I’m Not Dead Yet (I.N.D.Y.)

The latter part of this week has been…enlightening.  Many folks have told me that I am a “miracle man;” that I’ve “beaten the odds;” that I’m “special.”  When this happens, 9 times out of ten I will discount the statement, either out of my tendency to self-deprecate or my insistence that my reaction to my diagnosis is how I think most (if not all) people would react in my circumstance.  As I have documented here, I have had my fair share of low days, but for the most part, since my surgery (at least), I have been able to enjoy my life and feel generally healthy.  I’ve been able to go on trips with my family, get back involved with scouts and karate, and have (hopefully) been somewhat productive at work.  Things for me are GOOD!

This past Thursday, MaryBeth and I attended a pancreatic cancer support group and along with the regulars who have been coming as long as I have (the other Merle and Mike), there were some new faces as well.  One of the new people was a woman who had a successful surgery in February and was fighting her way through post-surgical chemo (and not liking it very much).  The other two, Linda and Tommy, were both diagnosed with Stage 4 pancreatic cancer.  Linda has a mass on her pancreas that is inoperable, and also has a mass on her liver (which, luckily, IS responding to treatment and is shrinking).  We talked a lot about the hope that perhaps not only will the mass on her liver go away with chemo, but perhaps the tumor on the pancreas will shrink so that she may be eligible for surgery.  She is an older woman with a grown child and she is largely going through this process alone.  I think all of us from the support group felt really good that we could provide her support in validating what she was feeling (that many of us have gone through the same emotional roller coaster she is going through) and to suggest resources for her to check (to get a 2nd opinion, to get help with discomfort, etc.).

The other person was a young many named Tommy.  I think Tommy is younger than I am, he is married, and he has tumors on not only his pancreas, but his back, and in his leg.  Tommy essentially had to self-diagnose the mass on his leg, since his old (he has since switched) oncologist discounted his leg pain.  His doctors now are doing intensive radiation treatment to reduce the leg mass.  The tumors in his back are impinging against some nerves, so he has shooting pain if he gets his back into a particular position (for example, lying on the hard radiation table).  Tommy has been to MD Anderson and has an oncologist out there monitoring his treatment now.

In the end, however, both Linda and Tommy recognize that, unless things change, they are both fighting to improve and/or keep their quality of life.  No one knows when they will die.  Linda was told when she was examined to go home and get her affairs in order.  Back in October, her doctors told Linda that she had 3-6 months to live. Hearing Linda and Tommy’s stories gave me a new perspective on my own situation.  When I start to feel sorry for myself or bleak about my situation, I need to remember that I am doing stupendously well!  I *AM* not dead yet; I’m not DONE yet.

Regarding my humility.  As most of you know, I am trying to raise as much money as possible to support work being done to treat/cure pancreatic cancer and provide support to those who are affected by the disease.  I have my own personal website set up so that my friends and supporters can help contribute in support of me or some other loved one that has been affected by this disease.  I had set a goal to raise at least $2000.00 with my efforts.  Well, the other day I received a text message from a friend indicating that he had just helped me reach my goal.  Perhaps it was because I was slow and perhaps it’s because it was Friday, but I took his text to mean that he had just donated some amount of money to my efforts.  Instead, he donated the balance of the funds left to get me to my goal.

His generosity simply highlights how humble I am to have such good friends who are willing to support me in my efforts.  Have you ever seen Mr. Holland’s Opus?  If not, you should.  At the end of the movie, Mr. Holland is getting ready to leave his school for the last time (having “retired” and thinking he had not done anything useful with his life).  He was ushered to the school auditorium and it was packed with a mass of people, there to celebrate him and his impact on their lives.  He didn’t recognize until then, that he DID have an impact on a number of different people and that he mattered.  I often wonder what my legacy will be whenever it is I pass (MaryBeth has made me promise that I cannot die until I’m 104).  When I see the way people have supported me through the ups and downs of my battle; when I see how many people still are wearing their Hamburger Helpers bracelet; when I see that a relatively small number of people felt so moved to donate enough money to get me to my $2000 goal with 2 weeks left until the walk…I can honestly say that I feel loved, and cared for, and that, perhaps, I have done some good while I have been here.

I am humbled by your love and support and I am glad that I can call each of you my friend.

Regards,

Merle

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I am beginning to really get excited about going to Washington DC to be a part of Advocacy Days.  Yes participating in the Purple Stride event, and meeting Jai,  is going to be really cool, but long time readers of this blog know that I have been jonesing to do “more.” 

People have told me that my story has inspired them with challenges in their own lives and that has been incredibly humbling.  But when I go to Washington, I am going to be meeting with Georgia legislators as a patient survivor, in the hopes of getting their support for Senate Bill 3320, the Pancreatic Cancer Research and Education Act.  The Advocacy coordinator for Georgia has contacted me to say that she wants me there to speak with my senator, Saxby Chambliss, my representative, John Linder, as well as several other Georgia legislators to gain their support for pancreatic cancer research.  (I did mention to her that to say that Chambliss and Linder were “my” political representatives is something of a stretch, since (a) we do not belong to the same political party, and (b) neither has expressed an interest in supporting pancreatic cancer research when I have contacted them in the past.  Perhaps, as Alicia (the advocacy coordinator) told me, being there in person might make a difference.

I will be sure to take pictures of the whole weekend’s events and to post about my experiences.  In the meantime, if you haven’t already, please consider donating to my efforts to raise money for the Pancreatic Cancer Action Network.

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This weekend is likely to be quite difficult.  The family and I are in Sarasota to participate in a ceremony to “unveil” the headstone (or matzevah, which means ‘monument’) on my father’s grave.  Given my father’s service in the Korean War, it seems particularly poignant to have the ceremony this weekend. 

As I mentioned, today is my younger son’s birthday.  Although I said earlier that it is good that we will be able to celebrate this happy occassion as a counter to the challenges of acknowledging my father’s passing, I am feeling somewhat ambivalent about the celebration today.  I just hope my son does not feel as if his birthday is a side note to events of this weekend; it is not.  We have taken steps to make sure we do fun things today so that he can feel celebrated.  Of course, we’ll still have a party in a couple of weeks, when we’re back home, so he can celebrate with his friends, but there is something special to celebrating one’s birthday on the actual day!

If you the time and energy, please feel free to send positive energy, prayers, thoughts, song, etc. to my step-mother, Arlene; to my siblings, Marjorie, Chip, Diney, and me; and to the rest of the family and friends, both here and not, who are remembering my father, Ed Hamburger.  Please send happy, celebratory thoughts to my youngest son, that he may enjoy his birthday and feel loved and so he will continue to grow into the exceptional young man he has become. 

Finally, please take time to remember and honor the men and women, from your own family and others, that have made the ultimate sacrifice in the service of the United States.

Thank you!

Merle

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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. 

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Okay, I admit it; I’m a slacker!  It’s been (ack) 20 days since I posted anything and I’m sure that has ruined the days of my 10s and 10s of fans! 

Rest assured that things have been busy over the last couple of weeks.  For Mother’s Day, we took the family back to the Renaissance Festival for the kids to enjoy (well, my daughter and younger son enjoyed it — got dressed up even;  my older son didn’t get dressed up, but did enjoy many of the shows we watched).  I’ll post some pictures shortly.

The following weekend, I was up at Camp Rainey Mountain for the 2nd week of Wood Badge.  The mountain lived up to its name, as we got 4-ish inches of rain in a couple of hours on Saturday.  I spent a lot of that time taking and sorting through pictures, as one of my jobs was to create an end of the course slideshow. There was stress involved, but the participants (and staff) appreciated my efforts.

Last weekend, was (gasp) largely unremarkable.  We took the kids to see Shrek Forever After on Saturday Morning.  You see, the Autism Society of America worked out an agreement with AMC movie theaters to provide a monthly “sensory friendly” movie.  Sensory friendly means that the movie volume is turned down; the lights are kept up; and, most importantly, there is not the need to worry if your child acts out during the movie (everyone there understands the situation).  For what it’s worth, the kids loved the movie and both MaryBeth and I thought it was good (worth getting when it comes out on DVD, even).

Things are going well with the Hamburgers.  I am pleased to say that MaryBeth and I will be celebrating our 20th wedding anniversary on Thursday (well, we’ll be celebrating on Wednesday, because that’s when we have the babysitter).  MaryBeth and I have had our ups and downs, but I think are relationship is stronger today than it has been in many years and I am looking forward to the next 20…40…whatever years with her in the future.

More soon.

Merle

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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

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Hello all, in “Merle-land.”   For several years, MB and I had a tradition of having someone watch the kids for an evening while we had dinner, had a couples massage at Spa Sydell, and then stayed at some hotel for the evening.  We typically did this around Valentine’s Day.  Well 2009 was a bit hectic, so we didn’t do it last year and we promised each other we’d get back to the tradition in 2010.  Unfortunately, scheduling didn’t work out in February, so we couldn’t do it for Valentine’s Day.  We re-scheduled with each other to do it for my birthday in March, but again something came up.  Well, this past weekend, in celebration of MaryBeth’s 14th anniversary of her 29th birthday, we resurrected the tradition (accidentally).

The plan was to have dinner and sleep in a hotel while our babysitter (a 20-something college student who has watched the kids for the past umpteen years) stayed with the kids.  MB then suggested that we spend the day Saturday at the Renassaince Festival (yes, we do get dressed up — as if you had any question!).  Okay, so the plan was dinner (R. Thomas Deluxe Grill, a really nice, down-to-earth place that provides meal options for both vegetarians and carnivores, alike), hotel, Ren Fest.  On the drive to the hotel from the restaurant , we noticed a Spa Sydell and, at the last second, we decided to see if they had an opening.  As fate would have it, they did; so MB and I had a couples massage (as a bonus).   We then spent the night in a nice hotel and had a great time at the Ren Fest.

What MB didn’t know, though, was that I had conspired with the kids and the sitter to get the house picked up and decorated so we could have a party when we got home.  My younger son made her cake (with fondant, but no pastiage this time).  One of her presents was a DVD of Avatar (which she had been asking me to get (“for my birthday”) all day.  After my daughter was in bed, we hooked the laptop up to the projector and to an external speaker and watched the movie as it was projected on our living room wall.  All in all, I think MB felt loved and celebrated. 

It was a good weekend. MB and I had some alone time.  We did stuff as a family.  And the level of stress (attributable mostly to the papers that MB and my younger son had to complete for this week) in the house was reduced.  It was a good weekend.

Merle

(look at that!  A whole post without mentioning my cancer!  DOH!  I just did…Damn!)

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This past Friday was the 2 year anniversary of my diagnosis with Pancreatic Cancer. As I wrote shortly afterward, I found out the weekend before I was supposed to go to a 6-day (2 weekend) scout training for leaders. I remember not getting as much out of it as other scouters there, but I’m sure that was largely due to my circumstances (I recall one of the activities we did was “What are you afraid of.” You guessed it, my number one choice was death — can you guess what the #1 fear was? Leave a comment with your guess! And no fair playing if you’ve been through the Wood Badge course!!!)

For the second year in a row, I have served on the Wood Badge staff and this year it was sobering and yet exciting that I could say that it was 2 years since my diagnosis. When I was first diagnosed (and wondering if I would make it a month or two), my very good friend, Luis, told me confidently that I would make it for years and years. Of course, I didn’t believe him, but loved him for his support, prayers, and friendship. Luis and I served on staff during Wood Badge this year and, when I mentioned that it had been 2 years since my diagnosis, he reminded me that HE said I’d be around, but did I believe him? NOOOOOO!!

I’m alive and kicking, having recovered completely from a weekend of staffing Wood Badge. May will be largely a happy month, though, my father’s birthday is May 13, which will be hard.

Thank you all for continuing to read and be supportive. Don’t forget about Tumorpalooza 2 — only 4 months away!

Cheers,

Merle

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MaryBeth and I were sitting in the exam room when the doctor walked in and asked how I was doing. I paused in my response (as I typically do when someone asks) and she jumped in with, “Your scans are fine!” In fact, according to the written report, various internal organs (pancreas, lungs, spleen, liver, etc.) are unremarkable. There was no change in the pancrease or the mass of cells left on my mesenteric artery from my last set of scans and my CA19-9 level was still in the single digits! All in all, a good report!

My next scans are scheduled for the middle of May (which is not really 3 months, but we wanted to have the scans and results before the big Doddridge (MaryBeth’s side) family reunion in Ohio. The doctor also agreed that 2 years IS a big date and that some time after August 14, I will get my chemo port removed and I will switch to a 6 month check-up schedule (like I have said previously, the 2-year mark is a biggie)!

Thanks for all the positive energy! It worked, yet again!

Merle

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I have been invited to spend some time with some undergraduate students in a public health course at Georgia College & State University. It will be odd to once again be on the campus at GC&SU. In some ways, not having my contract renewed there was one of the best things for me. From Milledgeville, I was able to secure a job working at the CDC, which eventually led to my becoming a civil servant and (most recently) working in the Division of Violence Prevention on research topics that I was focusing on in graduate school. On the other hand, my time at GC&SU was generally good and my departure was under less than ideal conditions.

Tomorrow I will be talking about my journey with my cancer, including what the future holds. It’s ironic that I am going to have this talk tomorrow, as I will find out on Tuesday what my tests from last week indicate. While I remain hopeful and I can report that my nausea was less intense these last couple of days, I cannot help but feel as if the news I will receive on Tuesday will not be positive. I hope I’m wrong.

I will be sure to blog when I have the results.

Merle

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