I invite you all to have a great big sigh of relief!

I promise that I will finish the F-ing buses story this weekend AND post pictures from TumorPalooza 2.

Thanks for your support and prayers.

Merle

My friend explained that as she and the truck drove along the road, there was someone walking on the sidewalk along the road.  The next thing she new, the rod on the truck hit the back of the person’s head.  The person was (I think) declared dead at the scene.

Unlike my other “bus” stories, this one does not have anything to do with me, but again underlines the tenuous nature each of us goes through life.  As many have said to me over the past 2 years, none of us know when / how we will die.  I would venture, however, most of us do not leave the house thinking, “Today is the day I might die.”  Instead, people go out with the general belief they will NOT die.  I do not think the person described above was thinking about the possibility that they would get hit by truck.

To a certain extent, I spend each day with the knowledge that my cancer MAY (and statistically will likely)  come back.  In essence, I am aware that I may get hit by a bus, but I also have the knowledge that I (along with other people with potentially fatal conditions) have a little extra “bonus.”  As I tend to say when people give me the “you may get hit by a bus” argument: Oh great!  Now I have to worry about dying from cancer AND getting hit by a bus.

As, I said last time, this all comes down to taking advantage of the time we have now!  Carpe diem!   Sieze the day!  There are so many quotes that related to this notion.  One that I have talked about previously is attributed to James Dean:

Dream as if you’ll live forever; live as if you’ll die today!

As I get ready to celebrate the 2-year anniversary of my surgery, I have to admit that I have gotten complacent.  I have been off treatment for my cancer so long that I have taken for granted that there will be a tomorrow (there better be, in my case; I gotta party to host in couple of weeks).  The question we all have to answer is: What WILL we do to make sure we really LIVE today!

Part 3 soon…

Merle

Whenever I would have conversations about how I was doing and I would talk about the statistics (because, yes, I’m part of the nerd herd),  people would inevitably point out that none of us know when we’ll die (reminding me that any day, anyone could step outside and get hit by a bus).  Great!  Now I have to worry about dying from cancer AND getting hit by some motor vehicle.

In recent weeks, I have been “struck” by 3 such buses.  Over the next several posts, I will describe each of the different stories (yes, I’m spreading it out over time because people still tell me I’m not blogging enough — there’s nothing wrong with milking a productive blog idea).

The first “bus” hit during the 4th of July weekend.  While my family and I were at the reunion, I found out that a good friend of the family had been diagnosed with a brain tumor and had had surgery.  While I probably met him before then, I first recall meeting David when I was a new Cub Scout leader (my boys joined the same pack that David’s son was in).  Being an Eagle Scout, David seemed to know everything about being a scout leader; now that may have been out of proportion to reality, as I knew NOTHING about being a scout leader, so a damp sponge new more about it than I did.

David was one of the first people to really get me excited about Dutch oven cooking.  When his son “crossed over” to Boy Scouts, I took up the mantle (or should that be ladle) of being the pack Dutch Oven expert.  David and I continued our friendship over the years as we seemed to meet up at various scouting events and working together at various training events.  Every time I would see him, David always had a smile on his face and a cheerful word to share (even when we were trying to put together a Dutch Oven cooking demonstration in the pouring rain). 

When I was diagnosed with pancreatic cancer 2 years ago, David and his wife were always willing to help provide support (food, transportation, etc.) when we needed it.  I want to say that I am glad that MaryBeth and I have the opportunity to return the favor, but that sounds too close to saying “I’m glad David has brain cancer.”  Let me just say that I am glad that I am healthy enough that I can provide as much support to David and his family as they provided mine.

As I mentioned, David has had surgery to remove the tumor and is currently undergoing rehab.  MaryBeth and I visited with him one evening last week and he recognized us and we had a pleasant (if not labored) discussion.  David told us he gets tired at night and that by 7p his brain is just not firing on all cylinders (okay, he didn’t use that metaphor, but that’s the gist of what he said).  He had some speech production difficulty, but I am uncertain whether that was from being tired because of rehab, damage done during the surgery, a combination of the two, or some other reason.

As far as I know, there were no warning signs that David had a brain tumor.  As with my diagnosis, out of nowhere David’s life and the lives of his family have been changed forever.  I do not know what his prognosis is:  he may be able to fully recover from the surgery.  It may be that they will have to adjust to a “new normal” (a phrase bandied about at the Advocacy Days event — cancer patients want their lives to be “normal” again and what some need to do is accept that what is or is not normal has changed for them as a result of their cancer).  He may not survive. 

David was stepped off of the curb and most certainly was hit by a metaphorical bus.  F-ing buses!

For those of you interested in how I am doing — I’m (still) not dead yet!  I am under some stress at the moment (that’s a bus for a different day), but physically, I am generally okay (just the normal aches and pains of an out of warranty 44 year old).

More later!

Merle

So about the title, the other day I was cruising along the Internet and I decided I’d go check out the Johns Hopkins Pancreatic Cancer discussion board.  I remember that going to the discussion board when I was more actively dealing with my cancer was less helpful than I would prefer because most of the stories I saw were negative.  People were dying.  People were responding badly to treatment.  People were despondent because there was nothing to do. 

I know that all of these response are thoroughly valid.  The only known possible cure (surgery) is only available to 15-20% of the patients.  For the others, there just really isn’t any proven treatment (which is largely why I have become an advocate for PC research and education).  That’s why I thought I would take a moment to post what I thought was a hopeful message that people can survive PC.

Well, most people were very supportive about my post and providing congratulations and prayers for my continued success.  The second post I read, though, was from someone who was not particularly pleasant.  Essentially, the poster pointed out that the majority of people with PC cannot have surgery and where was the hope for them and then said my post seemed to be critical of people who cannot have surgery (something like, “You’re saying that people who cannot have surgery are not trying hard enough.”)

I get that the poster likely has or know someone who has PC and is not a candidate for surgery.  As I said earlier, I understand the anger and frustration.  I just wasn’t ready for someone to so completely misunderstand my post (one of the challenges of electronic communication).  But if I have learned one thing during my journey it has been the importance of LIVING life. 

For a long time, I was letting the cancer define who I was.  I spent a lot of time thinking about what I would miss in the future and not a lot of time thinking about what I could be doing now.  That’s a natural reaction.  The challenge is moving through those steps of grieving quickly enough that one doesn’t miss the opportunities and experiences they have now.  If my cancer comes back, my family and I will deal with it then.   We will not, however, spend too much time worrying about it and certainly not to the extent that it interferes with other activities.  I go to work everyday, I continue to teach karate, I am getting more active in the Boy Scouts.  The fact that I am a cancer survivor is just one facet of who I am (and a facet that is largely irrelevant to my daily life, except that I have to take enzymes at meal time).

Well, this is much more wordy that I expected.  Thanks for bearing with this blathering.  More later.

Merle

The long and short of it is that my scans remain unchanged and my bloodwork is still fine. (I have mentioned that I like Dr. Kauh’s sense of humor. Well, it turns out his PA has a similar sense of humor. She suggested that Dr. Kauh come in to give us our results, since we had said in the past that we knew it would be bad news when HE came in for the checkup. In fact, Edie – his PA – came in and asked if we were freaked out when he came in. I was amused and could appreciate that kind of humor.)

My time at PanCan’s Advocacy Days was interesting. I heard survivor after survivor talk about being “cancer free,” yet, I never feel right using that language. As you know, Dr. Cameron (my surgeon) could not get all of the tumor, so there is a mass of cancer cells still in me. Since they have not been growing, we presume that they are dead, but who knows? Honestly, though, I think that even if there were no tumor left in me, I would still be hesitant about saying I’m “cancer free.”

We know that 70-80% of the people who have a successful surgery have a recurrence (usually within 2 years, but out to 5 years). So even when the surgeons believe they have gotten all of the tumor, somehow the cancer comes back. No one knows what will happen in my case (and worrying about it will not help).

I am pleased to say that I was pretty relaxed about this round of tests. As I have said here, I think a lot of that was just having a bunch of stuff going on. Regardless, no stress is a good thing.

The plan is to have another set of scans in September and, presuming they are also unchanged, I will be scheduled to have my port removed and I will skip to a longer follow-up period (either every 4 or 6 months; Dr. Kauh keeps changing his mind). All of this is good news. Things are good right now.

Cheers,

Merle

In just sheer numbers, pancreatic cancer is the 10th most common cancer in the US. It is the 4th leading cause of cancer-related death, and it has the lowest survival rate (6%) of all the deadly cancers. We were shown graphs illustrating the amount of funding for a particular type of cancer and then the related survival rates; there is a direct, positive correlation between the amount of funding the government puts toward research on cancer and the associated survival rate (at least for the top 5 deadly cancers).

I have some understanding of what to expect and have been coached on how to counter arguments why a particular legislator cannot support the bill. For better or worse, I head to the Hill tomorrow and, I have to say, I’m excited. I really feel like being an advocate in this way may help make a difference.

On the flip side, I went through a whole host of unexpected emotions today. I met several people who are 5, 8, 10, 12 years survivors and I wondered, “What right do I have to be in this group — I’m only a 2-year survivor?” I realize this is completely irrational, but there was a time today where I really questioned if I could be useful at this event. I got over that by the end of the day, but I was very surprised at my response.

I’ll write more tomorrow (or Wednesday), but for the time being, here is a picture of the survivors at the training (there were about 480 people total at the training — the vast majority were there because they had lost someone to the disease).

Have a great evening (all 4 minutes left of it).

Merle

PanCan had a bunch of photographers there, so they are going to put a slideshow together of the pictures they took.  When they do, I’ll pull out the pictures of me, but in the meantime here are couple:

Me with Jai Pausch and her sons

Me with Jai and her sons.  When I met her at the walk this morning, she took one look at my shirt and said, “You must be Hamburger!”  (I get that a lot.)  There were lots of people there supporting Team Pausch, but Jai did take some time to chat with me a bit, in between keeping an eye on her sons.

Roger Magowitz and me

Roger and his wife (Jeanne) have been wonderfully supportive of me.  Roger has put a lot of effort into raising funds and awareness about Pancreatic Cancer.  I have mentioned them before: Roger is the man who puts together the celebrity golf tournament in Arizona to raise funds.

One last picture.  Here is the pack I wore during the walk (I figured people would recognize me from the front because of my shirt; I wanted to give them something to look at from behind (…and get your minds out of the gutter).

That’s the TempurPedic bear, the Team Pausch flag and a button that says “Stupid Cancer.”

Thanks for checking in.  I’ll have another update from Advocacy Days Monday and Tuesday.

Merle

]]> http://www.merlehamburger.net/2010/06/purplestride-dc/feed/ 1 http://www.merlehamburger.net/2010/06/expectations/ http://www.merlehamburger.net/2010/06/expectations/#comments Sat, 19 Jun 2010 03:56:16 +0000 Merle http://www.merlehamburger.net/2010/06/expectations/ Well, I’m in DC and laying in bed trying to figure out what I am expecting from tomorrow’s event. In fact, I am doing what I can to ensure that my expectations about tomorrow are not overly ambitious.

There is a part of me that would love if Jai and/or the Magowitz’s said they would like to spend the day together hanging out and explore DC. But the reality is likely that both groups will have other activities on their plate for which I have no role.

It’s going to be great to finally meet these people who have been SO supportive of me through my journey; on the other hand, though, I would be lying if I said I was not hoping that it would blossom into more than just a meet and greet.

So here I sit, trying to keep my expectations in check. I will make sure to take bunches of pictures and try to have them posted tomorrow night.

Thank you ALL for the love and support you ave shown me over the last several years. I would not be in Washington, DC if not for you all!

Cheers,

Merle

I then head down to Radiology and sat…and sat…and sat. When they did call me back, the nurse seemed unsure what to do because I already had an IV. She also told me that she didn’t have any orders for my CT scan (and I had to wait while she asked the doctor to send another set of orders). I then got to sit in the fish bowl and drink my Barium Sulfate (which still tastes horrible).

…and then the fun begins. The CT technician was also surprised that the IV was not put in down in radiology and before we started my scan, he flushed the IV to make sure it worked (it did). The IV is used to inject a dye into my system that helps with visualizing my innards. Unfortunately, when the technician started the machine to inject the dye, I knew something was wrong.

As the dye went in, I began to feel wetness on my arm. Then I noticed that there was liquid dripping out…then it was dripping more…then the drip became a steady flow…then the drip began to turn pink…then when the dye was finished being injected, I noticed that the liquid dripping from my arm was decidedly red. I’m not sure what happened (and the tech swears that enough of the dye got into my system), but most of the dye dripped out of the IV and then I began bleeding. I don’t think I bled THAT much, though, the tech did cover the floor with a sheet, so I didn’t see how much blood was on the floor.

I do know that there was a whole lot of blood on my arm and the tech spent 2-3 minutes holding gauze on my arm as he wiped my arm with some kind of towelette (actually, several of them). He then wrapped my arm (tightly) with some bandage and sent me on my way.

The experience was not a crisis, but I am very happy not to go through that again. I will find out my results a week from tomorrow (Thursday). When I know, I’ll let you know.

Cheers,

Merle

Three weeks ago, the family and I went down to Sarasota for the unveiling of my father’s headstone (and celebrate my younger son’s birthday).  The week after that, we were at home, but occupied by scout stuff over the weekend.   This past weekend, the family and I took a mini-vacation to Valdosta, GA to visit Wild Adventures theme park.  Next weekend, I’ll be in DC for the PanCan walk; the weekend after that there is another family event.  Like I said, I have had a couple of things on my mind.

As I sit here waiting for my turn to have labs drawn, I look around the room and see many frail people, wearing masks, in obvious discomfort, looking dispirited.  It’s at times like this that I realize just how lucky I am.   I am not currently immuno-compromised.  I do not need to wear a face mask.  I am slowly developing my running endurance (though, I am not where I was last year).  I am lucky.  I am able to go to work and be productive.  I am able to be more involved at the karate school.  I have done more with my family, in the last couple of years, than I did in the 5 years before.  I am lucky.

My mom will be visiting us in August around the date of TumorPalooza 2 (when is that?  Oh yeah…AUGUST 14th!!), but she doesn’t want to purchase her tickets until I receive the results from today’s tests (because she doesn’t want to jinx me).  Today,  I was able to find a PRIMO parking spot in the world’s WORST parking garage; given the amount of difficulty I have had finding parking spaces in the past, I might think the ease with which I found one today was a bad omen (let me explain:   In the past, I have had a difficult time finding a parking space and my scans have always been “unremarkable” ; today it was easy — does that mean my scans will be “remarkable”?)

As always, I do not know what my future holds.  As my friend, Debra, has reminded me over and over again: the tests today will only tell me what is already there.  If the cancer is back, I will deal.  If the cancer has not returned, I will rejoice.  Either way, I will continue living my life to the best of my ability!

Thank you, as always, for your love and support.

Cheers,

Merle