I’m Not Dead Yet (I.N.D.Y.)

Well, I’ve been told by none too few friends that (a) I’m doing to much and not taking it easy enough and (b) that eating pizza for breakfast is not appropriate for someone my age and/or someone on chemo.  <sigh>  It seemed like a good idea at the time.

I was also reminded that I should not borrow trouble from tomorrow.  That is, just because I was tired and nauseated this week after treatment doesn’t mean I will have the same issues next time.  One person did suggest the possibility of taking anti-nausea medication prophylactically; perhaps I’ll try that next week.

As for my taking it easy: okay, I’ll agree that going into work in addition to my time at the hospital AND taking my friend to get glasses all in the same day might (perhaps, maybe) have been too much.  I took today generally easy, though.  I spent much of the day working at home (putting together promotional material for a local pancreatic cancer fund raising event (about which I will be able to talk next week, I believe).  This evening, I took the boys to karate and ended up teaching one pod of students.  It went okay, but I am a little sore at the moment.

I have to say that I don’t set out to do a lot of stuff during the week or on the weekend; it just seems to work out that way.

As I said, though, today was a good day and tomorrow isn’t here yet.

Merle

Tags: Main, PanCan, The Martial Arts, Theology/Philosophy, Treatment by Merle
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You know, when Dr. Kauh told me about the side effects of Gemcitabine-based chemotherapy, one thing he stressed was that the effects would be cumulative.  He said that I’d feel okay in the beginning, but as time went on, I would feel worse and worse.  Last night, I fell asleep twice while sitting on my living room couch.  Now, perhaps going into work took more out of me than I expected, but I was surprised at how tired I actually was.

This morning, I slept in and upon getting up, had breakfast (cereal and a cold slice of pizza — perhaps not the MOST nutritious, but there it is).  About an hour or so later, I started having a lot of discomfort in my chest and abdomen (something akin to reflux), followed closely by some of the worst nausea I have had during my treatments (at the risk of being too graphic, I was sitting on the floor in the bathroom waiting for the inevitable — which, by the way, never came).

After about 20 minutes (and a compazine), the pain and nausea subsided, but my disinterest in solid food persists (though, I did go crazy and have TWO slices of buttered toast for dinner).  I have tried, unsuccessfully to convince friends and family that it was just coincidence that I had chemo yesterday and was feeling under the weather today; no one believed me.  I must say that I am not entirely enthusiastic about my treatment if my reactions to chemo will only get “worse and worse.”

I have been remiss about not mentioning my participation in the Atlanta PurpleStride 2008 walk to raise money for the Pancreatic Cancer Action Network.  Thank you so much to those of you who have already donated.  If you haven’t done so already, please consider it.  I have also heard from several folks who are going to walk with me on November 15th.  I am looking forward to being with all my friends and family who will be there in support of me and the other folks affected by pancreas cancer.

Thank you all!

Merle

Tags: Main, PanCan, Treatment by Merle
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I woke up this morning and decided to head into work as a surprise to my branch (the biweekly branch meeting was today).  After I dropped my daughter at her pre-k school, I headed into work.  Interestingly, I couldn’t have planned it any better if I tried; the branch meeting starts at 9a and I got to work at 9:05a.  Thus, once everyone was settled down and Joyce, our deputy branch chief, had started updating the branch, I walked in.  Everyone was (or at least seemed) shocked; regardless, I was warmly received and that was nice.

After a relatively brief visit, I headed to the hospital.  Strangely, I was more nervous about this visit than I would have expected.  I am not sure why I would be stressed; there was no reason to presume I would get disappointing information about my CT scan (it came back normal) and there was no reason to think I would have an adverse reaction to the chemo (the doctor said that I should tolerate Gemcitabine about as well as I did 5FU.  Despite my apprehension, my time in the chemo bay was actually not as long as I expected (though, I had forgotten how much I dislike having my port accessed).  Sure, it’s only a little stick and a sting, but damn it smarts.

After all is said and done, though, I do not expect I’ll be back to work before Sept. 29th (the day my medical leave ends).   As I sit here, I am yawning uncontrollably and my incision is quite sore.  I’m not willing to say that I did too much today, but I’m willing to acknowledge that I may need to take it easy tomorrow to recover. 

Merle

Tags: Main, Treatment, Work by Merle
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I was told in no uncertain terms this evening that I was shirking my blogging responsibility by not blogging yesterday.  Who knew that I was depriving people of their “Merle” fix by not doing so.  I deeply apologize to any and all who were so deprived!

Yesterday was very much a day of recovery, as I overdid it both in terms of activity and in terms of the consumption of adult beverage. It’s not that I necessarily drank too much as it was that I hadn’t really eaten much ’cause my stomach had been upset earlier in the day.  I felt myself much better today and even ventured out.  I’m beginning to feel more optimistic about returning to work soon (though, I’ve been threatened with physical injury if I return to work too soon).

One of my favorite quotes (that I actually first found in a fortune cookie of all things) is: “Dream as if you will live forever; Live as if you’ll die tomorrow.”  In essence, don’t worry about the little things and let yourself dream without limits.  Early in my cancer “journey,” I vowed to NOT to sweat the little things.  Indeed, a friend from church sent me a t-shirt from cafe press that said, “Don’t sweat the petty things and don’t pet the sweaty things.”

Unfortunately, my cancer has become such an integral part of my life that it has become commonplace; to the point that I am again “sweating” the little things.  In some respects, I have lost the sense of urgency that I felt early on.  I guess that’s a good thing; I don’t feel the impending sense of my own demise (at the moment).  On the other hand, it’s a bad thing as I now find myself more likely to snap at pretty insignificant transgressions (largely enacted by my children). I hope that by becoming more aware of this tendency, I can adjust how I respond to life’s little challenges.

You know, a couple of days ago, I mentioned how much I dislike defining myself as a cancer patient/survivor.  As several people have pointed out to me, though, it’s hard not to define myself otherwise, given the prominence that my cancer plays in my life.  For example, tomorrow I go to Winship Cancer Institute for the first of my post-surgical chemotherapy treatments.  After considering previous experience at the institute, I’m expecting to be at the hospital for upwards of 5 hours.  It’s hard not define yourself in terms of something that takes up so much time.

I look forward to updating you all on how I *do* tomorrow.  I’ve been told that I should tolerate this chemotherapy as well as I did the pre-surgical chemo.  The doctors did remind me, however, that the impact of the chemo is likely to be additive and that I may feel worse and worse as time goes by.  But you know what, that’s in the future, and I’m working hard to stay present.

Right now, I’m okay!

Merle

Tags: Family, Main, Theology/Philosophy, Treatment by Merle
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A friend (my high school band teacher) recently invited me into her Facebook network.  Despite everyone thinking I’m a computer nerd (I have also been called a ‘techno weenie’), I had not previously gone onto facebook (though, I had heard of it previously).  As a result of her invitation, I created a Facebook identity and was recently completing some of the additional information about myself.  One of the last things I completed was the “About me” information.

While it is still true that I am both a cub and boy scout leader, a karate instructor, and sometime photographer, when I went to completed the “About me” information, I began with, “In 2008, I was diagnosed with pancreas cancer…”  Perhaps, at some point, I will get back to defining myself in terms other than my cancer, but it’s still pretty prevalent for me right now.  I have been told that it’s most healthy NOT to define myself in terms of my illness, but that’s pretty hard to do right now.

As for going to work this week (I had mentioned the possibility in one of my posts last week), all I can say is that right now, that doesn’t seem likely.  My day today started at 10a when my family and I went to church and then stayed for the after service potluck.  Then we picked up my younger son after his weekend camping trip.  I then had about 20 minutes at home before leaving to attend a 2 1/2 hour cub scout leader’s meeting.  Then I went back home for another 30 minutes before leaving to co-facilitate the adolescent human sexuality course at my church.  Honestly, I didn’t expect today to be so busy, but….Oy!

…and tomorrow, I rest!

Merle

Tags: church, Main, Merle, On my honor, I will try, The Martial Arts, Theology/Philosophy, Work by Merle
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In one of my earlier posts, I talked about the need to stay present through this journey. I have mentioned that people look at how I am dealing with my disease and feel inspired by how well I am recovering from surgery; by how I’m handling things; by how I continue to try to lead a “normal” life. (My karate instructor’s wife continues to call me a “miracle man” because of how I am doing and the fact that I have gotten back into showing up and helping out at karate 4 weeks after surgery.)

I was talking with MaryBeth tonight about how she and I were handling my situation. By and large, I think both of us are handling things particularly well. We have both had our ups and downs and in both of our cases, our downs are mostly tied to instances when we have had difficulty staying present. I will not speak for MaryBeth, but in my case, some days it’s easier to focus on the here and now; that right now I’m feeling generally okay (if not a little sore, but hey, what do you expect for someone who had major abdominal surgery 4 weeks ago). As MaryBeth put it, I get into trouble when I find myself worrying too much about the future to enjoy the present.

But as I have stated (several times) previously, I’m too much of a scientist and it’s hard for me to ignore the data. The reality is that things are not stacked in my favor (despite what Dr. Cameron’s physician’s assistant says). While I am going to be starting chemo to try and kill the cancer cells left in my body this coming week, the fact that there WERE cells left puts me at a distinct disadvantage of making it to my five year survival date. I don’t think of this as being negative, but realistic; at the very least, I am merely acknowledging the possibility that things may not work out the way we would prefer.

I can assure you, though, that I am NOT giving up. I am not presuming I will making it to 5 years is out of the question. I guess this raises the question: is it pessimistic (or fatalistic) to acknowledge the possibility of negative outcomes? Can one maintain a positive outlook and still acknowledge these possibilities? I for one feel the answer is yes (and in the end, sometimes it IS all about me)! I love that there are so many people out there pulling for me; it really makes me feel special when folks come up to me and tell me how they are keeping me in their prayers or sending me positive energy or thinking happy thoughts about me. This evening I went to visit my son’s boy scout troop at their campout and as I was leaving, Brian, one of the adult leaders, casually said to me, “Keep up the fight and kick this cancer’s butt.” It made me feel nice that he took the time to express those feelings.

I *WILL* keep up the fight and hopefully kick this cancer’s butt (and in typical “Merle dark humor” what just ran through my mind is the addendum, “…or die trying.”). Maybe that is where I can be inspirational: to encourage people who are facing some hardship to do what they can to face it with dignity and strength (whether it is inner strength or the strength of their support group). Sometimes all we have is the strength to put one foot in front of the other, but that is still moving forward. Perhaps tomorrow we will have the strength to run.

On a side note, my step-sister, Nancy, and her daughter came by to visit today. Nancy and her family (usually) live in Stowe, VT., but her younger daughter is going to specific school (for dance, I believe) in Birmingham, AL this year. Nancy and her daughter were in Atlanta to visit with other family and decided to come by for a visit. Unfortunately, I had already left before they got here, but it was very nice of them to take the time to stop by and visit. Now that they are so much closer, I hope there will be other opportunities to visit with them this year. Nancy, if you are reading this, thank you and I promise to be around next time you come by!

As always, please consider going to my Atlanta Stride webpage and join my team (come out and walk with me and my family) and/or consider donating. Every little bit helps. Pancreas cancer is the fourth leading cause of death for both men and women; it has the highest mortality rate of the top 5 cancer killers, yet is the least funded of this group. So I want to do what I can to help the cause. Thank you! Thank you! Thank you! for those of you who have already donated.

Merle

Tags: Cancer News, church, Family, Main, On my honor, I will try, PanCan, The Martial Arts, Theology/Philosophy by Merle
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Ah, the weekend.  Time for rest and relaxation…unless you are recovering from major abdominal surgery.   You know, I have all the best intentions of relaxing, but things just don’t seem to work out that way.  As I have mentioned previously, both of my sons are members of boy scout troop 549.  Though I have tried to be involved, the troop has a number of active leaders, so for better or worse, I’m not necessarily needed there.  In order to stay active, then, my best friend (Luis) and I have decided to go back to the cub scout pack from which our sons “graduated.”  As a result, I am the leader (and Luis is the co-leader) of four brand new Webelos I scouts.  (We had our new parent meeting tonight…)

Tomorrow, I will go to the karate school and help out as needed in the morning and then rest.  Tomorrow evening, Luis and I will travel up to Scoutland (a BSA property on Lake Lanier) to visit with our sons’ troop as they participate in the district level fall camporee (a weekend camping event with a medieval theme).  Sunday I have church in the morning and then the adolescent human sexuality course (OWL) in the evening.  Other than that, I have nothing to do this weekend. 

I’m pretty sore this evening, but I’m currently self-medicating with a frosty, adult beverage.    I understand that I am sore because I’m up and about more and more, but how can I do what I want (need?) to do if I just stay cooped up in my house all night?  (Did I mention that I may go into the office for a couple of hours next week??)  Like I said, I’m taking it easy-ish!

You all may get bored with my continual mentioning of my participation in the Atlanta Purple Stride event in November.  I will continue to request my friends and family and blog readers to please go to my Atlanta Stride webpage and join my team (come out and walk with me and my family) or consider donating.  Every little bit helps. Thank you for considering donation or joining me.  Every little bit helps.  Pancreas cancer is the fourth leading cause of death for both men and women; it has the highest mortality rate of the top 5 cancer killers, yet is the least funded of this group.  I don’t expect to be able to make a huge impact, but I would love to be able to raise a substantial amount.  Please consider donating…

Merle

Tags: church, Main, On my honor, I will try, PanCan, The Martial Arts, Treatment by Merle
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You know it’s a sign you’ve been at a hospital too long when the technicians recognize you.  I went for my re-staging CT scan today and the technician looked at me and said, “You were just in here a little bit ago, weren’t you?”  I explained that I had had my surgery to remove the tumor and that this CT was going to serve as the new baseline for evaluating future progress / treatment.  I have to say, they have not improved the taste of barium in the last 6 weeks, either.  Ugh!  And, thus, we begin again the treatment of my cancer.  Chemotherapy with Gemcitabine begins next week.

This evening I took my kids to karate and actually put on the uniform and helped out on the mat.  I continue to be honored at the number of people expressing well wishes to me and welcoming me back after my absence.  It means a lot when parents come up to me and tell me how much THEY miss me on the mat.  Several students told me they were glad I was back, too; which was all the more moving.

Lots of fundraising opportunities coming up in the next couple of months.  The point of all of these activities is to raise money to support pancreatic cancer research and to provide services to people affected by pancreatic cancer.  I’ve mentioned one of the activities already (my participation in the Atlanta Purple Stride event in November).  Please feel free to go to my Atlanta Stride webpage and join my team (come out and walk with me and my family) or consider donating.  Thank you to those who have already done so.

More about other fundraising stuff in the near future.

Merle

Tags: Main, PanCan, The Martial Arts, Treatment by Merle
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Okay, so I did too much yesterday and crashed today. I spent much of today resting, lying in bed and / or in my “healing chair.”  The other big news today was that my daughter celebrated her 5th birthday today.  That is to say that today is NOT her birthday, but in all the ‘hub-bub’ and stress over the past several weeks and months, my wife and I both were convinced that her birthday was today (it’s actually Thursday).  Regardless, she asked for and received all things ‘princess.’  In the end, she enjoyed herself (at least, it seemed she did by the high pitched squeals and the giant smiles as she opened her presents).

For those of you who have expressed concern about me, don’t worry, I’ll take it easy tomorrow; I promise.

Merle

Tags: Family, Main, Treatment by Merle
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Okay, so yesterdays post was all about giving myself permission to take it easy.  Hmmm…today I: (a) went to church and spent the morning chatting with people and telling them how I was doing; (b) going to an informational meeting for an upcoming PANCAN event (more about that later); and (c) going back to church to co-facilitate the Our Whole Lives program for the junior high youth at the church.  Needless to say, I am really (REALLY) sore; I’ll rest tomorrow. 

PANCAN is one of the main organizations that is dedicated to working to fund research, support patients and their families, and create hope for those affected by pancreatic cancer.  When I was first diagnosed, I contacted PANCAN (and their Patient and Liason Services – PALS) to see how I could get involved.  Unfortunately, through a series of unfortunate events, I was unable to connect with my PALS associate.

Today, however, I went to an informational meeting about the Atlanta Purple Stride 5k walk/run fundraiser.  I have volunteered to help with the organization of the walk, but have also started a team.  I have set a fairly modest fundraising goal ($500) and team size (10 members).  Me and my family (all 5 of us) will be walking during the event and I would love to have more folks there.  If you are so inclined, please feel free to follow this link to my Purple Stride homepage and sign up to be a team member and/or make a donation.  Thank you in advance for your support (fair warning, I’m going to be pushing this more and more over the next couple of months).  Alternatively, you can go to the main page for the Atlanta Purple Stride, choose registration to join the team or make a donation to a participant. Then enter my name or search for Team INDY.

For what it’s worth, several people have told me they have voted for this blog in the blogger’s choice awards.  Several others asked me to post the link again; as I try to give my adoring public what they want, here is the link to the ‘Best Health Blog‘ category.  Feel free to vote (or not) as your heart moves you.

Merle

Tags: church, Main, PanCan by Merle
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