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)

Another Update

 

Today has been challenging; filled with frustration wanting to keep Merle comfortable while the inevitable approaches. Sydney (Merle’s mom) and MaryBeth have been with Merle all day. Scott, MaryBeth’s brother drove all night to be here as well. Diney, Merle’s  brother returned this evening. Merle’s highschool friend, Kathy, is flying down from VA tonight as well. Throughout the day there has been  a steady stream of visitors from AKP, the CDC, UUCG, and the BSA.

Merle seems comfortable however his breathing is labored and he is growing weaker.

We will continue to provide updates through this blog.

Here are some photo’s

Merle's 45th birthday with his family.

Merle, his brother Diney, and his best friend Luis

Merle on July 16,2011

 

 

 

 

 

Merle and MaryBeth at home June 2011

Merle gets a big kiss from his daughter

Brothers

 

Brothers

 

Hospice Update

After a rough night Friday, Merle has settled in to the hospice and seems comfortable there. He still has a lot of edema in his belly and his legs, making it difficult for him to walk, but it has improved now that he is in the hospital bed with his legs up for most of the day.  We take short walks around the facility and in its garden a couple of times a day to keep up his mobility, but he is resting 20 plus hours a day.  He is very jaundiced from liver failure, and the combination of dehydration and jaundice makes it  difficult for him to focus or express a rational thought.  His pain seems well controlled by the morphine pump he is now on, though.

Our family is coming down to help out with managing things here.  My parents came Saturday and will stay until Wednesday.  Merle’s mom came today and will stay indefinitely.  Merle’s sister may come Thursday for a few days.  Merle’s brother is coming Friday for the weekend.  The plan is to have one adult with Merle to make sure he does not try to get up by himself (he is very unsteady on hos feet) and one adult with my kids at all times.  Between family, church friends, CDC colleagues, BSA friends, and others this plan seems to be working well.

The plan is for Merle to stay in hospice for 1 week for evaluation, and then he may be able to come home for a while.  They are trying to get some of the fluid off, re-evaluate his medications,and make sure his pain is under control.

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

Being cold

I’ve written before that I have been cold more often than not, largely due to my loss of weight.  I’ve also talked about going into work as much as possible.  Well, this past Tuesday, I went into work but only made it half a day before I was feeling too miserable to useful (so I went home).  Around 4p, I started shivering (out of no where).  I was so cold that I went upstairs, got in bed, under the covers, and tried to warm up.  I was less than successful.

I went down for dinner and continued to shake more and more.  Finally, MaryBeth went and took my temperature twice (99.7 and 100.8).  Our oncologist said if my temperature ever got above 100 to go to the emergency room.  I thought MB was being silly, but when I got to the ER, my temp had spiked to 105.   Apparently, this is not good because I was taken back to a room immediately, they put cold compesses on me, and put in 2 IV lines.  Three hours after entering the ER, I was in a hospital room and have been here since.

The doctors are looking for and infection, but have not been able to find anything yet.  So I sit here at Emory, get broad spectrum antibiotics every two hours.  Meanwhile, I have been catching up on my sleep.  :-)

My temp is hovering right around 100 at the moment, but there is talk that I may be able to go home tomorrow (we’ll see).  Just wanted to bring you all up to date.  You know, when I was on an all liquid diet, my nausea was almost non-existent.  Now that I’m back on solid foods, the nausea is back; talk about a trade off.

That’s all for now.  More later, perhaps.

Merle

Returning

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

Latest Milestone

I know it’s been over a week since I last blogged.  These things happen. 

Yesterday I celebrated another milestone in my journey with pancreatic cancer!  It was one year ago yesterday that I had my LAST chemo treatment.  At that time, I said:

I have to say, though, that I am feeling particularly angst-y with this last treatment.  This treatment represents the last thing I am scheduled to actively do to fight the cancer (beyond the general eating right, exercising, taking my vitamins, and saying my prayers — some of you might get that odd reference).  Moving forward, my fight with cancer becomes passive; I live my life, keeping up hope, but there are no plans to have any other treatments unless something shows up on a CT scan…I don’t like waiting, but for all intents and purposes, that’s what I’ll be doing from here on out.

Well, here it is 366 days later and I have dealt with and survived the waiting (as I continue to say, “I’m not dead yet!”).  Over the past year, the waiting has gotten easier.  As the time in between scans has increased, my anxiety level about my cancer has been reduced.  I continue to get anxious about my scans, but instead of getting anxious for 3-4 weeks every 2 months, I am getting anxious for a couple of weeks every quarter.  Ideally, however, there will come a time when I will not get anxious at all. 

I celebrated yesterday by getting to work early; working all day on statistical analyses; having lunch with Jennifer, a good friend and colleague at CDC, and then having a date with MaryBeth.  Unfortunately, MB had the beginnings of a migraine when we got home from dinner, so she went to bed.  I, on the other hand, fed by ‘Lost’ addiction and watched several episodes after MB was asleep.  I had heard all the hype about the show, but had never watched it.  One day I was cruising www.hulu.com and I noticed that full episodes all the way back to season 1 were available for viewing.  I gave it a try and was quickly sucked in. 

More later.

Merle