I’m Not Dead Yet (I.N.D.Y.)

Several people have, if not so much complained, expressed to me their dissatisfaction with the frequency with which I have been updating this blog.  Indeed, one friend asked if I was feeling too sick to write.  On the contrary, my dear friends, I have been feeling quite well, for the most part (‘cept when I exercise a couple of days after chemo; apparently, that’s the not the smartest decision I have ever made, prompting a good friend to refer to me affectionately as a dumbass).

In short, I haven’t blogged that much because I have not had much to say (which I am sure surprises many of you).  In the beginning, this blog served as a way for me to continue to update you, my loyal readers, regarding my mental and physical well-being.  More recently, though, things have been generally good.  Chemo weeks suck; non-chemo weeks don’t suck.  Beyond that distinction, I have not had much “cancer-related” news to report, and that (more than anything) has kept me from posting, as I have always viewed this blog as “Merle’s Cancer Blog.”  Perhaps, I need to give myself permission to write about stuff other than cancer (as we all know these treatments I’ve been going through have worked and I am cancer free — fingers, toes, and eyes crossed)!

The above paragraph notwithstanding, though, I actually have some cancer-related news.  As many of you know, the Pancreatic Cancer Network (PANCAN) is a large advocacy group for issues related to pancreatic cancer.  I received an email from PANCAN today heralding the publication of a letter to congress by pancreatic cancer survivor, Patrick Swayze.  In a previous post on this blog, I was somewhat critical of Swayze not using his celebrity in advocacy.  So this letter is certainly a really good step (anyone expecting a big BUT right about now??)

This is a good step, but, when reading the letter, I got the sense that it was written by some ghost writer rather than Swayze himself.  Some of you may be saying, “Well DUH.”  Perhaps this feeling lies in my sense that the letter is so well researched and my sense that Patrick would not do that kind of in depth research.  Perhaps that is just my “ivory tower” snobbery, but I would have no problem accepting this letter if it had come from someone like Randy Pausch, but it just doesn’t seem like Swayze.

The other but with regards to the letter lies in it’s message.  Swayze correctly identifies pancreatic cancer as the 4th leading cause of cancer-related death in the US, but fails to mention that it is the most underfunded form of cancer of the leading forms of cancer-related deaths.  I would have liked to have seen Swayze call for more funding for pancreatic cancer research, in particular, rather than a call to fund NIH (in support of cancer research, in general).  So, as I said, this is a good step.  I am very happy that Patrick is stepping up and using his celebrity, but being the greedy S.O.B. that I am, I would love him to do more.

One last thing: while out and about today, I drove by a church with a message on the outside sign that made me laugh out loud.  I was so tickled I just had to stop and take a picture (click on the picture for an enlarged view of the sign).  Enjoy…

Merle

Tags: Idolatry, Main, PanCan by Merle
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Well, it would seem that I have learned an important lesson this week: despite how one is feeling, it is not in one’s best interest to exercise on the treadmill a couple of days after chemo.  I had to go into the office this morning to do some paperwork and I thought, “Since I’m heading in, why don’t I try and exercise?”  Seems a reasonable enough question.  Besides, except for a little nausea, I was feeling okay.  In fact, afterward, I felt generally okay, too, but by mid-day, I was feeling pretty yucky.

I’m feeling better now, but then again, I have not really eaten anything since lunchtime.  I guess, in all this, the good news is that I have 3 more regularly scheduled chemo treatments left.  I say regularly scheduled only because if we find evidence that the cancer has returned, Dr. Kauh will likely prescribe additional chemo.  (We’re planning on that NOT happening, okay?) Ironically, my last treatment will be on April 1st; somehow that seems appropriate.  We’ll have to have Tumorpalooza II to celebrate THIS milestone, eh?

MaryBeth and I have planned a pretty cool family vacation for March, though the kids do not know about it yet.  My birthday is March 1, so I figured I would give THEM a gift and tell them about it (more likely, I’ll give them cards with the attraction tickets in them).  If it seems like I’m being vague, well, I am.  Not that I don’t implicitly trust all of you, but I want this to be a surprise, and I don’t want any of you all accidentally spilling the beans.

For those of you who have been following this blog for a while, you’ll remember that we had some challenges traveling to Cincinnati for Christmas.  Well, several years before (2005), we had similar troubles traveling to Indianapolois.  The plan was to drive to Nashville (about a 4 hour drive) on Friday evening and then complete the remaining 4 hours on Saturday (Christmas Eve).  Well, a HUGE winter storm came through the Nashville area Friday evening that caused MILES and MILES of backup on the interstate (it took us 9 hours to go 100 miles).  We found a hotel room Saturday night (and a restaurant that served adult beverages) and spent another 8 hours driving the remaining 150 miles on Christmas Day.

During one of our stops during that 17 hour ordeal, we found a field that was covered with ice and in the field was a crab apple tree (click on the image to see a larger picture).  Even during this very (VERY) trying time, I looked closely and found something interesting to photograph.

Cheers,

Merle

Tags: Main by Merle
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Hello all.  I had my doctor’s appointment with Dr. Kauh and I found out that my CT scan was clear — unchanged from the last CT scan I had.  This is good news and something of a relief, though, I was fairly certain that things would be okay.  I did have chemo today and am feeling a little yucky, but that will pass.  Again on the good side, I now only have 3 more treatments.  My last treatment will be pushed back a week because of a family vacation; so my last treatment.  It’s kind of ironic that my last chemo treatment will be on April Fool’s Day!

On the down side, I met with my radiologist yesterday for a check up.  As I have indicated here, I have been having some difficulty with my insurance company agreeing that my radiation treatment is NOT experimental.  It has gone so far that I have retained legal counsel to argue my case for me with the necessary organizations (in this case, the Office of Personnel Management, the entity responsible for overseeing the insurance programs for federal employees).  What’s sad is that Dr. Landry (my radiologist) said that he is NOT treating as many patients with IMRT (intensity modulated radiation therapy) as he was because of MY case (he doesn’t want other patients to have to go through what I am).  For those of you who don’t recall, IMRT focuses the beam on the tumor and minimizes the exposure to non-cancerous tissue around the tumor.   We’ll see where this goes, but it’s a shame that Dr. Landry is refraining from using what he considers to be the best treatment modality because of the trouble my insurance company is giving us.

Just a quick update today.  I’ll be back with more later.  Right now, I’m tired and gonna head up to bed.

Merle

Tags: Main by Merle
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I am sure some will cry foul, but I have to admit that it was my sister-in-law that correctly guessed what was pictured in the post I made last.  While sitting in a bar on the Vegas strip, I looked up at the outdoor heater and saw the pink neon reflected on the underside of the hood.  It made a really neat picture against the fading blue sky.  So congrats to Catherine (I don’t think I told her what it was…).

In other news, I’m doing okay.  I have not received any news about my CT scan from last week.  I could have called my oncologist, but as I have an appointment to meet with him on Wednesday, I figured I’d just wait.  (Besides, this way, I will be able to get a copy of the report.)

I want to thank everyone who continues to read my blog.  It was particularly heart warming as so many of you came up to me to offer support and to inquire about my CT test results.  I am pleased to have you all with me on this journey.

Four more to go…

Merle

Tags: Main by Merle
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The last couple of days I have been experiencing a growing sense of dread and anxiety.  I had a “re-staging” CT today and I was amazed at how stressed it made me.  I was next to useless during this morning at work, as I could not focus my attention on anything but the CT.

The reason for this scan begins last October when I visited with the in-laws in Cincinnati.  While I was in Cincy, I had an attack of diverticulitis and I ended up in the emergency room of Jewish Hospital.  The doctors there ran a CT test to examine my abdomen and, apparently, upon review, the doctors there noticed something questionable on my liver.  I showed Dr. Kauh the images and he called the “thing” a “vascular blush” — suggesting that it was possible that the scan was taken just as the dye was moving through the liver blood vessels.  To be sure, though, Dr. Kauh put in an order for a follow-up CT.

As the days passed and today drew closer, I began to become more stressed about what the CT may or may not show.  In fact, I realized today that I was experiencing levels of stress that were similar to when I first was diagnosed.  A fact further enhanced when I met up with Cindy and her husband in the Radiology department at Emory.

Cindy was diagnosed with pancreas cancer a month before me (in March of last year) and had her Whipple in April, 2008.  Her Whipple was successful, in as much as there were negative margins around the tumor.  When the surgeon removed her tumor, he also removed some tissue around the tumor.  Getting a negative margin means that there was no cancer cells in the removed tissue around the tumor.  This is a good thing.  Unfortunately, Cindy also had evidence of the cancer in two lymph nodes.  Cindy underwent Gemzar follow-up chemotherapy (needing to take it every other week, like me, because she could not tolerate the more frequent dosing).  She had a follow-up CT scan recently and, regrettably, she found out last month that her cancer had metastasized to her liver.

In addition to just the saddness I feel for Cindy and her husband (I believe they do not have kids), her experience leads me to wonder whether I am fated to have the same experience.  Now, as with my Dad, I realize that we are separate individuals and there is no reason to think that Cindy’s experience has ANYTHING to do with Merle’s experience; having said that, though, there’s a part of me that worries.  I’m sure I will be better tomorrow (though, I won’t get the results of my CT scan until later this week or next week), but today I’ve just been out of sorts.

As I have tried to do previously, I will leave you with an image.  As I have said, I try to look for different perspectives when I take my pictures.  I want to try something new, though.  I want to post the image and see if you all can guess what it is (and no fair participating if I’ve already told you what it is).  So take a look and leave a comment with your guesses.  I’ll post the answer in a couple of days.  Enjoy!

Merle

Tags: church, Main by Merle
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