I’m Not Dead Yet (I.N.D.Y.)

Happy Halloween to all of you.  The kids were bouncing off the walls today with excitement about Halloween.  That’s right, tonight, in a tried and true American tradition, we dressed our children up and sent them out to beg for candy.  Second only to Christmas, Halloween is, for my children (and likely many others) a favorite holiday.

My children went as a Knight (my oldest), a zombie boy scout (younger son) and a Cinderella princess (my daughter).  While my sons enjoy Halloween (because of the candy), for my daughter, it held an almost magical sense, as she got to spend all day dressed up and playing the princess (including having me play the coachman as I drove her to school).  While she enjoyed Halloween last year, this year was the first year that she understood and was excited about going trick or treating.  I enjoyed being able to share that with her.  She will like Halloween next year, I am sure, but it won’t be quite as magical as it was tonight.

In other news, tomorrow morning (as in around 5a), I head up Scoutland on Lake Lanier (one of the Northeast Georgia Council scout properties) for the outdoor education portion of Adult Leader Training.  I have been a part of the training team this year (one of my ticket items for Wood badge) and I have enjoyed being a trainer.  I really do feel that I have a reasonable amount of ability as a trainer, so I look forward to continuing in that capacity.

Tomorrow, among other things, I am a demonstrator of outdoor cooking techniques.  I will be cooking 3 dishes: Fiesta chicken with black beans (much like a chicken chili), sweet cornbread, and my strawberry shortcake.  I will bring a little camera and get pictures to share in a future post.  All of these will be cooked in dutch ovens, and I’ll be stacking a couple of ovens, too (first time I have done that).  The only down side to the training is that we’ll be sleeping in tents tomorrow night, when the temp dips down into the low 40s.  Thank goodness I have a warm sleeping bag.

I haven’t mentioned it in a while, but I do want to again encourage those of you who have been putting it off to consider donating to my particpation in Atlanta’s PurpleStride event on November 15th.  I am excited that so many folks (a) have donated and (b) have indicated that they will come out and walk with me and be a part of team INDY.  I have raised my goal several times; I am now hoping to raise at least $2000.  Please consider helping.  Thank you in advance.

Boo…..muahahahahahaha…..

Merle

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After being off chemo for 2 weeks, I guess it was easy to forget about the side-effects of having the treatment.  All in all, things went well today (relatively little nausea), but I crashed around 4p.  I guess I overdid it during the day;not that I did anything extraordinary, just the regular stuff I do almost everyday.  At 4p, though, I realized I was terribly tired and ended up sleeping for about 4 hours (and I DO NOT nap).

Right now, I just feel out of it; I had forgotten about this feeling.  Despite these feelings, though, there is still a part of me that wishes that the doctor had not changed my treatment regimen.  I understand, as several friends have told me, that it is better to have a reduced dosage on a reduced scheduled and actually GET the treatment than to use higher dosage or more frequent administration and run into problems when my body does not adapt well.  As one friend told me, I have to trust Dr. Kauh.

Finally, MaryBeth and I want to extend our heartfelt sympathies to Brenda and her family, as her husband, Kevin, recently lost his battle with angiosarcoma.  MaryBeth (and I, before my surgery) shared a condo with Brenda and her mother-in-law while we were in Baltimore.

Merle

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Well, I went for chemo today and I did not disappoint the doctors; my blood counts (though a little low) were good enough for me to get my infusion.  A particularly good piece of news is that my CA19-9 level two weeks ago was 3 (down from 5).  Dr. Kauh seemed to think the fact that it was still down was a good sign.

Dr. Kauh and I talked about my treatment regimen moving forward.   He decided that given my (lack of) tolerance for Gemzar, that he wants me to try a 1 on, 1 off cycle; essentially, I’ll go in for chemo every other week.  He said he wanted to see how I did after 4 months and then possibly continue through to 6 months.

Unfortunately, the scientist in me wonders how this decision will affect the efficacy of the drug.  Originally, Dr. Kauh talked  about me being on a 3 on, 1 off cycle for 6 months, for a total of 18 treatments.  Now, he’s talking about essentially 8 treatments (twice a month for 4 months) with the possibility of an additional 4 treatments.  I just wonder if the drug is as effective if I don’t get as much of it.

Merle

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I have had a series of discussions with folks recently that grew out of some of my more recent posts.  People call me an inspiration because of that with which I am dealing.  However, as one friend pointed out, people are not so much saying that they think I am “super-human” but rather saying that they admire me for dealing with a situation with which they, themselves, are not sure they would be able to deal.

The reality is that people, in general, are resilient and can adapt to a variety of adverse conditions.  I am not special for dealing with my cancer, I was faced with a crisis and I adjusted and adapted to it.   Yes, attitude is an important part of dealing with and beating this illness, and anyone who knows me, knows I have quite a bit of attitude.

People ask me how I’m doing and I respond that “I’m six feet over!”  People tell me they are glad to see me and I repond that “It’s good to be seen.”  In a division wide meeting last week, a new staff member was introduced and it was reported that she was ABD (which means all but dissertation).  Rodney Hammond, my division director, decided to make a joke and said, “You know what ABD stands for?  All but dead.”  I immediately responded (from the back of the room) so everyone could hear, “I’m not dead yet.”  In that, I accomplished something many people have been unable to do: I rendered Rodney speechless.

All of this to say that I have attitude; and I am working very hard to keep that attitude positive.  I told someone (actually several someone’s) this past weekend, that I am Type A enough that not knowing whether the cancer will or will not come back is killing me (pun intended).  As Amy mentioned in a comment to a recent post, it’s okay to be normal, though; to not spend so much time worrying about the future.  So that’s my goal for the time being.

Everyone has been telling me how good I look; we’ll see if that remains true after Wednesday.  I am approaching my chemo treatments much like I did with the radiation before the surgery: I have a fixed number of treatments I need to have (about 18 treatments, based on the 3 or, 1 off schedule for 6 months).  I have had 3 treatments, so that leaves 15 left.  (I’m not sure if that’s how it will end up working out, but until I hear otherwise, that’s how I’m thinking of things.)  Thus, getting my treatment on Wednesday just means that I have one less treatment with which to deal.

Here’s to one less treatment.

Merle

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I am used to writing these blog posts at the end of the day, but I have decided to buck the trend and share even more of my stream of consciousness thoughts.  First, however, I want to again thank those of you who were moved, either via the comments or Email, to share your thoughts and reactions to what I have written recently.  I was truly not fishing for compliments and well wishes with my posts (though that is mostly what I have been getting), but I appreciate that my friends have been moved to try and raise my spirits and yet again express their support of me.  I have said it before, and I’ll likely say it again, I remain humbled by the outpouring of caring that I receive daily (here on the blog and in person).  Words are insufficient to express my appreciation, so I will (again) say, “Thank you!”

Mike, a fraternity brother of mine from my whacky college days, wrote that I should not worry about the past, look forward to the future, but live in the present.  In a post early on in this journey, I wrote something saying that, in essence, I wanted to live each day recognizing that it was a gift (actually, I think I said I was going to live life in accordance with the fortune I found in a fortune cookie: “Dream as if you’ll live forever; Live as if you’ll die tomorrow.”).

I had another revelation yesterday while speaking with Phyllis and Reshma, friends at work.  I had once said in this blog that I didn’t want to sweat the little things; that I wanted to focus on the gifts of each day and not waste my time worry about things that were, in the big picture, pretty insignificant (e.g., whether the kids had picked up their rooms).  What I realized during my conversations, though, was that while I had lived that motto (“Don’t sweat the little things”) well for a while, I have slipped back to letting the little things bother me.

It is hard (at least for me) to maintain that enlightened level of living for long, particularly when I am in a wait and see kind of holding pattern.  What the folks from work suggested to me, though, was that I had gone back to living my life normally and that in the normal course of living and being a parent, the little things often become the focus (even when we don’t want them to do so).

Again, this all comes back to me just being in an odd situation; having cancer (and having people KNOW you have cancer) and feeling generally healthy.  While that will change somewhat next week when I start back up with chemo, the fact remains that, as I mentioned yesterday, this ‘wait and see’ reality of post-surgical treatment and beyond, will produce a fair amount of dissonance for me.  As with most anxiety provoking situations, I’m sure I will adjust, but for now, at least I am able to acknowledge and identify the source of my anxiety.

Cheers,

Merle

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So, as I talked over my post yesterday with folks, I found it easier and easier to express how I am feeling.  I have talked previously about my friend who continues to encourage me to evaluate the challenges in my life as either a crisis or an inconvenience.  I think, for all intents and purposes, my cancer has gone from being a crisis to an inconvenience.

The complacency I spoke of yesterday I think is just my realization that, right now, my cancer is NOT primary in my life.  Randy Pausch talked about the cognitive dissonance of pancreas cancer; pancreas cancer is such a deadly form of cancer, but is relatively asymptomatic until it gets pretty far along.  It just strikes me as odd that right now, things are generally “normal.”  People ask me how I’m doing, and I can honestly report that I’m doing okay, yet I have this cancer.

I had lunch with a colleague today who suggested that he was impressed with how I was handling things.  There was talk about people in my situation possibly curling up mumbling incomprehensibly to themselves.  That is just not something I can do.  Perhaps it’s my sense of responsibility to my wife and kids.  Perhaps it’s my sense of responsibility to other folk who have come to depend, in one way or another, on me.  Perhaps it’s just my inability to “give up.”

So for the time being, I will go on with this inconvenience of having cancer.  Thank you for those of you who continue to support and care for me.  It means a lot.

Merle

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For those of you who have been reading for a while, a lot of this will be stuff you may (or may not) remember.  But recently I have been waxing philosophic about my situation and I want to try to put into words what has been going through my head.  Before I begin, though, for those of you who are wondering, I am doing well.  My appetite is back, I’m not as fatigued as I had been,  and I feel generally okay.  This is week 2 of my 2 week holiday from chemo.

This really has been quite the crazy road I have traveled since April…actually, since last August (2007).  To remind you all, I was admitted to Emory Eastside Hospital on August 5, 2007; I had been feverish and vomiting so violently that by the time my wife and I dropped our kids off at church, I was fairly delirious and (according to MaryBeth) mumbling incoherently.  I recall getting to the hospital, getting sick in the waiting room, triage, and back in the exam room; I remember that the surgeon came in and told me she was going to operate the next day to remove my gall bladder; but the details of the day are pretty fuzzy (except that the contrast I had to drink for my CT scan was REALLY nasty).  After the gall bladder surgery, I remember that the surgeon called in another doc (my gastroenterologist, Dr. Kulkarni) who told me he was going to do another procedure the next day to open up my bile duct (which was causing my jaundice and the systemic itching I was experiencing.  And here is where my journey begins in earnest.

Apparently, while I was recovering from the 2nd procedure, Dr. Kulkarni had told MaryBeth that I might have primary sclerosing cholangitis – PSC – a degenerative disease that eventually would require a liver transplant.  MaryBeth and I had to deal with this sudden, very sobering thought.  Later on that week (I think), Dr. Kulkarni also said it might be cholangiocarcinoma (bile duct cancer).  Again, we had to adjust.  It was really hard, those first couple of weeks/months, coming to grips with the possibility that I may have these potentially fatal diseases.

As time wore on, however, Dr. Kulkarni ruled out PSC and I recall on several occasions that he would say that my body was not behaving like it had cancer.  As a result, by early 2008, we thought I had a benign bile duct stricture.  Beyond the multiple ERCP procedures, we were not really worried about my bile duct stricture. So we went from fearing the worst to thinking things were generally okay.  Sure, if I had a stricture (that was not responding to treatment), I might have to have a pretty serious surgery to redo my “plumbing” but I really only had to worry about the risks inherent in the surgery.  Things were generally okay.

Then I hit April 2008 and all of that changed.  It wasn’t a benign stricture, it was (in fact) cancer.  And not just any cancer, it was this really pernicious form of cancer that had a really sucky (medical term) prognosis.  Again, we had to adjust to the fact that I had this problem.  I mean, the diagnosis came completely out of the blue (because my body was not behaving like it had cancer)!!

I spent much of the spring and summer waiting for my surgery, as if the surgery would fix everything (and maybe it has), but right now, I’m stuck not knowing what the future holds.  Sure, everyone to an extent is at that place, but I am there with the knowledge that (a) my cancer had gotten into my lymph system and (b) the surgery left some of the tumor.  So, while I am currently “cancer-free” (my last CT scan did not show any signs of tumor growth), I sit here waiting wondering what tomorrow (figuratively speaking) will hold.

As I have said, I generally feel good.  Even when I am on chemo and feeling crappy I can rationalize that my feeling yucky (another medical term) is attributable to the medicine and not my cancer.  On my good days, I can handle the “let’s wait and see” reality of my life.  I can look toward the future and think to myself there might BE a future beyond some arbitrary limited length of time (be it 6-, 12-, or 18-months, etc.).  On my not so good days, it harder.  On those days, I find myself looking at my children and wonder how they will turn out and feel sorry that I will not be there to see them graduate from high school; college; see them get married and start their own families.

But good day or not, right now my cancer is so integrated into my life that I have become complacent.  Does my complacency mean that I am not fighting as fiercely as I should?  Is my complacency a sign of my “giving into” my disease?  Should I be doing more?  These are just some of the things I have been thinking about recently.

I apologize for my stream of consciousness writing tonight.  I’ll try to be more coherent tomorrow.

Merle

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It would seem that it takes a little longer than a week for the Gemzar to get out of my system, as today is the first day that I have not felt mildly nauseous.  Indeed, I began a blog yesterday that said something along the lines of, “It’s not fair that I feel sick when I haven’t had chemo this week!”  Luckily, those feelings have seemed to ebb and I have something of an appetite today.

Last night I took MaryBeth to a concert by her favorite artist, Steven Curtis Chapman.  I am not much for the Christian rock music genre, but MaryBeth really likes it and the concert gave us an excuse to get out alone together.  We hadn’t had a ‘date’ in a while.  It was nice to have some alone time with her.

Things should be generally calm this weekend. I hope you all have a good weekend.

Merle

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Today was generally a blah day.  I felt wiped out for much of the day and I found out why when I got to the hospital.  Once again, my cell counts were low — my white cell count was again so low that I was sent home without having a treatment.  My white blood cell count was down to 700 again, and my ANC was around 350. The plan at the moment is for me to take the next two weeks off from chemo to let my body repair itself.  It is possible, however, that I will switch from a “3 on, 1 off” schedule to a “2 on, 1 off” schedule.  In the end, all that really means is that it will take me longer to get through the full regimen.

This leads me to our new word of the day: neutropenia.  The doctors say that I am neutropenic, meaning that my body is unable to fight (bacterial) infection very well.  On top of that, my wife is at the end of an episode of having the flu; thus, despite my refusal, Dr. Kauh said I should probably wear a mask around the house or whenever I am in an enclosed space (e.g., the car) with my wife.

Finally, I would like to ask those of you who have not done so already, please go over to my personal PANCAN website to donate to my goal.  I’m really close to my $1000 goal and would like to meet and possibly exceed it.  Please consider donating.  Every little bit helps.

Merle

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My youngest son, I’m afraid, is going to have a rude awakening this evening (and tomorrow).  He thoroughly enjoyed the weekend…stayed up late; ate badly; rocked out to guitar hero (that game is more difficult than it looks).  Unfortunately for my son, though, he’s back home now and house rules are back in place.  I think he’ll sleep well tonight, though…he was a busy boy this weekend.

Today was fun.  We went apple picking in Indy (actually, I went apple eating; my son and sister-in-law did the picking).  If the old saying (an apple a day keeps the doctor away), I am good for the next week and a half.  He also picked out a pumpkin which he first carved and then smashed (I think he was taking the rock star thing too seriously — obscure reference to the group “Smashing Pumpkins”).

Health wise, I’m doing okay.  I am really tired, so I think I will be going to sleep pretty early myself.  I am not entirely sure why I am tired; I slept really well last night and even took a — <gasp> — nap this afternoon, yet I’m still tired.  Hmm, maybe it’s this whole cancer thing?!?!  While I was in the hospital on Saturday, my blood counts were lower than they were last Wednesday, but still okay.  We’ll see what they are like this week.  If I follow the pattern, I’ll be okay this week, but will not be for my treatment next weekend.  Ah the joys of illness.

Cheers,

Merle

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