A Tribute To Merle

Click on the link below to see a tribute to Merle’s life:

http://www.youtube.com/watch?v=wK8FpG5h7fY

He led a good dash. http://www.merlehamburger.net/2008/11/counting-our-blessings

Merle Makes the Newspaper

The Atlanta Journal Constitution ran feature article on Merle in Sunday’s paper. Here it is.  Click on it to make it large enough to read.

Merle’s Obituary

Dr. Merle Edward Hamburger of Lilburn, GA, born March 1, 1966, died of pancreatic cancer on Tuesday, July 19, 2011 at 10:45 pm. Merle’s life was dedicated to the development of good character, strong values, and positive self-image of today’s youth. His work at the Centers for Disease Control focused on preventing youth and domestic violence. As a black belt in the martial arts, he taught students courage, integrity, perseverance, self-control and indomitable spirit at Northeast Tae Kwon Do and American Karate Productions. He was also active in adult leader training for the Boy Scouts of America and an involved leader of the youth at Unitarian Universalist Congregation of Gwinnett. Merle is survived by his wife, MaryBeth; children Benjamin, Kevin, and Abigail; mother Sydney; and siblings Marjorie, Isaac, and Sidney. Merle was predeceased by his father, Edward and older brother, Sandy. A memorial service will be held at the Unitarian Universalist Congregation of Gwinnett, 12 Bethesda Church Road, Lawrenceville, GA 30044 on Monday, July 25 at 2:30pm. In lieu of flowers, please make donations to the Pancreatic Cancer Action Awareness Network, www.pancan.org.

Memorial Roast

Merle’s wish was that people gather to celebrate his life rather than sorrowfully mourn. A memorial will be held at the:

Unitarian Universalist Congregation of Gwinnett
12 Bethesda Church Rd
Lawrenceville, GA 30044

The memorial will be held on Monday July 25, 2011 in the afternoon. Mary Beth is finalizing arrangements with their minister. A specific time will be set and posted on this blog shortly

Memorial Roast Dress Code:
Scouts: uniform would be OK
Karate: uniform would be OK
All Others: Casual “Merle” style clothing is appropriate or Tuxedo with Birkenstock sandals and white socks

Lodging
A block of rooms and group rate of $79 have been arranged for at:
Country Inn & Suites
1852 Rockbridge Road
Stone Mountain, GA 30087
770-465-6515
Let them know you are with the “Hamburger” group

In Lieu of flowers please make donations in Merle’s name to PANCAN.ORG
(Pancreatic cancer claims 95% of all patients with-in five years)

Doctor! Doctor! Give me the news…

My last post was full of downers of self doubt and sadness, so I thought I would post something upbeat for the holiday weekend.  My family is vacationing with MaryBeth’s family (parent’s, siblings, sibling’s spouses and most importantly for MaryBeth, sibling’s newboarn infants).  MB loves to hold and play with babies, so she has a 2 to keep her busy this week.  It’s was great to watch her with them yesterday as she had a HUGE smile on her face just holding the baby and letting it fall asleep in her arms.

Healthwise, I met with Dr. Kauh on Thursday.  The news wasn’t great.  Essentially, we both agreed that I have worked through 3-4 treatment regimens to slow down or stop my tumor growth and nothing has really worked.  My tumor is now a cm smaller than the original tumor and is growing around and getting tangled up in some very delicate arteries.  Dr. Kauh is going to get me into a Phase IB clinical trial which will look at the potential efficacy of a new drug for treating cancer (they are not sure exactly which cancer it will help: pancreas, thyroid, or lung).

The hope is that this experimental drug holds some promise, but if now, the next step would be to set up home hospice care.  Essentially, the hospice workers deal with the issues surrounding people who are dying (not that I am planning on doing so in the near future, mind you).  Instead, they would come by daily (or more if needed) to check on me, provide medication as needed and all in all just be supportive of the transition we are going through.  One benefit is that MB would have to worry less  about taking care of me, as the hospice nurse would be able to take on someone of those duties, leaving MB and I more time just to enjoy being together.

A friend of mine, with whom I was talking about this yesterday, boiled it down for me.  If the Phase IB trial doesn’t work, we’ve essentially exhausted palliative treatment for me.  I have no sense how this will affect my prognosis, but truth be told, I have too many trips and plans in the works for me to die any time soon.

Next month, MB and I are traveling to DC for PanCan Advocacy Days.  I was going to go by myself, but MB felt it would be helpful to have someone there to look after me (not to mention that she is committed to the cause, too).  In July, the family and I will be flying up to NJ to visit with my mother and attend her annual blue berry festival.  For those who are long time readers of this blog, you may remember that Mom owns a blue berry farm, and she has a party each year at which she invites friends and family members to come pick blue berries and enjoy in some revelry.

In August, MB and I decided to join my family in Wildwood NJ for the annual Hamburger family get together.  We have been unable to attend for years and years because the trip to the beach occurs the week after school starts for our kids and we couldn’t see pulling them out of school to go to the beach.  This year, however, given the situation, we thought we could pull the kids out so that we can all go join my family and my step mother’s family at the beach.  Sometimes special circumstances call for special action.

So as you can see, we have a lot to look forward to over the summer.  I’m getting excited about all the stuff coming up.  And we are doing all this to continue to make memories that my kids can have of me when I am still generally healthy.

This past week was horrendously busy.  It doesn’t sound like a lot, but I worked extra long days for much of the week and I am exhausted.  Last night I think I ended up going to bed before 8p because I was so tired.  I hate that my disease continues to affect me so that even simple tasks (working, driving, etc.) wear me out.  I am so glad that my supervisors at work understand my situation and have encouraged me to take care of myself (e.g., work for a long as I can and then go home).  It is hard for me to accept the reality that things are only going to get worse, with me having less and less energy which will impact all aspects of my life.  I miss being more involved in Karate and Scouting, but I just do not have the energy to do either, really.

As much as this posts sounds like I’m complaining, I’m not.  I getting used to my “new normal” reluctantly.  I’m getting used to it, but that doesn’t mean that I have to like it.

Sorry for the long ramble of a post.  I will post more later.  But for now, the day is just starting out, it’s sunny and warms outside.  I’m on vacation with my family and MB’s family, and things are good.  Much to be thankful for today.

Thank you for all your well wishes, thoughts, and prayers.  I say it all the time, but I truly mean it.  I love you all and thank you for your support and love.

Merle

Weekend update

Just a quick note to let you know that things progress for me.  I am still experiencing nausea and got sick a couple of times this week.  My doctor put me on another anti-nausea medication (scopolamine).  More and more, I am leaning toward not continuing chemo.  As bad as I have been feeling, I felt worse on chemo and I do not thinking it makes sense to go through that discomfort.

Right now, I’m scheduled to receive simple IV fluids the next 2 Tuesdays.  On the 8th, in addition to getting my fluids, I will also get my next set of scans.  So we’ll have a better sense of how I’m doing at my doctor’s appointment on March 15.

On the upside, I have been enjoying having my Mother visiting with me since Wednesday.   Also, my sister came down yesterday.  Between them and all of the support at work, church (we have 2 churches making us meals each week), and the karate school, I feel very loved.

Merle

Then and now

First, thank you all for the positive thoughts for yesterday.  It was a full day at the hospital and I was nauseous for most of the time (Pavlov would be so proud)!  I got through the infusion without incident and am now wearing my chemo pump until Thursday.  The doc reduced the dosage of the Irinotecan chemo this time because of all the difficulty I had with it the first time around.  We’ll see how well it goes this time.

Last night I was able to take the kids to karate which was great.  Didn’t get a chance to see a whole lot of people, but the parents I saw were gracious with their concern and I had several good conversations.  My best friend Luis was there for a while and we sat and talked a bit.  I find that I get solace just being with Luis and that talking is not always necessary — maybe that’s because we are such good friends.  I am thankful for having his friendship.

As to the title of this post, as I lay awake last night I realized that I was much more flippant about my condition earlier in my journey than I seem to be now.  Part of that can be explained by my sudden disuse of my anti-depression medication.  (It was nothing conscious, but when I stopped taking the Xeloda, I stopped taking the other meds I had been taking in the morning.  I’ve fixed that – under threat of punishment from MB if I do it again.)  But anti-depressants not withstanding, I think another explanation comes from the disease itself.  It is easier to fight of an initial attack of pancreatic cacncer; it’s harder to do so when it comes back.

Earlier in my journey I said I was cautiously optimistic, but clearly I was more optimistic than anything else.  It is easy to talk about dying when you’ve had no new evidence of  cancer for years.  The thought is more abstract as you continue to successfully battle the disease.  When the cancer comes back, though, the thought of dying becomes more prevalent.  I cannot help but think about my friend who died within 6 months of recovering from surgery.  She went into the office for her first 2 month scan and they found new tumors (that was January).  Unfortunately, she passed in June.  Is that to be my fate?  I don’t know, but it’s harder to discount this time around than it was last time.

Quick update from TGen: they apparently got samples of my initial tumor and genetic testing suggests that the chemo I am on right now (Irinotecan) shows the most promise for my specific tumor type (presuming that my new tumor is similar in makeup as my initial tumor.  So I am on the right medication.  It’s just the meds kicked my butt after the first dose.  Let’s see how it does this time around (when the docs reduced the dosage to 75%).

As always thank you for your support, love, and caring.  They mean the world to me.

Merle

Purple Stride 2010

And now for something completely different.  In less than 2 weeks, Me, my family (including my brother and wonderful nieces), my friends (from scouting, church, karate and work) are going to join me to help raise awareness of pancreatic cancer.  We all will walking in the Atlanta Purple Stride around Perimeter mall.  Before we can get the legislature to start spending more money on Pancreatic Cancer research (currently, PC get just about 2% of the national cancers institute’s annual budget, even though it is one of the top 5-diseases associated with cancer related death and has the highest mortality rate than any of the other top 10 cancers).  I know that’s a lot of numbers, but it’s all to say that we need people to be aware of the problem and donate funds to help solve it.

It was suggested by a dear friend today that I remind people how they can help.  Of course, one way would be to make a donation to my fund raising efforts at:  http://pancan.kintera.org/purplestrideatlanta10/merle

Better yet, though, come join us.  Collect donations from your family and friends so that we can take a step closer to finding a cure (an effective treatment; a useful method of early detection).  To do that, do your own fund raising once you have joined my team at: http://pancan.kintera.org/purplestrideatlanta10/indy.

I hope you have a great and safe Halloween (you know there was a time that eating the candy that the kids didn’t want was a joy — now, bleah!  <sigh>).

Merle

September Check-in

Hello to whomever has continued to stick with me through this (less informed) aspect of my journey (roughly translated: thank you for continuing to read my blog, when I don’t post much).  I still have to go through the pictures from TumorPalooza so I can post a slide show and let you all see the fun and hilarity that was experienced by all who attended.  Soon (I hope).  Soon.

As for my health, well, that’s been an up and down roller coaster.  Two or three weeks before the Palooza, I started having both abdomen and back pain.  Nothing major, but enough that I wrote my oncologist about it and he moved up my scans because, “You never complain, so when you do, I take note.”  The oncologist put me on extended release morphine (one 15mg pill in the morning; and one 15mg pill in the evening.  I was supposed to take that and then use vicodin for break through pain.  Well, apparently, morphine and vicodin makes for a powerful cocktail as I was a bit “woozy” at work.  As my wife likes to point out, I feel asleep during a meeting with my branch chief (who was totally cool about it, but still…)

The long and short of it is, my wife drives me into work and I try to beg, borrow, or steal a ride home in the afternoon.  (Seriously, it means a lot to me that people were so willing to give me a ride.  Thanks Matt, Kevin, and Lynn.)  Eventually, I realized that I didn’t need the vicodin all that much and the morphine by itself doesn’t woozy me up as much, so I was about to drive myself into work again.  Unfortunately, I began to develop a tolerance to the morphine and I told my oncologist about it and his solution was to double up the morphine at night.  I did that for the first time last night and let’s just say that I woke up incredibly “woozy” this morning.  So it looks like my wife’ll be driving me again.

All this is well and good, but no one can seem to figure out WHY I am having this pain.  My oncologist sent me to a spine doc and he told me he didn’t think the pain was from the spine (he said it seemed more typical of cancer-related pain that is at a constant level, rather than spine related pain which typically changes over the course of a day).  I go back for another abdomen and pelvis (or abdomen and chest) MRI at the beginning of November to see what, if anything, has changed.

Meanwhile, not to appear like a slackard (after helping to take care of the karate school since Mr. Quinn passed away a couple of months ago, or my work with scouts, I have also taken up the cause to get the two counties that boarder where I live (Gwinnett and Dekalb) as well as the town in which I live (Lilburn) to pass a proclamation announcing that November is pancreatic cancer awareness month.  We’ll see what happens.  I am thinking about doing so for Atlanta, too.

So there you have it; the last couple of 6 weeks in a nutshell.  I will say that one benefit of not having much of an appetite is that I have lost about 15 lbs in the last several weeks.  It so much better when the weight is coming off.  :-)

More later.

Merle

F*%&ing Buses (Part 3)

I have been using the “bus” as a metaphor to indicate an event that has had a profound, yet negative effect on my life.  Getting a diagnosis of pancreatic cancer was a metaphorical bus hitting me.  My father passing away, another bus.  My friend getting a brain tumor, another bus.  But toward the end of July, I got hit by the mack-daddy of all metaphorical busses.

I have mentioned here multiple times that I train and teach at the American Karate Productions studio in Tucker, GA.  AKP-Tucker is not a huge dojo, but it has a loyal following that has become a second family for many students and it’s owner, Mr. Robert Quinn, was the patriarch of that family.  He was not only interested in teaching karate, Mr. Quinn knew that he was teaching important life skills to his students. 

One of the things I apprecaite most of all about Mr. Quinn is that he realized the importance of shaping the art to the student, rather than the student to the art.  We got involved with AKP when we were looking for a school for my eldest son who has Asperger’s Syndrome.  We knew it would take a special teacher who was willing to adjust his expectations to my son’s level of ability.  I am a 3rd degree black belt and I know there are students who can kick heigher or faster and likely stronger than I can, but Mr. Quinn also knows that given my size and build I might never be able to kick above my head.  He did not hold that against me.   I know other parents have come to AKP for exactly for the same reason, because they knew Mr. Quinn would treat them fairly and work with their son or daughter compassionately.

In addition to teaching karate, Mr. Quinn conducted several outreach programs at many of the local schools on how to be safe; he provided seminars on how women can protect themselves.  He was intereconnected with many of the businesses in the area.  Mr. Quinn had a dramatic impact on people far and wide (just do a search for “Bob Quinn” on the website “Martial Talk” and you will find story after story recounting how Mr. Quinn affected the poster’s life.

While Mr. Quinn had some medical issues that were manageable with medication, he managed to be generally active all day.  He gave his heart and soul to the school and on July 18th the school came to collect.  Earlier that morning, Mr. Quinn had passed out in his bedroom.  His family came to him and were able to revive him when he indicated he was having trouble breathing.  The EMS were called and they were unable to improve his condition and he was transported to Emory University Hospital.  Mr Quinn’s treatment began in the ER and then moved into the ICU.  During this time, he flat lined several times; the staff performed CPR repeatedly over a 3 hour period and had to use the paddles to shock his heart back into a sinus rhythm on multiple occasions.  Around 5p, the doctors discontinued treatment (presumably because further treatment would do more harm than good) and he died about 30 minutes later from complications associated with a pulminary embolism which damaged his lungs and heart and  probable brain damage.

As an observer of interpersonal interactions (I am a social psychologist, after all), I recognized Mr. Quinn playing the role of part instructor, part mentor, part disciplinarian, and part role model.  Interestingly, I think he spent more time in roles other than that of instructor.  For me, Mr. Quinn was my friend, my mentor, and a role model.  He met me almost every day that I saw him with a smile and a good word and he had the excellent ability of finding the good in every person and situation.  As I dealt with my pancreatic cancer, Mr. Quinn was there to support my family and me and lift my spirits.  More and more frequently, I would turn to Mr. Quinn for advice about some issue or the other and I sought his approval often.  In many ways, Mr. Quinn became the father figure I wish I had had.

When my father Dad, I remarked how disappointed that my relation with my father was not as strong as his relation with my brother (Sid) and my sister (Marjorie) seemed to have.  I said that Sid and Marjorie lost a daddy where I lost a father.  They cried because they had lost an important male figure from their life.  I cried because I didn’t have that kind of relation with my father. 

I understand now how my siblings must have felt as our father died.  This sense of a emptiness inside us that may eventually be filled, but for now just exists as a hole in who I am.  I cried when Mrs. Quinn asked me to tie on Mr. Quinn’s original black belt. I cried when I wasn’t being strong for everyone else.  I cried because my father figure had died. 

From the “Right time; Right place” files, the Saturday before he passed, I brought my camera with me to the school to get pictures of the students training (we had been working on updating the content on the School’s website.  I was able to capture the picture of Mr. Quinn to the right, which so perfectly captures his personality.  Indeed, this picture adorns the wall in the front of the training area (so he can continue to watch over his students) and Mrs. Quinn has decided to have my pictured etched onto Mr. Quinn’s headstone.

In the end, I go day by day, trying to pass along his teachings to the other school’s students.  For the time being, I am functioning as one of the leaders of the karate school staff, being a point of contact for questions about the school, family, and other issues.  I am sad that I have to fulfill this role, but I am honored that Mrs. Quinn thinks highly enough of me to entrust the running of the school to myself and a select few other students.

Mr. Quinn, I continue to feel your loss deeply and hope that I am making you proud of the job I am doing to help keep American Karate Productions together.  You are and always will be the OIC and ROTU.

Merle