Happy holidays and thank you to everyone who supported Team INDY in the Purple Stride walk. I personally raised $2000, the Team as a whole raised $4010, and the event brought in a total of over $180,000 to support pancreatic cancer research and awareness.
Merle would be so honored and pleased to see so many people helping this cause. I am also honored by the support you have given.
Team INDY is walking in the Purple Stride Atlanta to raise money for the Pancreatic Cancer Action Network on November 19. You can support the team by donating here:
Merle would be honored.
Or you can support me, MaryBeth, personally by clicking below:
Thank you for honoring Merle’s memory by supporting this walk.
In memory of my friend Merle Hamburger
by Rebecca Leeb McGinniss on Thursday, July 21, 2011 at 1:51pm
Merle was my “work spouse”. We met in 2006 when he was hired onto the team I worked on, and I will never forget the grace with which he navigated questions during his interview that left me cringing. Merle was a people-person, but more than that, he was my friend. We shared the same academic interests, sense of humor, and tendency toward irreverence. Every year we celebrated our birth week together — our birthdays are separated by exactly 1 year and 1 week — Why celebrate for just a day when you can celebrate for a whole week was our theory? When I got married in 2008, Merle read the 7 blessings at my wedding.
Merle was diagnosed with pancreatic cancer at the age of 42, and immediately turned his formidable people-skills to advocacy, and his even more formidable will-power to living his life to the fullest. He began a blog (www.merlehamburger.net) and chronicled his experience from start to finish. He concentrated on living in the moment as much as possible. He adopted the mantra, borrowing from Monty Python’s Holy Grail, “I’m not dead yet!”, and celebrated his life though parties with friends and family with titles like “Tumor B Gone” — commemorating his Whipple surgery, where guests were instructed, per the invitation, to “deposit tumors, illnesses, malaises, and other discomforts into the Flaming Chalice of Health at the front door”; and Tumorpalooza — Versions I and II, in honor of the anniversary of his diagnosis. Merle worked until the last few weeks of his life, worrying all the time that he was not doing enough, when in fact, he was doing more than enough. When he could no longer work, he graciously invited visitors to his bedside 24/7.
Merle is the most heroic person I know. He is an inspiration for how to live, even when living seems hardest. I, along with many others, will miss his kindness, humor, intelligence, friendship, and bravery.
Merle Hamburger
Mar. 1, 1966 – July 19, 2011
Keep searching for that Holy Grail…
2008, Purple Stride 5k for PanCan
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
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.
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.
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)
Advocacy days for the Pancreatic Action Network has come and gone. We got to talk with some of our leaders and everyone seemed receptive to our message: We need the National Cancer Institute to develop a strategic plan (logic model) describing how NCI is going to deal with the increasing prevalance of the most deadly cancer.
MaryBeth insisted that I ride in a wheelchair because of all the walking and despite my grousing, she was right. I was exhausted just talking at the 5+ meetings we had.
I found that I was in a unique position at Advocacy Days this year. I am a survivor, but I think I was the only survivor there who was also dealing with an active recurrence of the disease. I’m not sure people knew exactly what to do with me. Do they say congratulations on beating the beast or , “You did it once, you can do it again!!’
The content for the Advocacy Days was essentially the same as last year: try to get you legislators to agree to cosponsor either the house or senate version of the Pancreatic Cancer Research & Education Act. Exciting this year is that we got to meet with several of our congressional members rather than their legislative assistants.
On the health front, it’s just so disappointing that I NEEDED a wheel chair while in DC; or help carrying the bags up t my room. I said this once already, this round of fighting PC certainly makes me feel like a cancer patient (but I’m certainly not ready to die yet). As in the beginning, though, my game plan is pretty much the same: Take each day and live life to its fullest. Spend lots of time with the family making memories (and then on the yucky side, MB and I need to do a better job preparing for the future — transitioning from my paying bills to her doing so.
More later
Merle
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
As I have mentioned, my brother (Sid) and his daughters came to visit this weekend and I cannot even begin to describe how great it was. Sid and I got to talk about stuff that is often too deep to discuss on the phone and my kids LOVED having their cousins visit.
While here we participated in the Altanta PurpleStride Walk, a fund raiser for PanCan. It was a beautiful day for the walk and it was great to see so many survivors there — at least a dozen, some who have lived over 10 years from diagnosis. It is also wonderful how many people turned out to support me and walk with me. I feel truly loved by my friends and family.
