I’m Not Dead Yet (I.N.D.Y.)

Well, the chemo treatment on Wednesday was less than optimal.  It started with taking an inordinate amount of time to find a parking space in what has to be the worst parking garage IN THE WORLD.  I drive a Scion Xb; not what you would call an overly large car.  In fact, it looks small next to almost any other vehicle (with the exception of, perhaps, a Mini Cooper).  There are parking spaces in the garage at Emory Hospital marked for compact cars and, if I do it JUST RIGHT, I can just barely get my itsy, bitsy car in between the marks identifying parking spaces.

Having dealt with the parking, I made my way into the Ambulatory Care unit and signed in to have my labs drawn.  My appointment was for 2p (I got there at 2:10p — I didn’t expect it to take so long to find a parking space; did I mention I hate the parking garage at Emory??), but they were not able to get me back to access my port and draw the blood until 3:20p.  Thank goodness I had my PSP with me (I watch movies on it while I’m waiting).  Once my blood was drawn, I sat waiting to be called back to the chemo bay (another 20 or so minutes of sheer joy).  I got in and situated and then I waited…and waited…and waited…Actually, Nurse Jane had told me that, since my blood was drawn so late, that it had to be analyzed over at the hospital (and that I should consider getting to the hospital earlier to have my blood drawn — grrrr….).  The good news, I guess, was that it didn’t take the hour that Nurse Jane suggested it would take and I was soon being pumped full of poison (and getting nauseous).  I got out of the hospital around 5:30p or 5:45p.  One more down — 4 to go!

As has been the case previously, I’m more tired yesterday and today than I have been prior to chemo, but I don’t feel quite as worn out as I did last treatment.  My nausea is quite as bad this time round either, which is ALWAYS a good thing.  Thank goodness, too, as I am looking forward to eating the chili I’m going to make for the superbowl party we’re having at our house on Sunday.

On the plus side, my mother has come down to visit with us and it’s nice to have her around.  The kids are excited to see her (though, the displayed excitement is inversely proportional to the child’s age — let’s just say that everyone at the airport on Thursday knew that “Granny” was here to visit thanks to my daughter).

Also on the plus side is my continued participation in Wood Badge.  To remind you all, Wood Badge is the ultimate in training for scout leaders.  Last year I participated as a student and will get my beads (the outward indication that I successfully completed the requirements for the course).  Tomorrow also begins my participation in Wood Badge from the other side; I am part of the 2009 training staff.  It is an honor to be asked to participat and I am excited to do so.  Of course, those who know me probably won’t be surprised when I say that there is part of me that wonders whether I would have been selected to be on WB training staff had I not had cancer?  Regardless, I’m there and I’m going to do enjoy my time on staff and do my best in that role.

One of the things that I enjoy about my photography is the ability to look at things differently than other people.  Case in point, while traveling a couple of years ago, I had the opportunity to visit a lighthouse.  I climbed the circular stairs up to the beacon and looked out the window (and even took some pictures), but before heading back down, I looked over the railing of the spiral staircase and took this picture.  (Click on the image to see the larger version.)  More, soon!

Merle

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It’s been a while since I posted, but I figure the day before chemo is as good a time as any.  I continue to feel generally okay.  In fact, I was having lunch with some friends today and one said that I looked as if nothing had changed about me.  That, in many ways, sums up how I’m feeling at the moment: for all intents and purposes, I really do not feel any different than I did before last April.  The biggest impact of my cancer right now is the effects of the treatment, and, after March, I won’t even have that (because I’ll be done with my treatments — woo hoo)!! That begs the question, what WILL we do to celebrate this particular milestone?  Do I smell Tumor-palooza 2??

I do think there is a certain sense of uncertainty that continues to plague me at times.  It’s very hard to feel generally well and know that I have cancer.  I mean, I felt this way before my surgery, too, but back then, I still had the tumor, which, even though I couldn’t feel it, was a reminder of my cancer.  As I have said, previously, I may be cancer free right now.  The problem for me, though, is that I am not comfortable with “may.”  My angst right now is mostly about not knowing, which anyone who knows me would not be surprised to hear.  This, more than anything, is what I will be dealing with moving forward.

How about we revisit some of my resolutions? Exercise more regularly — well, I’m getting up early and going back to the gym.  I am not lifting weights (yet), but I have been exercising on the treadmill; I even tried running on Monday.  Last year, when I was exercising regularly, I was running 3 miles on the treadmill and THEN doing some additional cardio on an eliptical (or lifting weights).  At an intellectual level, I understand that I haven’t exercised regularly in nearly 8 months and that it will take time to build up stamina / endurance; emotionally, it sucks — I should be able to pick up where I left off.  Oh yeah, and what’s up with all this muscle soreness?  Take one picture a day. Well, um, not so much.  It’s not that I don’t want to take pictures every day, but with everything else going on, I often find it difficult.  Thus, I’m modifying this resolution a little bit. Instead, I will TRY and take a picture as often as possible, but when I cannot, I will post a picture that I have taken in the past.  There are lots of pictures I have taken, so I shouldn’t have a problem finding examples.

With that in mind, I present the picture choice for today.  As I have mentioned previously, one of the things I do on the side is wedding and portrait photography.  Not all members of the bridal party stand on two feet.  Several of my clients have included their pets in the wedding; the picture of Fox to the left demonstrates the extremes to which some people will go to include their pets.  Fox was less impressed with his outfit than his owners.

Until next time.

Merle

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As I sit here, I can see a pile of EOBs that is easily 2.5 inches thick.  I can honestly say that they are not ALL mine, but I do have to claim a large number of them.  We are in the process of figuring our taxes and it turns out that our family had over $160,000 in medical costs in 2008.  On the one hand that is an extraordinary number (given that prior to 2007, we never even had enough medical expenses to do an itemized deduction.  On the other hand, that number is not nearly as high as I had expected when I was first diagnosed with cancer and found out about having surgery.

As I have said elsewhere in this blog, thank goodness for health insurance.  I cannot even begin to imagine how we would have dealt with this years medical expenses had we not had good insurance (even if they are screwing with us in terms of paying for my radiation treatments).  As we figure our taxes, however, I can say that one “benefit” of having this cancer is that we will be getting a larger than usual refund; even though the insurance paid for most of the medical bills, we did end up spending close to $20k out of pocket.  All in all, though, I would rather have not had cancer and dealt with a smaller refund.

One bright spot in all of this is that I am feeling well enough these days to begin thinking about re-starting, in a very limited sense, my photography side business.  I am working with a colleague to revise my business website and I am slowly thinking about advertising, again on a limited basis, to do some wedding and portrait photography work.  My biggest concern about doing so, though, is the possibility of my committing to a wedding and then getting sick again.  With that in mind, I am thinking about starting to go to networking meetings with other wedding professionals (including photographers) in the area, so that IF I were to book a wedding and IF I were to get sick, I would have a network of professionals on which I could call for backup.

With that thought in mind, I leave you with an image I took out in my backyard.

Merle

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Much of today was good, but toward the end, I developed the grumps.  I am not grumpy at anything in particular, but just feeling blue.  Part of it, I think, tracks back to the fact that the mild nausea came back.  It’s times like this that I just feel tired from feeling sick all the time. I’ll be better later, so don’t worry about me.

So far, I have introduced you to my two sons, but even though you have seen pictures of her before, I wanted to re-introduce you to the princess of the family, my 5-year old daughter.  As I am sure other girls with big brothers, my daughter is an odd mix of “girly girl” and tomboy.  Essentially, she loves to play dress up, but is equally likely to take a flying leap on top of you.  Despite her angelic look here, my daughter has a need to be in charge.  For example, when she is picked up from pre-k, my daughter calls for all the girls in the room to stand up for one last group hug.

More tomorrow.

Merle

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It’s hard to imagine that anything else happened today other than the inauguration.  As I am sure was the case in other businesses, the computer systems at CDC were running particularly slowly, presumably attibutable to all the people in the building streaming the video of the festivities.  It is not often that people are able they were “there” to see such an historic event.  Whether you voted for him or not, there is something special about seeing the first African American sworn in as the 44th president of the United States.

On the other hand, it’s also a sobering time when even my younger son is aware of the risks that President Obama faces.  On a ride back from scouts last night, my younger son talked about what might happen if Obama lives through his first term in office.  It turns out our school system taped the inauguration, to be shown at 2p this afternoon.  Why?  Because there was concern that there might be an assassination attempt (and the school wanted to be able to prevent exposing the kids to such images if they occur).  It makes me sad that an 11 year old has to deal with the realities that there are people who would do such things.

On a positive note, my nausea seems to have disappated and my appetite has come back.  I hope this is not a sign of how long it’s going to take me to recover from treatments moving forward.  As my friend Debra would say, though, now is not a time to worry about what may be.  Actually, she’d say something like, “Don’t borrow worry from tomorrow” but that’s more profound than I feel at the moment.

Which brings me to the next installment of “Members of the Hamburger Familiy.”  Let me introduce my older son.

Of the picture to the left, what bothers me most is not that he looks so serious, but that you can easily see the growth of hair along his jaw line. If I took the photograph straight on, you’d similarly see what looks like dirt on his upper lip.  I have enough difficulty dealing with him being a teenager; I’m no where near ready for him to be an adolescent (even though he is already in middle school).

I included the picture on the right to give you a better sense of what my older son REALLY is like.  For those of you not in the know, the device in his hand is a Nintendo DS Lite, which may as well be the Holy Grail, if one were to judge based on how often it is in his hands (I think he was also watching ‘Dirty Jobs’ on the TV at the same time).

That might seem like a lot of stimulation, but my son has Asperger’s syndrome (high functioning autism) and his social / emotional development is delayed (he’s 13 and has more in common with our 5 year old daughter than our younger, 11 year old son).  Thus, in many ways, the DS is a security object (like a security blanket, but with more circuitry).  When we can convince him to put the DS down, he goes to karate (he is also a red belt) and attends weekly scout meetings.

Despite his delay, though, my older son has a incredible wit and sense of humor and is very bright. No one ever taught him how to do multiplication, but when he was in preschool, we pulled into a restaurant that had a sign that said it was open 24 hours a day / 7 days a week and before we could finish parking, my older son announced that the restaurant was open 168 hours / week.  When in elementary school,  he once told his teacher it was raining puppies and kittens when it was just drizzling out.  But he is generally very literal.  When he was younger, if we told him we would be home in two minutes, he’d count the seconds and would get upset if we got home before or after 120 seconds. As a result, we’d have to either take an extra lap around the neighborhood or drive really slowly down the street to avoid a tantrum.  He is better now, but it has been an interesting journey watching his development.

More tomorrow.

Merle

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My wife and I were sitting watching TV last night when the news came on and talked about the Sunday service at Ebenezer Baptist Church, the church at which Martin Luther King Jr. had preached.  In lieu of the inauguration tomorrow, I would expect the worship service at Ebenezer yesterday was particularly meaningful.

For many people, today is an opportunity to celebrate the teachings of Dr. King, some of those people might have decided to march in one of the many parades going on today (several members from UUCG are marched in an MLK day parade here in Atlanta in support of Troy Davis).  Yet others answered Barak Obama’s call to service today.  More than 12,100 service projects (e.g., delivering meals, refurbishing schools, being a mentor, etc.) are taking place across the country, prompting those that participate to treat MLK Day as “a day on, not a day off.”  I on the other hand, used today to spend time with my wife, enjoying each other’s company while our various and sundry children were off playing.

I’ve had to take things kinda easy the last couple of days.  Every time I feel as if I am getting over my last chemo treatment, I find myself getting a little nauseous.  For whatever reason, the effects are lingering; I’m sure I’ll be fine in a bit.

Which brings me to the picture for today.  As I have said here, of my children, my younger son (the middle child) often seems to have the hardest time dealing with my being sick.  My younger son spends a lot of energy (mostly) helping to take care of his little sister and defending his older brother.  A lot of stuff for an 11-year-old to have to deal with.

Luckily, he has many other outlets to express himself.  This picture was taken earlier this week at his Winter concert.  In addition to playing the bass in the 6th grade concert band, he also participates in boy scouts (he’s currently a Tenderfoot, but he is very close to completing his Second and First class rank requirements).  In addition, he often helps me as a den chief in the cub scout Webelos den I help run.  In addition to these activities, my son is a red belt in Kenpo Karate and enjoys attending the youth group meetings at Eastminster Presbyterian Church.  As busy as this all sounds, though, he has quite a bit of free time, and he spends that hanging out with his friends or playing on the computer / Wii.

More tomorrow.

Merle

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Okay, I grew up in the northeast and I would scoff at those silly southerners who thought 50 degrees was cold and who just had a conniption if the temperature dropped below 40.  Fast forward to 2009 and I find that I am one of those southerners.  Now, I lost a significant amount of weight, so I can explain some of my sensitivity to cold temperatures by the lack of insulation.  The cancer, too, probably has something to do with my cold sensitivity, but here I sit in my house, with several layers on and fingers that are on the verge, I am sure, of freezing solid.

Indeed, right now, I am listening to the “plinking” of sleet falling onto the frozen ground.   Again, for those of you in the northeast, you would likely wonder what the big deal is with a little sleet?  Keep in mind that while you all have lots of plows that distribute salt for the roads, we here in the south have Billy Bob’s truck, to which we have attached a shovel (and Bill Bob Jr., sprinkling Morton’s salt while sitting on the tailgate.  The folks here don’t know how to deal with sleet, let alone snow or – heaven forbid – ice.  As a result, my family and I are hunkering down and getting ready to have a family movie night (we’re watching “Kung Fu Panda,” if you’re interested).

Last night a friend of my daughter’s invited us to her birthday party at an Indian Buffet.  It was a wonderful experience that made me wish I had my camera with me (a lot of the women and girls were dressed in traditional, colorful, and elegant Indian clothing that would have been wonderful to photograph.  I had expected as much, but decided to leave my camera at home (in a demonstration of my incredible restraint).  Unfortunately, I did not demonstrate quite so much restraint when filling my plate from the buffet.  As a result, my stomach is a little tender today.  That not withstanding, I am doing generally okay.

Now for those of you who don’t know my family, I am going to use the next several days of pictures to introduce you to them (in no particular order, mind you).  With that in mind, I introduce you to Sam (short for Uncle Sam) whom we adopted on July 3rd, four years ago.  He is a beagle / basset mix (which we have taken to describing as a ‘bagle’).  He has a wonderful disposition, which is required with this family, given the tendency of all my children’s tendency to display FULL CONTACT love.

Enjoy!

Merle

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Despite not having blogged in a while, I am, indeed, not dead yet.  I had chemo this past Wednesday (start of cycle 4 for me) and I am still in recovery.  I am still a bit fatigued, and a little nauseous, but otherwise, none the worse for wear.  It would seem that my body tolerates the once every other week schedule for treatment than it did the traditional 3 on, 1 off.  Though, in true science geek fashion, I asked the doctor about the impact on treatment efficacy of having the reduced level of medicine.  (I cannot recall whether I have written about this previously; if I did, please bear with me as I do so again).  Essentially, the doctor said that all the research on Gemzar as a treatment for pancreas cancer is based on the 3 on, 1 off schedule.  In short, there is no way to really know what, if any, impact having it less frequently has on the efficacy of the treatment.

I asked Dr. Kauh on Wednesday how much longer I would be on chemo.  He told me that he wants me to go through 6 cycles.  (For those of you not following along at home, 1 cycle = 2 treatments.)  As a result, I have 5 more treatments until I am done.  I guess that is good news; certainly, I will not miss having to go to the hospital every other week.  I then asked Dr. Kauh what happens after — after I’m done with the 6th cycle.  His response, as before, is we cross our fingers and wait.  For those of you who know me, I’m not good with the whole “waiting” thing.  I would presume that I will still meet with Dr. Kauh on some regular schedule, but who knows?  That’s the question I will ask next time.

I also have an abdominal CT scheduled for the beginning of February.  Though they are calling it a re-staging CT, the reality is that Dr. Kauh is following up with some concern expressed by the doctors at Jewish Hospital in Cincinnati.  To refresh your memories, I was in Cincy visiting with my in-laws when I started to have pretty severe abdominal pain.  Having experienced diverticulitis before, I recognized the symptoms, so I had my in-laws drop me off at the ER and I was checked out by the docs.  One of the tests they ran was to give me a CT.  Apparently, the docs in Cincy saw something on the CT that Dr. Kauh calls a “vascular blush.”  As he explained it to me, it may simply be a lack of coordination between the scan and the contrast going into my vascular system or something else.  Either way, Dr. Kauh does not think it’s anything to worry about, but I guess we’ll find out in February.  All my bloodwork is good and my CA19-9 is still low, so there doesn’t seem to be evidence of active tumor growth.  As I said, we shall see.

In the “Really Good News” department, I wanted to let everyone know that my father’s cancer does NOT seem to be back.  As I understand it, he had a PET scan in December that seemed to suggest that his cancer had returned.  My father went back and had some additional tests, including a CT scan, and the new tests and the CT scan came back negative.  His oncologist said (apparently) that he’s more likely to believe the CT scan results, so for now, my Dad remains cancer free.  What a big relief for them (and for the rest of us).

I have to admit that I have fallen down on the job with regards to my resolution to take a picture each day.  However, I will start that up this weekend.  So I will be able to post something at least every day (or so).  Bear with me and I’ll start to have some images for you soon.

Have a great weekend.

Merle

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So, I have a confession to make: I’m a liar.  In my last blog post, I said I would not watch the Barbara Walters interview of Patrick Swayze and, well, I did.  Initial impressions:

• Patrick looks pretty bad; more gaunt than I remember him.
• Barbara Walters asked some pretty stupid questions (e.g., “Do you think your smoking caused your cancer?”; “Do you have any idea how long you have to live, Patrick?”; to his wife, “Have you considered what life will be like without Patrick?”).  Despite being a contributing risk factor, there’s no way to tell what caused his pancreas cancer.  As he said, his smoking probably played a part, but that’s just an inane question; however, it was not nearly as bad as asking Patrick how long he has to live or whether his wife has thought about life without him.  Oy!
• Barbara’s questions were trite and basic.  This was the first Barbara Walters interview I went out of my way to watch.  Her reputation (I thought) is that of someone who is a good interviewer.  I thought her interview of Swayze was lazy and superficial.
• It *IS* impressive that he was able to work 12 hour days shooting his new series.  I know that when I was having my 5FU chemo (and even now with the GemZar), the medicine really knocks me out.  I sometimes have trouble making it through an 8 hour day in front of the computer, so it’s pretty impressive what Patrick was able to accomplish.
• Patrick must read my blog, because many of the things he said are things that I have written here (e.g., “Either get started living or get started dying”; you need to take it one day at a time and do your best to live life to the fullist).  In short, Patrick really didn’t say anything I haven’t either said or written in this blog (well, that’s not entirely true — I do NOT talk to ghosts or angels).
• Patrick Swayze is no Randy Pausch (more on this in a minute).
• I remain convinced (and saddened) that Patrick is allowing himself to be expoited as a means to increase viewership of his new series.  Yes the interview superficially covered topics other than his series, but a large portion was spent talking about his work on the series.  Now, I don’t begrudge him for doing so (the more people who watch his show, the more likely there will be a 2nd season — with or without Patrick), but it’s hard to take him too terribly seriously about his desire to raise awareness about pancreas cancer when he allows himself to be so exploited.  By the way, further evidence of his willingness to exploit his cancer: I heard a commercial indicating that Patrick was going to be on Larry King Live “Next Tuesday: Larry King talks to Patrick Swayze about his cancer”

Someone asked me, in response to my blogged intention of not watching the interview, what the difference was between watching Patrick’s interview and watching the Randy Pausch’s “Last Lecture.”  As I had expected, the interview was all about Patrick and his situation; what he is doing to live his life.  The Last Lecture was about doing what you can to inspire people through your actions.  In fact, if it weren’t for the powerful messages that Randy espoused, I think we would not even know that Patrick had pancreas cancer; perhaps we would know he had cancer, but we wouldn’t be terribly interested in the type.

How many people actually knew that Luciano Pavorotti died of pancreas cancer in 2007 (doesn’t count if you read in my blog)?  Did the mainstream media give much play to Steve Jobs being diagnosed with pancreas cancer in 2004?  The answer to both, I think, is ‘No.’  Randy’s lecture, however, was so powerful that it not only inspired people to try and help others, but it moved them to share the story with others; eventually, the video of the lecture went “viral” on the internet and Randy Pausch became a household name and people became aware of how deadly pancreas cancer is.  It was only then that the society as a whole began to hear about this person and that person being diagnosed with pancreas cancer.

I admire Randy Pausch because of his desire to impart his knowledge / passion to his students and colleagues.  When he was diagnosed with pancreas cancer, Randy went out of his way to see what he could do to make a difference; he became an advocate.  In his blog, Randy said:

Jai & I have been trying to see how we can use my D-list celebrity … for good. I’m working with both the Pancreatic Cancer Action Network (PanCAN) and the Lustgarten Foundation, doing things like videotaping public service announcements and meeting with lawmakers up in Washington, DC. One reason pancreatic cancer is such an “orphan” disease is that we don’t have many long-term survivors to lead marches on Washington. So I’m trying to sort of become the “Michael J. Fox of pancreatic cancer.”

While I would, for very selfish reasons, prefer that Patrick and Steve Jobs did more to be advocates for pancreas cancer — to raise awareness so that more funding would be funneled to pancreas cancer research.  I certainly wish I had the ability to take up Randy’s fallen mantle.  Having said that, I do not think badly of Patrick and Steve for NOT being advocates.  That is their choice and I respect it.

I should say that, in writing this, I just read on a couple of sources, that Patrick has been hospitalized with pneumonia — not uncommon when chemotherapy compromises one’s immune system.  Whether I agree or disagree with how he uses his celebrity, I hope that he is able to recover from the pneumonia — I wish for him to have as much time with his wife and friends as possible.

I remain grateful that, in response to people asking me how I’m doing (today), I can honestly say that I am doing well.  Every two weeks I have chemo and feel crappy for a couple of days, and I’m still fighting the vestiges of a cold, but otherwise, I remain seemingly as healthy as I was before being diagnosed (okay, not entirely — I still have to take my pancreatic enzymes to help digest my food).  I am back to a generally normal (busy) schedule: tonight (Friday), I was at the karate school, helping to teach.  Tomorrow I am driving to TN to go caving with a group of boy scouts.  Sunday, after getting back home, I have a cub scout leader meeting and then teach OWL at church.  Other than that, I have plenty of free time.

So for the time being, don’t worry about me.  I’m doing well, but I continue to appreciate everyone’s support, love, and friendship.

Merle

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I’ve been told by no less than 4 people that Patrick Swayze is giving his first interview since it was discovered that he had been diagnosed with pancreatic cancer.  Tonight (10p), on ABC, Patrick (he and I are on a first name basis ’cause of our shared illness — I hope he doesn’t mind) sits down with Barbara Walters to discuss his experiences with pancreatic cancer.  The question people have been asking me is whether I will watch or not.

I don’t think I will take the time to watch the show; I just don’t feel like it’ll be particularly helpful for me.  Whether Patrick is able to work grueling 12+ hour days while filming his new series has little to do with whether I am able to make it through the day at work (which, I’m pleased to say I am able to do).  Call it the cynic in me, but I find it suspect that the interview is airing just a week before his new series.  That is, I wonder whether this is more about getting Patrick’s name back into the media so people will be more likely to check out his new series.  If this is the intent, that’s fine; however, I would be more inclined to watch if I felt that Patrick was going to be more of an advocate for pancreas cancer.  I guess I’m just not enough of a fan to want to know the story.

I do take something away from Patrick’s battle with pancreatic cancer, though.  He was diagnosed with Stage 4 PC (meaning that the tumor had metastasized to another organ, in his case the liver).  Doctors did not expect Patrick to live beyond 6 months and here, more than a year later, he is still doing his thing.  This simply highlights for me that with this (as with all disease) an individual’s chances of surviving beyond a certain amount of time is 0 or 1.  Who knows how long any of us have?  What’s important is that we continue to live our lives.  We need to define ourselves by who we are and not whatever condition we may or may not have. 

Right now, my cancer is relatively unobtrusive, so I am more likely to define myself as a father, a husband, a scout leader, a karate instructor, a sex educator.  Who knows, I may not even have cancer anymore (my bloodwork suggests that I do not currently have any detectable cancer).  So, while I wait for the next test, I continue to work as much as I can; spend time with my family (who knew the Wii Fit would bring us together as much as it has); function as a leader in both the boy scout and cub scout units with which I am associated (in fact, I’m going caving this weekend); teaching karate (I’m so looking forward to getting back to the school tonight, as the school has been closed for the last 2 weeks and I miss it); and teach adolescents at my church about health sexuality (last week we talked about masturbation).

Take a moment to think how you define yourself and then ask yourself if you are living your life in accordance with that defintion.  Maybe, in this time of resolutions, you might find something to change or adjust. 

Merle

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