“How you doing?”

First, for those of you who understand, L’shana tova!  (When I was a freshman in college, I had a psychology professor – Dr. Len Green – who came into class and said “L’shana Tova…and if you know what that means, you shouldn’t be here! Whenever I think of that, I smile — I called Len today to share the memory and catch up)! Second, I humbly bow down and ask forgiveness for not blogging yesterday.  I’m sure that somewhere someone is cursing my name because it was my first day back to work and I DID NOT BLOG!!

Yesterday started out great: I got to work early; walked up all 10 flights of stairs (twice); and spent the morning between talking to people about how I was doing, reading through the bazillions of Email I had, and going to meetings.

I was sore today and only made it up 5 flights of stairs in the morning and 6 flights in the afternoon.  I guess I’ll need to work at building up my endurance again.  Before taking my medical leave, I had every intention of clearing off my desk and filing papers.  I fell short on that intention, so I spent some time today filing and <gasp> exposing my desk to fresh air.

What I find interesting about reconnecting with folks at work these last two days was everyone who asked not so much how *I* was doing, but how my family was handling things.  For those who were interested, but either did not have the opportunity or inclination to ask, here is what I have said:  For the most part, my cancer has become less catastrophic since April.  I don’t want to suggest that we are blasé about my cancer, but it become a more mundane part of our lives.

Certainly, my weekly chemo appointments have an impact, as I am often fatigued afterward and I have to take my medicine prophylactically to control my nausea, but really right now we are in a treat and wait kind of pattern.  In the meantime, we are trying very hard to keep our lives as “normal” as possible.  We are going camping with the scouts; going on family trips; having parties; etc.  As much as possible, I am trying to live up to the saying, “I’m doing fine….’cept for that cancer thing!”

Inevitably, people ask how the kids and MaryBeth are dealing with things.  Well, in reverse order, MaryBeth is doing her best to be supportive of me (during my darker moments), taking care of the family, and working on her studies at Columbia Theological Seminary — there’s a joke in there about her needing to develop her relation with God and being married to me; pre-cancer diagnosis, it was just ’cause I’m a handful to deal with and most who know me and MaryBeth often refer to her as a saint for putting up with me. Après cancer diagnosis, I think MaryBeth is drawing strength from interacting with the other seminary students who tend to be similarly spiritual people.  We have had our ‘talks’ about ‘what ifs’ and ‘how we are doing’, but largely, we are both in a “let’s wait and see” holding pattern.

Of my children, my youngest (5 year old daughter) is blissfully unaware of the severity of my diagnosis. At dinners, when she says the prayer, she often asks God to ‘make my Daddy’s tummy better’ and other times she will spontaneously rub my tummy to help. My oldest (13 year old son) has Asperger’s Syndrome. As such, he intellectually understands the science of cancer and the information about it, but there is a lack of emotional connection. Perhaps he understands the severity, but he has not demonstrated such an understanding.

Then there is the middle child (11 year old son). My younger son is a fixer; he wants to make people who are having difficulty feel better (I have to take credit for that particular trait). At our church, we have a place in the service during which people can share their joys and/or concerns with their larger church family. This past weekend, my younger son got up and lit a candle saying that he got stressed out about my cancer. Like my older son, he understands the science of cancer and the information about it, but unlike my older son, he is very much aware of the severity of my diagnosis. We have not discussed statistics or rates, but he knows that we are concerned I may not survive.

So in addition to helping care for his younger sister and “protecting” his older brother (from other kids who might make fun of him), my younger son is trying to figure out how to make his father better. As a father, it is difficult for me to write this; an 11-year old should not have to worry about his father having cancer. To help attenuate the sense of responsibility, my wife’s sister has invited my younger son to Indianapolis for a weekend of no responsibility and fun. For various reasons, I’m going with him and we are going to turn it into a weekend of alone time with Daddy and time to focus on doing only fun things. It may only be a weekend, but hopefully it will help lighten his load a bit.

So there you have it. That is how the family is doing. Perhaps tomorrow I will go into more detail about how *I* am doing.

Merle

Many mothers

Who knew I had so many mothers.  Whether by Email or in person, I have more and more people coming up to me and first asking me how I’m doing and then telling me not to do too much or not to lose too much weight or both.  I feel especially loved and cared for these days as people point out what apparently is, to them, the obvious.  Thank you!

Along the lines of my concern about returning to work is the fact that after being at church for just over 2 hours, I came home exhausted; not just tired, but bone tired.  I dragged myself upstairs, got into the healing chair and proceeded to fluctuate in and out of consciousness for almost three hours.  Once I get back to work, I’ll have to get a handle on who is tele-working so that I can nap in the offices of people who are teleworking (Kathleen, if you are reading, OF COURSE, I’m just kidding).

I hope you all enjoy the end of your weekend.

Merle

Nausea sucks!

All in all, today was a good day.  I still was sore from yesterday and standing up made me more sore than it would normally have had I not overdone it yesterday.  There!  I said it!  I overdid it yesterday! (MaryBeth, who is sitting here watching me write this, just patted me on the back in approval of my self honesty.)  It doesn’t mean I will learn from my mistakes, but I am willing to admit that, this ONE TIME, I overdid it.

I am a little anxious about going back to work next week.  I am concerned about my levels of discomfort and energy at the office.  Most afternoons, I end up laying down on sitting in the “healing chair” for at least an hour or so.  On top of that, I have no (zero, zilch, nada, zippo) leave left over.  In order to be eligible for the voluntary leave transfer program, I had to use up all my existing leave.  When I go back to work, any remaining donated leave goes back to the people who donated them.  So I am not quite sure how I will handle taking 3 out of every 4 Wednesday afternoons off to do my chemo (not to mention Thursdays when my level of nausea from the treatment is at its strongest).   I’m sure my supervisors will work with me, but it’s my nature to worry about things I cannot control.  :-)

Thank you again for those of you who have donated toward my fundraising goal (raised up to $1000 as I achieved my initial goal of $500).  As I have done in the past, I would like to ask those of you who have not done so already, please go over to my personal PANCAN website to donate to my goal.  Every little bit helps.

Ciao for now,

Merle

Six weeks…

When I was checked out by the folks at Hopkins, they said that after 6 weeks, any restrictions on physical activity would be lifted.  They said, “After 6 weeks, you can do whatever you want.”  Okay, um…just because your doctor says there are no restrictions does not mean you CAN, in fact, do whatever you want.  My church is having a garage sale tomorrow and I decided to clear out my closets and office to get rid of stuff that I no longer need / want / use.  Some of this stuff was heavy (e.g., a 19″ professional grade CRT monitor).  I carried the heavy stuff out to the car and from the car to the church….and then I was sore.

I was pleased that for much of this week, I was pain medication free.  Unfortunately, that is not the case today.  I have already taken a percoset and I will likely take another one later on.  It’s interesting, when my stomach (incision) begins to hurt, the skin on my upper abdomen becomes numb. It’s very odd to run my hand over my stomach and go from feeling the sensation of my fingers to not.

After dropping off the stuff at the church, I went to the first cub scout pack meeting of the year.  Imagine, if you will, trying to organize a group of 30-40 six to ten year old boys.  While it can be done, it is extremely challenging.  Think along the lines of herding cats.

Hope you are ‘enjoying’ the debate.

Cheers,

Merle

Thank yous

A brief update today; I was feeling okay earlier, but toward the late afternoon into evening, I began not feeling well.  I’m up to basically drinking mint tea.  :-)

I just wanted to say thank you to the people who expressed encouragement at my lowered numbers (I’m presuming they were responding to my decreased CA19-9, rather than my decreased weight; which is certainly, in my mind, a good thing but something that the doctors would rather not see.  I did eat a reasonable breakfast and lunch and had a snack that was consistent with my doctor’s recommendation to increase my caloric intake.  :-)

Amazingly, we have nothing to do this evening (which is good as I’m feeling kinda yucky).  Tomorrow is the first cub scout pack meeting of the year.  Just imagine, a gaggle of 6-10 year olds running around.  Imagine herding cats…that’s easier (sometimes) than controlling cub scouts.  :-)

In case you all had forgotten, don’t hesitate to go to my PANCAN walk website to support me in my walk to raise money for the Pancreatic Cancer Action Network.  Thank you.

Merle

Numbers game

Today was day two (actually week two) of my post-surgical chemo treatment.  All I can say is, “So far, so good.”  I am a little tired at the moment, but that just may be attributable to not sleeping well or some other issue, rather than the poison — I mean medicine — that was injected into my body.  Seriously though, I will be taking my anti-nausea medication prophylactically tomorrow to avoid a repeat of last Thursday.

Today my doctor’s and I talked a lot about numbers.  First, despite my efforts to the contrary, I dropped 6-7lbs since last week.  Not exactly sure why, as I have been trying to eat this last week.  I have noticed that my appetite is some limited in the evening.  What is a challenge for me is the dichotomy of wanting to lose weight (just ’cause there’s a part of me that wants to, eventually, be able to say that I am half the man I used to be; if I can get my weight down to 180lbs, it would be half of my maximum body weight of 360+lbs in May, 2000) and not wanting to predispose myself to negative effects of the chemo because my body doesn’t have the energy to take care of itself.  In the end, I will continue to try and eat normally and hope that this week was just an anomaly.

Other important numbers include:

  • Bilirubin: 0.7 (good)
  • Creatinine: 1.0 (good)
  • White blood cell: 2.1 (low)
  • Hemoglobin: 117 (low)
  • Platelets: 100 (borderline)

One last number that I got today was my CA19-9 test.  This test is a bio-marker for active cancer tumor growth.  Normal level is below 37 (or so).  Prior to my surgery, my levels were in the low to mid 40s.  Keep in mind, before my cancer diagnosis, my gastroenterologist and I did not think my marginally elevated levels were anything to worry about.  Of course, now I know that CA19-9 often does not become terribly elevated in cases of pancreas cancer until the later stages of the disease.  That having been said, my level last week (when they ran the test) was: FIVE.  Two words:  WOO HOO!

Cheers,

Merle

Pre-Chemo Side Effects??

Here’s a change.  I have chemo TOMORROW and I’m feeling nauseous and tired this evening.  Anticipatory symptoms?  More likely just something I ate.  Either way, thank goodness for compazine as I’m feeling better than I did a couple of hours ago.

It’s interesting, some days the posts just pour out of me; other days I cannot think what to write.  <sigh>

MaryBeth has taken the boys to Winship Cancer Institute this evening for their support group called CLIMB (Children’s Lives Include Moments of Bravery).  This is a 6-week course to help children who have parents or grandparents who have cancer.  My older son has high functioning autism, so I am not entirely sure how much he is getting out of the program, but my younger son seems to be enjoying it.  Even if they are not overtly getting anything out of the program, I think they are assimilating the information and getting something intrinsic out of the program (at least that’s my hope).

In a previous post, I had mentioned the Jack and Jill Foundation for Late Stage Cancer.  This foundation is set up to provide “WOW” (memorable) experiences for families (with at least one child under the age of 18) who have a parent with late stage cancer.  As I have mentioned previously, I have some (moderate) photographic skill — just before my diagnosis, I was taking steps to re-brand myself from Photo Traditions Photography to Merle Hamburger Photography.  Perhaps I will get back to doing so in the near future.  But I digress… I had volunteered my services to the Jack & Jill Foundation, as they were looking for local photographers who could capture the WOW experiences for the clients.  The great news is that I got my first assignment for the foundation.  Once I have more information, I’ll share, but I am really (REALLY) excited that I will be able to help a family dealing with cancer capture some happy memories.

More later.

Merle

Inspiration Redux

At church yesterday, Vini, a woman who has been visiting our church, came up to me to tell me how much of an inspiration I have been to her.  Those of you who know me probably can predict that my initial response was to discount her comment.  Seriously, I am honored that people find my fight against cancer inspirational, but that is not my intention.  I deal with my situation the only way I know how: dealing with it one day at a time; naming the problem; and having an open discussion with folks about how I am dealing with my illness.

Vini told me that her father had passed from pancreas cancer.  She further explained that I was inspirational for exactly the reasons I just described: because I am willing to share how I am doing and dealing with my cancer openly and honestly.  I’m not sure I believe that makes me inspirational, but at least it gave me something about which to think.

As I am apt to do in times like this, I went online to look for quotes about inspiration, and I thought I would share some (as well as some “inspirational” pictures.  Enjoy:

  • None are so old as those who have outlived enthusiasm.” -Henry David Thoreau
  • He who has a why to live can bear almost any how.”-Friedrich Nietzsche
  • Setting an example is not the main means of influencing others; it is the only means.” -Albert Einstein
  • The best way to cheer yourself up is to try to cheer somebody else up.” -Mark Twain
  • In three words I can sum up everything I’ve learned about life: It goes on.” – Robert Frost
  • Strength does not come from physical capacity. It comes from an indomitable will.” -Mahatma Ghandi
  • If you’re going through hell, keep going.” -Winston Churchill
  • In between goals is a thing called life, that has to be lived and enjoyed.” -Sid Ceasar
  • You gain strength, courage and confidence by every experience in which you stop to look fear in the face.” -Eleanor Roosevelt

As for images, here are several: one serious and the others, well, more in line with my sense of humor:

Hope you enjoyed!

Merle

Feeling pretty good, today!

Today was the first day that I can remember that I really didn’t feel tired or have a sore stomach.  Some might say that this has more to do with the fact that I took today easier than most, though, in reality, I spent 2 hours at church working with our senior high youth and I just got back (8:30p) from spending 2 hours with the middle school youth (teaching the OWL curriculum).  It’s true that I spent almost three hours at home “resting” but actually, I just think that I am healing more and more. Last night was good in that I went to bed without taking any pain medication (though, I ended up taking some when I woke up in the middle of the night and yelped as I tried to roll over from one side to the next).  I rejoice in the fact that, today, right now, I’m feeling good (both physically and mentally).

As I have mentioned in previous posts, Dr. Cameron’s physician’s assistant said that I should gauge my progression not day to day, but week to week (for those who know me, you will not be surprised when I say this is harder for me to do than it probably should be).  I can honestly say that I am better off this week than this time last week.  Perhaps there is hope that I’ll be able to spend a full work day next week.  How odd it will be to get up and go to work again, having not done so for going on 6 weeks.

Interestingly, one of the things I am looking forward to the most is having the opportunity to exercise again at the CDC fitness center.  Yes! Yes!  I could exercise at home (at least walking), but somehow it’s easier for me to do so when I go into work.  Perhaps it’s just habit after going to the fitness center for the better part of 2 years, but it also may simply be that I don’t have my Mom here to suggest we go on a walk together.  When I first got home, I tried walking with my dog, Sam, but he pulled too much on the leash and I haven’t tried since (“Yes, but Merle, you could walk WITHOUT Sam.”  — Okay, that’s just crazy talk)!

Thank you for all of you who have or continue to read my blog.  I cannot begin to tell you how much it means to me when people come up to me and tell me how much they enjoy reading the blog.  It’s not so much that I bask in the glory of my well written word (indeed, I had something of an argument today with Paige, a woman from church, who told me I wrote well; I said I was not sure I agreed with her assessment, to which she replied that she was an editor by trade and that YES, I wrote well!), but instead, I feel incredibly cared for that so many people take the time and effort to not only read my blog, but to tell me, either in person, via the comments on the blog, or via Email, about their reactions (both good and bad).

Lastly, I want to again put a link in this blog to my PurpleStride Atlanta website for those of you who are interested in donating.  At church, today, I thanked those people who had made donations already and Debra, the current president of my church, complained to me that I had not asked HER to donate.  I explained that I have not “personally” asked anyone to donate, but have merely done so via this blog.  In a show of full disclosure, though, I have to admit that I made that announcement, in part, in the hopes that new people might be drawn to my blog and consider donating.  As I said, I have a pretty modest goal ($500) but I would love to double or triple that; right now, though, I’m hoping merely to meet it.  :-)

More tomorrow.

Merle

Tired, but okay

Today was busy (though, in retrospect, probably not busier than previous weekends).  This morning my friend, Luis, and I co-taught a cub scout leader training.  Then Luis had asked me to take portraits for his sister-in-law’s wedding ceremony.  As it turned out, though, I ended up doing an “intimate” coverage (about 3 hours of photography).  Luckily, I was able to sit down a lot and take it (generally) easy.

The kids are currently watching Monty Python and the Holy Grail and, while I normally find the movie amusing, right now I’m too tired to enjoy it.  Thus, I will end this post short and say good night.

Merle