t want to take the time to write.  Of course, at least part of that has to do with the feeling that my posts should be inherently meaningful and deep, rather than quick updates on what, if anything, is happening in my life.  Nevertheless, I thought I would take some time and reflect on the import of yesterday.

For those of you who don’t know, yesterday (March 1) was my 43rd birthday.  It was a low key, but highly enjoyable day at the Hamburger household (heck, it snowed for about 6 hours).  What made it all the more enjoyable was the fact that less than a year ago (since April 23, 2008, to be exact), I was not entirely sure I was going to make it to yesterday.

I’m happy to say that not only have I made it to 43, but my health, all things considered, is good.  In fact, my weight is slowly going up (despite my efforts to the contrary — I would say to folks, tongue in cheek, that I didn’t think it was fair that other people with pancreas cancer lost substantially more weight than I have).  I figure if I am going to have this cancer, I want to have the “benefits” as well as the downside. 

In other pancreatic cancer news, it appears that President Obama listened to Patrick Swayze’s plea for greater funding of cancer research through the National Institutes of Health (the proposed 2010 budget includes $6 billion in NIH funding for cancer research.  Moreover, approximately $1.3 billion of the president’s stimulus plan is earmarked to the National Cancer Institute).  But as I called for when I addressed Swayze’s plea, PANCAN says that the next step is to “make significant progress with the deadliest cancers, such as pancreatic, where very little improvement has been made in the past thirty years.“  I encourage all of you to take a moment and learn more about HR 745, the Pancreatic cancer Education and Research Act. If you are so moved, please join me in encouraging our representatives in Congress to support this bill.

Merle

Tags: Main, PanCan by Merle
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