Click on the link below to see a tribute to Merle’s life:
He led a good dash. http://www.merlehamburger.net/2008/11/counting-our-blessings
Click on the link below to see a tribute to Merle’s life:
He led a good dash. http://www.merlehamburger.net/2008/11/counting-our-blessings
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
A block of rooms and group rate of $79 have been arranged for at:
Country Inn & Suites
1852 Rockbridge Road
Stone Mountain, GA 30087
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)
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
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.
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.
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.
When I was first diagnosed with pancreatic cancer, I spent an inordinate amount of time thinking and worrying about my own death. I knew that upon diagnosis, I had a 5% chance of living for another 5 years. When I became one of the 20% of pancreatic cancer patients who were even eligible for surgery and I had the Whipple procedure, I spent an inordinate amount of time (though less than before) again worrying if I would be one of the 4 in 5 people who have the surgery, but have a recurrence in the first 24 months.
Whenever I would have conversations about how I was doing and I would talk about the statistics (because, yes, I’m part of the nerd herd), people would inevitably point out that none of us know when we’ll die (reminding me that any day, anyone could step outside and get hit by a bus). Great! Now I have to worry about dying from cancer AND getting hit by some motor vehicle.
In recent weeks, I have been “struck” by 3 such buses. Over the next several posts, I will describe each of the different stories (yes, I’m spreading it out over time because people still tell me I’m not blogging enough — there’s nothing wrong with milking a productive blog idea).
The first “bus” hit during the 4th of July weekend. While my family and I were at the reunion, I found out that a good friend of the family had been diagnosed with a brain tumor and had had surgery. While I probably met him before then, I first recall meeting David when I was a new Cub Scout leader (my boys joined the same pack that David’s son was in). Being an Eagle Scout, David seemed to know everything about being a scout leader; now that may have been out of proportion to reality, as I knew NOTHING about being a scout leader, so a damp sponge new more about it than I did.
David was one of the first people to really get me excited about Dutch oven cooking. When his son “crossed over” to Boy Scouts, I took up the mantle (or should that be ladle) of being the pack Dutch Oven expert. David and I continued our friendship over the years as we seemed to meet up at various scouting events and working together at various training events. Every time I would see him, David always had a smile on his face and a cheerful word to share (even when we were trying to put together a Dutch Oven cooking demonstration in the pouring rain).
When I was diagnosed with pancreatic cancer 2 years ago, David and his wife were always willing to help provide support (food, transportation, etc.) when we needed it. I want to say that I am glad that MaryBeth and I have the opportunity to return the favor, but that sounds too close to saying “I’m glad David has brain cancer.” Let me just say that I am glad that I am healthy enough that I can provide as much support to David and his family as they provided mine.
As I mentioned, David has had surgery to remove the tumor and is currently undergoing rehab. MaryBeth and I visited with him one evening last week and he recognized us and we had a pleasant (if not labored) discussion. David told us he gets tired at night and that by 7p his brain is just not firing on all cylinders (okay, he didn’t use that metaphor, but that’s the gist of what he said). He had some speech production difficulty, but I am uncertain whether that was from being tired because of rehab, damage done during the surgery, a combination of the two, or some other reason.
As far as I know, there were no warning signs that David had a brain tumor. As with my diagnosis, out of nowhere David’s life and the lives of his family have been changed forever. I do not know what his prognosis is: he may be able to fully recover from the surgery. It may be that they will have to adjust to a “new normal” (a phrase bandied about at the Advocacy Days event — cancer patients want their lives to be “normal” again and what some need to do is accept that what is or is not normal has changed for them as a result of their cancer). He may not survive.
David was stepped off of the curb and most certainly was hit by a metaphorical bus. F-ing buses!
For those of you interested in how I am doing — I’m (still) not dead yet! I am under some stress at the moment (that’s a bus for a different day), but physically, I am generally okay (just the normal aches and pains of an out of warranty 44 year old).
I hope folks had a great 4th of July holiday. My family and I traveled to Mason, OH for a reunion of MaryBeth’s side of the family. Ignoring the 9+ hours in the car there and back, the reunion was a lot of fun. One of the things that I really like about MaryBeth’s family is that when they get together, they tend to do things TOGETHER. There was breakfast and dinner together; playing cards, going to the pool, doing some other activity together; at dinner there were skits and stories or slide shows together. It was an immersion into her side of the family (out to 2nd cousins). As I said, it was fun, but I got home on Monday thinking I needed a vacation to recover from my vacation. Just check out this crowd:
So about the title, the other day I was cruising along the Internet and I decided I’d go check out the Johns Hopkins Pancreatic Cancer discussion board. I remember that going to the discussion board when I was more actively dealing with my cancer was less helpful than I would prefer because most of the stories I saw were negative. People were dying. People were responding badly to treatment. People were despondent because there was nothing to do.
I know that all of these response are thoroughly valid. The only known possible cure (surgery) is only available to 15-20% of the patients. For the others, there just really isn’t any proven treatment (which is largely why I have become an advocate for PC research and education). That’s why I thought I would take a moment to post what I thought was a hopeful message that people can survive PC.
Well, most people were very supportive about my post and providing congratulations and prayers for my continued success. The second post I read, though, was from someone who was not particularly pleasant. Essentially, the poster pointed out that the majority of people with PC cannot have surgery and where was the hope for them and then said my post seemed to be critical of people who cannot have surgery (something like, “You’re saying that people who cannot have surgery are not trying hard enough.”)
I get that the poster likely has or know someone who has PC and is not a candidate for surgery. As I said earlier, I understand the anger and frustration. I just wasn’t ready for someone to so completely misunderstand my post (one of the challenges of electronic communication). But if I have learned one thing during my journey it has been the importance of LIVING life.
For a long time, I was letting the cancer define who I was. I spent a lot of time thinking about what I would miss in the future and not a lot of time thinking about what I could be doing now. That’s a natural reaction. The challenge is moving through those steps of grieving quickly enough that one doesn’t miss the opportunities and experiences they have now. If my cancer comes back, my family and I will deal with it then. We will not, however, spend too much time worrying about it and certainly not to the extent that it interferes with other activities. I go to work everyday, I continue to teach karate, I am getting more active in the Boy Scouts. The fact that I am a cancer survivor is just one facet of who I am (and a facet that is largely irrelevant to my daily life, except that I have to take enzymes at meal time).
Well, this is much more wordy that I expected. Thanks for bearing with this blathering. More later.