I’m Not Dead Yet (I.N.D.Y.)

So today is the big day; the day family, friends, co-workers, and other assorted people will gather together to celebrate the end of my chemo/radiation.  You know, the end of chemo/radiation seemed like such a big deal (that I thought we should have a party to celebrate it) last week, but seems less so this week.  I guess the “novelty” of NOT having to go to the hospital every day wears off as quickly as the novelty of HAVING to go to the hospital every day wore off.

The last couple of days I have lamented to friends that I am “stressing” (not terribly, but a little) about not having enough crabs or shrimp.  Universally, I’ve been told: (a) there will be plenty of food, as everyone coming will bring something; (b) you warned people that the crabs will go quickly; and (c) that this party is NOT about the food, it’s about me.

On the one hand, I really appreciate how much support I have received from everyone.  It helps make me feel loved and cared for, and it has helped reduce the sting of this whole cancer thing tremendously.  When my friends and family ask how I am doing these days, it is not done perfunctorily, but rather it is born out of a real desire to see how I am doing; and for that I am grateful to each and every one of you.

On the other hand is the shy, self-deprecating Merle, who continues to have difficulty accepting the compliments people give me as I fight this disease.  This past week, I met with my supervisor at work for my mid-year evaluation.  In my self-eval, I said I was fully successful in everything (only in part because I have been worrying about my cancer for the last 3 months).  During our meeting, Kathleen used words like “amazing” and “incredible” to describe the fact that I continued to work as I fight my battle.  Other people, having read this blog and found out all the things I do (work, photography, karate, scouts, church, etc.), similarly use glowing adjectives to describe me.

When I hear these praises, though, I tend to discount them as people being (overly) kind, as people not knowing the “real” Merle, as things people say to someone with cancer to make them feel better (though, truth be told, I have been unable to graciously accept most compliments for much of my life).  I think this inability, though, grows out of being fat as a kid and never quite feeling as if I fit in.  As a kid in middle and high school, I had to be (at least in my mind) gregarious and funny to convince people to like me.  I think, to some extent, that continues today.

I realize this is something I need to work on, and I am trying to get better.  Unfortunately, what I am getting better at is externalizing the accepting behavior (e.g., when someone pays me a compliment, I am better at saying “Thank you”).  Unfortunately, I think I have a long way to go until I get better at internalizing the acceptance.

All of this to say that, while I am looking forward to partying with folks tonight, there’s a part of me that knows it will be difficult as undoubtedly people will be saying positive things about me.  Perhaps this will be a good experience of immersion therapy.

Merle

Tags: church, Family, Main, Merle, On my honor, I will try, The Martial Arts by Merle
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Today wasn’t ALL pleasant.  Let me start with the not so pleasant.  After not working out for 6+ weeks, one’s muscles get pretty sore the day after exercising.  Luckily, I didn’t push myself too much, so the soreness is tolerable.  I thought about getting up this morning, but chose not to in lieu of letting myself heal.  Tomorrow, though, I’ll get up to exercise again.  I may even try running a little tomorrow?!?!

Now onto surprises.  The first is from a friend of mine from church.  He sent me an Email with the the following link to NewsChannel3.  I knew there were a lot of people visiting the blog, but…

Then I got home from work and found a package in the mailbox.  The package was the ultimate Vermont care package from one of my step sisters (Nancy) and her family.  First, the package contained a big jug of pure Vermont Maple Syrup.  Instructions for it’s use include pouring on pancakes, drinking it straight, or injecting it via my chemoport.  Also included in the package was lime green colored duct tape.  Now I do not know if the lime green color has any substantive meaning, but I’m sure Nancy realized that with my boyscout skill I could fashion and appropriate medical instrument to excise the tumor, if traditional medical procedures are less than successful. 

Finally, I received a call from my cousin Susan, who is a lighting designer, based in NYC.  Susan is in town for a couple of shows at the Rialto Theater at which the Urban Bush Woman Dance Company will be putting on two (I think) shows.  Well, it turns out that the show on Saturday ends at 2p.  That means that my cousin and her daughter can come to my party.  Woo Hoo!

What problems cannot be solved with maple syrup, duct tape, family members and friends?

Merle

Tags: Family, Main, On my honor, I will try by Merle
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I had planned to write this post last night, but I got home and decided that MaryBeth and I needed an evening in which neither of us spent time on the computer.  Instead, we spent the evening together, in each other’s arms.  So I hope those of you who have told me that they read my blog daily, I hope you will understand.

Yesterday, not only did I get up and workout (and by the way, after 6+ weeks, what seemed like a relatively easy workout apparently was not, as my muscles are quite sore today with the promise of more soreness tomorrow), but I also went and helped teach a karate class in the evening.  It was nice to be active again, though, as I said, I fear I will be sore tomorrow.

During the day, however, my “blue” mood (from Tuesday evening) persisted, until I got a call from a friend.  Two years ago, I was at the biennial conference of the International Society of Research on Aggression in Minneapolis.  (As an aside, in 2006 I found out that the conference this year was scheduled for Budapest, Hungary.  I lobbied for 2 years to get my division at CDC to send me.  I submitted two proposed talks that were subsequently accepted and I was jazzed about going to Budapest.  Then I got cancer.  <sigh>  Cancer really does suck!)

At the Minneapolis conference, though, I met a colleague who works at the Research Institute on Addictions in Buffalo, NY.  Now, I’m not sure what makes people ‘click’ — when they meet someone whom they recognize as a kindred spirit — but Kathy and I clicked.  Perhaps it was the fact that she was a smart aleck like me…or had an odd sense of humor like me…or that her research interests were similar to mine…or a confluence of those and other things.  Nevertheless, over the past couple of years, Kathy and I have kept in touch.  We have commiserated with each other about the joys (and challenges) of having young kids; of health problems; of working in the area of violence; and we have developed, I think, a pretty good friendship both personally and professionally. 

So yesterday, as I sat in front of my computer, trying to puzzle out a particular analysis, Kathy called; not so much because she wanted to check up on me or had some professional question, but because she just wanted to say ‘Hi’.  As the old Ma Bell slogan used go — Kathy just felt like “reaching out and touching somebody” (me).  Kathy listened to me vent; commiserated; offered suggestions; and generally made me smile with talk of her four-year old, or her husband’s photographic skills, or her (accurate) perceptions of my really strong support system.

Her call just emphasizes how important it is that folks not worry about saying the “wrong” thing.  It’s more about reaching out and (re-)connecting with me than it is about saying the “right” thing.  Whether you are calling or Emailing or writing (do people still use the postal service?? ), I most appreciate that people care enough to make that contact.  Something as little as a note or a phone call really DOES make a difference — and can change a ‘bad day’ into a ‘good day’ pretty darn quickly!

Merle

Tags: Family, Main, The Martial Arts, Theology/Philosophy, Work by Merle
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In general, today was good, but has petered out toward the end. I’m feeling run down, which, I guess, is to be expected given that I worked a full day + an hour and half today. I’m going to publish this post, take a shower, and hit the hay. Tomorrow is a big day — my first day back in the gym.

When I was first diagnosed with cancer, I got really stressed (this is where my older son would say, “Well DUH!”). But as a result of the stress, I lost almost 10 pounds. The really disturbed part of my brain said, “Well, if I have to have cancer, at least I will be losing weight.” (Despite what my wife might think, I’m not terribly obsessed by my weight, but having been morbidly obese for the majority of my adult life, I really want to make sure I do not slip back into old habits.) Once I got over the initial stress, though, my weight came back. I’ve been pretty consistently right around 220 pounds for the last 6 weeks. My hope is that I can lose some of the extra weight by working out. Don’t worry, I won’t over do it and really, for all of you who say it’s good that I didn’t lose weight — really, if you’ve seen me, you know that I am far from starving to death.

Anywho, all that to say that I’m looking forward to getting back into the gym. I walk 10 flights of stairs everyday at work, but I want more. We’ll see how I do tomorrow.

A couple of random thoughts:

1) Lots of folks ask me how I’m doing. In answer to this question Lori Hope suggests that you take us [cancer patients] at face value. If we have a smile on our face, you can presume that we are feeling okay or perhaps have even forgotten we had anything wrong with us in the first place. I like that saying. In many ways, I am not a deep person; I wear my feelings on my sleeve. I’ve been told by many (many) people that it’s painfully obvious when I am not in a good mood. So I will echo Lori’s words: if in doubt, take me at face value.

2) I remain concerned about my wife, MaryBeth. Someone once told me that regarding my cancer I have the EASY job; I have to worry about keeping myself positive and fighting the cancer. MaryBeth has to care for the family, be supportive of me, and care for herself, including thinking and probably planning what she will do if things don’t go the way we want them to. I may be wrong, but I remain concerned that MaryBeth is not taking care of herself as well as she could; I wish she would take advantage of the resources available to her via Hamburger Helpers, via the various church communities to which we/she belongs, or some other resource. I guess I just worry about her and, much as she must feel in regards to me, I often feel unable to help or provide solace.

As the name suggests, I am feeling a general sense of malaise, so perhaps that is coloring my thoughts today, but there you have it.

Merle

Tags: Family, Main, Merle, Treatment, Work by Merle
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Despite the need for a mid-afternoon nap, I was able to put in a good 4+ hours of work from home today.  My aches and pains have subsided and I have reduced the amount of pain relievers I had been taking.  In case I hadn’t mentioned it, I think it SUCKS that I felt sicker the 3 or so days AFTER I stopped treatment than I did for most of my 6 weeks ON treatment.

It’s probably a good thing that I did not go to work today.  I had hoped / planned to get back into the gym and lift weights and walk / run on the treadmill. I’m not sure I could do any of that (but maybe on Wednesday!! )!  I’m getting excited about the party; while I have heard from bunches of people who cannot make it, but I think there should be a couple of folks who will be able to make it. I really do not have a sense of how many people will be there.  Good grief, if only a few show up, we’ll have a bunch of crabs and 20+ pounds of shrimp to eat; I’ll do what I can.

It has been nice having my mother-in-law (Elaine) visiting this past week.  She tirelessly worked to try and whip our house into order.  (Strangely enough MaryBeth and I have been focusing on things other than the orderliness of our house these past several months.)  Nevertheless, Elaine has been a great help — watching the kids, folding laundry, shopping for food or other stuff.  Probably the nicest thing is that we didn’t need to ask her to do things; she just found jobs for herself (whether we thought they needed to be done or not)!  Thank you Elaine for all that you have done this past week.

And again, I cannot say it enough, but I really appreciate how much your support has meant to me.  Thank you!

Merle

Tags: Family, Main, Treatment, Work by Merle
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David Moose wrote in a comment that my friends would appreciate a list of things they could say (sort of the opposite of the list I provided last month of things NOT to say). Unfortunately, it is much harder to create a list of things TO say than what not to say. What is appropriate and helpful today may not be tomorrow. A lot depends on my mood, how I’m feeling, both physically and emotionally, and who is doing the talking; however, here is my best attempt to provide such a list.

1) Perhaps the best place to start is to talk to me about anything OTHER than my cancer. Talk to me about the weather, a job you have for me to do, an amusing anecdote about your friend / spouse / child / pet / etc. I have come to really appreciate when a conversation is not about me and my cancer, but about every day kinds of things.

2) Provide sympathy rather than pity. What’s the difference? I’m glad you asked. Merriam-Webster provides the following definition of sympathy: “The act or capacity of entering into or sharing the feelings or interests of another” Merriam-Webster defines pity as: “Sorrow for someone who is suffering, distressed, or unhappy.” However, according to Merriam-Webster’s online dictionary, sympathy implies a tender concern for someone’s distress, but can also imply a power to enter into another’s emotional experience. Pity, on the other hand, sometimes implies a slightly contemptuous sorrow for one in misery or distress. I understand that people have a hard time understanding what it’s like to find out you have cancer, but please do not feel sorry/pity for me. Instead, it’s okay just to say, “I wish you were not going through this.”

3) Tell me a joke. A friend of mine from Pennsylvania once vowed to tell me a joke every day. I appreciated the thought. I don’t need a joke everyday, but I do have an overly developed sense of humor and appreciate when someone shares their sense of humor with me.

4) “What can I do to help?” Offers of help are always appreciated. Moreover, as Lisa McLeod (a member of my church) told me, “There will be times that people will just do things for you; deal with it!” As I continue to move along this cancer journey, my family and I will need help with meals, with childcare, with odd jobs around the house. Feel free to ask what we need. The one thing I do ask is not to make an offer you are not willing or able to keep. I read a story from a cancer patient who said a friend had offered to give him a ride to an oncologists appointment, but on the day of the appointment, the friend called the patient to ask if he (the patient) could change his appointment (apparently the friend had a conflict through work).

5) The number one item on my list of things not to say, was to say was ‘Nothing.’ I’d rather have you say the wrong thing, than nothing at all. Thus, it’s okay to say, “I don’t know what to say, but I’m here for you.”

When it comes down to it, it’s not the words that matter as much as it is the act of reaching out and saying, either explicitly or implicitly, “I’m there for you. I care.” As Leroy Seiver’s said in an NPR piece several years ago: “Maybe it’s just the act of trying to reach across that dividing line that seems so huge to all of us on both sides, maybe that’s what’s really important.”

Merle

Tags: Main, Merle, Theology/Philosophy by Merle
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Apparently right after I stop chemo and radiation.  Several people have reminded me that Tuesdays during the last half of my treatment tended to be challenging days (health wise).  My not feeling well from yesterday continued through much of today, though I did try and help my friend Luis build a sidewalk walk in my backyard today. Unfortunately, i was out for about 20 minutes and was sweating and breathing heavily and feeling worse than I had, so I ended up coming inside and laying down. I stayed in bed for the majority of the day to save up my energy. With Grandma Heidrich visiting, we decided to go to Dave & Buster’s to celebrate my older son’s birthday (which isn’t for several more weeks (but Grandma was here NOW), as well as the end of my treatment!

I made it to D&B and even ate some food (prior to that I had only managed to eat an apple and a small thing of yogurt). I sat at the bar after dinner, though, sipping on a Bitter’s and coke (for those of you who did not know, Bitter’s and coke is an old bartender’s remedy for an upset stomach). They helped a little, but the real issue is that I feel as if someone punched me in the stomach — it’s a fairly dull, though pervasive, ache in my abdomen.

Long-time reader’s of my blog might remember how, when I had first learned of my diagnosis, I started having stomach ache’s, which, at the time, I attributed to my “feeling” the tumor. When it was pointed out to me that perhaps it was nerves, the ache went away (and boy, did I feel foolish). My aches yesterday and today feel much the same, so I tried taking some anti-anxiety medication to see if that would help. We’ll see. In the meantime, I will go take a warm shower and see if warm water on my tummy helps.

There is something “unfair” about feeling worse AFTER my treatment, though. Though, life is not always fair and, as Randy Pausch has said, “We cannot change the cards we have been dealt, just how we play the hand.” With that in mind, I remain, as always, “all in!”

Merle

Tags: Family, Idolatry, Main, Merle, Theology/Philosophy, Treatment by Merle
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First let me say thank you to all of those of you who either in person, Email, voicemail, or otherwise have sent your congratulations for making this milestone.  I’m very excited (I cannot begin to tell you how much) about finishing this phase of my treatment.  Your (collective) love and support has been great and I appreciate and love you all.

Today started as has most days.  I got up feeling generally pretty good, but after lunch, I started feeling queasy; by 3p I felt worn down; and by 6p I feel like I’m dragging.   Perhaps as well as my body did while ON chemo and radiation, this is not rebound from being OFF?  Either way, we had to reschedule a family celebration of yesterday.  I’m sure I’ll feel better after a good night of sleep, but right now, I would say I feel as yucky as I did on some of my “Not Good” days!  I’m sure it will pass, but today my illness caught up with me.

Last night I went to a scout leader’s meeting.  As I was getting out of the car, I saw a gentleman named David Moose, also getting out of his car.  David waved and came over and asked how I was doing.  Before I could respond, he put his arm around me and said, “Oh wait, that’s one of the 10 things I’m not supposed to say!”  That simple statement brightened my day.  David did not know me before April 25th (the Friday of the first weekend of Wood Badge training), yet throughout the training and beyond, he has shown me compassion and friendship matched by few others in the scouting community.  Beyond that, David has taken the time to read this blog and keep tabs on me and again, that means a lot to me.

I will be working with David and other leaders to help provide adult leader training (ALT) for boy scout leaders in the fall.  After leaders talked about ALT during the presentations last night, I asked David if I would need to talk to folk about my situation.  He assured me that he had already done so and that I should only worry about doing what I am able to do (within the limits of my illness) to help with the training.

I mentioned in an earlier post that purple is the color of pancreas cancer awareness.  As a thank you to those who have supported me, I had made purple “Hamburger Helpers” wristbands as a small token of my appreciation of everyone who has supported me.  My wife and I are in the process of handing them out, so bear with us.  Last night, I gave one to David.  Now, David is a giant of a man (both literally and figuratively) and the wristband would not fit around his wrists.  So instead, he affixed the band to his uniform so (in his words): “People will have to ask me what it’s about.”  I am honored that David was willing to do so; it’s amazing the how little things, the small tokens of friendship, love, and caring, often have the greatest impact on us.  Thank you David; I was moved.  Again, thank you to all of you who have walked with me as I have traveled this first leg of my journey to better health (positive spin, right?).

Merle

Tags: Cancer News, Main, On my honor, I will try, Treatment by Merle
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I AM DONE! (for now)!

Merle

Tags: Main, Treatment by Merle
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In his Last Lecture, Randy Pausch says that having pancreas cancer is one of the great examples of cognitive dissonance. It occurred to me, however, that people might not quite understand what cognitive dissonance was. If you do, bear with me. Cognitive dissonance is a theory of human motivation (typically associated with Leon Festinger) that asserts that it is psychologically uncomfortable to have cognitions (e.g., beliefs, attitudes, behaviors, etc.) that are inconsistent with one another. Further, because dissonance is uncomfortable, people are motivated to change their beliefs, attitudes, or behaviors.

For example, people might experience cognitive dissonance if they value living a healthy life, but smoke cigarettes. Now, people who smoke know smoking is a bad for them. Some are motivated to rationalize their behavior by telling themselves that smoking helps keep them keep their weight down. By so rationalizing, people who smoke are able to reduce their dissonance.

So I am finally understanding what Dr. Pausch was saying. I have a very serious form of cancer that is potential deadly. Yet, I feel fine (‘peppy’ even); I don’t ‘FEEL’ like I have cancer.  One colleague today told me I was amazing having ‘weathered’ my treatments as well as I have.  I certainly do recognize how lucky I have been.  I don’t know if I am amazing, but I’m certainly Not Dead Yet! 

On the other hand, I have found toward the end of these last 5 1/2 weeks that it has become increasingly easy to forget that I have cancer.  That may seem odd, but the last 5 1/2 weeks have shown me that I can get used to almost anything.  Going to the hospital every day to have the radiation has become routine; seeing the doctors just a formality.  Right now, the thing I’m looking forward to the most (besides being “permanently” disconnected from my chemo pump) is being able to exercise again.  I am looking forward to being just Merle for a couple of weeks.

Tags: Idolatry, Main, Theology/Philosophy by Merle
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