Of brothers and men…

Today was a busy run around town kinda day. It started with my younger son making omlettes for his uncle, himself, and me at 9a. Actually, it started 2.5 hours earlier when I could not sleep any more — kinda sucks when your body is so used to getting up at 6:30a that even on the weekends it ‘wakes up’ at 6:30a and going back to sleep just doesn’t work (actually, 6:30a is sleeping in for me; before I started in treatment, I would get up at 5:30a so I could work out at least 3 days a week — unfortunately, when I’m ‘plugged in’ it’s best if I don’t sweat and get my bandages all wet, so I really have to limit my exercising).

This week is scout summer camp for my boys’ troop at Camp Rainey Mountain. My younger son’s best friend is also in the same troop and his father and my very good friend, Luis, and I drove my sons, his son, and one other boy from the troop up to Rainey Mountain today. It’s only about 2 hours, but that means 4+ hours in the car today. I have said it before and I’ll continue to say it: I am very lucky to have Luis as my friend; he showed me how much fun scouting can be and has become invaluable in my life. Thus, a large portion of my day today was spent driving. <sigh>

But above all, today, in particular and this weekend, in general, was great because my brother, Sid, and his son have been visiting. In fact, they were supposed to leave earlier this morning, but late last night my brother decided to spend another day here. I love my job at the CDC, but I have to say that the challenge is being so far away from my family / siblings. I love all of my sibs, but I seem to have a stronger bond with Sid, due in part to the fact that we have the same kind of warped sense of humor.

It has been great having Sid here. He was invaluable in completing the swing set (I’ll have pictures in the next day or so). More than that, though, it has been really helpful just having him here. We have always had a healthy sibling…rivalry is not quite the right word, but we have had a fair share of competition. I have always wanted to be like my big brother Sid. When he had an afro, I grew and afro (somewhere there is a picture, but I was unable to find it for this posting; I’m sure if it becomes available, I’ll rush to post it: it was a high point in my fashion evolution). He was a drummer in high school, so I became a drummer in high school.

I have always looked up to my big brother (even when I got taller than him). I look at his life and only see him as someone who is successful in his business (he’s a high muckity-muck in charge of, among other things, E-commerce for Children’s Place department stores). He lives in a beautiful house with three great kids and a loving wife. I wish I was more like him. I don’t know if Sid will ever appreciate how much he has meant to me over the years and how much his love and support has meant to me more recently, but I think he wouldn’t change even if he DID know. Thank you, Sid, for your love, your friendship, your help!

Until tomorrow…

Merle

Looking for data…

Lynn, my step-sister who lives in Israel, left a comment that made me think a bit. Lynn expressed her surprise at the different facets of my ‘Merle-ness’ of which she was previously unaware. As I try to do as often as possible, I responded to her via Email, but as I was writing the response, I thought of a topic about which to blog.

In my Email, I said to Lynn that when I ponder the existence of a higher power, the analytical side of me asks: “Where’s the evidence? Show me the data!” Further, I said to Lynn (as I have to other people) that such a response is in direct opposition to the concept of faith. But as I wrote the Email, I remembered one of my favorite stories (which goes in the face of my analytical side) and I would like to share it with you:

A minister was living in a St. Louis suburb that had recently been inundated with a lot of rain. In fact, his town was flooded. At first, the water was only to his waist and a person came by in a boat. The person called out to the minister, “Preacher! Jump into the boat and I will take you to safety!” The minister smiled and shook his head saying, “Thank you my son, but I have faith in the Lord. He will save me. Go help someone else.” Not wanting to argue with the minister, the man moves on.

And the water rises…

The water rose so much that the minister had to climb on top of his house to avoid it. Another man comes by in another boat and says, “Preacher, climb into the boat and I will carry you to safety.” The minister again shook his head and says, “I have faith in the Lord. My God will save me! You go help others!” The man shook his head, but relented to the minister’s request.

And the water rises…

Eventually the minister has to stand on his tippy toes in order to continue breathing and a helicopter with a ladder dangling from it comes to his rescue. Over the PA system, the pilot called to the minister, “Grab onto the ladder and I will fly you to safety!” The minister shouted back, “My God will save me. Help those who are in greater need!” As he was running low on fuel, the pilot decided not to argue with the minister and goes onto the next house.

And the water rises…and the minister drowns.

The minister gets to Heaven and goes before God and says, “Holy Father! I have been your faithful servant for more than 20 years. Why, in my time of need, did you not help me?”

God looked at the minister and said, “I sent 2 boats and a helicopter! What more did you want??”

I love that story. It still makes me chuckle even after telling it so many times. It also helps me to remember that, for me, the divine is not necessarily some entity sitting in judgment and/or taking a personal interest in me and my life. Instead, the divine is all around me — I just have to stop and look at it. I truly believe we can find the divine in nature; in the beauty of clear, sunny day; in the love of a child or a friend or a sibling or a spouse. Today, I “worshipped” the divine as I worked in my back yard with my brother, Sid, and my very good friend, Luis. I basked in the divine as we all, Luis’s family and my own, sat around a dinner table and enjoyed each others company. I saw the divine in my daughter’s eyes when she saw the swing set my brother and I completed today (and when I said that she could have a brownie for dessert)! Sometimes, even us analytical folk need to stop and appreciate the beauty and the divine that we see everyday.

I hope that you had the opportunity to experience the divine today, as well!

Enlightenedly yours,

Merle

Responding to comments…

For those of you who don’t know, in the “Hitchhiker’s Guide to the Galaxy Triology” a super computer was constructed to answer the question: “What is the meaning of life, the universe, and everything?” As it turns out, the answer was 42. Which, as Aunt Catherine (MaryBeth’s sister) pointed out is also my birthday. I am not sure I agree that I am part of the answer to life, the universe, and everything…but who am I to argue with such reasoned logic??

Rhonda asked, in response to my post about the levels of various biomarkers, about my CA19-9 (carbohydrate antigen 19-9) levels. The CA19-9 test is a blood test from the tumor marker category. Unfortunately for me, the CA19-9 is not a very good measure for identifying pancreas cancer because those of us with this type of cancer have a deficiency of fucosyltransferase that is needed to produce CA19-9. With all that as background, through the 8+ months leading up to my cancer diagnosis my CA19-9 levels were in generally in the 40s (normal levels are 37 and lower). Rhonda, in answer to your question, the oncologist only ran the CA19-9 once since he’s seen me; when he ran it, my level was 58. (One does not get terribly upset until this biomarker is 200+ or more.)

As Cathy mentioned, a friend had ordered me an “I’m Not Dead Yet!” t-shirt from Zazzle. Here is a link to the Zazzle page with that t-shirt. I am partial to the ‘Ringer T-shirt’ (the one with the colored neckline and sleeve bands). While not necessary, please feel free to order your own today. Who knows, perhaps they’ll be worth something some day!

I know I have said this before, but I wanted to again say how lucky I feel to have so many people pulling for and supporting me. Whether it’s just reading my blog and leaving positive thoughts / comments or doing something else, I really want you to know how meaningful your love and caring are to me. From the bottom of my heart, thank you!

Last thing, MaryBeth and I spent some time with an LCSW on Monday to discuss how my cancer is affecting our relationship, as well as the impact it has on our kids and our relationships with the kids. Jean, the LCSW, sent us a flyer yesterday for a program I wanted to let you all know about. The Jack and Jill Foundation for Late Stage Cancer is dedicated to provide memorable experiences for families with young children whose parents have late stage cancer. The foundation is based here in Atlanta and I have volunteered to provide photographic services for families on these WOW experiences. I think this is a great organization and I encourage you all to do what you can. I am not currently eligible for the foundation’s services, so in the meantime, I’ll provide those who are with whatever support I am able.

Until next time…

Merle

Visualization….

Early in my diagnosis, I remember sitting in the oncologists’ waiting area and I picked up a magazine that had an interview with a karate instructor who also had colon cancer. She described a variety of different activities she felt were helpful to her. In particular, she had said it was helpful to imagine that the her white blood cells were like PacMan, going around and gobbling up all the cancer cells. After a while, the karate instructor imagined her white blood cells were little karate guys “kicking cancer’s butt!” A couple of days earlier, I had someone else suggest that I should envision little PacMen going around my body and eating the cancer cells and all I could think is, “Do people really do that?”

I have been called many things in my life, but chief among them has been analytical (as in, “You are too analytical to believe in _____” or “You’re so damned analytical!” or simply, “You are SUCH a scientist!”). Apparently visualization works for many people, but I think, as with many of these kinds of ‘treatments,’ it is necessary for the person doing the visualization to believe in it; I don’t believe, so I do not think I’m a good candidate for it. I guess I’ll have to put my faith in the slash, burn, and poison methods of cancer treatment (in medical parlance that would be surgery, radiation, and chemotherapy).

Health update time: After a rough first couple of days, this week, the last couple of days have been pretty easy going. As I said previously, I felt much better on Wednesday after sleeping upwards of 12 hours on Tuesday. Today, I was very tired around 3p and ended up sleeping (hard) for a couple of hours. I did get the report of my labs this week. For those keeping score at home, my platelet count this week was 105 (with a normal range of 150-400). Last week, it was also low at 110, and I didn’t hear anything about it. My lymphocyte level was 5% (normal range 15-43) and my monocyte level was 16% (normal range 5-12). My doctors said my bloodwork looks okay, so these abnormal levels apparently are not enough to raise concern. I will follow-up with my oncologist (or my personal medical authority — my big Sister — who is a muckity-muck (a very technical medical term) nurse at CHOP).

Other than that, I am very much looking forward (as I believe I mentioned yesterday) to my brother and his son visiting tomorrow. My kids are looking forward to having their cousin visit and actually spent some time at the dinner table discussing (just short of arguing) about with whom their cousin will sleep. I think we’ll just put all three of the boys in one room and let them work it out.

Until next time…

Merle

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Scout Disappointment…

First, let me say that I am feeling SOOOO much better today than I did on Monday or Tuesday of this week. It’s amazing what 12 hours of sleep helps one’s physical and mental status. Today, I worked a full day at the office and am still kicking around 10:30p (okay! Okay! I’m going to go to bed after this post!)

As I have mentioned previously in this blog, I have been pretty involved with the scouting program. I began as a leader when my oldest son was a “Wolf;” I continued to be his leader through “Bears” and “Webelos I.” At that point, my younger son requested that I be HIS leader, so I continued as my younger son’s “Webelos I” and “Webelos II” leader. (The Webelos rank spans both 4th and 5th grades.) Now that my boys have crossed over to Boy Scout Troop 549, I have looked forward to being an adult leader in the troop as well.

Unfortunately, my ability to serve as an adult leader has been somewhat hampered by my cancer diagnosis. Specifically, I had hoped to participate as an adult leader on outings the troop took, such as the recent 20 mile hiking trip, the fun water weekend, and the upcoming scout summer camp. Unfortunately, my oncologist suggested that trying to go on a 20 miles hike was not the brightest idea given my current health issues. I had to skip the water weekend, as I had to stay home to complete treatment for the week. This coming Sunday, my boys are heading up to Camp Rainey Mountain for a week of BSA summer camp. Right now, I’m hoping to make it up to camp a week from tomorrow to demonstrate to the scouts outdoor cooking techniques (as part of my Wood Badge ticket). I am hoping that I will feel well enough to: (a) actually go up next Thursday and (b) stay until Saturday. That would make me happy! Here’s hoping.

Friday my big brother comes to visit with his 5 year old son. I’m really looking forward to seeing Sid and and his son. It is difficult not having family closer, so having them visit will be a pleasure.

Until next time…

Merle

Top 10 Things Not to Say (Part 2)

So, I’m still feeling tired, but the nausea has passed. As such, I hereby offer the Top 5 things I’d rather folks not say to me. As with the first 5, please keep in mind that you all have a “Pass” if you have said any these things to me previously. I hope this list is helpful for you moving forward.

5) “What’s your prognosis?” As with #9, in reality, my doctors cannot say what my prognosis is! As I have remarked in other posts, outcome data for my form of cancer are not great. If you could clone me 99 times, the data suggest that anywhere from 4-20 of these 100 Merle’s will survive to 5 years. Without knowing if I (the ‘real’ Merle) would be among these survivors, spending time wondering about what may be is something I chose not to do. In addition, I’m trying to stay present and asking me about my future is counterproductive to that activity. If you feel like finding out about my prognosis, do a Google search for “pancreas cancer, prognosis” and you’ll get more than enough information, but please do not ask me.

4) Some version of the “We all are going to die of something!” or the “You could step off the curb and get hit by a bus!” It’s absolutely true that we are all going to die (as Clive James has said, “Nobody gets out of this world alive.“) and absolutely unhelpful. As Lori Hope wrote in her book, “Oh great! Now, in addition to possibly dieing from cancer, I have to worry about possibly being hit by a bus!” As a friend from church pointed out to me, we all have to deal with our own mortality, it’s just I’m lucky enough to be reminded about it every day (’cause I have doctors appointments every day). Think of it this way, it’s the difference between knowing that you MAY be hit by a bus someday and seeing a bus hurtling toward you and wondering if you have enough time to jump out of the way before it hits you.

3) Anything that involves cancer war stories. When I first publicly announced my cancer at my church, a woman at church stood up and told a story about her son who had one form of cancer or the other and how hard his treatment was, but that he survived. I don’t need / want to hear about how difficult my treatments will be. I know! The last couple of days have been hard enough that I really do not want to have to worry about it getting worse (though, I’m sure it will). Similarly, my wife had found a website that was written very humorously (at least the first half was). The 2nd half (which she admittedly did not read) described the difficulties the author had with complications from her Whipple procedure (e.g., on 2 separate occasions she woke up covered in blood). I appreciate people wanting to raise my spirits with humorous stories and stories of successfully battling cancer; I just don’t need them if these stories include pain and suffering. The take home message here is: tell me positive stories of cancer (not scary stories) about people who have had pancreas cancer. I need hope, and horror stories don’t accomplish that.

2) “It happens for a reason” or that my cancer is “God’s will.” I can appreciate that some people need to believe in pre-destination. I am not sure I believe in it, but what I do believe is that there is not a higher power that is actively involved with my life. As I have said elsewhere in this blog, my theology is influenced by the book When Bad things happen to Good People by Rabbi Harold Kushner. As Rabbi Kushner argues, God created the world with a set of natural laws. Upon completion, this God no longer takes an active role in the events that happen (instead God gave humans free will to guide their actions). I refuse to believe that (if there is a God) he or she would arbitrarily give someone cancer. Your mileage may vary. (BTW, if there is a God that is responsible for my cancer…well, let’s just say I really cannot in good conscience write what I’d really LIKE to say! That God can go to hell — though as a Unitarian, I’m not sure if that place exists either! My wife, the resident theologian and seminary student, suggests that the Book of Job expresses similar sentiments!)

1) Nothing. I realize that one potential by-product of this kind of list is that people are afraid of saying anything to me for fear of saying or doing the wrong thing. I want to encourage you not to be so afraid of saying the wrong thing or making a mistake that you avoid contact with me. Your support and contact is what is most important to me. I would rather have you say the wrong thing than to avoid me. If you absolutely cannot think of anything to ask me here are some suggestions: (a) What is the meaning of life, the universe, and everything? (b) What is your name? Your quest? Your favorite color? or (c) How ’bout them braves? The weather? The new episode of Law and Order: SVU? In the end, I need you if I’m going to successfully battle this cancer. Stick with me, y’all

Cheers,

Merle

..and now for something completely different

I fully intended to provide part 2 of my list of things not to say, but apparently my body has a different opinion. For the majority of my treatment, I have felt generally okay (what’s a little nausea in the balance of the good that the treatment is doing?)! In fact, today I told Dr. Kauh (my oncologist) that I was feeling surprisingly well; that I was expecting to feel worse and that I was pleased that I was feeling as good as I did! Dr. Kauh, who has a dark/odd sense of humor, responded that I should not expect that to continue.

Well, if I believed in such things, I would have to say I must have jinxed myself, as I am feeling pretty crappy today. Whereas last week I could get by with only one or two Compazine tablets, today I have taken at least four. I’m hoping this will pass and is, at least in part, attributable to the roast beef bones that I ate last night. Tomorrow will be better, right?

As a result, I’m going to hold off on writing my list until tomorrow in the hopes that I’ll be more up to the task then. Then again, perhaps this is just an elaborate bait and switch tactic formulated to drive traffic to my site (as I am sure that everyone who read yesterdays post called their friends and told THEM to read, too!). :-)

Talk to you later, y’all!

Merle

Top 10 Things Not to Say (Part 1)

Over the past couple of months, I have been sharing my experiences, via this blog, regarding my change in health status (how’s that for putting a positive spin on finding out you have pancreas cancer). Although it is less prevalent now, in the beginning I felt as if sharing my diagnosis often led to a sense of awkwardness in the people with whom I shared. I think the awkwardness stems from people wanting to say something…anything, but not knowing what to say.

Over the next two days, I am going to provide a public service: I’m going to provide a list of things NOT to say to me in particular, and perhaps people with cancer, in general. This list is developed after reading similar lists I found on the net. Some of these are original, some are specifically discussed in Lori Hope’s book “Help Me Live: 20 Things People with Cancer Want you to Know”, but all of it has to do with what I would appreciate folks not saying to me.

Now, before proceeding, let me offer the following blanket immunity: I do not hold you at fault if you have said any of the following things to me. My only hope is that moving forward you will have a better idea of what may push my ‘buttons’. (And don’t worry — I’m also going to provide a list of things TO say, as well, in a later blog post.)

10) “You look good.” While it’s nice to hear that one looks good if you are feeling well, it’s harder to accept when you are feeling tired or nauseous or generally crappy. When people say “you look good”, it’s easy to be reminded of the old Saturday Night Live skit in which Billy Crystal would tell folks “You look mahvelous” and that it’s better to “…look good than to feel good.” In this regard, please simply ask me, first, how I am feeling before telling me I look good.

9) “Don’t worry! You’ll be fine!” I know people mean this to be supportive, but in reality it trivializes what I am currently going through and what I will likely be going through after this 6-week treatment cycle is completed. My doctors do not know if I’ll be fine. If they don’t know, how could you?  Pancreas cancer is particularly pernicious; even if my 6-week cycle of radiation / chemotherapy (I’m being given 5FU) is successful, I will continue to need weekly infusions of another chemotherapy (gemcitabine) for 6-9 months after, if not longer. Presuming I am a candidate for surgery and I survive a Whipple procedure, I will continue to have CT scans every 3 months or so, always wondering if the next scan will show signs of recurrence. This is not negative thinking, it’s just the reality of my disease.  So perhaps, instead, just agree that ‘Cancer Sucks!

8) “How are you feeling?” This simple question sounds innocent enough, but it is broad and can be interpreted in many different ways (from the very benign to the very anxiety producing). Such a broad question could be interpreted, for example, as inquiring about my general state of being. There have been times when someone has asked me how I am doing and I have wanted to respond, “I have cancer! How do you think I am doing?” Instead, ask “How am I doing today ?” Focusing on the specific helps ME focus on the specific, rather than dealing with issues (e.g., the future) that I have taken great efforts to avoid thinking about. As I have told many, I have been very good at being ‘instrumental’ (making and keeping appointments, getting copies of my records, etc.) while avoiding having to deal with the emotional aspect of my cancer.

7) “Think positively!” / “Have a positive attitude!” / “Be strong!” Many people believe (and have told me) that having a positive attitude is the key to beating illness, in general, and cancer, in particular. While I am doing my very best to maintain a positive attitude, there are times, particularly when I have been thinking about the future, when it’s very difficult to be positive. Lori Hope quoted Dr. Jimmie Holland (who wrote The Human Side of Cancer) as saying: “All this hype claiming that if you don’t have a positive attitude…you are making your tumor grow faster invalidates people’s natural and understandable reactions to a threat to their lives.” If this is all you can come up with, perhaps this is a good opportunity to practice the benefits of silence. Better yet, just let me know that you are there for me (there to listen or help or whatever, as needed)!

6) Don’t tell me about your fears. As I have said above, I am doing what I can to most effectively deal with my cancer; it takes a lot of energy, which leaves very little to deal with other people’s fears. I know this sounds a bit odd, as I have previously stated that I have gone out of my way to try and assuage the concerns of my friends. I guess the difference has to do with whether I inquire about your concerns / fears  versus having you tell me about them unsolicited.  This doesn’t mean people cannot talk to me about the challenges in their lives.  I will continue to be supportive as much as I am able.  However, I am trying to give myself permission, when it gets too much, to say, “I’m sorry you are having difficulties. If you need to talk to someone about these things, you need to find someone other than me with whom to do so.”

Again, if you said any of these things, it’s water under the bridge. You didn’t know then; now you do. It’s all good moving forward.

Tomorrow is the top 5 things I wish people wouldn’t say to me. Until then…

Merle

Only photographic evidence

Those of you who delight, as I do, in reading the comments, will know that my friend Karen asked about photographic evidence of my brother Sid ‘pants-ing’ me. Unless I’m mistaken, there is NO photographic evidence of my brother’s aberrant behavior, so for all intents and purposes, it did not happen (the witnesses are sworn to secrecy). Only Sid/Diney and I know for sure. Regardless, I have a get out of ‘pantsing’-free card until 2013, so I’m living la vida loca at the moment.

Blue CrabA couple of disjointed thoughts and some pictures from the Relay for life. First, my family (my fathers side of it at any rate) gets together each summer at Wildwood Crest, NJ for a week of beach vacationing. Last year, we (the Merle Hamburger clan) planned to join the rest of Clan Hamburger in NJ, but I was in the hospital with an angry gall bladder and what would eventually be diagnosed (8 months later) as pancreas cancer (a bit extreme to get out of a going to a family get together, if you ask me). One event, among many, that I miss is the Saturday evening steamed crab and corn on the cob meal. I love sitting on the roof deck of the Astronaut Motel powering through several dozen steamed blue crab.

Given my current health status (and the early start date of the kids school year), it is unlikely that we will be able to join the Hamburger Family in NJ this year. Thus, today I went out and bought a dozen blue crab and some corn and had my own little crab feast. Now, the crabs were all she-crab (and small, and not very meaty), but it was nice to sit there picking crab, thinking about how nice it would be to be with my family in NJ. (BTW, please drop me a line if any of you are near the eastern shore of MD and might have some access to some primo Maryland blue crab…what is available to me here in Atlanta is pathetic!!)

Finally, I wanted to share with you some pictures from the NJ Relay for Life last night. I looked at the images tonight and was brought to tears. I cannot tell you how much it means to me that my brother and his family (and neighbor) was moved to dedicate their walk, in part, to me. Enjoy the pictures:

Merle/Dad Luminaria

Merle's Nephew

Relay for Life 3

Sid Hamburger and Family

Be well.

Merle

Lack of Sleep

For some reason, I had trouble getting to sleep last night; that coupled with fatigue from the radiation and I have been pretty sleepy today.  I may have found my first real side effect of the treatment, too (oh how exciting): I have some kind of rash on my stomach.  Now, the radiologists did say that I may develop a “sunburn” where the radiation hits my body… I’ll show to Dr. Kauh (oncologist) and Dr. Landry (radiologist) next week and see what they think.  It doesn’t hurt, per se, it’s more just sensitive to touch (kinda like if you were to rub your skin a lot all in the same place). 

On the off chance that some of you felt that perhaps I was too serious in the image I shared yesterday, I wanted to share this image with you as well.  The hat was given to me by Cathy, a friend through a mutual acquaintance.  The hat serves dual purposes: (a) It was the hat Cathy wore when she went with her son’s boy scout troop on trips (so it’s got good scout mojo) and (b) it helps keep the sun off my head and neck (not that the redneck look isn’t in down here in the south, but…besides, Dr. Kauh did say that the chemo would make me photosensitive, so it’s better to be safe than sorry).

Someone suggested yesterday that I look into having “Merle’s Not Dead Yet!” t-shirts made, but I’m not sure that there would be enough of you with that kind of sick sense of humor to wear it.  ;-)   

Know that I’m hanging in there; keeping the faith; being of positive spirit; and gathering the positive thoughts / prayers / energy / love.  Thank you for all that you do in support of me.  In particular, I want to thank my brother, Sid, his wife, Susan, and their neighbor, Cherie, who, as I type this, are participating in a Relay for Life up in New Jersey, in part, dedicated to my father and myself.  I know my illness has been particularly difficult for my brother (having to deal with both my father and my battling cancer) and I wish there were something I could do to help reduce his pain / sadness.  Know that I’m there with you in spirit, Sid!  Thank you for YOUR love and strength (and for agreeing not to pull my pants down again until I reach my 5-year survival date — April 23, 2013)!

Cheers,

Merle