I’m Not Dead Yet (I.N.D.Y.)

Today is a momentous occasion. Okay, perhaps not THAT momentous, but it IS a milestone. Today was my 14th radiation treatment, marking the midpoint of my treatment cycle. At the risk of jinxing myself, I have been kicking this cancer’s butt! I have been getting tired more easily this week than in previous weeks (I came home SPECIFICALLY to take a nap — and I don’t take naps)! Actually, as my wife reminded me, it’s going to get worse before it gets better, but I should be happy that fatigue (and some mild nausea) is all I’m dealing with at this point in time.

For those of you who haven’t seen me recently, this is a picture taken today by a fellow photographer. Early on in my treatment, one of my radiologists told me that I cannot control much with regards to this disease, but I can control whether or not I have hair. As a result, I have shaved my head. Of course, at this point, none of my other hair is falling out, so perhaps I will not lose any other hair, but I continue to shave my head everyday in defiance of this cancer.

On Sunday, I talked about how my 4-year old daughter made me sad when she told me she didn’t want me to die. (I was not sad that she didn’t want me to die, but rather I was sad that it was a possibility about which she was aware).   However, most of the time, my daughter does nothing so much as put a smile on my face. Routinely, when I come home from work, my daughter runs out of the house to tell me how excited she is to see me. Other days, I get home when my wife and kids are still out.  When this happens, my daughter’s first activity is to come find me and tell me how much she missed me. I recall my younger son going through much the same at this age, but he was less….active about it (although, like my daughter, my younger son was a big proponent of identification through impact). Tonight, I just enjoyed walking with my daughter, hand in hand, and it is moments like that I will continue to hold onto as my battle against this cancer gets more difficult!

Merle

ps — It’s been amusing to get comments from various folks, both on the blog and via Email, that have told me that they had engaged in a version of the ‘violating social norms’ activity I described yesterday. Those social psychologists…we’re a sneaky bunch. (I won’t even mention the participant observer activity in a men’s bathroom that some social psychologist did — not me — that was one of the studies that led to the creation of Institutional Review Boards).

Tags: Family, Main, Merle, Theology/Philosophy, Treatment by Merle
3 Comments »

Apparently, when one has been undergoing chemo and radiation, it is not wise for one to stay up until midnight (despite how reasonable it seems at 11:30 in the evening).  Today I was tired, but okay.  I’ve been taking prophylactic Compazine, so the nausea from the radiation is relatively minimal.  It’s 8:30p and I plan to be in bed within the next 30 minutes.  (Making up for lost sleep.)

As I have mentioned previously, I have a PhD in Social psychology (of course, we all know that PhD stands for ‘piled high and deep’).  Social psychology investigates how the individual functions within a society.  One area of interest to social psychologists is the influence of social norms on behavior.   Think of social norms as the (often) unwritten rules of a society.  For example, when we see someone we know walking toward us, we often acknowledge them by asking how they are doing.

It makes us uncomfortable when someone violates a social norm.  Think of how you would feel if someone jumped in front of you in line without permission or wore a banana suit out in public for no apparent reason.  When I taught social psychology in academia, I would have my students intentionally violate social norms and observe how people reacted.  In particular, I told them that when someone asked them how they were doing, to stop the person and really tell them how they were feeling (e.g., tell them about the bad nights sleep they had gotten, or the bad traffic on the way into school, or how they were not feeling well that day).  Universally, the students would report that the people to whom they had given detailed description acted as if they were really uncomfortable, often looking for a quick way to end the conversation (give this a try yourself…you may be surprised by the results).

Anywho, what does this have to do with me and cancer?  I’m glad you asked.  Several weeks ago, a colleague of mine passed me in the hall and asked me how I was doing.  I gave a non-committal answer which she took to mean that something was up (well, duh!).  She asked what was up and I told her she didn’t really want to know.  She persisted that she did, and I persisted that she didn’t.  She persisted some more, so I told her that I had been recently diagnosed with pancreas cancer.

The blood drained from her face and she was visibly shaken.  (She thought something was up, but she didn’t know it was something of that magnitude.)  I then spent 15 or so minutes telling her about what had happened and what I was going to do.  She asked all the typical questions (e.g., How was I feeling? How was MB handling things?  What did we tell the kids?  What is the prognosis? etc.).  By the end of our discussion she had tears running down her cheeks (and I’m sure she wished she had said something like, “Nice to see you Merle” instead).

I did try to make my colleague feel better for having asked the question and felt badly that I had upset her.  As another friend of mine described it, what I had done was say, “I have this really bad form of cancer; are YOU doing okay with it?”  I truly don’t like to upset people and so I often do not talk about my cancer unless someone else brings it up.  Some people have gotten over the initial shock and have even begun giving me guff about not being 100% (“Oh there goes Merle, playing the ‘cancer’ card again!”)  But in the end, I think the moral of the story is: if you do not really mean to ask someone how they are doing, perhaps you should acknowledge them in a different way.

Merle

Tags: Main, Merle, Theology/Philosophy, Treatment by Merle
2 Comments »

Wow! What a difference a day makes.  I’m not entirely sure why I was so wiped out yesterday; the hospital experience was not terribly stressful.  There were a couple of minor issues, though.  Despite my mantra of not sweating the little things, sometimes it’s the little things that just push you over the edge!

I’ve been having an ongoing battle with the coordinator of the clinical trial in which I am enrolled.  Now, for those of you who don’t know me, I’m something of a Type A personality; I’m what you would call a detail oriented person (at least on some areas of my life — though, my Mom would argue that housekeeping is not one such area).  It was very difficult for me to accept that, the coordinator could not give me times for my various appointments, not to mention that she had no idea why I would need an appointment with the radiologist, even though the radiologist asked that I meet with him once a week.

I have since come to realize that my Mondays include the following steps: (1) radiation therapy; (2) check in at the Medical Oncology department to get my lab orders; (3) have labs drawn; (4) see my oncologist; and (5) go to Ambulatory Care to have my port accessed and my chemo-pump attached. The first two weeks, I had my labs drawn on the same floor as the Medical Oncology department (where there is a relatively short wait).  This week, I show up and the tell me I have to go down to Ambulatory Care to get my labs drawn.  The challenge here is that there were A LOT more people here, so I ended up waiting 30 or so minutes to have my labs drawn.  My question: why was it okay to have my labs drawn on the 2nd floor for the first 2 weeks, but not now?

Now I know having to go downstairs was a REALLY minor change in my expectations, but when combined with the other communication issues, I just got grumpy.  On top of that, I had to wait in the Ambulatory Care unit for a couple of hours until the pharmacists got my chemo mixed up, plus the nurse just rubbed me the wrong way.  Again, all in all, these are minor issues, but the confluence of them all annoyed me to no end. That, on top of staying up to late the night before, and you have “set the table” for a grumpy and tired Merle.

Last night, I took my younger son to a special scout meeting (he’s working on the First Aid merit badge which my older son already has), brought him home, and went to bed.  Nine and hour hours of sleep later and I felt like a new person (I was even described as unusually perky).  As one friend pointed out, the oncologist told me that I would feel moderately yucky (again, this is a specific medical term) during the second two weeks of treatment; instead, I’m feeling pretty good and that I should focus and hold onto that.

Merle

Tags: Main, Merle, On my honor, I will try, Treatment by Merle
No Comments »

So Week 3 has begun.  I’m tired, but that may be more about going to bed late last night than the continuation of my treatment.  My bloodwork is generally still okay, but my white and red bloodcell and platelet counts are starting to drop (though, I’m still within normal ranges.  Just something to keep checking.

The weekend was enjoyable; I really enjoyed having time with my daughter.  The boys had a great time with their Boy Scout Troop at their water weekend (swimming, boating, tubing), while MaryBeth had a good time attending the wedding of our former Nanny (she watched our oldest son when he was 1).

I feel like I should write something more substantial, but I am tired and grumpy and am just not feeling inspired.

Cheers,

Merle

Tags: Family, Main, On my honor, I will try, Treatment by Merle
1 Comment »

Today is Father’s Day. So first and foremost: Happy Father’s Day to all the dads out there. When I last spoke with him, my father’s health was improving slowly as he recovers from his lung cancer surgery. Currently, he only has some difficulty breathing when he is out and about (at which point he supplements the amount of oxygen he’s getting via a portable oxygen tank). As he and I seemed to be having a ‘competition’ of illness (he’s had bladder and lung cancer recently; I had an emergency gall bladder episode, followed by 5 stenting procedures, and finished with pancreas cancer), I now feel compelled to be competitive in regards to recovery. He is doing well and I can only hope to do as well.

Yesterday, I enjoyed the day with my daughter as she put on a fashion show of unimaginable quantities (I did not realize she had all those clothes). Every time I turned around, she was in another outfit, including a Superman outfit, complete with a cape that allowed her to fly *Shwoosh* (Apparently, you cannot fly without the cape and only if you make that noise! Who knew?) Today, however, my daughter climbed into bed with me, put her head on my chest and, in a very small voice said, “Daddy, I don’t want you to die.” That is how my day began. Through the fog of sleep, I tried to explain that everyone eventually will die, but that I didn’t plan on dying for a very long time. I’m not sure where the question came from, but it serves as a reminder that kids are (often) more aware of things than we adults realize.

As I have mentioned elsewhere in this blog, I am trying to stay very present as I deal with my cancer. Today, I took my daughter to see “Kung Fu Panda.” In the movie, Oogway, the wise old turtle master (how odd is it to write that sentence) says, “Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the present.” That is certainly a useful way to think about life. I still am working on “not sweating the little things” (we won’t mention my little blow-up at Abbie when, while at the movie, she was playing around with the soda, tripped and fell, and spilled 32oz of soda all over herself). I got angry; we left; I cooled off quickly; and we made up over Bruster’s ice cream!

I once got a fortune cookie with the following quote, which I have come to understand is attributable to Ghandi: “Live as if you were to die tomorrow. Learn as if you were to live forever!” (although, on my fortune, the word ‘Learn’ was replaced with ‘Dream’). Regardless, it is a wonderful reminder of how we all need to be living our lives more fully every day. I hope that as I deal with my current chemo/radiation therapies and whatever comes after, that my kids get from their father, what Clarence Budington Kelland got from his:

“My father didn’t tell me how to live; he lived, and let me watch him do it.”

Again, Happy Father’s Day!

Merle

Tags: Family, Main, Theology/Philosophy by Merle
No Comments »

As I mentioned previously, last weekend I found a group of children in the neighborhood raising money for childhood cancer via Alex’s Lemonade Stand.  Shortly after being diagnosed, I was walking into one of the ‘Evil Empire‘ stores and there was someone dressed as a clown collecting money for the American Cancer Society.  My friend, Natalie, dedicated her Relay for Life walk, in part, to me and now my sister in law, Susan, is similarly participating in a Relay for Life event in NJ.  If you are so inclined, please feel free to support her (this link is to Susan’s personal Relay for Life page).  Our family has had our UNFAIR share of cancers this year: my father continues to recover from his lung cancer surgery (they removed the upper portion of his right lung and, well, then there’s me.

Unfortunately, pancreas cancer is one of the most underfunded research areas in cancer.  As I have mentioned, Randy Pausch has given congressional testimony in order to raise awareness.  PanCan is an organization whose goal is to support pancreas cancer patients, support and advance pancreas cancer research, and give people with pancreas cancer hope for the future.  For more information about what you can do to increase funding for pancreatic cancer research and raise awareness of this deadly disease, please see PanCAN’s action page.

I feel incredibly lucky to have so many people pulling for me.  Your love, thoughts, and prayers are wonderfully sustaining.  Though I’ve said it before… Thank you!

Merle

Tags: Cancer News, Idolatry, Main, PanCan by Merle
No Comments »

As I said yesterday, Week 2 was (generally) a breeze. I can only hope the rest of my time in treatment will go as well. BTW, my whole rare event theory took a blow this week as I <sigh> did NOT win the Mega Millions lottery. However, there is another opportunity to try again today, so perhaps tonight will be the night! (Of course, I have a personal theory that winning lottery tickets are usually purchased at convenience stores in small (often rural) communities. Perhaps I need to drive to Cumming, GA or Loganville, GA or some such?!?

I was tooling around on the net today and found a reference to the fact that Luciano Pavarotti also had pancreas cancer; he died in September, 2007. In July, 2006, during an interview for the Italian newspaper Corriere della Sera, Pavarotti said, “I was a fortunate and happy man. After that, this blow arrived. And now I am paying the penalty for this fortune and happiness.” Why did Pavarotti think that his cancer was somehow a ‘consequence’ of his fame and fortune?

This type of thinking is similar to recounts that Rabbi Kushner gives in his book, When Bad Things Happen to Good People. Early in the book, Rabbi Kushner tells of a visit to some of his congregants whose child had died when it had fallen out of their apartment window. Upon entering the apartment, the congregants asked Rabbi Kushner how this could have happened and then asked if they were being punished for not praying enough (the implication was that God was imparting retribution for some transgression the congregants thought they had done).

I understand the comfort that is involved with the belief that there is order to the world, but in reality much of what happens in the world is attributable to chaos. Chaos theory says that systems (electrical systems, biologic systems, ecological systems) are all dynamic, meaning they are constantly changing, and are sensitive to initial conditions. This sensitivity is also known as the “Butterfly Effect.” The idea being that very small changes in the initial condition of a system (such as the flapping of a butterfly’s wings) can have drastic changes.

This effect came to be known as the butterfly effect. The amount of difference in the starting points of the two curves is so small that it is comparable to a butterfly flapping its wings.

The flapping of a single butterfly’s wing today produces a tiny change in the state of the atmosphere. Over a period of time, what the atmosphere actually does diverges from what it would have done. So, in a month’s time, a tornado that would have devastated the Indonesian coast doesn’t happen. Or maybe one that wasn’t going to happen, does. (Ian Stewart, Does God Play Dice? The Mathematics of Chaos, pg. 141)

If you want to read more about chaos theory you can check out this Wikipedia page or this other brief discussion.

As I said, I understand the desire to find some reason for both good and bad things in our lives; a lot of people (my wife included) need to believe there is a reason for their existence. It is possible I may get to that point eventually, but right now, it is sufficient that I do more good than harm during my life.

Merle

Tags: Cancer News, Main, Theology/Philosophy by Merle
No Comments »

All things considered, week 2 was easier than week 1. My symptoms this week were seemingly less intrusive than last week. The difficult thing about this week was that on two different days, I saw kids coming in for radiation treatments. One of the kids that came in had a Nasopharyngeal Nose Tube. She skipped in, with her backpack on her shoulders and her parents in tow, seemingly unaware of the fact that she had cancer. Another child came in with both a nose tube as well as what looked like some kind of tubing under the skin of her skull. She was carried in by her parents, but she enjoyed watching the fish and turtles in the aquarium that is housed in the waiting room. The final child was wheeled in on a gurney and taken to a special waiting area separate from the one I was sitting in (I did catch a glimpse as I walked back for my treatment).

I have spent quite a bit of time watching the people in the cancer institute over the past couple of weeks. I am sad when I see adults who are there with me. People either around my age or older. I look at these people, these fighters, and think about the lives they have led; their partners, their children, their parents, their families. I hope that many (if not most cases) have led productive, full, and happy lives. They have stories to tell and to be told about them. A lifetime of stories.

But as sad I am for the adults, I am (at least) twice again as upset when I see the children with cancer. Seeing the children this week reminded me of how unfair life can be at times. Ideally, children should not be in hospitals with tubes in them. They should not have to worry about dealing with the effects of chemo and radiation. Their parents shouldn’t have to worry if their child will live to see their 5th, 10th, 15th birthday.  My mother once told me to remove the word “should” from my vocabulary (because it is a value judgment), but dammit, life should be fair (at least for children).

I once gave a sermon at my church in which I tried to answer the question why bad things happen to good people. I may blog about that at some point, but just as Rabbi Harold Kushner argues in his book, When Bad Things Happen to Good People, I believe that these things do not happen because of some deity enforcing his, her, or their will on the people of this planet.  Events that are unexplainable are simply events for which we have not yet learned the cause.  Maybe in years to come, with sufficient funding and research, the doctors and nurses that treat cancer patients will develop a better understanding about why cancer develops in some people and not others. Maybe…

Last weekend, I saw a sign in my neighborhood hawking, “Free Lemonade!”  As I have said, I am glutton for garage sales, so I followed the sign in hopes of finding deals.  What I found was so much more.  The kids at this house were hosting an “Alex’s Lemonade Stand.”  This is a nationwide fund raising effort based on the example set by Alexandra “Alex” Scott, who setup a lemonade stand to raise money to help her doctors find a cure for childhood cancer.  The mother of these enterprising young people told me that last year they raised over $400 (I remember giving last year, too).  This year, given my circumstances, I pulled out $25 (the sum of money in my wallet) and gave it to them.  I hope that if you happen to see a sign for Free Lemonade, you might consider doing the same.

Merle

Tags: Cancer News, church, Main, Theology/Philosophy, Treatment by Merle
2 Comments »

Well, today was generally a good day.  I got tired toward the latter part of the workday and ended up coming home and taking a nap!  (Did I mention I don’t take naps? — At least I didn’t take naps?)  I actually felt as if I were doing okay, but then dinner arrived.  The Deacons at Eastminster Presbyterian Church, where MaryBeth is a member, have been sending over food to our house on Wednesday nights after their Wednesday night dinner program.  Well, Annie Ruth (our family’s Deacon) showed up this evening and when I opened the door, she said: “Not a good day, eh?”  I guess I look a little more rough around the edges than I thought.  Well, we can’t always look beautiful, now can we?

I have a friend I want to introduce to you.  After my radiation treatment this morning I met with Dr. Korah (one of Dr. Landry’s residents).  I asked her if she could show me where my tumor was on my CT scan (I have a CD with over 1000 images, and I couldn’t tell you what was which).  So without further ado, I present Merle’s Tumor (which, I have not named, unlike Tory who named her tumor Hank).

So there you have it.  The premier of the tumor.  I should say that I fully expect that my tumor is growing smaller each day.  This image was taken before I began my chemo/radiation therapy.  So I am sure it is smaller now.  By the way, the white circle on the right side of the tumor is the beginnings of the superior mesenteric artery.  If you will recall, one of the reasons my current condition is risky is because the tumor is in contact with 2 of the 3 mesenteric arteries that supply blood to the intestines.

One other ray of hope, the Surveillance Epidemiology and End Result database hosted by the National Cancer Institute provides a variety of statistics (mortality, survival, incidence, prevalence, etc.) related to cancer.  According to the most recent data I was able to find, the 5-year survival rate for males aged 40-49 is between 15%-19%.  Now you may be saying to yourself: (a) this is pretty morbid and (b) 15%-19% doesn’t sound like really great odds.  Well, I have two responses: (a) keep in mind that if there is an improbable outcome, I am likely to get it (see my post from a couple of days ago about all the improbable things that have happened to me thus far) and (b) 15%-19% is 4x to 5x better than what I thought the survival rate was for pancreas cancer (4%).  So I’ll take these increased odds any day of the week and twice on Sunday!

More tomorrow.

Merle

Tags: Cancer News, church, Main, Treatment by Merle
1 Comment »

I have to say that I am feeling generally okay during the first part of my second week of treatment.  I have even be able to stay awake later and later (though, that is, in part, ’cause I’m trying to make up time I have taken off from work for my treatments / doctor visits).  I am still having mild nausea and yesterday I had a bit of a scare with an incredibly sharp, but not localized, pain in my abdomen.  It started on the drive to the hospital.  By the time I got there and dropped my car with the Valet (I get free Valet parking while I have my radiation — then again, I have gotten the EOBs and I know the charges Emory is submitting to my insurance for my radiation, so they can afford to pick up my $7 parking fee), I was in a lot of discomfort.  I very quickly decided to take some pain medication and that relieved the discomfort in 15-20 minutes.  The nurse practitioner was nonplussed about the event and made some suggestions on what I can do to prevent it.  We’ll see, but I spent a large portion of the day yesterday being tense, waiting for another attack.

Other than that, yesterday a friend and I went to see an ATROCIOUS movie: 10,000 BC.  I’m not sure what possessed us to pick that movie, but oh my, but it was bad.  Here is Dave White’s (from movies.com) review:

The Basics:Teenage caveman from Bedrock goes on hero’s quest, fights giant dino-birds, wooly mammoths and bad guys with darker skin, then befriends a huge tiger and some jungle people with even darker skin than the bad guys. So it’s kind of like a movie made in 1959, if only 1959 had fake-animal-creating technology.

What’s the Deal? When you enjoy yourself, do you really care what the reasons are? You don’t, right? You shouldn’t anyway. So if I tell you that this movie sucks but that you’ll have a good time anyway, will you just let that be? Because the parts with the fighting and the running and the throwing of spears and the battling of giant animals and the bonking of people over the head with clubs and rocks and stuff — all of which make up about 85 percent of the movie — are kind of fun, even if none of it makes any sense and the whole thing is just a PG-13 attempt to bite off a piece of that Apocalypto box office.

The Game Is Called “Pick One,” And Here Is the First Question: Early in the movie, we see tribes moving through a snow-capped mountain pass. They stop to find evidence of a kidnapped young woman from their clan. Then, in the very next scene, they are slashing their way through a steamy bamboo jungle. Is this because:
     (a) The reels were shown out of order.
     (b) The continents were still really close together then.
     (c) No one cared enough to think that part through very well.
I don’t have an answer to the question. But it’s a fun game, isn’t it?

Best Things About It:Foxy cavepeople with good teeth, decent CGI animals, blatant disregard for actual archeological findings regarding the existence of ancient humans, made-up languages, actors who look like they’re freezing their butts off.

Dave doesn’t go into:

• Why most of the cast members are speaking with British/English accents
• The similarities to the exodus story of the Jews.  The bad guys are going around the land capturing folk (including people from the “hero’s” village) to go to work on building pyramids for “The All Mighty” (some shroud encased guy that fancies wearing metal “Freddy Kruger” type nails on his fingers).  The “hero” (and his ‘army’) get to the city where the slaves are working; he then, almost single handedly, convinces all the slaves (note there are more slaves than bad guys) to rise up against their masters; and in the end kills the “All Mighty” and frees the slaves.
• The similarities to the Thanksgiving story.  After freeing the slaves, members of one of the tribes that fought with our “hero” gives him and his people bags of seeds so they can plant corn and other (presumably) vegetable bearing plants.

It was awful…I saw it at the $2.00 movie theater and I paid $1.99 too much.  I just don’t know what’s worse: (a) that someone came up with, wrote, and pitched this idea to a major studio; (b) that the studio actually agreed to have it made; or (c) that I paid money to watch it?  In the end, though, it’s nice to have something other than cancer to talk about from time to time, so there is that!

Merle

(ps – I bought a lottery ticket last night, though I haven’t checked to see if I have won or not.  Wouldn’t THAT be a kick!)

Tags: church, Main, Theology/Philosophy, Treatment by Merle
2 Comments »