PurpleStride DC

Just a quick update, folks.  Had a great time at the walk this morning.  There were over 2,000 walkers and over 50 survivors.  I wish I had thought to give my camera to someone while I was on stage…picture all these people wearing their purple shirts, and then, there I am in my “I’m Not Dead Yet!” shirt.  It was a good thing I had a hat that said ‘Pancreatic Cancer Survivor’ on it — I think I would have otherwise gotten the crap beaten out of me.  Most people liked the shirt, but I was definitely getting some nasty looks, too.

PanCan had a bunch of photographers there, so they are going to put a slideshow together of the pictures they took.  When they do, I’ll pull out the pictures of me, but in the meantime here are couple:

Me with Jai Pausch and her sons

Me with Jai and her sons.  When I met her at the walk this morning, she took one look at my shirt and said, “You must be Hamburger!”  (I get that a lot.)  There were lots of people there supporting Team Pausch, but Jai did take some time to chat with me a bit, in between keeping an eye on her sons.

Roger Magowitz and me

Roger and his wife (Jeanne) have been wonderfully supportive of me.  Roger has put a lot of effort into raising funds and awareness about Pancreatic Cancer.  I have mentioned them before: Roger is the man who puts together the celebrity golf tournament in Arizona to raise funds.

One last picture.  Here is the pack I wore during the walk (I figured people would recognize me from the front because of my shirt; I wanted to give them something to look at from behind (…and get your minds out of the gutter).

That’s the TempurPedic bear, the Team Pausch flag and a button that says “Stupid Cancer.”

Thanks for checking in.  I’ll have another update from Advocacy Days Monday and Tuesday.

Merle

It’s funny…

I have a confession to make, this blog has never been for the readers.  It’s always been a way for me to express in writing things I have felt or experienced during my fight against pancreatic cancer.  I wrote a lot early on, but as I adapted (and, to a large extent, got used) to having cancer, the need to write diminished.  I think that is one reason why my posts over the last year have similarly diminished.  Having said that, as I was thinking about what to write, I wondered to myself if anyone is even reading this blog anymore (granted, my updates have been more sporadic, so I understand why people stopped reading, but…).  Nevertheless, the blog must go on!  ;-)

Now, before I get into my rambling post for the day, I want to thank everyone who has donated to my fund raising efforts for PanCan.  I set a modest goal (compared to 2008) and I am well on my way to eclipsing it in, essentially, under a week.  Thank you, SO MUCH!  I’m pleased to report that, with your help, I have been able to significantly contribute to helping Team Pausch reach its fundraising goals, which means a lot to me.  Again, thank you! 

If you haven’t already (and you are able), please consider making a donation.  Every little bit helps!

As I mentioned earlier this week, MaryBeth and I went out to celebrate our 20th wedding anniversary last night (our actual anniversary is today)!  I really wanted to do something special, but it turns out, nothing really happens on Wednesday nights in Atlanta.  I looked for shows at the Fox Theater, at the Gwinnett Performing Arts Center (and arena); I looked for comedy shows at the Punchline and the Funny Farm; I even thought we’d go crazy and go see a <gasp> first run movie (but it turns out all the movies that we’re both interested in, like The Sorcerer’s Apprentice and The (new) Karate Kid, are coming out later in the summer).  So instead, we went to the dollar movie theater and watched Percy Jackson and the Olympians: The Lightning Thief.  It was entertaining, but as my older son reported, the movie felt as if it was rushing and left a lot out, so MaryBeth and I will be reading the book(s) next.

After the movie, we went to dinner at Pappadeux’s, which is a lovely New Orleans themed restaurant with very yummy food (we’re actually planning on getting some of the food for TumorPalooza 2 from there).  Now, my point for recounting our evening last night was to say that during dinner I was struck by the fact that I am still alive; that despite all the odds, I’m still here.  When people bring that fact up, I usually tend to brush it off, but last night, it seemed more profound.  I usually focus on what will happen in the future; last night I was able to marvel at what I have accomplished, thus far. Pretty cool.

Again, thank you (those of you still around) for your continued support.

Merle

ps You know, I have been concerned that my weight has slowly been increasing over the last couple of years (not dramatically, but more than I would like).  I am happy to report, however, that I am not the biggest Hamburger out there.  :-)

Exciting news

As long time readers of this blog can attest, I have something of “man-crush” on Randy Pausch.  I do not know if I have ever told this story (can I blame my lack of memory on cancer-related dementia?  I didn’t think so!), but early in my battle with pancreatic cancer, my sister (Marjorie) and I were talking. 

Marjorie told me about this inspirational internet video she had seen of this college professor, who had been battling pancreatic cancer.  So I searched the Internet and found, watched, and was amazed by the Last Lecture Randy Pausch delivered in September, 2007.  After that, I found and read through his blog.  I felt a kinship with Randy, as we were both much younger than average when we were diagnosed, we were both scientists, we both had a wife with a relatively young family.  I remember writing an Email to him several times to let him know how much he had inspired me to get on with my life and try to do something to help support the fight against (and raise awareness of) pancreatic cancer. 

As I have mentioned previously, a reader of the blog (Jeanne) contacted me about a foundation her husband started to raise money for pancreatic cancer research in honor of his mother (The Seena Magowitz Foundation).  Through a series of steps, Jeanne mentioned me and my blog to Jai Pausch, Randy’s wife.  Jai and I have corresponded somewhat over the last couple of months and I have to admit that every time we do correspond, I get this feeling of, “How cool is it that I am talking with Randy’s wife?”  (If you’ve seen Julie and Julia, I sort of have that same sense of amazement that Julie Powell, the blogger in the movie, felt when she heard that Julia Childs had read her blog.)

So all of that is backstory for my news.  Next month, I will be traveling to Washington DC for the Pancreatic Cancer Action Network’s Advocacy Days.  In association with Advocacy Days, PanCan will be holding a Purple Stride Walk to raise funds to support pancreatic cancer research.  I had mentioned in an Email to Jai that I was planning to attend the Advocacy Days event and she invited me to join her on Team Pausch at the Purple Stride event.   As silly as it sounds, I feel honored to join the team and I will be looking to my family and friends to help me raise money this year.  I have a website dedicated for donations; please consider giving.   The Last Purple Stride event I participated in, I was able to raise $3,500.  I hope to raise as much, if not more.

Cheers,

Merle

Last Lecture

I believe that I have mentioned here previously that my 14-year old son has Asperger’s Syndrome (high functioning autism).  His developmental delays are manifested as social and emotional delays; he is very bright, but his social skills are closer to those of an 8-year old.  His emotional delays are both a blessing and a curse.  It is a blessing in that he is often unaware of how other people are responding to him.  Sure he notices the blatant teasing, but the more subtle stuff, I think, just goes right past him.  It is a curse, though, in that I do not have a really strong emotional bond with my older son; not for lack of trying, but because it’s hard for him to connect with folks emotionally.

This fact was hit home last week.  One night, I happened to glance at a paper he was writing for homework.  It started out something along the lines of, “I think the Last Leture was a good book…”  Apparently, they had been reading the Last Lecture by Randy Pausch in his class over the past couple of weeks. 

Now intellectually, my son knows that I have pancreatic cancer and he also knows that Randy Pausch died from PC.  I do not know if he has made the connection between those two realities.  Moreover, I offered to give him my insight, if for no other reason, to discuss how Randy Pausch had inspired me to write this blog and work to help raise awareness about pancreatic cancer.  He just was not interested.  I’m a little sad that he would not want to take advantage of this opportunity for us to bond.

However, I am able to take a step back and recognize that he is behaving completely consistently with who he is.   It’s all about adjusting expectations.  Perhaps he will be interested in talking about this at a later date.  Until then, we’ll just keep on keeping on!

Merle

..and the answer is…

Today I met with my oncologist to get the results of my CT scans (from Monday).  I was scheduled to meet with the physician’s assistant and, as MaryBeth and I sat in the examining room, we agreed that if Dr. Kauh came in (instead of Edie, his assistant) it was a sign of bad news.  I had noticed that we were ushered back into the examination room quicker than usual today (not that I’m one to read into such situations) and then when Dr. Kauh walked in; well, MB and I simultaneously sort of groaned and I said that it couldn’t be good news.

Dr. Kauh assured us it WAS good news.  My bloodwork was generally good, though, certain aspects of my bloodwork were either higher or lower than the normal ranges, but nothing that caused Dr. Kauh concern.  The results of both my chest and abdomen CT indicated that there were no detectable changes from my April scans, indicating that there was currently no evidence of metastatic cancer. 

Quoting from Randy Pausch’s day to day blog: “Meaning that – for now – there’s no detectable sign of cancer in my body. I am still a looooong way from winning the battle, but every day I don’t lose is a day closer to achieving long-term victory.”  (I don’t know why people say that I tend to display evidence of “hero worship” regarding Dr. Pausch…I mean, it’s not like I quote him all the time, right?)

This is good news.  I now am free from hospitals again until the middle of August.

In other Hamburger news, though, as I write this, I am in Sarasota, FL with my father and step-mother.  It turns out that his doctors now believe that his difficulty walking (and possibly his difficulty breathing) might be attributable to normal pressure hydrocephalus.  Tomorrow, my Dad will be having a lumbar puncture to drain some cerebrospinal fluid to see if that relieves the pressure in his brain.  It is our hope that by doing so, he will have less difficulty with mobility and that his breathing will improve.  If the procedure is successful, the doctors will assess my Dad for having a neural shunt put in place which, while it won’t CURE the NPH (the shunt does not address the underlying causes for the NPH), will help with the symptoms.

As I have said in the past, please keep my Dad in your thoughts!  

Merle

Hey J.J. — I’m available!

First, let me wish all the mothers out there a very Happy Mothers Day. This morning, my younger son and I got up and made breakfast (eggs, bacon, and bagels) in celebration of all the hard work that MaryBeth does every day. The day, in general, has been relaxed, with all of us doing what we can to make sure that MaryBeth did not have to do anything she didn’t want to do today.

To further celebrate Mother’s Day, though, MaryBeth and I went out last night….alone….without kids. We had a very nice dinner and then she wanted to go see the new Star Trek movie. I was doubly interested in seeing the movie, as Dr. Randy Pausch had a walk-on role (with a line) in the movie. For those of you who are new to the blog, Randy Pausch died from pancreatic cancer last July and is the author of The Last Lecture. During the initial stages of MY fight with pancreatic cancer, I took a great deal of solace in reading his blog about his journey.

Apparently, a couple of years ago, Dr. Pausch got an Email from J.J. Abrams inviting him (Dr. Pausch) to be a part of the cast for the new Star Trek movie.  Unfortunately for me, though, I did not realize that his scene was right in the beginning of the movie, so MaryBeth and I missed it.  I guess that means I will have to go and watch it again (which is okay, because the movie was great)!

So part of this blog is to say, “Hey J.J.; I’m a fan of Star Trek, too….and I have pancreatic cancer, too…and well, if you make a sequel, I’m available for a similar role as Randy.”  Unfortunately, I think I need to be a little more outspoken about my love of Star Trek and…well…probably be a little more high profile than I currently am.  Ah well, I can always wish, right?

I was just reading some posts on the Johns Hopkins Pancreatic Cancer discussion board and someone had posted a question about where all the “old timers” from the board had been.  Someone reminded folks that most people do not live past a year from diagnosis.  At least I made it past THAT limit.  People continue to comment that I look good (and that my hair is growing back…indeed, several have pointed out that perhaps it’s time for me to get a haircut).  I feel fine (as long as I take my pancreatic enzymes).

I must say that I am enjoying my time free of the hospital.  I don’t go back until June 15 (my next CT scan).  <sigh>

Until next time,

Merle

Slowly Recovering

As those of you who are long term readers of my blog know, I hold Dr. Randy Pausch in some pretty high regard.  I hope that I have been able to live my life with cancer as eloquently as he did his life.  I remember reading in his “blog” that when he finished his chemotherapy, he posted the following picture:

I have to say, I felt much the same reaction on March 18th as I left the hospital for my last treatment (okay, perhaps not on the 18th, as I recall I felt pretty yucky that day, but the feeling was the same).  The reality, though, is that MY mission is just starting.  I might not be able to do anything more (at the moment), but we (my doctors and I) will remain vigilant for the next…oh…4 years!  :-)

I find that as time moves along, that I am feeling more and more like myself.  Things that I have noticed: I have (a little) more stamina in the gym — I’m able to run for about 15 minutes (broken up into sections at the moment) — and my hair is growing faster.  For the latter, I had stopped shaving my head before Christmas, but my hair just didn’t really grow that much.  Now that I’m done with chemo, I have actually begun needing to use a brush / comb on my hair.  Woo Hoo!  Other big news is that I was able to delete the recurring appointment to get my chemo from my Outlook calendar (it’s not a big thing, but it was certainly meaningful to me).

What’s on the horizon.  The biggie is that I have my post-treatment, restaging CT scan (and bloodwork) tomorrow, with a follow-up appointment with my oncologist next Wednesday.  As with my scan in February, I do not expect that anything will be there, but knowing me as I do, I am sure there will be some anxiety tomorrow.

I still want to have a party to celebrate my finishing up with chemo, but my weekends are pretty busy (with scouts and family stuff) for the next couple of months.  We’ll see.  On the other hand, one could argue that we celebrated my being done with chemo by going to Disney World, which was very cool.

Thanks for checking in.

Merle

Stepping up

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

Thanks to Randy…

So, I have a confession to make: I’m a liar.  In my last blog post, I said I would not watch the Barbara Walters interview of Patrick Swayze and, well, I did.  Initial impressions:

  • Patrick looks pretty bad; more gaunt than I remember him.
  • Barbara Walters asked some pretty stupid questions (e.g., “Do you think your smoking caused your cancer?”; “Do you have any idea how long you have to live, Patrick?”; to his wife, “Have you considered what life will be like without Patrick?”).  Despite being a contributing risk factor, there’s no way to tell what caused his pancreas cancer.  As he said, his smoking probably played a part, but that’s just an inane question; however, it was not nearly as bad as asking Patrick how long he has to live or whether his wife has thought about life without him.  Oy!
  • Barbara’s questions were trite and basic.  This was the first Barbara Walters interview I went out of my way to watch.  Her reputation (I thought) is that of someone who is a good interviewer.  I thought her interview of Swayze was lazy and superficial.
  • It *IS* impressive that he was able to work 12 hour days shooting his new series.  I know that when I was having my 5FU chemo (and even now with the GemZar), the medicine really knocks me out.  I sometimes have trouble making it through an 8 hour day in front of the computer, so it’s pretty impressive what Patrick was able to accomplish.
  • Patrick must read my blog, because many of the things he said are things that I have written here (e.g., “Either get started living or get started dying”; you need to take it one day at a time and do your best to live life to the fullist).  In short, Patrick really didn’t say anything I haven’t either said or written in this blog (well, that’s not entirely true — I do NOT talk to ghosts or angels).
  • Patrick Swayze is no Randy Pausch (more on this in a minute).
  • I remain convinced (and saddened) that Patrick is allowing himself to be exploited as a means to increase viewership of his new series.  Yes the interview superficially covered topics other than his series, but a large portion was spent talking about his work on the series.  Now, I don’t begrudge him for doing so (the more people who watch his show, the more likely there will be a 2nd season — with or without Patrick), but it’s hard to take him too terribly seriously about his desire to raise awareness about pancreas cancer when he allows himself to be so exploited.  By the way, further evidence of his willingness to exploit his cancer: I heard a commercial indicating that Patrick was going to be on Larry King Live “Next Tuesday: Larry King talks to Patrick Swayze about his cancer”

Someone asked me, in response to my blogged intention of not watching the interview, what the difference was between watching Patrick’s interview and watching the Randy Pausch’s “Last Lecture.”  As I had expected, the interview was all about Patrick and his situation; what he is doing to live his life.  The Last Lecture was about doing what you can to inspire people through your actions.  In fact, if it weren’t for the powerful messages that Randy espoused, I think we would not even know that Patrick had pancreas cancer; perhaps we would know he had cancer, but we wouldn’t be terribly interested in the type.

How many people actually knew that Luciano Pavorotti died of pancreas cancer in 2007 (doesn’t count if you read in my blog)?  Did the mainstream media give much play to Steve Jobs being diagnosed with pancreas cancer in 2004?  The answer to both, I think, is ‘No.’  Randy’s lecture, however, was so powerful that it not only inspired people to try and help others, but it moved them to share the story with others; eventually, the video of the lecture went “viral” on the internet and Randy Pausch became a household name and people became aware of how deadly pancreas cancer is.  It was only then that the society as a whole began to hear about this person and that person being diagnosed with pancreas cancer.

I admire Randy Pausch because of his desire to impart his knowledge / passion to his students and colleagues.  When he was diagnosed with pancreas cancer, Randy went out of his way to see what he could do to make a difference; he became an advocate.  In his blog, Randy said:

Jai & I have been trying to see how we can use my D-list celebrity … for good. I’m working with both the Pancreatic Cancer Action Network (PanCAN) and the Lustgarten Foundation, doing things like videotaping public service announcements and meeting with lawmakers up in Washington, DC. One reason pancreatic cancer is such an “orphan” disease is that we don’t have many long-term survivors to lead marches on Washington. So I’m trying to sort of become the “Michael J. Fox of pancreatic cancer.”

While I would, for very selfish reasons, prefer that Patrick and Steve Jobs did more to be advocates for pancreas cancer — to raise awareness so that more funding would be funneled to pancreas cancer research.  I certainly wish I had the ability to take up Randy’s fallen mantle.  Having said that, I do not think badly of Patrick and Steve for NOT being advocates.  That is their choice and I respect it.

I should say that, in writing this, I just read on a couple of sources, that Patrick has been hospitalized with pneumonia — not uncommon when chemotherapy compromises one’s immune system.  Whether I agree or disagree with how he uses his celebrity, I hope that he is able to recover from the pneumonia — I wish for him to have as much time with his wife and friends as possible.

I remain grateful that, in response to people asking me how I’m doing (today), I can honestly say that I am doing well.  Every two weeks I have chemo and feel crappy for a couple of days, and I’m still fighting the vestiges of a cold, but otherwise, I remain seemingly as healthy as I was before being diagnosed (okay, not entirely — I still have to take my pancreatic enzymes to help digest my food).  I am back to a generally normal (busy) schedule: tonight (Friday), I was at the karate school, helping to teach.  Tomorrow I am driving to TN to go caving with a group of boy scouts.  Sunday, after getting back home, I have a cub scout leader meeting and then teach OWL at church.  Other than that, I have plenty of free time.

So for the time being, don’t worry about me.  I’m doing well, but I continue to appreciate everyone’s support, love, and friendship.

Merle

Clarity

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