Thank you DVP…

Support has been streaming in for me from all different areas, but I was admittedly surprised when Marina sent me the first list of wacko sociopaths volunteers to help my family and me in the coming days and months.  Fully 66% of the names were colleagues of mine from work.  I am truly touched by their generosity.  One of my colleagues told me yesterday that one message he has taken away from reading my blog is the importance of going home and holding his children; reveling in their existence.  Looking back (and knowing what I know now), I would like to think I might have made different choices about what was and was not important in my life. 

Each of my children went to the same pre-school and each, when they were 4-years-old had a special day called, “Dad’s and Doughnuts.”  When my older son went through, I forgot about the special day (because I had something important to do at work), and I was traveling when my daughter’s class had theirs.   I did, however, make it to the pre-school for my younger son’s special day and I did take my daughter out for our own private Dad’s and Doughnuts when I got back from my trip. 

I do not mean to imply that I am a bad father for having missed these events; I actually think (despite a sometimes too short temper with my boys as they grow older and more independent) that I’m a good, loving husband and father.  I’m just reassessing my priorities as I move into this new phase of my life.

I will leave you with a quote (emphases added by me) sent to me by a new friend; someone I first met at Wood Badge training and who reached out to me during both weekends to offer support and compassion to someone he did not know:

“To laugh often and love much; to win the respect of intellingent persons and the affection of children; to earn the approbation of honest citizens and endure the betrayal of false friends; to appreciate beauty; to find the best in others; to give of one’s self; to leave the world a bit better, whether by a healthy child, a garden patch or a redeemed social condition; to have played and laughed with enthusiasm and sung with exultation; to know even one life has breathed easier because you have lived – this is to have succeeded.”

–  Ralph Waldo Emerson

More later…

Merle

Introducing the Elephant…

Randy Pausch is a computer science professor at Carnegie Mellon who was diagnosed with pancreatic cancer in September, 2006. During his now famous ‘Last Lecture‘ at Carnegie Mellon (an incredibly inspirational lecture), Dr. Pausch says that, “When there is an elephant in the room, introduce him!” Here is what he said in an Email when telling his friends and family of his diagnosis:

I have recently been diagnosed with pancreatic cancer (adenocarcinoma).The good news is that I’m one of the 20% of pancreatic cancer patients who are viable for surgical removal of the tumor, and I’m scheduled for surgery. It’s a major surgery, where they will remove the tumor (which is about 3mm in diameter), my gallbladder, part of my pancreas, part of my small intestine, and possibly part of my stomach. I will be in the hospital 2-3 weeks, and then another 4 weeks of bed rest at home. At that point, I’ll be physically 100% again. If the surgery removes every last cancer cell, I win. Otherwise, eventually the cancer will recur. Statistically, the long-term prognosis is not rosy; only 10-20% of people who have the surgery survive to five years. Needless to say, I intend to be one of the lucky ones who sticks around! The median age for this disease is 66 and so there is some reason to believe my odds will be better than the typical patient’s (I’m 45 and in good physical shape), so they can hit me with more aggressive chemo and/or radiation after the surgery.

The similarities between me and Dr. Pausch are eerie. He was 45 when he was diagnosed; I am 42. His tumor was 4.5cm in diameter, mine is 3.7 cm. While I am not currently a candidate for surgery, I am getting ready to begin chemo/radiation therapy to reduce the size of the tumor so that I will be a candidate for surgery. Despite traditional methods of staging cancer, Dr. Josh Larson, one of my radiologists, said that there are really only 3 stages of pancreatic cancer: 1) operable; 2) potentially operable; and 3) non-operable. This is consistent with information presented on the Cancer Supportive Care Programs website. Based on my scans, Dr. Larson said he thought I was somewhere in between the operable and potentially operable stage. So as with Dr. Pausch, I am likely to be a candidate for surgery. Moreover, there is no evidence of metastasis and there is no evidence that the cancer has spread to the lymphatic system. But in the end, as Dr. Pausch says, the prognosis is not rosy. According to WebMD, less than 5% of the diagnosed pancreatic cancer patients survive past 5 years (corroborated here), though contrary to what Dr. Pausch reports, the percentage that survive to 5 years after surgery may be higher if surgery is successful.

I expect that, like Dr. Pausch, I am at an advantage with regard to this disease as I am in reasonably good health and 20+ years below the median age of diagnosis for this disease. So I am younger than most people diagnosed with pancreatic cancer and I am not symptomatic (many cases of pancreatic cancer are diagnosed when the disease had progressed so far that it caused significant symptoms).

I would argue, using this figure as a representation, if “Population 2″ represents the typical pancreatic cancer patient, I am more likely a member of population 1.

Reading Dr. Pausch’s website, I found a link to a paper related to statistics and cancer by Dr. Stephen Jay Gould. Upon learning that he was diagnosed with mesothelioma, Dr. Gould did research and learned that the median survival rate for his form of cancer was 8-months and he reasoned that this means that, “…half the people will live longer; now what are my chances of being in that half?” Similarly to me, Dr. Gould concluded,

…I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

As reported by Dr. Stephen Dunn, “Dr. Gould lived for 20 very productive years after his diagnosis, thus exceeding his 8-month median survival by a factor of thirty!” As I have stated, I, too, am young; my disease was diagnosed in a relatively early state; and I have lots to live for. Like Dr. Gould (and Dr. Pausch, for that matter), I fully intend to beat the statistics.

I am focusing on the present; I am not worrying (trying not to worry) what may happen in the future. Today, my younger son asked me to come to his last day as a fifth grader (tomorrow is field day), and while I took for granted my older son’s field day, I do not plan to do so with my younger son. Although I do not have a lot of leave available, I think it’s more important to spend time with my son tomorrow than it is for me to get the analyses for a paper (or any other stuff I need to do for work) completed. I hope that my colleagues in DVP will understand.

I’ve been told by various people that they have been moved by my posts. If nothing else, I hope you take away this important message: Do not take for granted what you can enjoy today; the options tomorrow may be entirely different than those available today.

Join me as I relish the joy(s) I have today.

Merle

To Merle & MaryBeth’s friends…

The following was posted as a comment on my blog by Marina:

For the local ATL friends who are interested in helping with child care or meals, please let me know at marina@merlehamburger.net and I will include you on the Hamburger Care Team e-mail list and share upcoming opportunities. Note: your name will be vetted by Merle and MB to ensure that no wacko sociopaths (emphasis added) are brought into the caring circle :)

peace and love,
Marina

As I said, I really appreciate that Marina is doing this for us, though I did say that eliminating wacko sociopaths will significantly limit those who CAN be brought into the caring circle.  ;-)

I will post a more substantial blog later, but I have to say, it’s the little things in life, often, that have the largest impact.  Last night my 4 year old daughter was scared to sleep in her own room.  When I went to check on her, she asked if I would sleep that night in her room.  I agreed and she was reassured and fell asleep quickly.

It’s pretty powerful stuff when just agreeing to be there for someone is enough to chase away fear.  My daughter’s request is also a metaphor for life in general.  (Wow, that turned out to be WAY deeper than I expected — originally, this was intended to be a post about staying present and enjoying the simple moments.  Who knew I could wax so philosophic?)

Merle

It was a dark and sunny Monday…

As I mentioned yesterday, I had a difficult time with some of the lessons learned during wood badge (particularly those that were related to the future). Well, apparently those concerns persisted into the evening, as I had a particularly upsetting dream last night. It was not a ‘scary’ dream. Essentially, I was stopped by a police officer for erratic driving (my car had been vandalized and I could not control it). I was immediately seen by the judge and received a suspended sentence (because the judge somehow knew I had just completed wood badge). You would think that I would be excited, but the judge then told me that while I will not have any penalty, I would have to wait an additional 12 months to get my wood badge beads (leading me to begin uncontrollably crying). I then woke up and my mood was in the toilet for much of the morning. After my doctor’s visit, though, I dropped by my old digs (the then named Program Evaluation Research Branch) and visit of the Divisions of HIV/AIDS and talked with friends. Jane, one of my closer friends from that branch went to lunch with me and we chit chatted and I felt better after. Thank you, Jane!

Today MaryBeth and I spent 3 hours at the Winship Cancer Center.  In the end, we met with a clinical social worker, spent about 15 minutes with my oncologist, and I had 11 tubes of blood drawn.  Tedium not withstanding, today’s appointments were pretty basic.  Dr. Kauh did prescribe another medicine (Ultrase) to help supplement pancreas enzymes into my system (to help address some — um, gastrointestinal challenges I was experiencing).

I did hear from the folks at Hopkins.  Dr. Cameron wants me to come up to Baltimore for a 3D CT scan (woo hoo), but he could NOT fit me in before May 27th, which is the start date for my chemo / radiation therapy.  After consulting with Dr. Kauh, Dr. Cameron agreed that he could see me after my 6-week treatment regime.  So tomorrow I have a radiology appointment where the doctors will take a high resolution scan to very precisely isolate the location of my tumor.  From this appointment, the radiologists will create a treatment plan that implements intensity modulated radiation therapy.

In the end, today started out kinda yucky, but it eventually got better.  I do have to take a moment and thank some important folks: JoAnn came over to help watch the kids while MB came with me to keep me company during my appointments.  JoAnn has also offered to help out tomorrow, so MB can come with me when I go for my radiation simulation.  JoAnn and her husband, Steve, have been supportive of me and my family through a great many tough times.  I feel incredibly lucky to count them as friends.  JoAnn and I taught the Coming of Age program together at UUCG twice and we are getting ready to teach the Our Whole Lives program together next year (note the positive outlook on the future!)

Second, I want to thank Marina.  Marina graciously offered to coordinate the volunteer efforts of folks from UUCG.  With all the sundry issues MaryBeth and I need to pay attention to, it’s nice to be able to send an Email to Marina and know that she will keep on top of stuff and get people to help when and how they are needed.  I cannot again say how moved I am by the outpouring support for me and my family.  I feel like I am repeating myself, but I continue to be amazed that folks from church, work, karate, and scouts not only offer their help, but in many cases do so with a certain forcefulness that moves me to speechlessness (which, for those of you who know me, is quite a feat).  To one and all: “Thank you!”

Merle

Weekend Update

Good evening! I’m Merle Hamburger and you’re not! (One wonders how many of my blog readers will get that reference?!)

Wood Badge Group Picture

I spent this weekend participating in the second weekend of my Wood Badge training. All in all, it was a great experience; if for no other reason, I got to spend 6 days and nights with committed scout leaders (some of which SHOULD be committed). Prior to my going to the training, I did not have as good an appreciation of the patrol method used within the scouts.

I remain in awe, though, of the scouters who embraced me (emotionally, physically, or both) in support of my fight against cancer. By and large, most of the people there knew nothing about me except that I had cancer (Friday morning, we were encouraged to share if anything significant had changed in our lives since the last weekend — something that might be producing some anxiety. I shared about my situation!)! All throughout the weekend, scout leaders came up to me and took my hand and told me they were thinking / praying for me. The love that was extended to me was overwhelming and, as I have said elsewhere, humbling.

There were some particularly difficult times this weekend, too. Friday night students from the Wood Badge course from last years Wood Badge course came to get their recognition of completing their ‘tickets.’ As I sat there, I couldn’t help wondering if I would be alive in a year to get my recognition (the course director for the 2009 Wood Badge program has told me she expects me to be there to get my recognition). Today (Sunday), we were given a presentation on ‘Leaving a Legacy.’ We watched clips from ‘Mr. Holland’s Opus‘ and I again got weepy. I can identify with the Holland’s character — I do a lot, but how much of an impact am I really making?? Despite my attempt to remain in the present, I could not help but think about the possibility that I will not have as much time as I had expect to make my impact on this world.

I spent a lot of the weekend reciting my motto (“I’m not dead yet!”). I shared as much as those who asked me wanted to hear (and possibly more than they wanted to hear). Apparently, some of that got back to rest of the staff. Today, one of the staffers (with whom I had very little interaction) shook my hand and told me I inspired him. I was moved. This is a gentleman who has dedicated himself to scouting, with 21 years as both a youth and an adult leader. He has received numerous awards and held several positions of authority and, yet, he is inspired by me. I’m just a guy who is dealing with the crappy cards he was dealt (by using his very odd sense of humor).

Another staff member told me today, “WE (emphasis added) are not dead yet” indicating that he continues to think of me and hope for the best. Yet another staff member corrected me, saying that I.N.D.Y means “I’m not DONE yet!” (Thank you Shawn).

So I want to thank all the members of the Beaver Patrol (Sheryl, Dawn, Eric, Richard, Bruce, Mike I., and Mike R.), the various other patrols, and the staff members (particularly: Ty, Vickie, Rusty, Shawn, Anna, Ed L., and Will) who have reached out to me to show their support. I cannot come up with the words to express the level of appreciation I have for these scouters who have shown me outrageous levels of compassion.

I think the increase in my “dark” moods is associated with the impending initiation of my treatment. It’s much easier to be brave when talking about a treatment that will begin at some unspecified point in time. Now I have a start date…it’s more real…and more scary!

My wife told me that my oldest son (who has Asperger’s Syndrome) has been acting out this past weekend and has continued not to turn in his school work. I used to think that he was unaware of what the outcome of my cancer was (that is, he knew I had cancer, but not what that might mean). I wonder if he is more aware and just now getting around to expressing that awareness. I need to follow-up with him…

Several of you have told me to ‘get over being sorry.’ But that’s how I’m feeling at the moment.

In the ‘Odds and Sods’ category, I called Dr. Cameron’s office at Hopkins on Friday. Dr. Cameron wants me to come in for a 3D CT scan, but wanted to try and schedule it for the week of 5/27. I pointed out that I’m scheduled to start treatment on 5/27. Dr. Cameron’s administrative assistant was going to check with Cameron and find out what he wants to do. So at this point, I have no sense whether I’m going to go to Baltimore this coming week or not.

Tomorrow is my pre-clinical trial lab work and a visit with the oncologist (and possibly some other appointment — not really sure, yet).

I’m looking forward to sleeping in a bed this evening. Thank you for checking back.

Merle

This Weekend

As I alluded to earlier this week, tomorrow I will be heading to wooly, forested hills of Gainesville, GA for a full weekend of scout leader training. I will be leaving Casa Hamburger around 5a Friday morning and will likely get back around 6p on Sunday evening. As a result, I will not be updating the blog over the weekend. I did not want anyone to come to the blog, see that I had not posted anything and then wonder / worry whether something had happened.

Today was tough psychologically.  Around mid-morning, for no real apparent reason, my mood began to darken and has essentially remained that way for the remainder of the day (I’m hoping a moderate adult beverage in a moment will help brighten SOME of the darkness).  All things considered, this is the first really down day I have had in over a week, so I am not too concerned.  I did make an appointment with a CDC EAP (Employee Assistance Program) counselor for Monday.  Hopefully he will help put me in contact with a therapist that has experience helping newly diagnosed cancer patients.

I hope you all have a great weekend.   Thank you to everyone who has read my blog; who has commented about my blog (either to me in person or here online); and to those who may or may not have read my blog, but have nonetheless been wonderfully supportive of me.  You all mean a great deal to me and I count myself fortunate to have such good friends.

INDY

Merle

I’m Sorry.

Growing up I was a fat kid and did not feel as though I was particularly popular at school. Everyone knew about me, because I was very loud and gregarious, but I had a relatively small cadre of friends. Part of what I did in high school and into college was to develop my sense of empathy, reasoning that I could raise my “value” by being someone to whom people could bring their problems and talk about them. To this day, when people come to me with concerns in their lives, I listen and try to offer (hopefully helpful) advice. In short, I like helping other people and dislike it when my actions have the opposite effect.

I dislike causing people to get upset. That’s who I am. Yet, all I have done recently….Okay, let me stop here and say that, Yes! I understand I have not DONE anything, but my life situation has changed in a way that has negatively impacted others. Thus, while I have not actively DONE anything, I (Merle) am the source of sadness, stress, concern, etc. for others.  That having been said, though, I’m sorry this is happening.  (Not sorry as in I did this on purpose, but sorry as in I really (Really, REALLY) wish this were not happening and sorry as in I hate that my circumstances make others sad and/or upset.)

On several occasions, I have called people whom I have told about my cancer back to make sure they are okay and to see if I can do anything to alleviate their pain and/or distress.  As I said, I use humor to help ME get through this, though I had to stop and remind myself that not everyone can use humor as a defense mechanism in that way (Cathy, a friend from high school, essentially told me she was not in a place where she could appreciate my humor yet.)  My Mom has called me (almost) everyday to check in with me and when she asks me how I am doing I almost always respond, “I’m still alive!” or “I’m not dead yet!”  Yesterday, after such a phone exchange, I called her back to check to make sure that my saying those things wasn’t upsetting her.  As I said, not everyone has my sense of humor.  Nevertheless, when I have called to check how my friends are doing with the news of my cancer, I have uniformly been told that I shouldn’t be worrying about them because I have enough to worry about.

I would like to refer you back to yesterday’s posts…I only have to worry if I think about the future, and realistically, no one knows how I (Merle) will respond to chemo/radiation or the surgery. No one knows if the CT scan that did not show any metastasis or infiltration by the cancer into the lymph systems was 100% accurate. No one knows if I will defy the odds and be a 1-, 5-, 10-year (or more) survivor of this cancer. Folks can certainly worry about those things, but worrying will not change the fact that for each and every one of those outcomes, my chances are either 0 or 1 — I either have metastases or not; I will either be a 5-year survivor or not. Worrying about it will NOT change that outcome.

What I can do, then, is try to make my life, today, better. I choose to do this by making other people’s lives better. That is why I do my work at CDC: to help better understand the roots of youth violence, sexual violence, and intimate partner violence: so that others might use my work to help prevent these forms of interpersonal aggression. That is why I am Boy Scout leader: to help the youth in my troop, in general, and my sons, in particular, grow and develop really positive skills and become leaders themselves. That is why I teach karate: to help the youth and adults I teach to develop their physical fitness, their coordination, and their confidence. That is why I work with the youth at my church: to help give them a forum to think about and voice their opinions (religious or otherwise), to help instill a sense of morality, to help them become better people.

So when I think people are suffering as a result of my illness, I will do what I can to cheer them up — help them feel better. It’s who I am. I am not so much trying to “fix” the problem, but trying to help others help me; it’s a lot easier to “stay positive” and be of good cheer when those around me are positive and not looking at me and worrying about the future. (So in a way, I’m just being selfish when I try to cheer people up!) Today, I choose to enjoy the glass!

To paraphrase the play, Evita: “Don’t cry for me my friends….I’m not dead yet!” (I’m feeling better! I think I’ll go for a walk! I’m Happy! I’m Happy! — this last parenthetical is much funnier in my head, where I can ‘hear’ the British accents delivering these lines! Here’s a link to the Monty Python clip)

Merle

Staying present…

I meant to add this part to my previous post, but figured that I would simply add it as it’s own post.  I had said earlier today that I had gotten “teary” when I attended my younger son’s concert a couple of weeks ago.  Well, yesterday, I went to my daughter’s ballet recital (or whatever you call a program involving 3-6 year old girls moving about in a quasi-coordinated manner on a stage).  Last night I stayed present and had an absolutely fabulous time.  I relished in my daughter’s joy of dancing (several of the teachers told me how much she loves to dance).  When she danced and saw either me or Marybeth looking at her, my daughter’s face exploded in a smile.  If you will pardon a little paternal gloating, she was absolutely adorable last night.  It is times like last night that make living “for the moment” a sheer pleasure.

Merle

How do I do it?

As I have been telling friends and family about my cancer, I inevitably get asked how am I doing / holding up / getting along. As I have said in a previous post, I am largely able to function by focusing on the instrumental tasks of the day. I continue to get up at 5:30a (at least on Monday, Wednesday, and Fridays — time permitting) to go lift weights and run. Tuesdays and Thursdays, I try to stay home to help my sons get ready for school (I usually leave after my younger son gets on the bus; my older son is in middle school and his bus doesn’t even show up until 8:30a). I make and go to appointments; I do my work at the office; I go to scout meetings, teach karate, and facilitate an online graduate course in biostatistics. In short, I keep myself busy. If I’m busy, I’m not thinking about possible outcomes of this journey (though, talking about my trials and tribulations with cancer as a “journey” brings a whole new meaning to the saying, “It’s the journey that’s important, not the destination!”).

Some people have commented that I really seem positive. I’m so glad. I have my good days and I have my bad days. A couple of weeks ago, my younger son had his final concert in elementary school. He had been working hard to get everything right and was really excited that the whole family was going to be there. As I stood around waiting for the concert to start, I really began to get weepy (thinking about the possibility of not being around to see my daughter’s concert). Later that night, I again cried as I said that I really wanted to take the kids to Disney (my daughteris a HUGE princess nut and I want to make sure that I can be there when she goes to see all her princess “idols”). But, days like that are becoming less frequent as I accept and work toward beating this disease.

I dear friend once told me of a parable about a Buddhist monk and his student: One day a student came to the Buddhist monk and asked ‘Master, how can you be happy in a world of such impermanence, where you cannot protect your loved ones from harm, illness and death?‘ The monk held up a glass and said ‘Someone gave me this glass, and I really like this glass. It holds my water admirably and it glistens in the sunlight. When I touch it, it rings! One day the wind may blow it off the shelf, or my elbow may knock it from the table. I know this glass is already broken, so I enjoy it incredibly right now.’

The real challenge with dealing with cancer is to remain present. Do not worry about the future; worrying about the future only causes stress today (and takes away from enjoying the here and now). As I said, I am really working on “not sweating the little things.” MaryBeth has been wonderful in trying to remind me about that; she is very good at pointing out when I am not living according to that motto.

The other way I cope is through humor. Victor Frankl was Austrian neurologist and psychiatrist as well as a Holocaust survivor. Some of his therapeutic philosophy came from the atrocities he experienced while being held in Nazi concentration camps. Of humor, Frankl said:

Humor [is] another of the soul’s weapons in the fight for self-preservation. It is well known that humor, more than anything else in the human make-up, can afford an aloofness and an ability to rise above any situation, even if only for a few seconds.

So I will continue to use my (albeit odd) humor to rise above and deal with this situation. Mark Twain once said: “Rumors of my demise have been greatly exaggerated.” As I have said elsewhere on this blog, I take a more Monty Python-esque approach, favoring the following quote instead: “I’m not dead yet!

Until next time….

Merle

T-t- t- t-timelines…

Well, this has been an exciting day.  My visit with the radiologists went well and I have signed the informed consent to participate in the phase II/III TNFerade clinical trial.  (I tried to bribe the project coordinator to make sure I got ‘randomized’ into the experimental arm, but she said I didn’t have enough money — but did say perhaps we could talk if I won the mega-millions jackpot tonight!)  Here are the important dates coming up:

May 16-18: I’ll be up at Scoutland in Gainesville, GA participating in the 2nd weekend of wood badge (the ‘graduate’ level of training for scout leaders) — I’m part of the “damn” Beaver patrol of SR-909.

May 19: Spend the morning with Dr. Kauh (medical oncologist) to get labs and get me ready for participating in the clinical trial.

May 20: Spend the morning doing a “sim” in the radiology department.  This is an involved scan to get information so the radiologists can plan my radiation treatments.

May 23: Have my chemo port “installed” and have a final CT scan before beginning treatment.

May 27: Celebrate my 18th wedding anniversary by having my first day of chemo / radiation therapy.  If I get randomized into the experimental arm of the clincial trial, I’ll also have my first intra-tumor injection of TNFerade Biologic.

I am hoping that somewhere, during the copious free time in this timeline, I will also have an opportunity to fly to Johns Hopkins to meet with Dr. Cameron for a surgical second opinion.  I have sent his office my records and hope to hear from him soon. 

As odd as it sounds, I am actually feeling okay at the moment (again, ‘cept for the cancer thing).  Seriously, it is easier for me to deal with things knowing there is a plan of action in place (a colleague told me that I was such a “scientist” to be glad to have a plan of action).  The radiologist today was less grim about the possibilities of the tumor becoming operable than the medical oncologist has been, so that is also good news. 

Finally, I want to take a moment to again talk about my Dad.  Ed Hamburger has battled four kinds of cancer (skin, prostate, bladder, and lung).  Less than 2 weeks ago, Dad had the upper part of the right lobe of his lungs removed to treat his lung cancer.  He was released from the hospital six days after surgery and today is able to go out to a class at his synogogue, have lunch with friends, and tonight he is going out to celebrate his birthday.  I hope everyone reading this will join me in wishing Dad a very, very happy birthday! 

Merle