I’m Not Dead Yet (I.N.D.Y.)

First off, I survived yet another round of chemo.  Actually, my body seems to be handling the bi-weekly gencitabine fairly well.  This week, I was suffering from the effects of a cold, yet I was still able to get the chemo.  I was amazed, though, that I felt myself get nauseated just from being in Winship.  Smells have an incredibly powerful impact on memory and all I can think of is that my nausea is simply a Pavlovian response to the smells of the cancer institute (I was nauseous even before they took my blood for labs).

I left the hospital on Tuesday thinking that I would very much like to be done with my treatments.  I know it’s hard to imagine how someone would not look forward to having a needle inserted into their chest so that poison could be pumped in; just call me wacky.

Nevertheless, I am feeling generally okay today; though, I have continued to experience some moderate nausea and fatigue.  Unfortunately, that makes staying up until midnight (and toasting in the New Year with bubbly) something of a challenge.  Luckily, the Atlanta Hamburgers are having a relatively low key evening.  My younger son and daughter are over at a friends house while MaryBeth plays on the Wii and my older son plays with a Nintendo DS (oh yeah, and I’m blogging).  What can I say, we live la vida loca.

One cannot help being a little retrospective on the last day of the year.  I would be lying if I did not say that 2008 was largely a sucky year.  I started off the year with an ongoing bile duct blockage (requiring ERCP procedures every two months) and ended the year with cancer (requiring chemo every two weeks).  Hmmm…not a banner year for me.  On the other hand, I did find out that there is, truly, an incredibly large, supportive group of people — family, friends, people from work, church, and karate — that seemingly came out of the woodwork to help my family in our time(s) of need.

I still cannot bring myself, as some have, to think of my cancer as a blessing (despite all the love and caring we have been shown) — an opportunity to overcome adversity and grow as a person.  I would have rather not overcome anything or grown than face the uncertain future I now face.  But this post is not to lament my situation, it’s to wish, for both myself and everyone who reads this post, a happy and healthy New Year.

Warmest Regards,

Merle

Tags: Main, The Martial Arts, Theology/Philosophy, Treatment by Merle
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I woke up this morning (6a) having trouble breathing because of my stopped up nose and sore throat.  I quickly decided that I had a cold and got out of bed, as lying down was inconsistent with my ability to breath (the lack of which, to paraphrase my Atlanta surgeon, Dr. Sarmiento, is incompatible with life).  I got up and ambled downstairs and actually spent a little time playing with the Wii that MaryBeth and I got the kids (you see, we had the thought that, using the Wii and Wii Fit, our kids would be able to play video games and be active at the same time — apparently my oldest son, however, has perfected the ability to play these games while sitting in a chair, somewhat defeating the purpose).

In the midst of my rocking out to Guitar Hero, I began to think about my being sick.  I am presuming that I am far enough away from my chemo treatment a week and a half ago that my immune system is strong enough to fight off the infection.  I will be monitoring my temperature just to make sure I don’t develop a fever (which, I’ve been told is a bad thing).  Interestingly, this is the first time since my diagnosis that I have gotten “sick” and I have to say, that I am surprised that, when I stopped to think about it, I got a little freaked out.  I’m not really worried that I’ll develop pneumonia or some such, but I have been thinking about it more today than I had previously.

Cold notwithstanding, the only real issue I continue to deal with is my complacency.  You see, I have been forgetting to take my enzymes at mealtimes.  Unfortunately, this leads to my digestive system getting pretty upset with me.  As much as I have enjoyed visiting with my wife’s family, I am looking forward to getting home and getting back to a more reasonable (less caloric) dietary plan.

In the meantime, I’m going to pop a Nyquil and get some sleep.

Merle

Tags: Family, Main, Theology/Philosophy, Treatment by Merle
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The following was written last night (Christmas day); unfortunately, the internet went out in the middle, so I am posting now.

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Merry Christmas and Happy 5th day of Hanukkah one and all.  I hope you have spent the day with family and friends and have enjoyed your times together. I ended my last post with the statement that the best things in life are not things, and while I still believe that, the exchanging of giftts that occur at this time of year often leads one to focus more on the things and less on the ephemeral experiences of the events.

I enjoyed playing Santa or Hanukkah Harry (depending on which gifts I gave out)  as we brought both our Christmas presents as well as some presents unopened from Hamburger Hanukkah with us to Cincinnati.  I have to say that I am amazed at the sheer amount of princess paraphernalia that my daughter received today (including, but not limited to, a silk princess gown and pointy princess hat).  As a result of said gifts, I have played princess checkers, princess dominos, princess go fish, and princess old maid.  Despite my growing dislike of Disney princesses, in general, I was glad to have had the opportunity to play the games with my daughter.

Despite being somewhat disappointed with the gift exchange this year, I am trying hard, instead, to focus on the positive times I have had with my family.  I have not really thought much about my cancer the last couple of days (beyond “trying” to remember to take my medications), but as I sit here writing this blog, I am reminded that my disappointment with not getting “things” I would have preferred is small potatoes in the larger picture of my questionable health. So, although I have fallen short, thus far, of my expressed belief that “things” don’t matter, I am spending the remainder of this evening, and tomorrow if necessary, reframing my mood and expectations. I’ll be more cheery tomorrow.

Be well!

Merle

Tags: Bibbity Bobbity Boo, Main by Merle
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Hello, one and all, from wet and overcast Cincinnati.  MaryBeth, the kids, and I traveled over the river, through the woods, and under an ice storm to spend the holidays with my in-laws.  Unfortunately, what should have been an uneventful trip turned into an “adventure” in traveling that makes me praise the person who developed the portable DVD player.

You see, we started from Atlanta in the early morning (8-ish); we traveled swiftly and the kids did GREAT!  Then we got to Lexington.  You see, it started raining just south of Lexington and it was cold enough that the rain was freezing on the roads.  As a result, there was an accident on the I-75 overpass going over I-64.  Traffic stopped and we waited.  We decided that because we had a GPS, we’d get off the highway and take back roads.  This worked until we got to Gran Slick, KY.  You see, by that time, the rain was coming down harder and was freezing on the ground and we sat there, at the bottom of a valley, for 2+ hours.  Eventually, we got tired of waiting and pulled off onto a side street and made our way to a BP station.  While we waited another couple of hours, we ate some pizza and played card games.  The road eventually opened up (the temperature went up) and we made it to Cincinnati (albeit it 5 hours later than expected). Yeah!

Okay, I know that I said “No rain, no rainbows” in an earlier post, but I’m not quite sure what the “rainbow” is that I need to appreciate in having spent 4+ hours waiting in traffic.  I guess I can be proud that I didn’t physically maim any member of my family while stuck in traffic. 

I wish I could say this was the first time we have had trouble traveling around the holidays, but, in fact, the last 2 years also were problematic.  Last year, the in-laws and my family did Christmas in Las Vegas.  Don’t ask, it’s where my mother-in-law wanted to go (I did learn that Vegas is not really all that family friendly — not much for the kids to do).  Well, we traveled the day after I had had one of my ERCP procedures (this was before we knew I had cancer and the gastroenterologist was treating my blocked bile-duct).  Well, while we were in Vegas, I had terribly abdominal pain (so much so that I considered going to the emergency room). Well, it turned out that the stents placed in my bile duct had shifted (we think that the shifting was the cause of my discomfort).  Thank goodness, I don’t need those procedures anymore.

In 2006, we had another challenging travel situation.  That year, the family and I traveled to Catherine’s (my sister-in-law) new house in Indianapolis.  The plan was to drive from Atlanta to Nashville Friday night (12/23) after I got home from work and then go the rest of the way on Saturday (Christmas eve).  Well, we made it to Nashville according to plan.  Unfortunately, a winter storm came through that night and we spent HOURS sitting on the interstate between Nashville and Indianapolis while we waited for the highway to be cleared.  It was surreal; cars stopped as far as the eye could see and people were out in the median throwing snowballs and footballs to pass the time.  We made it about 150 miles that day, in only 9+ hours (we ended up staying at some motel) and then spent another 8 hours driving the remaining 100 miles.  The kids enjoyed all the snow, but once again, thank goodness for the DVD in the mini-van.

I know that others may have travel horror stories, but I’m looking forward to the holidays next year being all about staying HOME!

Health-wise I’m doing okay.  I’ve gotten over the effects of chemo from last week and I have been taking advantage of my new-found appetite to sample all the holiday goodies.  Luckily, the anti-nausea medicine I have works just as well when I eat too much ‘bad’ food as it does when I have chemo.  The kids, particularly my daughter, are bouncing off the walls in anticipation of tomorrow.

I hope all of you, regardless of your faith tradition, enjoy this holiday season.  Remember that the best things in life are not things!

Merle

Tags: Family, Main, Treatment by Merle
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Last night, MaryBeth and I took our daughter and younger son to Stone Mountain Park (my older son — remember the TEENager –  decided to stay home….and <gasp> we let him).  It was actually quite a nice night to do so; not terribly cold, though I was commenting last week how odd it was for it to be a week from Christmas and Atlanta hit record highs last week.  (Of course, the temperature plummeted today and now I’m wishing it was a skoash warmer.)

When we first got to Atlanta, Stone Mountain had the train that went around the mountain and a petting zoo and some other little attractions.  A couple of years ago, though, it was purchased by a company that gave it much more of an theme park atmosphere.  The main attraction area is called “Crossroads” and it’s supposed to be an antebellum-ish southern community.  Throughout the park, there are people who are dressed in period outfits.  It’s cute.

But last night, we had a mission.  My daughter still believes.  She still believes in the mysterious.  She believes in Santa Claus; she believes in Snow Angels; and last night we went to visit with both of them.

In the midst of worrying about more adult issues (health, finances, blah…blah…blah), last night I enjoyed just watching my daughter’s face light up when she sat with the Snow Angel and Santa.

I know that Santa is not part of the religious piece of Christmas, but then again, I am Jewish Unitarian, so, technically, neither am I.

My daughter was delighted to spend time with Santa and told him how, above all else, she wanted a new pair of tap shoes (which, she has been asking about for a while).  We had planned to wait until after the holiday to get a new pair, but apparently my daughter has other plans.

Interestingly, after very clearly indicating that he was in no way interested in seeing Santa, my son spent a bit of time talking with the Santa (the Santa at Stone Mountain Park, named Ed Butchart,  is very good and has been the Santa there for over 25 years and he’s even written a book about his experiences as Santa called The Red Suit Diaries).

When all was said and done, we spent 2+ hours at the park, enjoying the holiday spirit, looking at all the lights, and enjoying our time together.  I wasn’t “Merle the cancer survivor,” I was Daddy spending some holiday time with (most of) his family.  I can’t say that I have completely gotten over the worry / concern that this might be the last holiday we’ll spend together, but I am much less worried about it than I once was (I think I’m still largely being influenced by my father’s recurrence).

Don’t worry about me, though.  I am getting very good about living in the present.  Speaking of which, my daughter is singing in the cherub choir at Eastminster Presbyterian Church this evening; yet another photo op for the resident princess of the family.

Merle

Tags: church, Family, Main by Merle
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For our 10th wedding anniversary, MaryBeth and I planned an elaborate trip to Hawaii.  It took us longer to get there than we originally planned (we were trying to get from Atlanta to Hawaii on a Delta buddy pass — for those of you who don’t know, a buddy pass is a “non-revenue” seat, so you fly standby and anyone with a higher priority or who had purchased a ticket, got onto flights before us), but we finally got there.

While on the island, though, MaryBeth found a t-shirt with a rainbow on the front and the words, “No rain, no rainbows” on it. On the back of the shirt was the following:

Kimo’s Kauai Rules (purportedly by Charles Knief – http://www.crimepays.com/knief.htm)

• Never judge a day by the weather
• The best things in life aren’t things
• Tell the truth – there’s less to remember
• Speak softly and wear a loud shirt
• Goals are deceptive – the unaimed arrow never misses
• He who dies with the most toys – still dies
• Age is relative – when you’re over the hill you pick up speed
• There are 2 ways to be rich – make more or desire less
• Beauty is internal – looks mean nothing
• No rain – no rainbows

During these stressful times around the holidays, it’s important to remember some of these rules more than others.  For example, the best things in life truly are not things.  I like getting gifts as much as the next person (probably moreso than some), but when I think of that which I cherish the most, it’s not my belongings, but the love of my family and friends; the joy of laughing at a great joke; the pleasure of eating a good meal.

I often find myself thinking of these rules as I worry about finances or my health.  Perhaps they will be helpful (if not simply amusing) if you find yourself stressed during this holiday season.

Merle

Tags: Main, Theology/Philosophy by Merle
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The chemo bay is particularly full today; I guess a lot of folks want to get their treatments done before the holidays?!? I have to say that I feel particularly lucky, as I am having my treatment THIS week instead of NEXT week. By next week, I should have recovered sufficiently from this week’s treatment so I should be able to enjoy Christmas. Of course, my next treatment is on 12/30, so I’m not sure how much reveling I will do on New Years Eve…

If you ever wondered if Pavlov was correct, try coming to a cancer treatment center for any extended amount of time. I was not in the building more than a couple of minutes than my stomach got queasy; the smell of this place, I think more than anything else, sets me off. Thank goodness that part of my treatment regimen is to give me an anti-nausea drug.

Otherwise, I’m doing okay. It’s been harder than usual this holiday season to really get into the swing of things. Perhaps it’s just not feeling well, in general. Perhaps it’s the thing with my father. Perhaps it’s just the fact that despite my best efforts, I have not yet been able to win the lottery. Financial issues continue to weigh heavily on me and my family; though, I did talk with my cousin Ele (who is a lawyer). She said she was willing to submit another request for review of my case with the insurance, as well as send the hospital a letter to see if they will forgive the amount of the radiation planning. Hopefully Ele will be able to help, ’cause I would just as soon not have the added financial stress of such a large outstanding bill.

The big excitement this week is that my sons are both testing for their red belt in karate. I feel guilty because they were eligible to test a couple of months ago, but Mr. Quinn, our instructor, wanted them to wait until I could be there on the blackbelt panel. I actually have a conflict for this months testing, but I made the decision to be there for my sons, rather than attend the cub scout meeting. My boys have waited long enough and I know that at least my younger son is dying to get his new belt.

I have to admit that I also feel guilty about not helping out more at the karate school. There was a time when i felt like I was one of Mr. Quinn’s “right hand men.” I was teaching 3 classes on Tuesdays and showing up at least one or two other nights a week. Now, it’s all I can do to try and get to the school once a week. I know it’s silly, but I feel like I’m letting my instructor and, just as importantly, the students down. Perhaps in the new year, I’ll be better able to help out at the school. I just hope that the students and the parents, who have been just so wonderfully supportive these last six months, know how much they and their support have meant to me.

Merle (a-oic)

Tags: Family, Main, Merle, On my honor, I will try, The Martial Arts, Treatment by Merle
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Hamburger Hanukkah has come and gone and along with it the craziness that occurs when you get so many people into one house for the exchange of gifts.  I spoke with my cousin, Susan, about our experiences of Hanukkah when our “Granny” was still alive (my mother is known as “Granny” to my and my siblings children).  Indeed, my brother has the table that Susan and I would climb under and claim as our own while my father handed out the gifts.  Last night Susan tried to climb under the table again and, somehow, the table had shrunk as neither she nor I could fit nearly as comfortably as we once had.

I did okay for much of the evening, but got overwhelmed toward the end and had to retreat to my room in the basement.  I relaxed away from people and felt better for having done so.

For those of you who have been around for a while, you know that as much as people say I am an inspiration to them, I drew my inspiration from my father who successfully battled skin, prostate, and bladder cancer.  A couple of months before my surgery, my father also had surgery to remove part of the right lobe of his lung in an attempt to treat his fourth type of cancer (lung cancer).  Unfortunately, my father announced to folks yesterday that his lung cancer is back and it has metastasized.

This news struck me on several different levels.  I am sorry for my father, as I know that has been frustrated with his recovery since surgery (he has needed to use portable oxygen and apparently the portable units work with only limited success).  I am sorry for my stepmother, as she deals with being supportive for Dad as he goes about his day.  I am sorry for me, because I thought, in the back of my mind, that as long as my father successfully battled his cancer, I would be able to successfully battle mine.

I know our cancers are independent, but I think I am entitled to a little superstitious thinking from time to time.    Yes, I know he is older than I am.  Yes, I know his lung cancer is different from pancreas cancer (BTW, my Dad’s doctor’s gave him a 35% chance of making it to 5-years…what are my odds? Oh yeah, 20% or so).  I guess in the end, his relapse just brought back to the very front of my mind the fact that I *DO* still have cancer (regardless if, as my stepmother says, she prefers to think of me “living with cancer”) and hearing about my father just brought back thoughts of my own mortality.  I know these will pass, but they are where I am at the moment.

Last night, at Hanukkah, I spoke to my gathered family (along with my cousin, my father, and uncle) and I said how much I appreciate and had been looking forward to getting together with everyone.  I talked about how MaryBeth and I, above all else, try very hard to stay present (though, as this blog suggests, sometimes with less success than at other times). And I quoted Master Oogway from “Kung Fu Panda” who said:

Yesterday is history; tomorrow is a mystery; and today is a gift!  That is why it is called the present!

People last night appreciated that quote and I will try to live by it now.  I appreciate all the healing energy that you all have sent my way over the last 6+ months.  I ask tonight if you will join me in directing some of that healing energy toward my father, Edward, as he begins anew his own battle.

Merle

Tags: Family, Main, Merle, Theology/Philosophy by Merle
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Those of you who have been with me from the beginning know that I found out I had pancreas cancer a coupleof days before going away for the first weekend of Wood Badge training.  Wood Badge is tantamount to “graduate” training for Scout leaders and is equivalent (if not more developed) than many forms of corporate leader training.

In order to complete the course, and become a “Wood Badger,” a leader has to complete their “ticket” which contains five activities that challenges the leader to help themselves, their scout unit, or their community.  Last month, I reported that I had only 1 ticket item left and I am proud to report that I have completed that item.  I AM DONE!  The next step is for me to get ‘beaded’ (a ceremony in which my accomplishment will be acknowledged and I receive my Wood Badge beads).  I am hoping to have that ceremony in January.  (I would like to congratulate Mike Ilardis, a fellow Beaver patrol member, who has also completed his ticket and is getting beaded on Monday).

The other exciting news I have is that I have been invited to be on this years Wood Badge staff.  I feel incredibly honored to have been invited and I’m looking forward to working with such a great, motivated group of scout leaders.  Thanks, Vicki!

In more mundane issues, I woke up this morning at 3:30a (mountain time); flew to Atlanta without a hitch; and am currently sitting in the airport waiting for my flight (which is now delayed 2 hours) up to Newark for Hamburger Hanukkah.  I think I will sleep well tonight!

Have a great weekend, y’all!

Merle

Tags: Main, On my honor, I will try by Merle
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Albuquerque is 2 hours earlier than it is in Atlanta.  Usually, when I travel west, I try to stay up late on my first night, trying to adjust quickly to the new time change.  I did my best last night, but traveling to New Mexico and then spending the afternoon in meetings took a lot out of me.  I ended up falling asleep at a reasonable 9:30p (Albuquerque time).

I was very careful to set the clock on my Blackberry back 2 hours, so that it was in sync with the earlier time zone.  I then set the alarm on my phone to wake me up at 7:30a, figuring that would give me enough time to get showered and dressed and walk the 2 miles to the Indian Health Services building.  (BTW, let me just say that it was a LONG walk from the IHS building to my hotel while strolling my luggage — I went straight from the airport to meetings).

Little did I know that my Blackberry, having a mind of its own, reverted back to Eastern Standard Time and my 7:30a alarm went off at 5:30a (New Mexico time).  Of course, I did not figure this out until after I had showered and dressed (wondering why it was still so dark out, but not being awake enough to follow that thought through).

Of course, tomorrow I have the joy of waking up at 3:30a (New Mexico time) to catch a 4a shuttle to the airport for my 6a flight.  I am currently pondering whether it is even worth going to sleep tonight.  I will say this, I have done an admirable job, albeit unknowingly, of preventing jet lag.  Tomorrow will be a long day, with flights from Albuquerque to Atlanta and then Atlanta to Newark.  I might not have jet lag, but I will still be TUCKERED.

Health wise, these last couple of days have been fine.  I have noticed that I have not had much of an appetite in the evenings; I wonder if that is some of the residual from the chemo.

I’ll write more tomorrow, when I have a faster (more reliable) Internet connection.

Merle

Tags: Main, Merle, Work by Merle
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